The National Federation of the Blind
1800 Johnson Street
Baltimore, Maryland 21230
email: [email protected]
Marc Maurer, President
National Federation of the Blind
Michael Freeman, President
NFB Diabetes Action Network
Daniel B. Frye, Editor
Part I. Personal Portraits: Success Stories About Living with Diabetes and Blindness
Part II. Diabetes Basics: What Everyone Should Know
Part III. Secrets of Success: Managing Diabetes as a Blind Person
Get Connected: Support Groups Offer Connections That Count Listen
by Marilyn Brandt Smith
Evaluating Glucose Meters: Talk Is Cheap, but Access Is Golden Listen
by Connie Kleinbeck
Winning Strategies for Tracking Medicine When Vision Is Failing Listen
by Thomas Ley
by Eileen Rivera Ley
Accessible Meal Planning and Carb Counting Websites Listen
CalorieKing.com Wins the Crown
by Thomas Rivera Ley
Part IV. Continuing the Journey
Ask the Doctor: Understanding Diabetic Retinopathy Listen
by Dr. James T. Handa
Ask the Doctor: Control Your Cholesterol Levels for Better Heart Health Listen
by Dr. Peter O. Kwiterovich
Don't Drive or Don't Want To?
Home Hemodialysis May Be for You Listen Now (MP3)
by Thomas Rivera Ley
Take Care of Your Feet, and They Will Carry You for Life Listen
by Ann S. Williams
Part V. Resources
Diabetes can be difficult, especially if one lacks essential information about managing it. Blindness or vision loss can be all the more frustrating when one lacks critical know-how. So what happens when one is experiencing both diabetes and blindness? Where can one turn for answers? Where does someone with diabetes turn when he loses vision? Where does a blind person turn when she develops diabetes?
Bridging the Gap: Living with Blindness and Diabetes, a one-of-a-kind resource, provides the necessary link between diabetes and blindness, the facts about successfully managing diabetes as a blind person. The word “blind,” as used in this volume, refers to any significant degree of vision loss that a person experiences that markedly limits the ability to do things visually.
This five-part volume draws from articles originally published in the Voice of the Diabetic, a magazine that the National Federation of the Blind (NFB) published for twenty-four years that met the informational needs of blind people with diabetes. We begin with “Personal Portraits: Success Stories About Living with Diabetes and Blindness.” Readers of this book (particularly blind people who also have diabetes) need to know that they are not alone and that people everywhere are adopting a positive approach to coping with these dual conditions.
Next, we present “Diabetes Basics: What Everyone Should Know.” Few diabetes resources are available in accessible formats, so in this section we make sure that readers have access to necessary information. In “Secrets of Success: Managing Diabetes as a Blind Person,” we offer a wealth of wisdom developed especially for and by the real experts, blind people who manage their own diabetes. Seasoned diabetes specialists and rehabilitation professionals, as well as blind diabetics, will find this section enlightening and instructive.
In “Continuing the Journey” we share personal stories and important technical information from medical experts in the field. This should prove especially informative for those blind diabetics who may also be encountering concerns like dialysis, amputation, wound care, neuropathy, and gastroparesis. Finally, in “Resources” we gather a treasure trove of useful community-based resources for enhancing independence, many of which are free for the asking. We have even included sample jumbo print diabetes logs, available for the first time.
Bridging the Gap: Living with Blindness and Diabetes is unique. This new resource guide has been created by the Diabetes Action Network (DAN) of the NFB and has been designed with maximum accessibility in mind. It is produced in large print so that some blind people can read the print independently. But accompanying it is a disc that includes an audio CD recording of each article (in an MP3 version) along with an electronic text-only version. In addition, people can read this book online, where they can also find printer-friendly versions of each article.
If you serve blind diabetics, this book is for you too. Here you will find essential tools so that blind diabetics can independently manage their diabetes every day. Feel free to reproduce its articles to share with coworkers, diabetic patients, and clients.
Since 1985 the NFB Diabetes Action Network has educated, empowered, and inspired blind diabetics to live their best and fullest lives. The DAN encourages its membership, advocates for accessible diabetes technology, and does everything it can to put essential information about diabetes into the hands of blind people. This Federation division fosters positive attitudes and offers practical advice to blind diabetics, family members, rehabilitation specialists, and healthcare professionals working in the field of diabetes. We encourage you to join the DAN and benefit from its peer support and advocacy efforts.
When the NFB established its diabetes division, most of our members were type 1 diabetics who had lost their vision after years with the disease. Back then far less was known about diabetes, and hardly any tools existed for reliably measuring and controlling blood sugar.
Today our members also represent two other quickly expanding demographics, most of whom have type 2 diabetes. Some have lost or are losing vision from type 2 diabetes; others have been blind for some time and have mastered independence as blind people, but like too many other Americans today, they have developed type 2 diabetes as experienced blind adults. Whether you were born blind or are blind from other diseases such as diabetic retinopathy, age-related macular degeneration, or glaucoma, you can turn to the NFB Diabetes Action Network for both accessible diabetes information and tips for managing diabetes without vision.
Special thanks go to the generous donors that have helped fund this important work. They are GlaxoSmithKline, the Diabetes Research and Wellness Foundation in Washington, D.C., and the St. Agnes Hospital Foundation in Baltimore, Maryland. Without their support this critically needed resource would not be in your hands today. Enjoy reading Bridging the Gap: Living with Blindness and Diabetes.
by Ed Bryant
From the Editor: The following article first appeared in the Voice of the Diabetic, Volume 10, Number 4, Fall 1995, published by the Diabetes Action Network (DAN) of the National Federation of the Blind. It was updated in March 2009. Ed Bryant has been one of the formative figures since the DAN was founded as the NFB Diabetics Division in 1985. When Karen Mayry became too ill to continue as president of the division, Ed unhesitatingly took on that task in addition to editing the quarterly publication, which he had done from its beginning. Here is the story of how one man found the organization that shared his personal philosophy:
Diabetes is a sneaky disease. It usually takes fifteen to twenty years for chronic complications to be noticed, and many can stem from the disease. Here are my story and some observations about blindness.
Fifty years ago I was diagnosed with early-onset diabetes. After the initial shock of discovering I had sugar diabetes and learning how to give myself insulin injections, my lifestyle returned to one of a very busy and active teenager. The only differences were that I had to give myself one shot a day and watch my diet. Eating a lot of sweets could cause problems.
At first I did not adhere to good diabetes practices. I was not good at watching what I ate and drank. I did what my peers did, and I felt just fine. I was not worried about my diabetes. Then, after I'd had the disease almost sixteen years, I began to notice blurred vision. It was like looking through a smoky haze.
At first I didn't pay much attention. In St. Louis, where I was administrative manager for a corporation specializing in child photography, my job required a lot of paperwork. I assumed I needed to see an eye doctor and get glasses. But I didn't get glasses, and with time my vision deteriorated. Finally, admitting I'd been foolish, I saw an ophthalmologist, who diagnosed proliferative diabetic retinopathy. I had no functional vision in one eye, and the prognosis for the other was not good. The doctor recommended I see a diabetes specialist and get my disease under good control. Then, maybe, he could give me laser treatments.
I immediately saw a physician who specialized in diabetes. I worked to regulate my disease far more closely. In time, with my diabetes under good control, the vision in my functional eye became substantially better. I was elated. I could see well enough again to do almost anything. Working as a photographer, I had driven in every state in America, and of course I thought driving a car was essential to everyone's lifestyle. Now I could even drive my little blue sports car again.
When I revisited my ophthalmologist, we decided to try vitrectomy surgery in my bad eye. With luck the surgery would restore some of my vision. It failed, as did a second vitrectomy on the same eye several months later. I knew that by law I was legally blind, but I didn't consider myself blind since I had so little trouble getting around and doing what I wanted to do.
During the daytime my only troubles came while facing direct sunlight. My main difficulties were at night. Unless an area was well lit, I had trouble seeing where I was going. Late one evening I started walking home. The area was well lit, but as I progressed, there were fewer and fewer street lights. Soon I could barely see my path. At a wide point in the sidewalk, landscapers had planted a preposterously huge tree right in my way. I was walking at a pretty good clip―I ran into the tree. After my very close encounter and a few frank words to that tree, I walked the rest of the way home. As I look back, I can only laugh. If I'd had more wisdom, I'd have been using a long white cane. Then I could have avoided both possible injury and the tree.
Several years later my employment was phased out, and I found myself out of work. I moved to Columbia, Missouri, home of the University of Missouri. I would work out my future from there. I had been offered upper middle-management positions with several different companies with very lucrative salaries.
As soon as I told prospective employers I was legally blind or that I had a severe eye problem, their offers vanished. The jobs were either no longer available, or offered to me at wages less than half their original offer. It didn't matter that I could do the work proficiently. My experience in business administration and public relations didn't count. When employers heard the words "blind" or "legally blind," they immediately assumed I was incapable of doing the job.
I was out one night in Columbia when a friend accidentally poked me in my good eye. I felt excruciating pain. My ophthalmologist recommended a retina surgeon in Memphis, Tennessee. The specialist told me the eye was in bad shape; however, vitrectomy surgery might help. Once again I underwent surgery. However, it allowed me to see only in a very limited way.
In the following few months I lost my vision completely. I was totally blind. I lived in an apartment, and I really had no way to get around. After having managed my personal business and being independent for years, I found it very difficult to let anyone help me. My parents offered to build an extra room onto their home so I could live there. Although the offer was loving and gracious, I would never consider such a thing. I'd always been an independent person, and, if I'd moved into my parents' home on a rural route, I would have been more or less trapped, since the area had no bus service and the cost of a taxi to and from the country was very high. I couldn't expect my parents to provide my transportation everywhere. They had their own life.
I was an active person, used to traveling independently. I decided to keep my apartment. I had no wish or reason to become dependent on others. I knew I was perfectly capable of doing the things I'd always done. My biggest problem was not being able to draw up my own insulin. For three or four years my mother drew up a seven-day supply every week until I learned of devices that allowed blind people to draw up their own insulin accurately. Such a device allowed me to self-manage my disease.
My blindness made me angry and frustrated. Like many other newly blind folks, I felt trapped and limited in what I could do. The fact was that I was blind. But it seemed unreasonable to give up and abandon independence simply because I couldn't see. I began to realize that in actuality I wasn't limited. I could function very well in my apartment. I knew where everything was. And with a little ingenuity I discovered I could cook and do anything in the kitchen. Every day I discovered alternative techniques that allowed me to do things just as well as I had done them when I was sighted. I was learning how to help myself.
I telephoned Missouri's Bureau for the Blind and asked for a white cane and someone to show me how to use it. After waiting two or three weeks, I got angry. How could I be independent if I had to stay in my apartment? So one day I took a hatchet and a kitchen broom and went outside, using my broom as a cane. I headed for a spot where I knew a little tree was located, and I chopped off a long branch. Returning to my apartment with my prize, I chopped and whittled until the branch developed into what I called a cane. I didn't know anything about cane dimensions, but I figured it should be about as tall as I was. I ended up with a makeshift cane about six feet long.
I went for short walks. I chuckle about it now, but I was probably a danger to society with my tree branch cane; I was certainly a danger to myself. The end of the cane kept getting stuck in the ground, and I came close to rupturing my midsection on many occasions. Even though my cane was homemade out of a tree branch, it helped me to get around the apartment complex and many nearby roads. I had all the confidence in the world.
At last the man from the Bureau for the Blind arrived, bringing me a better cane. After he left, I went for a walk. The top of my new cane reached somewhere between my navel and breastbone. I had to bend over as I walked with it, and it was obviously too short, but I could do a lot better with it than with my tree branch. I knew where the city bus stopped, so I took a bus downtown and spent the afternoon exploring.
I never had any formal mobility lessons, but I trained myself without great difficulty. I finally moved to the downtown area, primarily because there were sidewalks. I lived in a high-rise apartment close to the University. There were many social activities, and something was always happening. I could always find plenty for a guy like me to do.
At some point I found out about the National Federation of the Blind. After attending a few meetings, I was more impressed with it than with any other organization I had ever been involved in. It was a united body of blind people doing everything possible to serve blind people, without regard to the cause of their blindness. Federation philosophy ran parallel to my own observations, made since I had become blind, that much of the general public simply does not understand blindness. Many friends, neighbors, and family members simply pity the blind person, thinking he or she is not capable of doing very much. Along with the pity and sympathy comes a great deal of discrimination, due to society's many myths and misconceptions about the blind and blindness. The situation is improving, but we in the National Federation of the Blind still need to spread the word.
The key word is “education.” We Federationists are aware that, with proper training and use of alternative techniques, we can do just about anything we decide to do. The NFB knows that society's perception of inabilities can mislead blind people. If all they hear is talk of their helplessness and that they can't, they may become convinced and think themselves into helplessness and inactivity. This holds true as well for blind diabetics, told incorrectly by many that they cannot draw insulin, test blood glucose, or perform the other tasks of diabetes self-management.
Limitations, for most blind people, are self-imposed. The NFB strives to enlighten society about the capabilities of blind people while striving to improve the way many blind people think about themselves. We encourage them to think "I can" rather than "I can't." We are a self-help and advocacy organization. We show blind folks they are not alone and that, whatever their situation, they have options. Our members are living proof that blindness is not synonymous with inability.
by Mike Freeman
From the Editor: Mike Freeman is currently the president of the NFB's Diabetes Action Network; he originally wrote this article several years ago, soon after receiving his diagnosis of diabetes. This autobiographical profile vividly illustrates Mike's healthy and constructive attitude toward his blindness and diabetes. Here is how he describes his experience:
My name is Mike Freeman, and I am currently president of the National Federation of the Blind of Washington and second vice president of the NFB’s Diabetes Action Network. I am five feet, nine inches, and I have been just about totally blind since birth; one eye has been removed, and I see only a bit of light with the other. I became diabetic in March 2005, so my blindness is not due to diabetes. I was born prematurely, and, because the eyes are among the last organs to develop and partly because of the medical measures taken to keep me alive, my retinas detached due to abnormal blood vessel growth and caused my blindness. I read Braille and use a long white cane to assist me in travel. I have been a member of the National Federation of the Blind since 1977.
I hold a BA in physics from Reed College in Portland, Oregon, and an MS in physics from New Mexico State University, Las Cruces, New Mexico. I am an information technology specialist, writing automated procedures to control exchange of data with the Internet while not compromising computer security for the Bonneville Power Administration under the U.S. Department of Energy. This agency markets electric power from the federal hydroelectric projects in the Pacific Northwest and wheels power for other northwest utilities.
As late as the summer of 2004, I was not diabetic; my blood sugar level was normal. I became sick with the flu in December 2004 and didn’t fully recover until halfway through January 2005. It was then that I first noted symptoms of diabetes—increased frequency of urination, increased thirst, and dry skin with cracking that didn’t immediately heal. Moreover, I noticed that my penis was sore and that there was some discharge. Since I knew I did not have a sexually transmitted disease, this was a puzzle. By March I noticed some difficulty in orientation and concentrated thinking. Then, on a trip to Seattle, my legs cramped and caused me to fall several times. I am told that I also had the fruity breath of someone in ketoacidosis. I did not lapse into a coma but was fairly close to it. When I came out of the fog, the emergency room physician told me I had diabetes, that I was on an insulin drip, and that I would be on insulin for the rest of my life. (Indeed, I have been using it ever since.) Apparently he must have ordered a C-peptide test and/or an anti-GAD test. From that he learned that I had virtually no insulin left in my system. I have what is called latent autoimmune diabetes of adults—LADA—which is basically type 1 diabetes, except that I got it as a middle-aged adult rather than as a child, teen, or young adult. My doctors and the hospital staff had an extremely healthy attitude about my blindness. There was no question that I would learn to handle my diabetes without assistance. The attitude amounted to: “Fella, you’re in the army. You’re going to learn to handle this by the time you leave here!” and I did.
At the moment I use an insulin pen to administer Novalin 70/30 insulin twice a day, and I test my blood glucose using a talking blood glucose meter three to four times a day. My A1c has ranged between 5.6 and 7, and so far I show no signs of diabetic complications.
Right from the start I found the support of the National Federation of the Blind and the Diabetes Action Network to be of immense help. Needless to say, all DAN literature is suffused with the can-do attitude of the National Federation of the Blind, embodying its philosophy that with training and opportunity blindness can be reduced to the level of a physical nuisance. Having been a member of the NFB for many years, I was well acquainted with this philosophy. But it was most helpful to see this philosophy carried into the realm of diabetes. The DAN literature was clear and concise and told me virtually everything I needed to know to get started.I supplemented this helpful information by reading lots of diabetes information on the Internet, in books from the National Library Service for the Blind and Physically Handicapped, and some I purchased through Amazon.com. I learned and learned. The more you know about diabetes, the better you can deal with the disease. I believe that those who aim to “conquer” or “fight” diabetes are wrong; one does not fight or conquer diabetes; one lives with diabetes. Yes, it can be quite a nuisance at times. But, like blindness, that’s all it is for me—a nuisance. Through being involved in DAN, I try to help others gain this knowledge and confidence. Neither blindness nor diabetes has stopped me from enjoying life.
by Gail Brashers-Krug
From the Editor: The following story first appeared in the Summer 2006 issue of Voice of the Diabetic,
our former quarterly publication that not only dealt with managing
diabetes, but frankly and constructively addressed the disease's
ramifications. Tom and Eileen Rivera Ley have been NFB leaders from the
time they joined the organization as students. Here is the inspiring
story of their challenging life today:
Five-year-old JonCarlos Rivera Ley looks just like his papa, Tom. JonCarlos inherited his charming smile, his delightful singing voice, and his goofy sense of humor. And a year ago JonCarlos also inherited his father’s type 1 diabetes.
But JonCarlos enjoys an important advantage that most diabetic
children do not. He has an arsenal of the three most important weapons
against a chronic disease like diabetes: know-how, a positive attitude,
and terrific role models. One of JonCarlos’s advantages comes from the
fact that both his parents are blind.
Step Outside Your Fear
But how can blindness possibly be an advantage? JonCarlos’s mom Eileen, who has been legally blind since birth, explains: “Tom and I know that being blind can be rather frustrating at times, but it doesn’t mean that a good life is over. We accept that we have to make adjustments, and we get on with life.”
Tom, a thirty-nine-year-old devout Christian and self-described math geek, lost his sight to diabetes at age seventeen. He is currently undergoing dialysis three times a week while awaiting a kidney transplant. Nevertheless, he is relentlessly upbeat, positive, and energetic. “You can always think of reasons why you can’t, if you’re coming from a position of fear. But if you step outside your fear and try, you can usually figure it out.” Much of Tom’s hopefulness comes from his strong faith. “I truly believe that God allows struggles in our lives for our good. For example, if I had not become blind, I would never have met my wonderful wife or had my children.”
JonCarlos’s fourteen-year-old sister Maria agrees: “My parents have
never let disabilities stand in their way. Some people think that,
because my parents are blind, I do everything for them or that I get
away with lots of stuff because they can’t see. But it’s not that way
at all. Mom and Tom are super independent, and, trust me, my mom never
lets me get away with anything.” Maria is really proud of her family.
In fact, Maria recently gave a speech to her entire middle school about
the strength she and her little brother have gained from their
parents’ approach to adversity.
Find the People Who Know
The Leys put their positive attitude to work to handle their son’s diagnosis. “When JonCarlos developed diabetes,” Eileen says, “we knew that handling diabetes would be a lot like handling blindness. The key was to find the real experts, people living with the problem every day. Those people are always out there, folks who are living with the problem and have already found solutions.”
The Leys learned this networking strategy from the National Federation of the Blind. When Tom became blind in high school due to diabetic retinopathy, he and his parents were distraught. A gifted math and science student, Tom had dreamed of becoming an electrical engineer. Shortly after he became blind, his father took down a volume of the encyclopedia from the bookshelf and opened it to “blindness.” There he read that blind people succeed at many jobs, “and,” Tom recalls with a smile, “lo and behold, one of the jobs listed in the encyclopedia was electrical engineer.”
That experience planted the seed of hope, but hope began to bloom fully when Tom met the National Federation of the Blind. Joanne Wilson, then president of the NFB of Louisiana, reached out to Tom. “It was truly amazing. She did things that I never dreamed blind people could do. She had five children.” Tom adds, “Every time I talked to her, she would mention something new, and I’d think, ‘How does she do that? How does she go grocery shopping, or do her job?’ ” Dr. Wilson introduced Tom to people in the NFB Diabetes Action Network, who taught him how to manage his diabetes independently.
Eileen joined the Federation while a student at Harvard College. Her life has never been the same since. “It was a real relief to meet other blind people who were achieving their goals. It took a lot of pressure off me. I no longer had to be a super blind woman. I could just be myself.”
Over the years Tom and Eileen have benefited from the advice and support of dozens of successful blind people. Today Tom is a software development manager for UPS, and Eileen is a strategic planning and fundraising consultant. Now they mentor others dealing with blindness and diabetes.
The Leys reached out to another, different supportive community when JonCarlos was just nine months old and was diagnosed with severe hemophilia, an extremely rare genetic bleeding disorder. Eileen: “We were shocked—no one in our families had hemophilia. But we handled it the same way we handled blindness: we knew the key was to find people who had done it before.” They found the Hemophilia Foundation of Maryland and through the foundation’s families learned how to manage their son’s hemophilia and, Eileen adds, “still help him have a normal childhood.” With special IV infusions of a blood clotting factor every other day, JonCarlos’s hemophilia is controlled.
Before JonCarlos developed diabetes, Eileen recalls, “Tom would worry every time JonCarlos seemed thirsty. I told him not to be silly. ‘Come on,’ I said, ‘you know the odds are very low, and we already have the hemophilia to deal with.’ ” But, when their son turned four, he began to be thirsty all the time and have a constant, itchy skin rash. As the familiar symptoms mounted, Tom and Eileen grew more concerned. “Finally we had a long, tense talk at three in the morning. Tom was very upset. He left the room to be alone for about a half hour and then came back and said, ‘Okay, I’m done feeling sorry for myself. We’ll test him in the morning.’ ”
When Tom and Eileen learned that JonCarlos had diabetes, they
immediately put their NFB experience to work again. First they sought
advice from their friends in the NFB's Diabetes Action Network, who
assured Eileen that she could manage the glucose testing and insulin
dosing safely and effectively. Next they set about finding other
families raising diabetic preschoolers. Eileen recalls, “While we were
in the hospital dealing with the diagnosis, a dear friend got on the
Internet and found the Children with Diabetes Website. Through it she
found several families in our area who have other boys JonCarlos’s age
with diabetes.” With the support of those families Tom and Eileen
learned things like how to train their son’s babysitters and preschool
Managing Diabetes Is All Day, Every Day
Of course their positive attitude does not mean that the Leys are Pollyannas. They recognize the challenges and fears of raising a diabetic child. Eileen recalls, “I couldn't believe my little boy had yet another chronic disease. When he was first diagnosed, I was nauseated all the time. Of course Tom has diabetes, but he manages it on his own. He's the family expert, but he was at work and I was home with JonCarlos. Managing diabetes is all day, every day. I was terrified that I would forget to give him his insulin or give him the wrong food or something.”
JonCarlos’s diagnosis was particularly difficult for Tom. Tom recalls, “I had so many mixed feelings. I had gone blind and gotten kidney disease as a result of my diabetes. I didn’t want my son to have to suffer. Now, with all the intensive therapies and better insulins, I’m hopeful he won’t have to suffer complications at all.”
He continues, “I don’t want to sugar-coat it. Diabetes is a tough
disease. You have to be a fulltime manager of your diabetes. You’re
always thinking about it, always planning for it throughout the day.
The sooner you embrace this life and accept it as your new normal, the
sooner you can move on and keep living your life.”
Managing with Adaptations
Managing diabetes can be challenging for anyone, but it is even more so for blind people. As Tom explains, “There are three basics to day-to-day management: giving insulin, testing blood sugar, and counting carbs. Those are all things that blind people can’t do without some adaptation.”
The Leys employ a number of adaptations to manage JonCarlos’s diabetes. For administering insulin, they use the NovoPen Junior by Novo Nordisk to administer Novolog and the OptiClik by Aventis to administer Lantus insulin. The two pen devices are shaped differently, which greatly simplifies identification. The dials on the ends of the pens measure the insulin, and they make audible clicks for accurate dosing. Before switching to his insulin pump, Tom used the Count-a-Dose, a device that provides audible clicks so that a standard syringe can be accurately filled without sight.
For testing blood sugar, the Leys use both talking and nontalking blood glucose meters. Tom uses a talking meter, the ACCU-CHEK VoiceMate, while JonCarlos uses a traditional meter with a visual display, the ACCU-CHEK Compact, and reports the numbers on the display to his parents.
Counting carbs is a bit more challenging. “When a new food comes into the house,” Tom explains, “we put a label on it, in Braille and large print, with the serving size and the carbs per serving. After a while we've come to know from experience how many carbs are in our favorite foods.” The Leys use their talking computer to access special Websites like CalorieKing.com where they can find carb counts.
One of the most helpful strategies they used in managing JonCarlos’s diabetes, Eileen recalls, was educating their friends and family on how to manage the disease. “When we first started meeting parents with diabetic children, we heard stories of parents who could never go out on a date or leave their children at all and grandparents who wouldn’t watch their grandchildren because they were afraid of dealing with the diabetes. There was no way we were going to accept that.” Eileen invested some time in explaining diabetes management to the parents of JonCarlos’s friends, “and now he goes on playdates like any other little boy.”
But even a glance at this remarkable family reveals that JonCarlos is not like any other little boy, and his family is not like any other family. Diabetes, blindness, kidney failure, hemophilia—it seems that they can overcome anything. Eileen laughs, “One of the diabetes educators I know told me that blind diabetics like Tom are a real inspiration to her sighted patients. She tells them, ‘If these blind people can manage their diabetes and not complain, then you can do it too.’ ”
by Margaret Cleary
From the Editor: The following story about Dick Connors was originally printed in the Winter 2009 edition of Voice of the Diabetic. Margaret Cleary, director of admissions and diabetes educator at the Carroll Center for the Blind in Newton, Massachusetts, explains how Dick's life experience required him to put his professional theory into personal practice. Here is the story:
Richard Connors (known to most as Dick) has had diabetes for fifty-one years, and he knows a lot about it. Now vice president of community services at the Carroll Center for the Blind, Dick has held various positions during his forty-plus-year tenure at the Newton, Massachusetts, center: orientation and mobility (O&M) instructor, residential rehabilitation director, and technology services director. In an interview Dick vividly described to me four extraordinary days that have shaped his view of diabetes, blindness, and life.
Extraordinary Day Number One:In March 1957, in his twelfth year, Dick got the flu. His impression was that, although he did get better, he never fully recovered. Two months after he got sick, Dick’s mother took him to her doctor at the renowned Joslin Diabetes Center in Boston. The doctor did some tests and then briefly left the room. He returned with a glass syringe and a vial of cloudy liquid, measured a dose, and told Dick to inject himself in the leg. Appalled and trembling, Dick injected himself with what turned out to be insulin. The doctor said he would have to do that every day for the rest of his life. Clutching a two-page diet, bottles of insulin, and urine-testing equipment, young Dick went home and tried to follow the doctor’s instructions.
During his teens Dick succeeded at keeping his diabetes in check—a success that he credits partly to his diet and largely to the unusual amount of exercise he got. He worked on a farm, and he also had a newspaper route that required bicycling several miles a day. It was when Dick went off to college that he began to have trouble controlling his diabetes; he attributes that to inactivity. In his senior year he heard about the peripatology program at Boston College. “Ah,” he remembers thinking. “Here’s a chance to do something fascinating that requires walking.”
Extraordinary Day Number Two:Attending a lecture on vision impairment at Boston College, Dick felt his insides turn to ice as he heard the professor say, “Diabetes mellitus is the leading cause of blindness in adults.” Dick bolted from the room. A classmate ran out after him and caught up with Dick, who blurted, “I have diabetes.” Until then he had had no idea that diabetes and blindness were related.
After the initial shock Dick came to grips with the fact that he might one day lose his sight. But he wasn’t afraid. He even decided to work in the field of blindness. It was the possibility of kidney disease, more than anything, that scared Dick. Every twinge or back ache was cause to imagine the worst. Fortunately Dick has not been troubled by kidney disease—though he has suffered other complicating conditions, including a heart attack, a stroke, and Charcot’s foot. Every year he approached his regular ophthalmologic exam with apprehension. And every year his ophthalmologist would say: “Your eyes look excellent. You’d never know you had diabetes. Your eyes look beautiful.” In 2000, however, after having had diabetes for forty-three years, Dick was told by his doctor that he needed to see a retinal therapist to begin laser therapy. For several more years, however, Dick’s vision functioned normally.
Extraordinary Day Number Three:One morning in 2005 Dick awoke with no vision at all in his right eye. A vitrectomy failed to restore his eyesight. His left eye, meanwhile, continued to function. In 2006 Dick learned that he had an aneurysm in his functioning left eye that might one day burst. It was near the macula and too risky to treat. Dick went about his business as usual, working and driving.
Extraordinary Day Number Four: On September 6, 2006, Dick stopped for coffee on his way to work. Upon his return to the car, something suddenly started happening in his good eye.” He describes “a very long, winding, thick-bodied black snake” emerging from the center of his visual field. Realizing the aneurysm in his left eye had burst, he also knew he had only minutes to drive back home. He knew, too, that it would be the last time he ever drove. Now Dick knew for himself the condition about which he had counseled so many others over the years.
Dick coped with this extraordinary day as he had coped with the others. As soon as he could, he called his employer to recount what had happened and to say that he would be out for a few days. He called me at the Carroll Center and asked if I would perform a diabetes self-managing assessment and make recommendations. He called the Massachusetts Commission for the Blind to inquire about available services. He asked one of his staff members to provide orientation and mobility lessons to him. He also requested that a media aide with whom he had worked install a speech-recognition program on his computer.
A week later Dick returned to work using public transportation. Today his lengthy daily commute involves three bus changes. Dick likes to tell a story on himself when he gives O&M instruction: on his first day back to work, he got on a bus going the wrong direction.
He’s got it down now, though. With fifty-one years of diabetes and three-and-a-half years of blindness, Dick Connors gets to work, manages his diabetes, asks for help when he needs it, and performs his daily business as ever. “Now,” says Dick, “every day is an extraordinary day.”
by Elizabeth Lunt
From the Editor: The following article was first published in the Summer 2007 edition of Voice of the Diabetic.
Annette Gordon continues to teach Braille and other skills to blind
seniors in the Seniors Achieving Independent Living (SAIL) program at
Blind Industries and Services of Maryland (BISM). She is an active
member in the Baltimore County chapter of the National Federation of
the Blind of Maryland. Federation leaders in Maryland speak highly of
Annette's contributions to the affiliate, noting particularly her
occasional testimony before legislative committees of the Maryland
General Assembly and her involvement in the national Washington
Seminar. Here is her impressive story:
Annette Gordon says that for nearly twenty years she managed her diabetes the same way many Americans do: “I ignored it,” she explains, with a warm, rich chuckle that evokes her native Trinidad. “Big mistake.”
Neglecting her diabetes cost Annette her vision and her teeth. Now sixty-one, she wants to make sure that others don’t make the same mistake. “The doctors kept trying to talk to me about the diabetes, but I felt fine,” she says. “I thought there couldn’t be anything really wrong with me.” Annette chuckles again. “I’m going to shout it from the housetops,” she adds, “what a fool I was.”
Her first experience with diabetes was as a young pregnant woman. Her doctor told her she had gestational diabetes—a form of diabetes that is the result of pregnancy hormones. It usually goes away once the baby is delivered, but her doctor told her she should watch out because women with gestational diabetes are more likely to develop type 2 diabetes later. Annette ignored him. She felt fine, and she had young children to care for.
Years later, during a routine exam, Annette discovered that the first doctor’s prediction had come true. She had type 2, and her new doctor warned her to manage it. She ignored him too. Again she felt fine. One more doctor in her native Trinidad even told her he would not clear her for employment—a condition of getting a job there—until she dealt with it. She didn’t.
She says she doesn’t understand what she was thinking then, but notes that she was consumed with taking care of four children and didn’t have much money. “Poverty is a sad thing. You just want to do the best you can do for your children, not being aware that you need help for yourself,” she offers, still trying to understand how she could have ignored her diabetes for so long. She focused on getting her children to the point of self-sufficiency and didn’t feel sick anyway.
Finally, when she was forty-five, she noticed problems with her eyes and her teeth. Her jaw also began to ache. She never connected either ailment with the diabetes. By then she was living in the U.S., and she went to a new doctor. He explained to her that, even though she couldn’t feel her diabetes, it was harming her. Her uncontrolled blood sugar was damaging her eyes, gums, and teeth. She took her medicine—“when I remembered,” she says--but neglected her diet and did not exercise. Her vision and dental problems grew worse, but “everything happened gradually,” and she didn’t worry about her health.
Eventually her eye problems turned into legal blindness. The doctor told her it was diabetic retinopathy. “I didn’t even want to go out on my sun porch,” she recalls. She was terrified and felt trapped in the house. “I thought my life was over,” Annette says with a sigh. “I really did.”
But Annette’s life was far from over. Through the National Federation of the Blind her daughter found a skills program at Blind Industries and Services of Maryland (BISM). At first Annette wasn’t interested. When her daughter took her to the first interview for the program, she “was mentally kicking and screaming,” she says with a laugh. She joined the skills program to get out of the house, but she refused to carry the white cane because then everyone would see that she was blind. “I was in denial…even though I was falling down and risking my life every time I crossed the street,” she confesses now.
Gradually Annette realized that she had a lot in common with people in the program, and she was inspired by her blind instructors. “It gave me back a lot of courage,” she recalls. “Here were all these people just like me, going places, involved in things.” She became determined. She decided to take on the more advanced life-skills training class, a rigorous eight-month program spent learning Braille, mobility, and kitchen skills, among others. She resolved to “work my darndest, and I did.” In the middle of the program she had to leave and go to Trinidad for three months to care for her ill mother and to help her daughter, who was having her first baby.
In Trinidad she was amazed at how much she could do. “You do not lose your natural instincts,” she says. “The baby didn’t know I was blind.” She managed to cook and care for her mother and her newborn grandson and returned to the U.S. to complete her program. “You have to cook a meal for twenty to thirty people to graduate, and I made dinner for thirty-three,” she recalls proudly.
Now Annette is working at BISM, where she teaches Braille to seniors and makes home visits to help them learn to cope with their blindness. She says she knows how they feel since she was there herself; people get depressed when they have to change their lives and learn new ways without vision. But Annette tells them that her blindness also brought blessings and “opened up a bigger world for me.” She has done things as a blind person that she never expected to do, even when she had perfect vision. She learned to use a computer during her life skills course, and now, she says, “I use it for everything.” Overcoming her fear and learning so much has given her a new confidence. She describes herself as “more assertive” and sure that she can handle any challenge. “No more sniveling and crying for me,” she explains proudly“
I played around with diabetes for years and ignored it,” Annette admits, but she is now serious about her self-management and says she is “fighting tooth and nail.” She takes her medicine and watches her blood sugar and diet. What’s really working, she reports, is exercise. Her vision loss hasn’t slowed her down; she walks as much as possible and says that she gets “really nice numbers” after a stint on the stationary bicycle.
Annette isn’t just active when she’s exercising—she was recently selected to be the NFB spokesperson in a national education campaign about the complications of diabetes. She is proud that she is helping to get the word out. “I’m loud,” she jokes. “When people hear me, they know it’s Annette.” She’s putting her voice to good use at NFB advocacy and outreach events as well, and she loves being a part of the organization. “I’ve never had so much fun in my life since I’ve been involved with the NFB and BISM,” she says.
by Barbara Pierce and U.S. Senator Tim Johnson
From the Editor: No collection of inspirational stories about blind diabetics would be complete without a profile of Karen Mayry. Longtime Federationists will remember Karen as a friend and tireless champion of issues unique to this community; newer members will regret never having made her acquaintance. Everybody will agree that she epitomized the best spirit and work ethic of our movement. Karen was responsible for creating the Diabetes Action Network, the Federation forum for blind diabetics. It is only appropriate, then, that she be recognized in this volume.
Toward this end we reprint the remembrance of her life that was published in the February 2007 edition of the Braille Monitor, the general interest magazine of the National Federation of the Blind, featuring the remarks that U.S. Senator Tim Johnson made about her on April 8, 2004, as printed in the Congressional Record. Together these two pieces nicely describe Karen and her work. We can all be proud of what she achieved during her life; blind diabetics have immeasurably benefited from her efforts. The two pieces follow:
We are deeply saddened to report the death of longtime NFB leader Karen Mayry on Tuesday, November 28, 2006, at the age of sixty-four after more than a half-century struggle with diabetes. She is survived by her devoted husband Marshall and her niece Gail Wagner, both committed Federationists for many years, as well as one brother and several other nieces and nephews. Karen was raised in Hibbing, Minnesota, and graduated from Hibbing High School in 1960 and Hamline University in St. Paul in 1964.
She taught school for one year before marrying Marshall Mayry in 1965. She taught in various schools for three more years, and in 1968 the Mayrys moved to Rapid City, where Karen was employed for several years as a juvenile probation officer. She began losing vision in 1965, and she was legally blind by her late twenties. Because of her strong determination and positive attitude in dealing with diabetes, blindness, and other health problems, she became one of two founders of the NFB’s Diabetes Action Network and the president of the National Federation of the Blind of South Dakota, a position she held for twenty-five years.
It would be impossible to list Karen’s contributions to blind South Dakotans and diabetics across the country. Her energy and determination were legendary. When she decided that something needed to be done, she simply did not stop until she had convinced or worn down the opposition. She gave generously of her wisdom, experience, and passion for equality and justice for all blind people. We have all benefited from her contributions.
Karen received countless awards, including recognition in the U.S.
Senate by South Dakota Senator Tim Johnson on April 8, 2004, and the
Jacobus tenBroek Award from the National Federation of the Blind in
1984. Our deepest sympathy goes to Marshall, Gail, Karen’s hundreds of
close Federation friends, and those in the blindness community in South
Dakota who will miss her mentoring spirit.
Thursday, April 8, 2004
The Honorable U.S. Senator Tim Johnson
Mr. Johnson: Mr. President, I stand today to recognize an individual who is a dedicated advocate for the blind in this nation and especially in my home state of South Dakota.
Karen was raised in Hibbing, Minnesota. The second of five children, she learned at an early age to cope with people's afflictions. Her brother Robert was born with Down's Syndrome. It was from this early exposure that Karen gained some of the beliefs that would carry over into later life. At age eleven, Karen herself was diagnosed with type 1 diabetes, the disease that was to define the rest of her life.
In 1965 Karen married her longtime love, Marshall. While living in Tacoma, Washington, where Marshall was to finish out his military obligation, Karen found a job teaching in the Clover Park school system. In her first year on the job, she experienced her first hemorrhage in her right eye, which resulted in complete vision loss in that eye. Because of her love of educating children, she remained on the job teaching, despite experiencing a traumatic physical ailment.
Marshall and Karen moved to Denver, Colorado, after his military obligation was fulfilled. While in Denver, Karen lost still more of her vision and for all purposes became totally blind, then underwent eye surgery in the hope of restoring some vision to her right eye. The surgery was deemed a cosmetic failure. It was also at this time that Karen discovered she was beginning to experience renal failure.
In 1969 Karen and Marshall moved to Rapid City, where she was hired as a juvenile probation officer. She remained at this position for six years, until her renal failure had progressed so much that she was unable to continue her duties. As she experienced kidney failure soon after, her loving brother David offered one of his kidneys. After many months of complications delaying the surgery, the transplant was successful. Three weeks later she left the hospital, and her kidney functions have remained excellent for the past twenty-seven years.
Following the successful kidney treatment, she was approached by representatives of the National Federation of the Blind to become a member. The philosophy of the NFB matched her own: one of independence, and the abilities of blind persons--if given a chance. Soon after joining, she became active that same year and was elected NFB state president, a quite remarkable achievement.
Karen Mayry is the longtime president of the South Dakota Federation of the Blind. For many years she has provided tireless advocacy for the blind residents of South Dakota and for the disabled population of the state. Under her presidency the state affiliate has grown to five local chapters. She has proposed and lobbied for, and had legislation passed, which bettered the lives of blind South Dakotans. She has testified before the Senate, investigating transportation for the handicapped, and has annually made trips to our nation's capital to lobby for issues of importance to the blind of the country. She is dedicated to advocating issues of importance, and she is committed to breaking down the structural and attitudinal barriers that impact the blind and disabled community in South Dakota. Her list of organizations is vast, and her accomplishments and awards are countless.
Despite various physical ailments in recent years, Karen refuses to be sidelined and continues her stalwart advocacy. Her vitality and energy are commendable, and her advocacy and education over the years on issues affecting blind and disabled individuals have proven very successful. She works hard to educate and advocate for the Americans with Disabilities Act, which helps promote the skills and talents of the blind and educated the business community about the importance of hiring individuals with disabilities.
South Dakotans with disabilities have many fighters in their corner, and Karen Mayry is one of their most ardent advocates. Karen doesn't mince words with elected officials. I, for one, have appreciated her frankness and candor over the years. Her insight is valuable on important issues, not only on matters directly affecting blind residents, but also on issues vital to all South Dakotans, disabled and non-disabled alike.
As residents of my state prepare for the annual South Dakota Federation of the Blind convention in Sioux Falls, I take this opportunity to congratulate and commend Karen Mayry for her many years of outstanding advocacy work for the blind. I applaud her dedication and commitment, appreciate her advocacy, and wish her the best in her own individual battle to come. I look forward to continuing my work with Karen concerning issues of importance to the blind and disabled citizens of South Dakota. It is with great honor that I share her impressive accomplishments with my colleagues.
by Lynn Baillif
From the Editor: Lynn Baillif is currently the coordinator of diabetes education at St. Agnes Hospital in Baltimore, Maryland. Prior to holding this position, she served as a contributing editor for the Voice of the Diabetic. By way of professional experience, Lynn is a registered dietitian and a certified diabetes educator. She is blind, and she has been a member of the National Federation of the Blind since 1987, when she was awarded an NFB national scholarship.
Lynn has written several articles that will be featured in
this volume. We are fortunate to be able to draw upon her professional
expertise for this publication. Here is what she has to say about
fundamental tips for taking care of your health, whether you resolve to
adopt these habits at the beginning of the year or at any appropriate
time in your life:
Every year Americans make New Year’s resolutions, which unfortunately often go by the wayside before February begins. Why not make this year different? Resolve to take better care of yourself. These tips will help you fine-tune your diabetes self-care and stick with your plan.
One--Build Your Team
You are the main player on your diabetes care team, and you must carefully choose the others. Your physician, nurse, and dietitian should be strong members. A primary care physician can be a great help in caring for your diabetes. An endocrinologist, however, who is focused specifically on diabetes can also assume this role. These specialists have advanced training in diabetes care and are more likely to be aware of new treatments. For the same reasons select a nurse and a dietitian who are certified diabetes educators (CDEs). Ask your doctor for a referral to an educator near you or go to <http://www.Diabeteseducator.org> and search for those in your state. If you already have your basic team in place, consider adding other members such as a pharmacist, exercise specialist, or psychologist, depending on your goals.
Your diabetes team can provide you with medical care, ongoing
diabetes education, and support. Unfortunately, less than one-third of
people with diabetes ever have a formal diabetes education course. Take
advantage of this resource. It will be easier to stick to your
resolution with a team. If you had education many years ago, now is a
good time for a refresher course. I recommend that, after you have
completed your initial education program, you follow up with your
educators at least annually to reassess your diabetes control. Most
insurance plans, including Medicare, will pay for diabetes education.
Contact your insurance provider or ask a certified educator for
information on what is covered.
Resolving to take better care of your diabetes can be an overwhelming prospect because it encompasses so many tasks. Find your resolution with the help of your team. Take some time to think about what specifically you want to accomplish. Some examples are: better blood sugar readings, weight loss, lowering your cholesterol, or--if you have recently lost vision--independent management of your diabetes self-care.
Three--Set Yourself up to Succeed
State your resolution as a goal that is reasonable, measurable, and attainable. If you plan to lose weight, saying, “I want to lose a lot of weight” is vague, and “I will lose 150 pounds,” may be just too much. Saying instead, “I will lose one or two pounds a week, 80 percent of the time,” is more realistic. In this way you can keep track of your progress and have room for the weeks when you do not lose weight. You may decide to restate your resolution as the year progresses. Ask your team for ideas.
Four--Plan for Behavior Change
It will take many specific behaviors to meet your goal. For example, if your goal is to lose weight, you may need to do some or all of the following:
Adopt a new meal plan.
Increase your activity.
Plan for and limit episodes of low blood sugar.
Adjust medication doses as your weight drops.
This is where your team comes in handy. As a team you will work together to make these things happen.
Five--Plan for Challenges
What will you do to stick to your resolution when you go on vacation
or when the Valentine’s Day chocolates show up? Planning with these
situations in mind will make them easier to manage. As you would with
your overall goal, be realistic with yourself. Maybe you can have two
pieces of chocolate and throw the rest of the box away. Although your
mother may have said, “Waste not, want not,” it is really okay to do
You can’t do it all alone. Your diabetes team will give you support, but you also need people in your daily life to be there for you. Ask a family member or close friend to attend education sessions with you. Afterwards they can support you in your efforts. It can also help to get support from other people with diabetes who share your experiences. The Diabetes Action Network of the National Federation of the Blind is an excellent resource. You can also ask your team if there is a diabetes support group in your area.
Stock your diabetes tool box with the information and devices you need. You are currently reading an excellent resource. You can read Diabetes Self-Management, which is available on NFB-NEWSLINE®. If you’re losing vision, many accessible devices, like a talking scale and insulin measurement tools, exist to help blind diabetics. For information about resources, call the National Center for the Blind at (410) 659-9314 or visit <http://www.nfb.org>.
Your thoughts can either support or sabotage your behavior change. If you slip up, don’t beat yourself up. Tomorrow is another day to try again. Avoid using the word cheat because it can make you feel guilty or like a failure. Realize that over the year things won’t always go the way you would like. Do your best, and ask for help when you need it.
We all need positive reinforcement and praise for our hard work. Plan your rewards in advance to provide you with motivation. Reward yourself for your progress throughout the year rather than just waiting until you have reached your long-term goal. In the weight loss example you could do something nice for yourself with every ten pounds you lose, but don’t let it defeat your goal. Rather than celebrating with an ice cream sundae, buy yourself a non-food treat or treat yourself to a special activity like seeing a show or concert. When you reach your long-term goal, give yourself a bigger reward, like new clothes.
No matter what your new year entails, good luck with your effort to manage your diabetes successfully. Thoroughly reading Bridging the Gap: Living with Blindness and Diabetes should get you off to an excellent start.
by Lynn Baillif
From the Editor: In the following article, reprinted from the Fall 2007 edition of Voice of the Diabetic, Lynn Baillif, a blind dietitian and certified diabetes educator, discusses basic facts about carbohydrates and their relevance to people with diabetes. You can count on this information’s proving valuable in your diabetes management. Here is what she says:
What are carbohydrates? Carbohydrates include starches, sugars, and fiber. Many years ago people with diabetes were told to stay away from sugar, but little attention was paid to the other carbohydrates they consumed. We now know that watching the total carbohydrate content of food--not just the sugar content--is more important for achieving blood sugar control.
What foods contain carbohydrates? Sometimes it is easier to start by identifying foods that do not contain carbohydrates. Protein foods such as meat, fish, eggs, and cheese, as well as fats such as butter, margarine, oil, olives, and avocados contain minimal or no carbohydrate. Remember that adding breading or a sweet sauce to meats or seafood adds carbohydrates to these foods. Bread, cereal, rice, pasta, crackers, and other grain products contain carbs. Starchy vegetables like potatoes, corn, peas, and dried beans also contain carbs. And don’t forget about milk products and fruit. They contain carbs too. A common diabetes myth is that skipping a slice of cake and having fruit instead is better for your blood sugar. It may be, but it depends on the portion size of your dessert. A small piece of cake will have fewer carbohydrates than a huge apple. Read on for more details.
How much of what I eat should come from carbs? It depends. Approximately 45 to 65 percent of calories should come from carbohydrates. The amount that is right for you depends on your diabetes goals, preferences, and lifestyle. For example, if tests indicate that your triglycerides (a form of cholesterol in the blood) are elevated, you may benefit from eating less carbohydrate (45 percent of your calories), and you should eat more calories from healthy fats. Conversely, if you are from an ethnic background in which the diet is traditionally high in carbohydrates from pasta or rice, it may be more realistic for you to consume 65 percent of your calories from carbohydrates. A meeting with a registered dietitian (RD), in particular someone who is also a certified diabetes educator (CDE), can assist you with setting the carbohydrate goal that is right for you.
What about low-carbohydrate, high-protein diets? Such diets are not recommended by professional organizations for people with diabetes. The recommended dietary intake (RDI) for carbohydrate is 130 grams or more per day for all Americans older than one year of age. Consuming a variety of foods, including fruits, vegetables, dairy products, and grains will provide the body with adequate vitamins and minerals. Adequate carbohydrates are also needed to provide the body with the fuel it prefers. In particular the brain needs carbohydrates to function well.
What is carb counting? The first step of carbohydrate counting is to establish a carb target for each meal. For most people it will be between 30 and 75 grams per meal and 15 to 30 grams for a snack. Next you add up the grams of carbohydrate you eat to be sure that you reach the target. Think of it like money. If your carb target for breakfast is 60 grams, you want to spend all 60 grams on the food that you eat. Your objective is to be within 5 grams of your goal, so for this meal you want to have between 55 and 65 grams of carb. Add up what is on your plate. If you have more than 60 grams, you have spent too much, and you should put some food back, or you will go into debt. If you have not spent all 60 grams, you need more carbs.
How can carb counting improve my blood sugars? The carbohydrate you eat affects your blood sugar level after the meal or snack. Consuming a consistent amount of carbohydrate at the same meal or snack every day will help to minimize fluctuations in your blood sugar. If you have type 1 diabetes or type 2 diabetes treated with insulin or a medication that stimulates your insulin production, your medication dose will balance a certain amount of carbohydrate. If your medication dose stays the same every day, so should your carb intake. More carbohydrate with the same amount of medication will cause your blood sugar to rise. If you eat less carbohydrate but take the same amount of medication, your blood sugar will be lower, which can lead to hypoglycemia. For individuals who have type 2 diabetes treated by diet and exercise alone or with other medications that cannot cause hypoglycemia, it is still important to be consistent with your carbs. Eating too few carbs at a meal may cause you to be hungry later in the day, which may cause you to overeat, leading to high blood sugar.
How do I know the amount of carbs in my meals and snacks? You can identify the amount of carbohydrate in foods in several ways. If there is a label on the item, that is the best place to look. If you need assistance with reading food labels, have someone assist you. Then keep the information in a format you can refer to later. Using a recipe box to file cards with this information in Braille or large print is an easy and economical approach. You want to know the serving size (in an amount you can measure) on the label and the amount of total carbohydrate in grams. The sugar listed on the label does not matter because it is already counted in the total carbohydrate. You do not need to look at the grams of sugar. Total carbohydrate is more important. You will need to measure your portion sizes so that you can count your carbohydrates accurately. When you are at home, use measuring cups. Over time you will be able to estimate your portions visually or by touching the food on your plate. Don’t hesitate to use your fingers.
What happened to the exchange lists? If you are familiar with the exchange lists, you can still use them to count your carbohydrates. Items on the starch, fruit, starchy vegetable, and milk lists contain 15 grams of carbohydrate (or one carb choice) per serving listed.
What about eating out? When you are eating out, use the information you have learned at home to estimate the carbs you are eating. Also don’t hesitate to ask your server for information about how foods are prepared. Fast food restaurants have nutrition information available online or by calling their corporate headquarters. Many books on the carb content of food are also available at your local bookstore.
How about fiber? The RDI for fiber is 14 grams for every 1,000 calories consumed per day. This translates to approximately 21 grams a day for women and 25 grams a day for men. The vast majority of Americans eat less than 15 grams of fiber each day. Some studies have shown that eating an extremely high fiber diet (50 grams of fiber or more) each day had a significant impact on glycemic control. However, such an eating pattern was found to be difficult to maintain because every food eaten had to be high in fiber, the overall diet was not very tasty, and there were pronounced gastrointestinal side effects. So it would be best to start by working towards achieving the fiber intake goals outlined in the RDI.
by Lynn Baillif
From the Editor: In the Summer 2008 edition of Voice of the Diabetic,
Lynn Baillif examined myths and misconceptions about sugars and sugar
substitutes. This clear exposition of the sweet truths will be helpful
to people with diabetes. Here is what she says:
As a dietician and certified diabetes educator, I am frequently asked about sugar and artificial sweeteners and the interrelationship they have with carbohydrate counting and various exchange lists. Here are some answers to questions I’ve heard often over the years.
Does eating too much sugar cause diabetes? Satisfying your sweet tooth does not cause diabetes. If you have diabetes, however, learning to tame a sweet tooth will help you reach your blood sugar goals.
I’ve heard that people with diabetes should not eat sweets. Is this true? In the old days people with diabetes were told to avoid sweets. Now we have learned that white table sugar (sucrose) has the same effect on blood sugar as an equal amount of any carbohydrate. Sugary foods can be substituted for other carbohydrates in your diabetes meal plan, but remember that foods high in sugar are often high in fat and calories too. Use them in moderation as part of a healthy diet.
I gave up all sugar. Now, instead of cookies for a snack, I eat a pound of grapes. This is better for me, right? Grapes, indeed all fruits, have more nutritional value than traditional sweets, but you can have too much of a good thing. Remember that your total carbohydrate intake is what matters. One pound of grapes equals approximately 80 grams of carbohydrate. If you use various exchange lists you know that one fruit, one bread/starch, or one milk exchange equals 15 grams of carbohydrate. A pound of grapes is more than five exchanges, which is probably more carbohydrates than you have allowed for a snack. I recommend that you have fewer grapes. You could also check the label on your favorite cookies and figure out how many you could have for a snack. It is sometimes okay to have cookies.
Is honey a better choice than white sugar? Honey is still sugar. One teaspoon of sugar has 4 grams of carbohydrate while one teaspoon of honey has 5 grams of carbohydrate. If you prefer the taste of honey, go ahead and enjoy it. Whichever you choose, use a measuring spoon so you can accurately count the carbohydrates.
What are sugar alcohols? Alcohol in this term refers to the chemical structure of this type of sweetener. Sugar alcohols are used to sweeten foods in the same way artificial sweeteners are used. Sugar alcohols do not contain the alcohol that is found in beer, wine, and spirits. Compared to sugar, they have fewer calories and less impact on blood sugar. But, unlike artificial sweeteners, they need to be accounted for in your meal plan. This process is described below. A disadvantage to sugar alcohols is that eating too much of them can cause bloating and diarrhea.
What does “net carb” or “impact carbs” mean on a food package? These terms do not have a standardized definition and are not approved for use on food labels by the Food and Drug Administration (FDA). Sometimes they may lead you to believe that a product is lower in carbohydrates than is actually true. You can find the most accurate information on the nutrition facts label. Since dietary fiber is not digested, you can subtract it from the total carbohydrates on the label. Also if a product contains sugar alcohols, you can subtract half of the sugar alcohols from the total carbohydrates. For example, if a food contains 20 grams of total carbohydrate per serving with 2 grams of fiber and 8 grams of sugar alcohol, you can adjust the total carbohydrates to 14 grams.
I’ve heard that artificial sweeteners can cause things like cancer and multiple sclerosis. Is this true? The Food and Drug Administration has approved five artificial sweeteners for use in the U.S. They are saccharin, aspartame, sucralose, acesulfame-k, and neotane. Scientists have studied these food additives extensively and found them safe. The FDA has established an acceptable daily intake (ADI) for each sweetener. This is the amount that can safely be eaten on average each day over a lifetime. For example, the ADI for aspartame (brand name NutraSweet or Equal) for an average adult is approximately eighteen cans of diet soda. Few, if any, people would drink more than that in a day.
What is Stevia? Stevia is an herb whose extract is much sweeter than sugar. It is used as a sweetener in various parts of the world. The FDA has not approved Stevia as a sweetener in the U.S. because of concerns over its potential ill effects on the kidneys, heart, and reproductive system. It is available, however, as a dietary supplement with claims to improve blood pressure and blood sugar. Dietary supplements are not regulated by the FDA. Consult your physician or dietitian before you use Stevia or any other dietary supplement.
I eat sugar-free cookies, ice cream, and pie. These are better for me, aren’t they? Be careful. Some people have the misconception that sugar-free foods will not affect their blood sugar. This is not always true. Sugar-free does not mean carbohydrate-free. These products may contain flour, milk, and fruit or sugar alcohols, all of which contribute carbohydrates. Read the nutrition facts label to get the real story.
What about fructose?This is better than sucrose for me, isn’t it? This is not necessarily true. You may have seen foods sweetened with fructose (fruit sugar) in the diabetic food section of the grocery store, and it is true that fructose used as a sweetener does cause blood sugar to rise more slowly than sucrose (white sugar). It can, however, negatively affect your heart health. For this reason the American Diabetes Association has recommended avoiding the use of fructose as a sweetener. This is not the same as fruit itself, which has many benefits.
I hate diet soda. Will it hurt me to have a regular soda only a couple times a week? Don’t write off diet sodas because you disliked one brand. Try a variety of diet drinks to find one that you do like. Water is another great choice. If you still want to drink regular soda, do so wisely. A can of regular soda contains approximately 45 grams of carbohydrate (3 bread/starch exchanges). For most women this would use your total amount of carbohydrate for a meal. Avoid sipping on a regular soda throughout the day because it will provide a constant source of carbohydrate that will affect your blood sugar. If you drink regular soda, check your blood sugar two hours afterwards to see if you are still in your blood sugar target. If your sugar is high, cut back on regular soda or drink something different.
I have heard that high-fructose corn syrup makes people overweight. What is it, and should I avoid it? High-fructose corn syrup is sweeter and cheaper than sucrose (white sugar) and extends product shelf life, so it is widely used in fruit-flavored drinks, regular soda, and a variety of processed foods. The rate of obesity in the United States increased at the same time as our increased consumption of high-fructose corn syrup. It is unclear, however, whether or not it is to blame. Regardless, foods that contain high-fructose corn syrup are often high in calories and low in nutrients. So read food labels and select wisely.
by Connie Kleinbeck and Ann S. Williams
From the Editor: Connie Kleinbeck and Ann Williams collaborated to produce this practical article to help diabetics on limited incomes effectively cope with the expense of treating and living with this disease. We include it in Bridging the Gap in recognition of the fact that a disproportionate number of our readers experience economic disadvantage. This piece was originally printed in the Winter 2009 edition of Voice of the Diabetic.
Connie Kleinbeck (RN, BSN, CDE) is the inpatient diabetes
educator at the Truman Medical Center in Kansas City, Missouri. She
has been a CDE since 1986. Connie writes articles and speaks about
diabetes and disabilities to healthcare professionals. Anne S. Williams
is an RN with a PhD in psychology; she has worked as a diabetes
educator for the last twenty years. Ann specializes in teaching
independent diabetes self-management for blind people, and she writes
and speaks frequently on this topic to healthcare professionals. Ann
was the founder and past chair of the Disabilities Specialty Practice
Group of the American Association of Diabetes Educators. Here is what
these distinguished professionals have to say about this important
If you have diabetes, there is no getting around the fact that taking care of yourself can be expensive. The cost of medical care, diabetes medications, supplies, and healthy foods add up. These expenses can be difficult to manage even in the best of times. In hard times it can seem impossible. With the current economic downturn, many people are having trouble with even the most basic diabetes expenses. This article provides a few suggestions for managing your diabetes during the hard times.
General Financial Management: Having a budget and sticking to it is important for everyone; this is even more important during hard times. You should evaluate your personal or family budget at least once a year, if not more often, when your income or expenses are changing. Involve the entire family in discussing the budget and brainstorming for ways to save money.
Here are a few questions to consider:
• What is your monthly income?
• What are your monthly expenses for essentials (home, utilities, phone, food, transportation, medicine)?
• When are your bills due? Avoid late fees by paying bills on time.
• Do you have expenses that come once or twice a year (such as taxes and insurance)?
• Where does the money go from your wallet? Keep a diary of your spending.
• Identify nonessential expenses (entertainment, shopping as stress management, sodas, eating out).
Paying cash helps you stay within your limits. Use a credit card
only in emergencies. If you have several cards, cancel most of them.
Pay off your credit card bill each month so you aren’t paying high
interest for carrying charges. If you have credit card debt, call your
creditors to discuss options to deal with it, and try to negotiate a
lower interest rate. If you feel you cannot do this or if your debt load
is overwhelming, find out if consumer credit counseling is available
in your area.
If you need financial assistance, learn what help is available in your community. In most of the U.S., dialing 2-1-1 will connect you to information about helpful resources in your community. The 2-1-1 system offers information on a broad range of services, such as rent assistance, food banks, affordable housing, health resources, and much more. This network is available in forty-six states, Washington D.C., and Puerto Rico.
If you are planning to go to an agency for financial assistance, ask what documents you need to bring with you. Most require state-issued identification, proof of residency, and proof of income. You’ll need to know exactly what the agency you’re working with will accept.
Getting Health Care and Medications: If you do not have health insurance, federally-funded health centers provide care in most cities and many rural areas. Charges are based on your income. Health centers provide a broad range of healthcare services and medications. You can locate health centers at <http://findahealthcenter.hrsa.gov/>, or by dialing 2-1-1.
If you have insurance that covers medications, medications are probably priced differently. They may be listed as preferred on your formulary or as Tiers one to three. Ask your pharmacist to check if your insurance has a lower-cost alternative for your medications or blood glucose meter and if a difference exists in the cost of insulin pens, vials of insulin, and syringes.
If you have problems affording your medication, consider prescription assistance programs. These are sponsored by pharmaceutical companies and provide free or discounted medicines to people who meet specific guidelines. The chart labeled Prescription Assistance Programs lists several organizations that provide information about the programs. Notice that eligibility criteria are different for every program.
If you can use generic medications, several national chains offer them at low cost. See the chart labeled Generic Drug Programs for information about specific chains.
If you have no insurance coverage for medications and other options do not work for you, you can obtain a discount drug card that will allow you to purchase certain medications at a discount. See the chart labeled Discount Drug Cards for more information.
If you have trouble affording meters, strips, or a medically necessary insulin pump, help is available for this too. See the chart labeled Diabetes Supplies for more information. In addition, many local diabetes associations offer some short-term assistance with blood glucose meters and strips.
Healthy Eating on a Budget: Many people have the
misconception that healthy meals are always more expensive. Actually
healthy eating can save money through smaller portion sizes and fewer
high-calorie, high-priced foods. Here is a list of tips to help you
keep your food prices down:
• Plan a menu each week based on sales in grocery stores near you.
• Check what you already have to keep from buying what you do not need.
• Take a shopping list with you, and buy only what is on that list.
• Avoid going to the store if you are hungry, to make it easier to stick to your list.
• Store brand or generic products are often just as good as name brand and usually are less expensive.
• Cook enough to have leftovers. Take the leftovers to work instead of buying lunch, or freeze the leftovers for a busy time.
• Add fresh or frozen vegetables to casseroles, stews, or soups. This is a good way to increase your vegetables and stretch a meal.
If you never learned to cook from scratch, learn how to make basic foods from simple ingredients. You can cut your grocery bill significantly by avoiding pre-prepared foods and cooking from simple ingredients. You can borrow a basic cookbook from a public library or your National Library Service regional library to get started.
For advice from other blind cooks, you can join NFB’s blind-cooks email list. To subscribe, go to: <http://www.nfbnet.org/mailman/listinfo/blind-cooks_nfbnet.org>.
If your finances are extremely limited, find out where nearby hunger centers or food pantries are by dialing 2-1-1 or asking at a local social service agency. In addition, some religious organizations or community centers serve meals. Meals on Wheels can deliver hot meals if you are home-bound.
If you have some money but not enough, Angel Food Ministries might help. This non-profit, non-denominational organization provides grocery relief and financial support in thirty-five states. No income restrictions or applications are required. Church host sites take orders monthly and accept food stamps. A box of food worth about sixty dollars costs only thirty dollars. One box of Angel Food helps to feed a family of four for about one week or a single senior citizen for almost a month. Other specials such as the fresh fruit and vegetable box or meat combo box can also be purchased. Call 1-877-366-3646 or check the Website at <http://www.angelfoodministries.com/>.
Just Ask:Don’t be afraid to ask for help. The suggestions in this article can get you started. You should also ask your diabetes educator, a hospital or clinic social worker, local pastors, friends, and family if they know of other sources of help. The goal is to find a way to stretch your budget and keep you healthy.
Prescription Assistance Programs
Provides information about assistance programs of all kinds
Partnership for Prescription Assistance
Offers a single point of access to more than 475 public and private patient assistance programs
A resource center with information about all kinds of patient assistance programs
Discount Prescription Cards (Must have no prescription insurance)
Merck Prescription Discount Card
15%-20% discount on medications
Together Rx Access
Save between 25%-40% on brand name prescription medications
Abbot Diabetes Care Patient Assistance Program
Provides one meter, strips and lancets for one year. Strict eligibility guidelines
Assists qualifying persons of any age with assistance in purchasing their first insulin pump
IPump.org - Request for Essential Diabetes Supplies (REDS)
Diabetes supplies for qualified patients for up to three months
by Gail Brashers-Krug
From the Editor: Gail Brashers-Krug prepared a primer on understanding oral diabetes medications. Since a large segment of the diabetic community take oral medications to treat their disease, we include this critical information here:
Today almost twenty-one million Americans have diabetes, and more than 90 percent of those have type 2, or insulin-resistant diabetes. Doctors often prescribe oral medications to treat type 2 diabetes, either alone or in combination with insulin therapy. This article provides a guide to those oral medications.
Which Diabetics Use Pills?
Diabetes generally comes in two types. Type 1 diabetes occurs when the body does not produce enough insulin on its own. In treating type 1 diabetes, you must restore the proper amount of insulin—either by taking insulin (through injection or inhalation) or by receiving a transplant, either of an entire pancreas or of specialized pancreas cells, called islet cells. Type 1 diabetes cannot be treated with oral medications.
Type 2 diabetes occurs when the body produces enough insulin but gradually becomes insulin resistant—that is, loses the ability to process insulin. Type 2 diabetes is usually controlled first through diet and exercise, which improve your body’s ability to process its insulin. For most type 2 diabetics, however, diet and exercise changes are not enough. The next step is oral diabetes medication. Moreover, most type 2 diabetics eventually stop producing enough insulin and often cease insulin production altogether. As a result, many type 2 diabetics will ultimately need insulin therapy in combination with their pills.
How do the different pills work?
Oral diabetes medications attack the problem in three ways:
More insulin: Some pills stimulate your pancreas to produce more insulin. The first successful diabetes pills were the sulfonylureas (e.g., glyburide, glipizide, glimepiride, tolazamide, chlorpropamide, and tolbutamide). These are insulin secretagogues, i.e., chemicals that cause your pancreas to produce more insulin. When you take these medications, your body is still not processing insulin as effectively as it should, but more of it is in your bloodstream to process.
More recently another group of oral medications have been developed that, like the sulfonylureas, stimulate increased insulin production. These medicines, called by the brand names Prandin and Starlix, are more effective than the first generation of drugs, but they accomplish the same purpose—that is, they overcome insulin resistance by increasing insulin supply.
The obvious problem with the insulin-increasing medications is that they can cause hypoglycemia (low blood sugar). In addition insulin secretagogues become useless when the pancreas ceases insulin production, as it eventually does in many type 2 diabetics. When this happens, insulin must be injected.
Using insulin better: Newer diabetes medications attack type 2 at its source: insulin resistance, the body’s increasing inability to use insulin. Drugs known as TZD’s (trade names Actos and Avandia) directly attack the problem, making the body temporarily more sensitive to insulin action. These medicines can be prescribed alone, with the sulfonylureas, or in a compound medication like Avandamet (Avandia and Metformin). TZD’s help the type 2 diabetic make better use of the insulin he or she still produces. They are useless where insulin is not present; they are not a substitute for insulin.
The TZD’s, Actos and Avandia, have recently caused concern in scientific circles because they may increase the risk of heart attack for patients who already have heart failure. As a result of that concern, the FDA held hearings and required that the drugs carry a boxed warning stating that they are unsuitable for patients with heart failure.
Less glucose: A third category of medicines, including the widely-prescribed Metformin, stimulates the liver to produce less glucose, and/or temporarily suppress the digestive enzymes that turn carbohydrates into glucose, slowing digestion and glucose absorption, keeping glucose levels more even. More a dietary management tool than antidote to insulin shortage, these medicines help some diabetics keep a more stable blood glucose level and avoid post-meal spikes. Unfortunately, they can have many side effects and are less than universal in their utility.
What About Using Pills and Insulin Together?
Unfortunately, oral medications alone often cannot control diabetes. Many type 2 diabetics, diagnosed as young adults, at first successfully control their condition with diet and exercise, but find they need the pills as they grow older. A number of years and dosage increases later, these diabetics have reached the limit of what oral medications can do for them, and they need to start injecting insulin to keep their blood glucose at a safe level.
When one’s blood glucose levels and A1c values begin to climb, despite diabetes pills, it is time to begin injecting insulin. But many diabetics just do not want to take that step—an attitude healthcare professionals call psychological insulin resistance. Some of this is plain old fear of sticking yourself with needles—nurtured by memories from childhood in the bad old days of dull-as-nails reusable syringes. But some doctors contribute to the problem when they don’t make it clear to the patient why staying with oral medications is no longer working. Staying on the now-ineffective pills means that blood glucose will be out of control. Poorly controlled glucose leads to heart disease, stroke, blindness, kidney failure, neuropathy, and even amputation. Even worse, some doctors assume their patients do not want to begin regular insulin injections, so they don’t even suggest it. The risks of remaining on oral diabetes medications once the pancreas has ceased producing insulin are far greater than the risks of taking insulin.
Once your doctor has decided to implement an insulin regimen, he or she may still keep you on oral medications or change the dosages or stop certain medications altogether. For many type 2 diabetics a combination of oral medication and insulin therapy is the most effective way to control their diabetes and delay or even prevent the onset of complications.
The year 2006 saw the introduction of Exubera, an inhalable insulin. For the first time we have insulin that does not require injection. But there are problems. First, Exubera is fast-acting insulin, with a response curve quite similar to that of Humalog. No longer-acting inhalable insulins are yet available. Another problem is high cost. Exubera does what fast-injected insulins do, without the needle stick but at about twice the price. Your insurance may or may not accept that cost.
A third category of diabetes medicine also exists, which is neither oral pills nor insulin. It is called Byetta, a medicine injected twice a day and made from a synthetic form of Gila monster saliva. Byetta’s active ingredient, exenatide, works by mimicking the effects of a human hormone called GLP, which is normally released after meals, stimulating digestion and insulin production. GLP also discourages the liver from producing too much sugar. Byetta has one highly touted side effect: it can cause significant weight loss. Unfortunately, however, it can also cause severe nausea.
It is now far easier for you and your doctor to tailor your diabetes medications, whether oral or injectible, with or without insulin, to your specific needs—improving your control and lessening your possibility of serious complications.
The new FDA warning accompanying Actos and Avandia states that they should not be taken by patients with heart failure. Keep in mind that heart failure is not the same thing as a heart attack. Heart failure means that the heart can’t pump enough blood to the body’s other organs. You can have a heart attack without having heart failure, and you can have heart failure without having a heart attack. If you have had any heart trouble, check with your doctor to make sure that you do not have heart failure.
How It Works
Increases insulin secretion
May cause hypoglycemia
Increases insulin secretion
May cause hypoglycemia
Increases insulin secretion
May cause hypoglycemia
Avandia (rosiglitazone maleate)
Helps cells respond more effectively to insulin
Cannot be used in patients with heart failure
Actos (pioglitazone HCl)
Helps cells respond more effectively to insulin
Cannot be used in patients with heart failure
Decreases the liver’s glucose production
Most commonly prescribed diabetes drug
Riomet (metformin in liquid form)
Decreases the liver’s glucose production
Liquid form of the most commonly prescribed diabetes drug
Slows intestinal absorption of some carbohydrates
Works best when taken with the first bite of food
Slows intestinal absorption of some carbohydrates
Works best when taken with the first bite of food
by Gary Scheiner
From the Editor: Gary Scheiner (MS, CDE) is a diabetes educator with a private practice (Integrated Diabetes Services) and the author of Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin. He has been diabetic for twenty years, and he offers consulting services in-person, by phone, and through email. From the Winter 2009 edition of Voice of the Diabetic we reprint his commentary on the importance of type 2 diabetics’ use of insulin when other therapies have been determined to be inadequate for controlling the disease. Here is what he says:
Insulin has a wonderful reputation among people with type 2 diabetes. With many it is about as popular as moving to a nursing home (or a Florida retirement community), just one step away from the grave. But nothing could be further from the truth. If anything, taking insulin keeps you as far away from the mortician as possible. Despite recent advances in medical therapy, insulin remains the most potent and effective treatment for elevated blood glucose. It is a more natural substance than pills (chemically similar to the insulin produced by the body), and it lacks many of the potential side effects of oral medications.
Today more than fifteen million people with type 2 diabetes live in the United States; more than three million of these take insulin. Many more people should probably be taking insulin. Here is why:
Nature of the DiaBeast: Type 2 diabetes is a progressive condition. It gets worse over time. It usually starts out as a state of mild insulin resistance: the insulin produced by the pancreas is not properly used by the body’s cells. This results in a gradual increase in the blood sugar level, which promotes increased insulin production by the pancreas. Eventually the pancreas is unable to make enough insulin to overcome the insulin resistance, and glucose levels rise high enough to require medical treatment.
During all of this time the pancreas is working harder and harder to secrete as much insulin as possible. Just like a machine that is strained and overworked, the insulin-producing cells eventually burn out and cease to function. This is why the treatment for type 2 diabetes tends to become more aggressive over time. Initially, many people with type 2 diabetes can control their blood sugar through exercise (which improves insulin sensitivity) and a healthy diet with limited carbohydrates. Once this fails to achieve desired blood sugar levels, oral medications are often added. Some medications reduce the amount of sugar produced by the body; some improve sensitivity to insulin; and some stimulate the pancreas to produce as much insulin as possible. Eventually the oral medications (combined with diet and exercise) are unable to do the job, and insulin is added to the treatment.
Oral medications really do have their limits. Unlike insulin, which lowers blood sugar directly by causing the body’s cells to absorb insulin from the bloodstream, oral medications work indirectly. They work only when the pancreas is able to produce sufficient amounts of insulin. Once the pancreas is unable to keep up with the workload, no amount of medication is going to solve the problem. And it really can be a problem. Elevated blood sugar levels cause short-term problems (tiredness, infection, impaired healing, diminished mental and physical abilities, mood changes) as well as long-term complications (blindness, kidney failure, nerve disorders, heart disease).
Insulin to the Rescue: Taking insulin is easier and
safer than ever before. Insulin syringes have short, super-thin
needles that you can barely feel. Insulin can also be administered with
an insulin pen: simply dial up and inject. Don’t forget, insulin
is injected into fatty tissue; it is not injected into muscle,
blood vessels, or any kind of sensitive tissue. Fat has no nerve
endings, so the injection procedure is virtually pain-free.
In recent years new insulin formulations have come to the forefront. Basal insulin, which works slowly and gradually over an extended period of time (like a time-release capsule), may be enough to get your diabetes under control. Glargine (brand name Lantus) and detemir (brand name Levemir) are two such insulins. They are usually taken once or twice a day, and they do a good job of controlling blood sugar levels overnight and between meals. Having insulin working all the time helps to rest the pancreas so that it can generate extra insulin at mealtimes. Because basal insulin does not have a pronounced peak, it rarely causes hypoglycemia (low blood sugar). In many cases basal insulin is all that is needed to control the blood sugar throughout the day and night.
In some instances, even with the addition of basal insulin, the pancreas is unable to make enough insulin at mealtimes. This results in large blood sugar spikes after meals and snacks. Post-meal spikes have been shown to damage blood vessels and contribute to many of the complications of diabetes. A number of strategies can be used to prevent the spikes.
Perhaps the most effective solution is to take rapid-acting insulin at each meal in addition to the usual injections of basal insulin. This is called a multiple daily injection (MDI) program. Rapid insulin, including Lispro(brand name Humalog), Aspart(brand name NovoLog), or Glulisine (brand name Apidra) is usually taken at the onset of each meal or snack. Rapid insulin starts working in approximately fifteen minutes, peaks in about an hour, and lasts for about four hours. The dose can be adjusted based on the amount of carbohydrate in the meal or snack. Rapid insulin, just like basal insulin, can be taken using a pen or syringe.
Another effective option would be to use an insulin pump. Insulin pumps are beeper-sized and battery-operated. They deliver tiny pulses of rapid-acting insulin throughout the day and night, which effectively serves as the basal insulin. The user programs a larger dose, called a bolus dose, to be delivered at meal and snack times. The insulin is delivered from the pump into a small plastic tube that sits just below the skin.
In order to cut down on the number of injections required with MDI or the complexity of using an insulin pump, some people opt to use premixed insulin, which usually consists of intermediate insulin known as NPH (a cloudy mixture which peaks four to ten hours after it is taken) combined with rapid insulin. Taken at breakfast and dinner, premixed insulin provides some basal insulin throughout the day and night (albeit with pronounced peaks and valleys) and rapid insulin to offset breakfast and dinner.
Some physicians also recommend a combination of insulin and oral medications. For example, basal insulin is often combined with medications called meglitinides (brand names Prandin and Starlix) or DPP-4 inhibitors (brand name Januvia). These medications help the pancreas to secrete extra insulin, specifically at mealtimes.
Insulin is not ideal for everyone with type 2 diabetes. It requires some dexterity to administer the injections. If the doses are incorrect, it can cause hypoglycemia (low blood sugar). If not balanced with sufficient exercise and a healthy diet, insulin tends to cause weight gain.
Don’t lose sight of the fact, however, that diabetes is a disease that requires aggressive treatment. If your blood glucose level is frequently above target or your HbA1c is above 7 percent, talk to your doctor about intensifying your therapy. Starting insulin or taking your insulin program to a higher level may give you just the results you’re looking for.
by Gary Scheiner
From the Editor: In the Summer 2007 edition of Voice of the Diabetic, Gary Scheiner thoroughly examined the positive and negative aspects of using a pump. We reprint his perspectives here:
More than one hundred thousand people in the United States use insulin pumps. Why have so many abandoned their trusty syringes and made the switch? Why isn’t everyone using them? Should you consider using one? Nothing sparks more debate among insulin users than the concept of pumps versus shots.
How Does a Pump Work?
The pump is a beeper-sized device that contains a cartridge filled with fast-acting insulin. It mimics your pancreas by releasing small amounts of rapid-acting insulin every few minutes. This is called basal insulin, and it is designed to match the glucose released by the liver, thus keeping the blood sugar level steady between meals and during sleep. When you eat, you program the pump (with the touch of a button) to deliver a larger additional dose of insulin right away. This is called an insulin bolus, and it is designed to match the carbohydrate level in the food.
Who Should Consider a Pump?
All of you with type 1 diabetes and those type 2 diabetics who produce little or none of your own insulin can consider a pump. You will need the ability to press a few buttons with confidence, and you should be prepared to test blood sugar levels at least four times every day and learn how to count carbohydrates to set the bolus levels properly. You’ll need to keep good written records of blood sugars, insulin doses, carbohydrates eaten, and physical activity.
You will also need to have adequate insurance to use an insulin pump
or be prepared to pay for it yourself; they cost around six thousand
dollars, and the supplies that go with them cost one to two thousand
dollars a year. Luckily most private medical insurance (including
Medicare) now covers them.
Pump Pros & Cons
Before you jump to the pump, take a look at both the plusses and minuses. Based on my ten years of experience using shots, twelve years on the pump, and feedback from over a thousand patients on both forms of therapy, I present some benefits:
1. More stable blood sugars:Reductions
in HbA1c are common in those whose readings are often high when using
shots. Additionally, fewer high-to-low and low-to-high swings occur.
2. Fewer low blood sugars: When you use only fast-acting insulin, no long-acting insulin peaks happen when you’re not eating. This makes pump therapy a good choice if you have frequent lows or an inability to detect low blood sugars.
3.A more flexible lifestyle:Raise your hand if you can eat, sleep, and exercise at the same times every day. It’s tough, right? The pump lets you choose your own schedule.
4. Dosing accuracy: You’ll get a bolus calculator that helps you determine mealtime doses based on carb intake, blood glucose levels, and the amount of insulin still active from previous boluses.
5.Precise dosing: Within tenths or twentieths of a unit, precision is achieved with the pump.
6.Convenience:You don’t have to draw up syringes every time you need insulin; just reach to your side and press a few buttons.
7. No shots: You change the pump’s infusion set just two or three times a week—no more discomfort from multiple daily insulin injections is necessary.
8. Easy adjustments for life’s little circumstances:You can adjust the pump’s basal rate to permit good blood sugar control for things like illness, seasonal sports, restaurant food, and menstruation.
9. Weight control:Eat what and when you choose; snacks are not required when you use a pump.
10. Novelty:The high-techness of the pump can add a dimension of excitement and fun to one’s diabetes care.
1. Cost:Although most insurance plans cover insulin pumps and supplies, often co-pays and deductibles can be relatively high.
2. A learning curve:Don’t expect good control right away. It may take you a few months to get the basal and bolus doses regulated and adjust to using the pump.
3. Inconvenience: Wearing the pump around the clock, even during sleep, can become awkward once in a while.
4.Technical difficulties: As a mechanical device, pumps are prone to occasional infusion set clogs, power failures, computer glitches, and damage due to typical wear and tear.
5. Skin problems: Your skin can become irritated from the infusion set adhesive.
6. Ketosis: The absence of long-acting insulin with pump use can present a problem if insulin delivery is interrupted for more than a few hours. High blood sugar can occur, and ketones may appear in the bloodstream and urine.
7. Infusion set changes:You must change your infusion set every couple of days. This three-to-ten-minute procedure involves numerous steps and can be momentarily painful or traumatic for the novice pump user.
The Next Step
Discuss this decision with your doctor—it’s an important one for you and your family. If your doctor is not familiar with insulin pumps or dismisses them as of time, consider finding a diabetes specialist who is familiar with pump therapy. Ideally, find a doctor who invites your input and works with diabetes educators, who can assist you with your pre-pump education and post-pump blood sugar management.
Insulin pump manufacturers and distributors offer information on their Websites, so you can learn more as you make your decision. Find out if there are insulin pump support groups in your area; they are excellent forums for meeting pump users and finding out about their experiences.
by Ann S. Williams
From the Editor: In the Fall 2007 edition of Voice of the Diabetic, Ann Williams offered some general advice about planning for times of illness. While this information is applicable to everybody, it may prove particularly important for diabetics. Here's hoping you don't need to rely on these strategies too often. Her suggestions follow:
Although we all hope to stay healthy year-round, times when you don’t feel well will inevitably come. During the winter and early spring many people catch a variety of illnesses such as colds, sore throats, and influenza.
While these seasonal illnesses are inconvenient for everyone, they are potentially dangerous if you have diabetes because when you are sick the stress of the illness makes your blood glucose (sugar) rise. High blood glucose makes your body’s immune system less effective at fighting germs and also makes you feel sicker than you would with normal blood glucose. High blood glucose also causes the kidneys to make more urine, which can lead to dehydration. This, in turn, can lead to even higher blood glucose. This can become a vicious cycle, which at its worst can become a medical emergency.
Most of the time, however, this vicious cycle can be prevented.
Some simple planning can help you keep your blood sugar in control
during times of illness so your body can recover quickly. Sick-day
planning should include three parts: First, preventing illness is much
better than becoming ill. Next, it’s important to have a set of
supplies on hand that you would need if you were sick, so you don’t
have to buy them while you’re out of commission. Finally, you need to
know what to do to manage your diabetes during illness.
A few simple steps you can take to avoid illness, even when it’s going around, are useful to know. You should make sure that all of your immunizations are up to date. This can be as simple as asking your doctor when you have your regular checkup whether you need to update them. In general most adults with diabetes should have had these immunizations at some time in their lives: measles, mumps, and rubella (MMR) and chickenpox (if they have not had the diseases); Zostavax for shingles; tetanus and diphtheria every ten years; pneumonia every five years; and influenza every year before the flu season begins. Your doctor may recommend other vaccinations if you have particular risk factors.
The other prevention steps involve common sense and simple low-tech
practices. As much as possible you should avoid being around people
who are sick. Further, throughout the day you should frequently wash
your hands, especially when illness is going around. People tend to
pick up many illnesses from touching surfaces that have germs from
having been touched by people with illnesses. Such surfaces can include
doorknobs, telephones, papers, pens, pencils, table tops, etc. It’s
impossible to live a normal life without touching such things. Many
studies have shown, however, that by simply washing your hands with
plain soap and water, you can greatly decrease your risk of getting
sick from these common sources of infection.
Supplies: A Sick-Day Box
You may find it helpful to have a box of supplies that you will need if you become sick. The box itself can be a shoebox, a cardboard box, or a plastic box. It could even be a drawer or shelf where the supplies can remain undisturbed until you need them, or anything else that is large enough to contain the following items:
Managing Diabetes During Illness
The following sick-day guidelines apply to most people with diabetes. Your personal situation, however, might call for something slightly different. It’s best to talk with your doctor while you’re well about personal guidelines for when you become sick.
Use the urine ketone sticks to check for ketones;
Check your blood glucose more frequently—about every two hours.
If your blood glucose stays above 240 for four or more hours, call your doctor.
If you feel unsure of what to do.
If you cannot hold down your diabetes medication.
If you cannot hold down any solid food or liquid.
You have been vomiting or had diarrhea for more than two hours.
If you have ketones in your urine.
If your temperature is above 101º F.
If you have trouble concentrating or staying awake.
If your blood glucose stays above 240 or below 60.
If you have symptoms of dehydration or ketosis: sunken eyes; dry cracked lips, mouth, or tongue; skin that remains tented up after being pinched; fruity-smelling breath; nausea and dizziness; or difficulty concentrating.
All of this preparation may seem like a lot of work while you are well. But, if you have a serious illness, it will pay off. By having supplies available and knowing what to do, you will be able to recover faster—and you could prevent a very serious illness, a trip to the emergency room, or even a lengthy hospitalization. So be prepared. Put together your sick box and sick-day instructions today.
by Paula S. Yutzy
From the Editor: Paula Yutzy, a diabetes educator and nurse, offered some fundamental information on the correlation between diabetes and heart health in the Spring 2007 edition of Voice of the Diabetic:
Two out of three diabetics will die from a heart attack or stroke,
which means cardiovascular disease is more likely to kill you than any
other complication of diabetes. I was dismayed to learn that, in a
recent survey of people with diabetes, many did not even identify
cardiovascular disease as a complication of diabetes. Yet your risk,
just by having diabetes, is very high. You need to know how to stay on
top of this threat to your health. Understanding your test results for
what I call the "Three Musketeers" of cardiovascular disease is a must
for all diabetics and their caregivers. I encourage you to find a way
to be physically active and watch your diet as well. These steps will
help you reduce your risks from cardiovascular disease.
The Three Musketeers
I call these three factors the Three Musketeers because, where you find one, you often find the others. You need to know them by their descriptions and their numbers.
High Blood Sugar: You know that you need to pay attention to the amount of glucose in your blood. The A1c test indicates your average blood sugar level over the preceding two or three months. The name comes from the fact that the component of blood to which sugar sticks, and can therefore be measured, is called hemoglobin A1c. High blood sugar is generally regarded as an A1c of over 6.5 percent. The American Diabetes Association states the A1c goal for most diabetics is under 7 percent and under 6 percent if possible, without significant hypoglycemia. Consult your healthcare provider for an individual goal.
High Blood Pressure: High blood pressure causes stress on blood vessels and contributes to damage that also leads to kidney failure and retinopathy. People with diabetes should be treated to achieve a systolic blood pressure under 130 mmHg and a diastolic blood pressure under 80 mmHg. Many people are on blood pressure medication but are not reaching these targets. They should check their own blood pressure with a sphygmomanometer (blood pressure machine) at different times of the day. Automatic and talking sphygmomanometers are available. If you get one of your own, take it to the doctor’s visit with you and have its accuracy verified by comparing the reading to what the doctor gets. Some people have what we refer to as white coat syndrome, meaning they have an increase in their blood pressure when it is checked at the doctor’s office but not at home. Keep a record of what you get at home and show it to the doctor when you go to your visit.
High Cholesterol: The cholesterol test measures three types of fats (lipids) in your blood. You get high cholesterol in two ways: from your genes if it’s in your family health history and from the fat in meats, egg yolks, and dairy products that you eat.
The most dangerous type of blood fat is the low-density-lipoprotein
(LDL). This is often called bad cholesterol, because it accumulates in
blood vessels and clogs them. High-density-lipoprotein (HDL) is the
good kind of cholesterol that actually works to remove LDL from the
blood. Triglycerides are storage and energy fats, and they are the most
common fat cells in your body. I frequently see diabetics who have
high LDL and triglycerides, and low HDL. This combination increases the
risk of cardiovascular disease and is one you should strive to avoid.
Medications and Diet
Several medications exist that can be used to lower LDL. Statins (e.g., Lipitor, Zocor) are frequently prescribed. Some people have bad reactions to these and get muscle pain or cramping; if this happens to you, notify your doctor immediately. You may need to change to another type of cholesterol medication.
I am amazed by the many people with diabetes who take expensive medication to lower their blood fats and at the same time eat lots of fatty food, which raises their blood fats. Every day in my practice I seem to run into someone on cholesterol medicine who eats eggs, sausage, and biscuits with butter for breakfast and a burger and fries for lunch or dinner. If you do this, you are defeating the efforts of the medication to lower blood fats by choosing to eat these foods.
I am also surprised that many people (frequently men) do not
recognize fatty food for what it is. I have devised a simple solution:
put the food on a napkin and walk away. After five minutes, if you see a
grease spot on the napkin, that food has too much fat, and you should
choose something else to eat.
You should discuss your exercise plans with your doctor before you begin. If you have not had a stress test, ask if your doctor thinks you should. The stress test allows the doctor to see how your heart is working during exercise so that he can identify problems before they become serious.
Once exercise is considered safe, you now have to decide what kind of exercise you can do. You should begin slowly and gradually increase your activity. You might go to a gym or get a recumbent bike or stepper for use at home. Chair dancing is good for those who have mobility problems. Put on your favorite music (this should not be a waltz), sit in a chair without arms, and dance with your arms to the music. Move your legs to the beat if you like. You will be surprised how much exercise this can be.
I remember a patient I had years ago. She was a tiny lady of about seventy. I described chair dancing to her and encouraged her to try it. When she came back, she told me that she and her ninety-three-year-old mother would sit in the kitchen each morning and chair dance to the oldies. They laughed and had a great time. I can just see them in the kitchen dancing and giggling together. She reported that they had not had such fun for a long time.
When you exercise, you should warm up for five minutes by stretching and easing into your activity. Bike, walk, or swim slowly at first. Then increase your speed. An easy way of judging your pace is this: if you can talk while you exercise, you are going the right speed. If you can sing “Happy Birthday,” you are not going fast enough, and if you can’t get words out, slow down. Some people like to count their pulse, but I think these tests are easier.
Start exercise sessions with five minutes warm-up. Then do five minutes going faster. As you get in the exercise habit, increase the middle exercise time slowly by two to three minutes every few days, until your complete exercise period is at least thirty minutes. This should include cooling down for five minutes by going slower to give your heart time to slow down.
The Three Musketeers are also known as the ABC’s. Do you know your ABC’s? A is for A1c, B is for blood pressure, and C is for cholesterol. The ABC’s are manageable, but I see many who are not handling them as well as they could. A recent report said that only 37 percent of people with diabetes had an A1c under 7 percent, only 36 percent had blood pressure under 130/80, and only 48 percent had total cholesterol under 200 mg/dL. Only 7.3 percent had all three in the control range.
You can improve this situation and decrease the effects of cardiovascular disease. Until we do, two of every three people with diabetes will die of a cardiovascular event. Although heart disease and stroke are the leading causes of death in people with diabetes, they are preventable if you have your ABC’s in control. Keep the Three Musketeers away.
by Ed Bryant
From the Editor: Ed Bryant, a longtime leader in the NFB's Diabetic Action Network, shared his accumulated experience and knowledge on coping with low blood sugar in the Winter 2006 edition of Voice of the Diabetic. Knowing this information is critical. Ed's article, written from a layman's perspective, follows:
The most common problem diabetics experience today is not high but low blood sugar. Diabetes medications are powerful but imprecise, and today’s blood glucose testing cannot always guarantee you’ll avoid going too low.
The Diabetes Control and Complications Trial, completed in 1993, proved that the major diabetes complications―retinopathy, nephropathy, neuropathy, and diabetic heart disease―all follow elevated blood glucose. Diabetics who keep their numbers down cut the risk of these complications. But, in the rush to cut blood glucose and keep it down, we sometimes fall too far. We don’t even have to be practicing tight control to have an episode of low blood sugar. Type 2 diabetics can have low blood sugar reactions.
Why is immaterial: missed meals, improper medication dosages, departure from scheduling, abnormal exercise, consumption of alcohol, stress, periods of illness, or even for no particular reason. Sometimes the numbers just drop too far. What happens next?
A person going into a low can appear to the uninformed to be drunk. Disoriented or confused people going low can sweat, stumble, lose their bearings, become aggressive, or pass out. But they are not drunk, and they are not having any fun. The brain isn’t getting the nourishment it needs, and the person can’t function. Depending on severity and the individual, the person can be light-headed, unconscious, or comatose. A hypoglycemic event is an emergency, and intervention is necessary.
When You’re Low
You have two lines of defense. One is your schedule. Know what your body needs and keep to it. Take your medications on time, eat the right amount at scheduled intervals, and get the appropriate exercise routinely. The second line of defense is your blood glucose monitor. The more you test, the better idea you will have about where your sugars are.
If your numbers are dropping dangerously, your monitor will reveal it. This means you have to pay attention to your body. If you begin to feel weird, and you are not sure, test. The numbers will tell you if you’re heading for never-never land.
If the numbers are at or below 70 mg/dl, and you haven’t just
eaten, eat a snack immediately. Note: People are different. My figures
are general, and you need to work with your monitor and your healthcare
team to determine where the trip-wire is for you as an individual.
Your trip-wire numbers may be higher or lower than these suggestions.
You need to determine where they are.
So you’re going down. You need sugar fast. You have some choices. Several pharmaceutical companies make glucose tablets or glucose gel for just this purpose, and you can find them at pharmacies. Depending on the severity of your low, three or more might get you back up. People are different; you need to learn how many grams of simple sugar you need to get out of an insulin reaction. The tablets I use have four grams of sugar each, and I generally need four of them. You’ll probably be different.
Some folks carry LifeSaver candy or NECCO Wafers, which don’t work quite as fast. Canned apple juice or pineapple juice will work, and some nurses recommend a glass of milk. You need about fifteen mg of sugar (some people need more). Read the labels. Then have something with you that will do the job when you get low.
You do not want something artificially sweetened; you need actual
sugar. You also want to avoid something high in fats. Fats can retard
quick sugar absorption, so that candy bar may not help you as quickly
as you need.
When It’s Someone Else
It is important to know that a person is diabetic and is subject to hypoglycemia. A variety of conditions with similar symptoms to low blood sugar can occur. Time is of the essence, so medical ID bracelets (ask your pharmacist), can really help in such an emergency. A card in the wallet helps too. It can save emergency responders a lot of critical time.
If you know the person is diabetic and he or she begins exhibiting predictable symptoms of low blood sugar, he or she is probably too low and needs a sugary snack. Provided the person is still in shape to eat or drink safely, you should intervene. Ask if the person is low. Note the response. If the response is goofy, he or she is probably going down. Offer some sugar. If the low is far enough along, the person may need some help.
Remembering the story of the Boy Scout who helped a granny across
the street that she didn’t want to cross. Be cautious and
perceptive—there is no place for bull-in-the-china-shop tactics in
diabetic intervention. Listen and pay attention. Note the time. If you
have to call the ambulance, the paramedics will want to know the whens
Sometimes a person is just going down too fast for oral sugar to stop the slide. On other occasions the person isn’t discovered until he or she is so low it doesn’t make a difference; the patient can’t swallow or is unconscious. Never force anything down the throat of an unconscious person or one who can’t freely swallow; it can be aspirated into the lungs and cause pneumonia. This can kill. Unless you’re a medical professional, you should recognize the time and place to call medical professionals. Don’t play hero—it could cost a life.
The paramedics will need all the information you can give. Tell the dispatcher it is a diabetic low and where the person is. Answer the questions as best you can, and then let the paramedic handle it. They will probably be able to bring the individual back to consciousness right there. If they feel it necessary, they will transport him or her to the hospital.
After testing the person’s blood, the paramedics can give an
intravenous injection of glucose, which can bring the person back very
quickly. They will check to make sure nothing else needs their
attention, and they will perhaps test again. As the person comes back,
he or she will probably not remember a thing about what has happened. If
he or she misbehaved while low, don’t hold it as evidence of a
diabolical character defect.
Sugar, oral or by injection, raises the blood glucose, but it burns off quickly. Avoiding another crash is best achieved through eating regular food, like a sandwich, as soon as he or she is able. Glucagon, the emergency injection many doctors recommend for home intervention if someone has an extreme low, also causes a sharp and temporary rise and needs to be followed with food as well.
Some folks can tell most of the time if they’re getting low. Some folks can’t. By the time they notice, they’re too far gone to help themselves. People who have frequent lows and people who practice razor-tight control may risk such hypoglycemia unawareness. These folks need to test a lot, and they really need to pay close attention to their schedules. Anyone can get low, but the individual with hypoglycemia unawareness is more likely to get into trouble.
Lows will happen. Sometimes you can tell one is coming from the
way you feel, and sometimes you can’t. You are better off accepting the
fact that you will have lows and be prepared to do something about it.
Here are some suggestions that you might follow:
1. Keep to your schedule; cut your risks.
2. Test your blood sugar often.
3. Have appropriate snacks available, and always carry LifeSavers or glucose tablets, just in case.
4. Brief friends and family on what to do if you can’t help yourself.
5. Wear or carry medical ID materials, so emergency personnel don’t have to guess.
6. Keep glucagon on hand, and make sure someone in your family is trained how and when to use it.
7. Report all serious lows to your doctor.
by Ann S. Williams
From the Editor: Ann Williams addressed the Diabetes Action Network at its annual meeting during the 2008 NFB national convention. Her words of encouragement and call to action reflect the attitude that must prevail among blind diabetics interested in creating independent, nonvisual methods for coping with this disease. In short, her comments embody the spirit and resolve inherent in the philosophy of the NFB. These sentiments serve as a good reminder of the mindset that blind diabetics must adopt in order to realize meaningful progress in gaining access to the devices and services that sighted diabetics enjoy. Her positive perspective seemed appropriate to include at the beginning of this section, which is devoted to exploring and describing some of the alternative techniques that blind diabetics use in managing the disease. This section, and for that matter this entire volume, cannot possibly hope to outline every good idea for living with diabetes as a blind person, but it goes a long way in discussing some of the best approaches devised so far. As time passes, experts will create other accessible diabetes-related services, supplies, and equipment. Keeping in touch with the Diabetes Action Network and the NFB generally will guarantee that you remain up to date on the evolving blindness and diabetes scene. In the interim here is an excerpt from Ms. Williams's July 2008 remarks; they encourage and set the right tone for bridging the gap between blindness and diabetes:
If you’re a blind person with diabetes, you don’t need me to tell you that not enough well-designed tools for blind diabetics exist. You already know that far fewer choices are open to you for diabetes self-management than there are for sighted people. You know that, even if a really good tool exists for an important diabetes task like blood glucose monitoring, it’s likely to exist as a sole choice, not as one of many good choices. But a group of people like you can improve this situation. You can speak for yourselves.
I have been a diabetes educator since 1987. My first job was in a blindness rehabilitation center—the Cleveland Sight Center—so I have worked with blind people from the beginning of my professional involvement with diabetes. I went to my first national diabetes convention, the annual meeting of the American Association of Diabetes Educators (AADE), in 1988. At that convention and at every convention I have attended since then, I have gone through the exhibit hall asking manufacturers of diabetes products to make those products accessible—especially blood glucose meters, insulin pens, and insulin pumps.
The result of all this effort has been unimpressive. Generally the companies express some interest, and sometimes they make a few promises of change, but they do not follow through with action. Sometimes at the convention the same people at the same diabetes companies will listen politely as we have the same conversation we had the year before and the year before that and perhaps even the one or two years before that. I know of one employee of a particular company who now hides when she sees me coming to her company’s display.
A few people have been more straightforward. They have explained to me that their particular company doesn’t see access for people with disabilities and diabetes as part of their company’s purpose. They think they should work to serve what they call average people with diabetes. These are those that they think of as the 90 percent of people with diabetes who have no complications.
But last year was different. I did my usual routine, but Tom and Eileen Ley, who are blind, were also there. They made the rounds on the exhibit floor, going to the same diabetes product manufacturers that I have been going to for years. They asked them all, “How are we going to use your product?” They engaged in conversation; they let themselves be known as people, not just statistics. The results were amazing—a partnership developed between the NFB and DDI around improving the Prodigy Voice meter and between the NFB and an insulin pump company seriously considering how to make its pump accessible.
I’d like to think that all those years that I spoke to these companies prepared them to hear Tom and Eileen. But it was even more important that Tom and Eileen showed up in person and spoke for themselves. In fact it’s almost always more effective when blind people speak for themselves instead of having sighted professionals speak for them. I think the reason is not any ill-will, but simply lack of knowledge and understanding. I notice that most sighted people who don’t have much contact with blind people cannot imagine the access problems that blind people face when they want to do things for themselves. This lack of imagination is utterly dispelled when real blind people stand in front of them and explain their situation. Real people, not statistics alone, are effective in promoting real change. Of course the best situation is collaboration between diabetes care professionals and the people they serve. So speak for yourself. Let people know how it really is for you; tell them how what they do can change your experience. The National Federation of the Blind Diabetes Action Network can help by serving as the collective voice for blind diabetics throughout America. Do for yourself. Speak for yourself. As blind people take charge of your diabetes management.
by Marilyn Brandt Smith
From the Editor: Marilyn Brandt Smith holds degrees in English, education, and counseling psychology. She has worked in the vocational rehabilitation field in several states and has written for and edited small-circulation magazines. The primary editor of a disability anthology, Behind Our Eyes, published in 2007, Ms. Smith has considerable experience with disabilities and the value of social networking. In this brief article published in the Summer 2008 edition of the Voice of the Diabetic, Ms. Smith emphasizes the value of support groups for blind diabetics who need to gather vital information and resources about their condition and common experiences. Here is what she says:
Pauline has been on the phone for an hour this morning. She moderates the diabetes support group on the Philmore voicemail system. Members have been leaving each other messages for almost four years, and Pauline makes sure information is current and that questions are answered in a friendly and factual way. Requests for special recipes, tips for lowering those high glucose readings, and suggestions from diligent shoppers who carefully sample the new sugar-free products or adaptive equipment find their way into the conversations of this group.
When hurricanes devastated her Louisiana home in 2005, Pauline kept the group going on her cell phone even when she had to move. Group members came to her aid when her husband’s business was closed, her home was devastated, and she almost ran out of insulin. The group was quick to show support when member Faith’s newborn son was diagnosed with diabetes. A dialysis patient herself, Faith has answered questions for many other frightened members. She has already traveled many of the paths they are facing now. And Penny inspires newly diagnosed members when she recounts the challenges of her sudden vision loss. She had to struggle to maintain her federal employment while coworkers, supervisors, and friends saw her in a different, and not positive, way. She had to prove her abilities, and to do that she had to stay in control of her diabetes. Thirty years later and still in control, she offers her years of expertise to others.
People like Penny, Faith, and Paula are available in hometown support groups and on the Internet through chat lists hosted by many organizations. Telephone and email contacts simplify mobility issues for people who have trouble with travel arrangements. Chat rooms also offer daily contact. Updates on a member’s frightening lows and speculations on what his endocrinologist will want him to do about it become of urgent interest. Members stay connected wondering if Amy will still be diabetic when her baby is born or how long it will take Tom to master the use of his new talking glucose meter. Most systems use careful record-keeping to protect their subscribers and participants from spam and advertising. Yahoo and Google groups for diabetics cover topics including nutritional information, low-carb and low-fat recipes, pump use, dialysis, and gestational diabetes. Several online groups for blind diabetics exist.
Networking with others who share the same concerns can provide resources and personal contacts. You may need to be selective if you don’t want to become overwhelmed. The choices you make about contacts and participation will depend on your needs, your interests, and the time you have to give to help others. Sharing your enthusiasm and group contacts with family members may make them feel more comfortable with your growing confidence about managing your diabetes. Networking works. Someone in your group may have an idea that your doctor’s office or medical team did not suggest.
Ask your primary care physician or healthcare team for a referral to local support groups. Members of your local chapter of the National Federation of the Blind may be able to direct you to groups in which other blind people have been made welcome. The Diabetes Action Network provides information and contacts at annual national conventions and may offer seminars using new equipment or hosted by professionals dealing with diabetes research or treatment. The diabetes support group at <www.healthcentral.com> provides links to national organizations that focus on different aspects of diabetes. Those who are newly diagnosed, the sensory or neurologically impaired, the obese, and people struggling with weight gain, are just a few of the populations that receive support. Information about local groups that
Local groups usually offer face-to-face meetings once a month. Family participation is often encouraged, literature is available, and question-and-answer sessions with professionals are provided, along with mentoring by group members who have experienced glucose control issues, difficulty working with their healthcare team, organ failure or distress, and lack of family understanding. Within the security and confidentiality of these groups, you will learn to share your experiences with people who have been there and done that before you. You in turn can help them cope with problems you have solved. Families meeting families sometimes ease the burden for the patient.
Improving self-care skills is the healthcare goal of a group of young women between eighteen and thirty in the Boston area. This group is sponsored by the Joslin Diabetes Center. In a rural community in the South, a group for seniors with type 2 diabetes focuses on nutritional improvements and exercise to avoid the complications of long-term diabetes. A community group in Grand Rapids, Michigan, recruits new members and expands the horizons of regular members by posting the topics and speakers for their meetings several months in advance. Recent meetings included Working the Swing Shift, Diabetes and Your Wallet, Move: Doing Exercise, and Diabetes Is Driving Me Crazy.
Support groups may lead to permanent friendships. Empathy, troubleshooting, and straight talk are provided as each is needed by participants. This is a win-win opportunity. Test the water. See if you’re comfortable talking to others who have already been where you are now. You will learn to trust your own ability to solve problems and to make decisions about your care. Your healthcare team will feel more confident knowing you have resources other than those from their office. Your family will absorb your growing confidence in your ability to take charge of diabetes in your life. Reach out. Remember, you don’t have to do this alone.
by Connie Kleinbeck
From the Editor: Connie Kleinbeck evaluated the few accessible glucose meters currently on the market in the Winter 2009 edition of Voice of the Diabetic. Knowledge of these devices is critical for blind diabetics. This arena will invariably evolve; remain active in the NFB Diabetes Action Network for the most up-to-date information on accessible diabetes technology. Meantime, here is what Ms. Kleinbeck has to say about accessible glucose meters:
Checking your blood glucose when you are blind can be challenging. In recognition of this fact, NFB Resolution 97-12 was adopted at the 1997 annual convention. It called on meter manufacturers to make their meters speech-accessible. Since then, and especially in the past few years, a number of talking blood glucose meters have been introduced. These new meters are smaller, faster, and much less expensive than the older accessible choices were. They require only a tiny drop of blood, and they are easier to use. The buyer, however, should beware. While these meters are being aggressively marketed to blind users, only the Prodigy Voice is totally accessible. Despite the hype you will find that you need sighted assistance to use essential functions such as time, date, and memory review on many of these products.
The Prodigy Voice, however, is accessible in all respects. It is the only talking meter with a repeat button for the last message spoken, an external headphone port, an audible memory, audible setup menus, and a customer service staff trained especially to assist blind customers. It was developed in close consultation with blind diabetics in the National Federation of the Blind. It provides the blind access to all blood-glucose-monitoring features available to fully sighted consumers.
With advances in technology, adding speech to a meter can be accomplished inexpensively—talk is cheap. More talking meters mean more choices for blind people or for those who appreciate multi-sensory testing. Manufacturers need to realize, however, that adding limited audio alone to a meter may meet the needs of some people with minimal vision loss, but it is not adequate or appropriate for people with moderate or severe vision loss. Blind people need spoken access to all meter operations to ensure independent use—access is truly golden. Since those with diabetes often experience frequent fluctuation in vision, many people with minimal vision loss may have problems using meters with limited audio output when their blood glucose is high and their vision is at its worst.
Hearing the test result once is not enough; it’s essential to be able to hear it again. Low-battery alerts, temperature alerts, and error messages are also important. Including blind users in the design process ensures that all functions of a talking meter are accessible for all users, regardless of the amount of vision loss. Meters should be compatible with computer screen readers and provide instructions in Braille, large print, and audio formats.
The chart below reviews six of the current talking meters. The older Duo products marketed by Prodigy and Advocate have a talking blood glucose meter and a wrist blood pressure cuff but are not included in the review because their meters require sighted assistance for coding. None of the meters reviewed have a backlight. All of the meters reviewed have a blood glucose range of twenty to six hundred and have clear, easy-to-understand voices.
Test Strip Comparison
In all cases the strips are packaged with the insertion end at the top of the strip container. The insertion end of all the meters has squared corners. The ends of the test strips that stick out of the meter have rounded corners, except for the Smartest Smart Talk meter strips. Although it is possible to insert strips upside-down, the meters will not turn on if you make this mistake. The backs of the strips are flat and smooth. The strips are generally easy to insert nonvisually; however, the Smartest Smart Talk meter strips may be more challenging.
Beyond the Test—Setting Up, Modifying Settings, and Accessing Other Meter Functions
Only the Prodigy Voice offers easy and independent access to use of the meter beyond testing. For example, in the Prodigy Autocode, Advocate Redi-Code, and Clever-Chek, the button for time, date, volume, temperature, and language is located inside the battery compartment, which is hard to open without sight. The Prodigy Autocode and the Advocate Redi-Code have only the one memory button on the front of the meter, but once again their memory readings are not spoken. The Clever-Chek has two buttons on the front, one for Control Solution tests and the other for Memory, but no functions other than testing are spoken.
Likewise, the Companion meter from Omnis Health requires sight to use a small scroll wheel on the left side to access memory recall, PC Link, set date and time, set three test alarms, sound volume, and language selection. It speaks only the code number, then says, “Apply blood to test strip,” and speaks the test result. Omnis Health also produces the Embrace meter, which has an on/off audible feature and looks like the Companion; however, it is thinner. PC Link software is not available yet. No other information is available for this meter.
The Smartest Smart Talk meter speaks only during the actual test process. Unlike the other meters, this one requires that a code key be inserted into the meter each time a new bottle of Smart Talk strips is opened. Although this additional step does not require sight, if you are unsure whether or not you have the bottle of strips and code key mixed up, you will need sighted assistance to identify them. The code key and test strip vial should match. The Smartest Smart Talk test strips also have a visual verification window to ensure that the user has obtained an adequate sample of blood.
Glucose meters have many features, and they all need to be accessible for a person with moderate to severe vision loss to use them independently. Prodigy Voice has proven it can be done. Assess the features carefully and remember, talk is cheap, but access is golden.
Talking Blood Glucose Monitor Comparison
Diagnostic Devices, Inc.
Diagnostic Devices, Inc.
Diabetic Supply of Suncoast
Progressive Health Supply & Source Corp.
Blood sample size
Hinged pop cap
Hinged pop cap
Hinged pop cap
Hinged pop cap
Hinged pop cap
Automatic Power Off
Meter available only through Distribution Program.
Meter available only through Distribution Program.
Cost of 50 Strips
Audible warnings/ errors
Only completely accessible meter presently for sale in the U.S.
Predecessor to the Prodigy Voice
No online user manual Online video instructions
No online user manual Scoll wheel on left side
Code key supplied with each bottle of strips must be inserted into the meter. Fill confirmation window requires sight
by Ed Bryant
From the Editor: Many diabetics and diabetic professionals assume that vision is essential if a person is to jab a finger successfully and collect a drop of blood on a test strip. Thousands of blind diabetics put the lie to this conviction every day. This article originally appeared in the Spring 2001 edition of the Voice of the Diabetic. Its content was updated in March 2009. Blind diabetics will appreciate these practical tips for effective finger sticking.
Diabetics know blood glucose monitoring is important because it helps us keep our diabetes under control. You should test often. The way you test matters too, because poor technique wastes strips and can give inaccurate readings. Good testing techniques will also minimize the number of times you must stick your fingers. If you have not worked out good finger-sticking techniques, I recommend the old adage, practice makes perfect.
I am a type 1 diabetic, and I empathize with those whose fingertips are bruised and sore from testing as well as with those who have trouble getting enough blood from the puncture site. Test strips are expensive, and people who must repeatedly stick themselves to get enough blood for a good reading can get very frustrated.
You should find which lancing device makes finger sticking least painful for you. I like the Softclix that Roche Diagnostics makes, but many others are on the market. Blood-borne diseases can be transmitted by finger stick, so never use someone else's lancet. Remember that lancet points dull fairly rapidly, and, if you reuse them, things can get painful.
Many pharmacists are now certified diabetes educators (CDEs). While any CDE should be able to help you choose a lancet and lancet holder that will work, sometimes it's easier to get to a pharmacist for advice about the blood glucose testing supplies available in the pharmacy that you use. Healthcare practitioners should show patients how to test for blood glucose properly because many patients have not mastered correct testing technique. My physician asks all diabetic patients if his staff can show them proper blood-glucose-testing techniques, which include finger sticking.
Gauge size increases as the lancet narrows. You should choose the narrowest lancet size that allows you to get a large enough drop of blood. People who have trouble getting a large enough blood sample may find it easier--if slightly more painful--to use a larger-gage lancet. Note: Many, but not all, lancets are interchangeable. Some must be used with certain lancet holders.
An alternative to the traditional lancet is the Microlet Vaculance from Bayer. This is an unusual combination of lancing device and small pump designed to obtain blood samples from sites other than the fingers. The device costs $25 today, and it is available from Bayer Corporation; telephone (800) 348-8100; Website <www.bayercarediabetes.com>.
Finger Sticking Locations
You should use the sides of your fingers as sticking sites. More nerves are present in the center of fingers, so lancing there may cause more pain. Some people occasionally use the middle of a finger if the sides have become too sore. I use all ten fingers for blood-sugar testing, and on each finger I have four penetration sites.
Ann S. Williams, a respected diabetes educator and herself a type 2 diabetic, chooses her test sites by day of the week and time of day. Her left index finger is for Monday, left middle finger for Tuesday, left ring finger for Wednesday, etc. On each finger, the side toward the thumb, opposite the base of the fingernail, is for suppertime; on the same side, about half way down, is for bedtime. Any extra tests are done in the area around the top of the fingernail.
She writes, "By using this method, you end up lancing the same site only once a week. I like doing it this way because I have such a hard time remembering where I last lanced, and this way I can figure out where I am supposed to be by day of the week and time of day."
If possible, wash your hands with warm, soapy water, which, besides cleaning, will bring additional blood to the fingers. Rubbing alcohol can be used, but alcohol may cause fingers to become dry, which might cause more pain when lancing. The fingers should be totally dry before testing. Dr. Ronald James, a diabetologist, says, "If your finger is dry and clean, I see no reason why you have to use rubbing alcohol." Note: Using a good skin cream may help soften your fingertips and will help with their appearance. Apply it after you test.
If the stick location doesn't clot thoroughly, you may experience bruising and soreness. After putting blood on the test strip, you should use a tissue and apply firm pressure directly on the puncture site. Some diabetics thoroughly clot after a few seconds; others may take longer. Once the bleeding stops, you should again use a tissue and apply firm pressure directly over the puncture location. If blood is on the tissue, you know bleeding is still occurring under the skin, so further firm pressure is required.
Once any diabetic (blind or sighted) tests blood glucose regularly, he or she will know roughly how long it takes for his or her blood to clot. Also, if blood is seeping from the puncture site, it can usually be felt because it is sticky. If you are not sure whether the blood has thoroughly clotted, you need only apply firm pressure a little longer.
Getting Enough Blood
When lancing, you should strive for a blood sample just big enough to make your meter work. In this way you will minimize pain and bruising. If you are a good bleeder, this standard approach works fine, but if you are not, try altering the procedure. Instead of gently milking the lanced finger, you may need to milk it vigorously. By milking the finger, I mean stroking and pulling downward from the base of the finger toward the tip and the sample site.
One category of people, those suffering from edema (excess fluid in the tissues), needs to be cautious with vigorous finger-milking. Because kidney problems are one cause of edema, check with your doctor about this condition.
I have talked to many diabetics who have had trouble getting enough blood after the finger stick. If not enough blood is on the test strip, the result could be skewed. I have experimented several times, by very gently milking blood from my punctured finger, and within two to three minutes I pricked another finger and vigorously milked the sample site. Guess what? In every test I found no appreciable difference in sample results. So I urge people to milk their fingers gently in most circumstances.
The rubber band method may be helpful too. Wrapping a doubled rubber band between the first and second joint of the finger to be lanced will cause the finger to become engorged with blood. This will help a larger drop of blood to form. Hold the rubber band down with the thumb while lancing. Remove the band as soon as lancing is completed.
For a long time many diabetics have vigorously milked their fingers to get an adequate blood sample. The clinical difference between gentle milking and vigorous milking is not significant. If enough tissue fluid is milked out, blood may be more like a plasma sample than like a whole blood sample. If you have a meter that reads plasma values, it will make no difference, and if you have a whole blood glucose monitor, the result in all likelihood will not be enough to alter an insulin dosage. Again, we should try to get an adequate blood sample by very gently milking the puncture site.
Many lancing devices allow you to adjust the depth of penetration. Shallow penetration should minimize pain. The same thing can usually be accomplished by holding the lancet more lightly against the skin. Use the shallowest penetration that provides enough blood for the test.
In the mailbox section of the December 1998 Diabetes Forecast, Dr. Adam Bloom discussed obtaining blood samples by milking the fingers. He reported that the National Committee for Clinical Laboratory Standards (NCCLS) states, "One can enhance blood flow from the puncture by holding the puncture site downwards and gently applying continuous pressure...proximal to the puncture site. Strong repetitive pressure (milking) should not be applied; it may cause...contamination of the specimen with tissue fluid."
Although such zero-error considerations are important for the research scientist in the laboratory, in practice this mixing of tissue fluids with blood does not appear to affect the readings obtained on home blood glucose meters enough to be of concern. "I know of no studies that have been done specifically to prove this point," says Dr. Bloom, "but I do know from experimenting with my own meter that the readings I obtain when I milk, even vigorously, are not meaningfully different." Remember that, even if you use perfect testing technique, a glucose meter will most likely not give you the same results twice in a row.
Wiping Blood Off After Lancing
Many diabetics do not wipe off the first drop of blood after lancing. Years ago the healthcare community recommended that the first drop of blood should be discarded because it was believed impurities or contamination from rubbing alcohol could affect the test. If your hands are clean, there is no reason to remove the first drop, and, if you use rubbing alcohol, there is still no good reason to remove the first drop of blood because the difference between sample results is insignificant. Many healthcare teams who deal with diabetes do not wipe off the first sample, but some do. As I said earlier, if you use alcohol, you must be sure the site is absolutely dry before lancing. Dr. Ronald James says, "I think, if your finger is clean, you don't need to wipe the first drop off." Note: people who find it difficult to get enough blood for the test will find it that much harder to get more if they wipe away the first drop.
Good finger-sticking technique is key to effective diabetes management. Testing for blood glucose should be made as simple as possible. People will be more inclined to test regularly and responsibly if this task is described and made as straightforward as possible.
by Thomas Rivera Ley
From the Editor: Tom Ley is a totally blind diabetic. You read about him and his family earlier in this volume. He was a frequent contributor to the Voice of the Diabetic. This useful step-by-step guide for nonvisual application of blood to the Prodigy Voice glucose meter test strip appeared in the Winter 2008 edition of the magazine. Since the Prodigy Voice is currently the primary accessible glucose meter available and since these tips can be applied to similar products, we include his brief tutorial here:
One of the questions diabetics losing vision ask most frequently is how to get a drop of blood onto the test strip accurately and consistently. The answer of course depends on which blood glucose meter you use. Blind people must figure out how to accomplish new tasks without vision all the time. Nearly all day-to-day tasks can be done without vision. The key is to approach the problem with the absolute belief that it can be done. Then just start trying. Be creative. Ask others for their thoughts, and don’t be afraid of trying something that doesn’t work. Be patient and persistent, and in the end you will almost always figure out a way. This, in short, is the philosophy of the National Federation of the Blind.
With the introduction of a new talking blood glucose meter, the Prodigy Voice, as well as its predecessor, the Prodigy AutoCode, blind diabetics will need to master the technique of getting the blood sample onto the Prodigy Voice or AutoCode test strips. The two meters are much smaller than previous talking meters, and the test strips have the testing area on the tip of the strip rather than on the side. These two generations of the Prodigy product are virtually identical physically, so any technique that works for one meter will work for the other. These tips may help:
Tip One–Smaller Has Advantages
These meters are small and light. Because they are so easy to move around, you can experiment with many different approaches to determine which works best for you. Get comfortable holding the meter in one hand while testing. The meter can be moved toward your finger just as easily as your finger can be moved to the test strip.
Tip Two–Shoot for the Top
The end of the test strip is about a third of an inch across, but the blood is applied to a small, narrow notch in the center of the end of the strip. The notch is cut out of the test strip on the top side, so the easiest way to make sure your blood gets on the strip correctly is to apply it on the top. Applying the blood from the bottom side of the strip is likely to prevent sufficient blood from entering. These meters are small, so they will often be used by holding the meter in one hand and moving it to a finger on the other. If you do this, be sure to angle the strip as it touches your finger so that the blood sample touches the notch on the top of the strip.
Tip Three–A Sideways Approach
When testing, it helps to set the meter on its side on a table or counter rather than face-down or face-up. In this position the test strip will be sticking out of one end, and the face of the meter with the buttons will be facing you. The idea is to get the blood sample to the strip in three steps. First, bring your finger to the meter so that it is touching the bottom corner of the strip. Next, maneuver the strip so the corner is at the sample site—that is, the corner of the strip is touching the blood drop. Finally, pick up the meter and rotate it so that your blood sample touches the notch in the end of the strip.
Here’s a step-by-step example:
This example was for a test on the left hand, but the same procedure works for a sample on the right hand by changing left to right and right to left in every instance above. Just make sure the meter is on its side with the buttons facing you and the strip pointing toward the test sample finger.
Tip Four–Practice, Practice, Practice
As with all new skills, practicing is the key to feeling comfortable and performing this new task with confidence and ease. I suggest using the control solution when practicing. Place a small sample on a fingertip as a test. Practice until with relative ease you can get a result that falls within the target range for the control solution for three tests in a row. It may take an entire vial of strips or more and more than a bottle of the control solution, but it is worth it. It can be helpful to have someone with sight watch you practicing to provide feedback or to answer your questions.
I hope with these tips you will find using the Prodigy Voice as easy as I have.
by Eileen Rivera Ley
From the Editor: Eileen Rivera Ley is a blind woman and an active member of the National Federation of the Blind and the Diabetes Action Network. You read about Eileen and her family earlier in this volume. This article focuses on diabetics new to blindness, but the concrete suggestions are certainly applicable to all blind people. She contributed the following information on nonvisual techniques for effectively managing medication in the Summer 2007 edition of Voice of the Diabetic:
If you are new to blindness, you may feel nervous about how you will manage your medicines on your own. Fear not. Methods exist to tell you which are which. You may be surprised to learn that many blind people identify pills by their shape, size, texture, smell, and even the rattle they make. Nevertheless, as more prescriptions are added and generics prescribed, distinguishing pills using these conventional nonvisual techniques may become more difficult. Thankfully, imagination and ingenuity are limitless, and blind people continue to find ways to manage their medications safely and independently through a variety of low-vision, no-vision, low-tech and high-tech options. The key is to develop your own system, then stick to it.
You Can Manage on Your Own—With a System
NFB Chapter President Peggy Cowgill, who has been blind all her life, is an independent living specialist for the Disability Resource Center in Alamogordo, New Mexico, and works with people to make sure they can manage medications, whether or not they can see them. Peggy suggests marking the lids of each prescription and over-the-counter medication and stresses the importance of creating symbols that can be read rightside-up or upside-down. She recommends using liquid tactile
Peggy uses the following system: For Tylenol (acetaminophen) she makes a big X on the cap (she stores aspirin in a different room to prevent mix-ups). She uses a single dot for medicines she takes once a day, a dot and line for medicines she takes both in the morning and at night, and a single line for nighttime-only medication. For easy scanning, Peggy recommends keeping medicine bottles in a flat-bottomed basket so that the marked caps are face-up at all times. Ziploc bags also work well, especially when traveling.
Creating Your System
When creating a system for marking the medicine, you should have symbols for the dose and time to be taken. For example you might use dots to indicate the dose and dashes to represent the time of day. More elaborate systems may indicate the name of the medicine and the name of the person taking it. Devise a system that works whether or not you are wearing your glasses or contacts and whether or not you are having a good eye day.
Many blind people use rubber bands to mark their medications. Use high-quality rubber bands or ponytail holders for this because a broken or accidentally moved band will cause system failure. Perhaps placing some clear packing tape over the rubber bands will add to the stability and protect the bands from breaking.
Be creative. Glue differently shaped buttons to the container or string beads on elastic and put them around the bottle neck. Buttons might indicate the number of pills, and rubber bands in different places on the bottle can identify when or how many times a day you should take it. For example, if you need to take the pill once in the morning and once at night, you can wrap two rubber bands around the bottle, one securely along the top of the bottle and the other near the base. If you need to take two pills each time, you can glue two buttons onto the cap of the bottle that has the rubber bands. Rubber bands also work well on insulin bottles. If you have two kinds of insulin, you can place a rubber band around one to distinguish it from the other.
Managing Meds for More Than One Person
In my home we have four people, and each takes a number of medicines. In addition to marking the medicines, I store them in different rooms as a secondary precaution. I also use different size bottles for each of the people in my family. If a refill comes in a different style bottle and threatens to disturb my system, I simply transfer the pills and discard the new bottle. I also mark the initials of the user on the label.
Sharpie brand markers are a great help if you have stable usable vision. Since I have some limited vision, I use these permanent, waterproof markers to mark the bottoms and tops of our white medication bottles with the first initial of the medicine. At first I marked only the cap but then discovered that some caps are interchangeable, even on different sized bottles. So as a back-up I began marking the bottom of the bottles as well. I then put the initials of the person taking the medicine in jumbo print on the label. I wrote the first initial of the medication on the bottom of the bottle. If the plastic was a dark color, I simply added a piece of duct tape and wrote over that. On the side of the label I used the marker to denote the dose (quantity over frequency) for example, #2/3x or #1/1x. You can use the tactile marker for the same system if you can’t see.
Whether you are busy or forgetful, you may need a way of making sure you take your medicines. Some people I know keep a log or mark the calendar. Others find the classic seven-day pill-sorter box keeps them on track. One person reports that she flips her bottles over after taking her morning medicines, then realigns them after taking her evening dose.
Braille readers use a sticky clear tape called Dymotape to create custom Braille labels. You need not be fluent in Braille to use these labels. In fact, marking your meds with a few Braille numbers and letters may be an ideal way to integrate it into your daily life. Just this year our mail-order pharmacy, MedcoByMail, began shipping our meds with Braille labels so that my husband could identify his countless post-transplant medicines on his own. Check with your pharmacy to see if they can do this for you.
Talking Rx Readers
Joyce Kane, a Federation member, was a beta tester for a talking prescription reader developed by a pharmacist in Connecticut. The Talking Prescription Readers, manufactured by the Millennium Compliance Corporation, cost $15 each and are available through the NFB Independence Market. These reusable readers attach to the bottom of most standard pill bottles. The device allows you or a pharmacist to record up to a minute of detailed instructions and precautions on its digital recording chip. Joyce has been happy with this method and told me, “Once I started using the readers, all of a sudden I had my independence back. I could manage my meds on my own.”
To Sort or Not to Sort
Many people, even those with perfect vision, use medication dispensers with daily compartments. Some pill boxes come divided for morning, noon, evening, and night. Pre-sorting medicines into these boxes can save time and can also help those with limited dexterity. If you take lots of medicines, the sorter will save you the time of opening and closing many bottles.
With a few adaptations you need not be at the mercy of sighted help to fill your pill sorters. You can fill them yourself. Some people use two different sorters, one for morning and one for evening. Find a creative way to distinguish one from the other. Enhance your flexibility by splurging for a few extra sorters and organize your entire month of medicines at once.
Keep Information Handy for Sighted Helpers
If your markings make reading the original labels difficult, keep notes or a chart of your medicines on a pad for doctor visits and emergencies. If you use a computer, create a spreadsheet with the pertinent data. Note cards work particularly well since they are easy to carry and update as needed.
Donna Goodman, a blind pharmacist, uses Ziploc plastic bags to separate her once-a-day and twice-a-day medicines. She urges fellow blind diabetics to be proactive about medicines because anyone can make a mistake. Errors can be dangerous. When the doctor writes you a new prescription, insist that he or she read it aloud and ask if special instructions are required for taking the medication. When you get your medicine from the pharmacy or mail-order company, have someone read you the labels to verify that you received the proper medicine in the proper dose. If upon inspection you notice that your pills look or feel a different shape or size, don’t be shy. Pick up the phone and ask. You may avert a medication error and even save your life.
by Thomas Rivera Ley
From the Editor: Tom Ley explores the convenience of the pen as an accessible alternative delivery mechanism for administering insulin. This article was originally printed in the Winter 2007 edition of Voice of the Diabetic. Here is what he says:
Insulin pens have been available for over a decade as an alternative to traditional insulin syringes and are an increasingly popular option for insulin delivery. Pens are more convenient than syringes and are quite accessible for blind diabetics.
What Is the Difference?
The basic insulin syringe comes unfilled and is intended for a single use although many diabetics reuse them. You must fill the syringe manually each time you require a dose. Unfortunately, if you are blind, you need a special device like the Count-A-Dose to fill the syringe independently and accurately.
Insulin pens are not disposable. Their base holds a 300-unit insulin cartridge that connects to a disposable screw-on needle. This cartridge stays attached until it is empty or until it has been out of refrigeration for over thirty days. The screw-on needles are intended for a single use. Many diabetics, however, choose to use the pen needle for a day or so.
Dosing Dilemma Solved
Dosing with an insulin pen is quick and simple. The base piece has a dial or knob on the end opposite the insulin cartridge and needle. The insulin dose is measured and administered from the pen using the dial. In all of the pens that we tested, turning the dial creates an audible and tactile click. Some pens measure by half units while others measure by whole units. For example, if your pen doses in whole units and you wish to measure seven units, you simply twist the dial seven clicks.
Because of innovative design, no air enters the cartridge, eliminating another concern for blind diabetics. After measuring the insulin, you simply insert the needle tip under the skin and push the dial until it clicks or stops.
To Prime or Not to Prime?
Some pen users think priming wastes insulin, but we recommend that you prime your pen before each use and after changing the needle. Priming simply means squirting a unit of insulin into the air (not into yourself) to ensure that the pen and needle are working properly. If you are blind, you can position the needle tip over your hand so that, when the priming dose squirts out, you can feel the insulin as it wets your skin. Those with diabetic neuropathy can touch the hand to the lips and sniff. The moisture on the lips coupled with the distinct smell of the insulin confirms that insulin is being delivered.
Replacing the Cartridge
Changing the insulin cartridges and screw-on needles is relatively easy to manage without vision. A blind person can also determine when the cartridge is nearly or completely empty. The pen will not prime or operate easily when the cartridge is nearly or completely empty. Estimating how many days a cartridge will last is best achieved by dividing 300 units by the average number of units you use each day.
Pricing the Pen
You may find that switching to a pen may increase your monthly diabetes expenses, depending on your insurance. Some diabetes educators report that insurance companies will not pay for a patient to use a pen (although insulin pump therapy is usually more costly). We have also heard, however, that healthcare professionals have successfully advocated for their blind patients who want to use the insulin pen, because it promotes independence and compliance.
Selecting Your Pen
Pens are now available for many types of insulin, including Lantos, NovoLog, and Humalog. This is not a complete list, so check with your doctor to see if the particular insulin you take is available in pen form. Although pen manufacturers have previously shied away from recommending their insulin pens to blind people, the successful experiences of blind diabetics tell the real story of insulin pen safety. If you are searching for an easier, more convenient way to carry and dose your insulin, you will definitely want to investigate using insulin pens.
by Thomas Rivera Ley
From the Editor: As of this writing, no fully accessible insulin pumps are available to blind people. Several companies say that they are investigating the development of accessible insulin pump technology. Nevertheless, some blind people--as is the case in virtually every arena of inaccessible products and appliances--have circumvented these challenges and have developed their own methods for coping with usable if not fully accessible devices.
Tom Ley, a competent and experienced blind diabetic, is a
strong advocate of blind people's ability to use the insulin pump. In
the following article, originally published in the Spring 2007 edition
of the Voice of the Diabetic, he makes the general case for
the convenience of the insulin pump, and he contends that he is able to
manage most of the day-to-day issues involving its use independently
and nonvisually. Tom devotes less space in this article to explaining
just how he accomplishes this task than he does to promoting the notion
that it is possible, so you will want to contact him for specific
advice. We include this article, though, to encourage blind diabetics to
consider the pump if the severity of their condition warrants it.
According to Tom, it can be handled with a moderate amount of support
from a sighted person. Here is what he says:
Have new designs made insulin pumps more accessible to those of us who cannot depend on our sight to read their small screens? The answer is a resounding no. Should blind diabetics avoid using pumps? Again, the answer is a resounding no.
The number of pump users has grown from around ten thousand in 1990 to an estimated quarter of a million users worldwide in 2006. Competition in this exploding market has been good for consumers, sparking advances in pump technology and ease of use. Some are even kid-friendly. Kid-friendly? you ask. Yes. Many school-age children with type 1 diabetes now use insulin pumps by themselves. In an effort to target this life-long market, manufacturers have focused on smaller size and new colors and patterns. Pediatric endocrinologists are now prescribing pumps for parents to use with their diabetic children as young as two years old.
New features include:
• Lots of stylish colors
• Smaller size
• Wizards to assist in calculating the mealtime bolus
• Wizards to assist in calculating a high blood sugar correction bolus
• Added safety features such as waterproofing
But Voice of the Diabetic readers may recall numerous articles over the past decade outlining the inaccessible features of these devices. Unfortunately, even with all of these useful or cosmetic advances, pump manufacturers continue to ignore our pleas for an accessible pump.
Almost all pumps on the market today offer a way to administer a mealtime or correction bolus accurately without seeing the pump screen, but this is no advancement from a decade ago, since insulin pumps in the 1990s also had this feature. What’s worse, nearly all of the new advances in convenience and safety, such as the bolus
I am greatly disappointed as each new insulin pump comes to market without addressing the accessibility issue. But the good news is that the new models are no less accessible than the old ones were. If you want to take advantage of the unique benefits of an insulin pump over a multiple daily injection regimen, you can do so with very little sighted help.
I am totally blind and have used an insulin pump successfully for nearly a decade. It offers greater control in preventing low blood sugar and added convenience when I’m on the go. Also the pump is the only way I can match my basal insulin delivery to the peaks and valleys caused by the Prednisone I take daily. I do need sighted assistance to set the time and date preferences and basal profiles. But once I have set those, I manage daily operation without assistance. This includes bolus administration, changing the batteries, and replacing insulin and infusion sets. I am happy with my pump and plan to continue using it. I must assure you, however, that, as soon as a manufacturer decides to make a truly accessible insulin pump, I will immediately change to that pump and will announce it boldly and loudly to all the diabetics I know.
I am confident that sooner or later a company will produce an accessible insulin pump. Developing this technology is the right thing to do, and this course of action is the smart business thing to do as well. The National Eye Institute says that 40 to 45 percent of diagnosed diabetics have some level of diabetic retinopathy. Furthermore, diabetics are living longer and healthier lives than ever. So, even if diabetic retinopathy were not an issue, glaucoma, cataracts, and age-related macular degeneration will be. And the fact is that nearly all pump users would benefit in some way from pumps that you don’t have to see to use. Turning on a light is not always convenient or desirable, and poor lighting abounds. Pulling out your pump is not always physically or socially appropriate. Many diabetics experience fluctuating vision--fine one day, relatively poor the next. Most pump users encounter one or more of these circumstances routinely, and all would benefit from an accessible pump.
So which company will finally listen to our voices and make the smart business decision? Who will create a fully accessible pump? Only time will tell, but the first producer stands to reap rich harvests of loyal new customers, good will, positive press, and competitive advantage. Until then I will make do with my semi-accessible model, which does allow for good self-management while I wait.
by Thomas Rivera Ley
From the Editor: In this article, originally published in the Fall 2008 edition of Voice of the Diabetic, Tom Ley reviews three Websites that blind diabetics with access technology can visit to gather valuable nutritional facts about their favorite foods. Since acquiring this information from packaging is difficult without vision, familiarity with these Websites will surely be of interest to many readers of this volume. Obviously the content on Websites changes from time to time, so you should visit several of these Internet resources to find the one that works best for you. Here's Tom's assessment of the current best alternatives:
Have you ever been forced to estimate how many grams of carbohydrate and fat were in your meal or snack because you could not read the label? If you are like me and frequently find yourself estimating carb and fat levels, then you know how easy it is to make a poor estimate and end up with an after-meal blood sugar that is either too high or too low. All diabetics must keep track of how much carbohydrate they eat at each meal or snack, and many of us must also keep track of how much fat, cholesterol, sodium, potassium, and other nutrients are in our food.
Fortunately, if you or someone you know has easy access to the Internet, several Websites provide free services to look up nutrition information on many thousands of foods. This article reviews the ease of use and accessibility of three major Websites. All three feature a free service to look up the nutrition information in almost any food you might eat. Each Website also offers a free recipe-finder service. All of these Websites offer a service (some free, some not) to help you keep track of how much carbohydrate, fat, and other nutrients you eat each day. This article will focus on the food look-up services. Here we go, starting with the hardest to use and finishing with the easiest.
1. American Diabetes Association My Food Advisor™ <www.diabetes.org/my-food-advisor.jsp>
Unfortunately, this brand new service flunks the test for accessibility. Although the opening page of this Website reads well using a screen reader such as Window-Eyes by GW Micro or JAWS by Freedom Scientific, the rest of the Website, particularly where you search for foods, is completely unusable. This is a real shame.
2. dLife.com Diabetic Recipe pages <www.dlife.com/nutrition>
The dLife.com Website is generally accessible, and that goes for the look-up food service as well. This is commendable. I found the Website rather cumbersome to use when looking up foods, and the look-up service itself lagged well behind CalorieKing.com for ease-of-use. As a blind person I could use this Website, but with better options available to me, I won’t be using it much. The Website offers options to view the text in a size as large as sixteen point; this is good, but for many low-vision diabetics, this is not large enough.
3. CalorieKing <www.CalorieKing.com>
CalorieKing is the king of food look-up services for accessibility and ease of use. Using a conventional screen reader, I was able to find the exact food I needed quickly. The Website makes it easy to adjust the nutrition information for the exact serving size you are eating. CalorieKing also contains a large nutrition database of
Further, CalorieKing provides the calorie density (CD) for each food. This measure tells you which foods will fill you up more without giving you lots of calories. If a food weighs a lot but does not contain many calories, it likely contains more water or fiber. Look for foods on CalorieKing with a lower CD level (more stars) if you are trying to lose weight as instructed by your doctor.
I encourage everyone to try out CalorieKing.com. It is easy to use, and you will certainly learn much about the foods you have been eating. When I was on dialysis, this Website was a real help because I had to restrict my sodium and potassium intake as well as my carbs.
by Thomas Rivera Ley
From the Editor: In the Spring 2008 edition of Voice of the Diabetic, Tom Ley examined an accessible and innovative Website that allows diabetics to chart their eating habits, sugar readings, and other miscellaneous details related to responsible healthcare management. Traditionally, much of this information has been maintained in hard-copy form, which occasionally poses challenges for blind diabetics. With a general increase in computer literacy and reliance, Tom presents another useful online resource for your consideration. Here is what he says:
It’s important to track your daily blood glucose, food, exercise, and medications. For many decades this meant using paper forms and then taking them to the doctor to review. Today you can use a variety of tools to keep track of these daily numbers. One of the most versatile and accessible of these is a Web logbook at <www.Dia-Log.com>. Websites allow you to enter daily readings online from any computer or portable device that can connect to the Internet, and this one is accessible if you are blind. I use it daily, and it is easy to use with a screen reader such as Window-Eyes or Jaws for Windows. And it’s free.
Dia-Log.com describes itself as “a FREE online diabetes logbook that helps diabetics track their lifestyle.” It offers:
• An online logbook to enter blood sugars, insulin, food, carbohydrates, events, and notes
• A logbook to track doctor visits, lab results, and medications
• Printable personal charts and graphs that can be shared with doctors and educators
• Custom features for insulin pump users including a basal logbook
• Complete confidentiality and security for personal medical information (Dia-Log.com uses standard, reliable security systems to keep information private. If you are comfortable making online purchases or banking online, you will find the security adequate.)
You create a user ID and password to begin. You will probably start with the most frequently used feature, the daily logbook. Once you are there, the current day and time will be entered by default. Type in your blood sugar reading and link it to a time or event such as before breakfast, after breakfast, low blood sugar, before exercise, random, before bed, etc.
Next, specify carbohydrate count and how much short- and long-acting insulin you used. The entry form provides two fields for selecting or typing in the food you have eaten. On a separate portion of the Website you can create a list of the foods and meals you most commonly eat, along with the carbohydrate value of each. Lists of common items show up here, so you can choose the foods and values. The advantage of these lists is that the carbohydrate value for each item automatically drops into the carbohydrate space. You can also track how various foods affected your post-meal blood sugar.
Finally, you can provide a comment for the entry. A great feature is that you can modify or delete an entry at any time. The Website is flexible. During a busy day you may not have time to enter information, but Dia-Log.com allows entries to be added for any day. I provide my Dia-Log.com user ID and password to my endocrinologist and nurse practitioner. When I need some advice, I just call or email them. They look up my readings online and can print reports. Then we plan our next steps together.
I recommend Dia-log.com. The accessibility is not perfect, but I find it easy enough to use with a little practice. My doctors like it too. If I have Internet access, I have Dia-Log access, and that’s a great advantage. It helps me maintain better control of my blood sugar, and that keeps me healthier.
by Eileen Rivera Ley
From the Editor: Eileen Rivera Ley offers a series of questions and answers that will prove instructive for diabetics who have low vision. Being familiar with low-vision techniques and resources is vital for members of this community since loss of vision is often a secondary complication of diabetes. This article was originally published in the Spring 2007 edition of Voice of the Diabetic. The article has been edited for this publication. Here it is:
Many diabetics experience some vision loss, and getting help can be confusing. For some the loss comes from retinopathy; for others the culprit may be macular degeneration or glaucoma. While causes and severity vary, the solution may be the same—low-vision services. Excellent resources abound for people who are neither fully blind nor fully sighted, and I hope the following will answer your questions about them.
Q: What exactly is low vision?
A: You have low vision if your best corrected visual acuity is 20/70 or less. You are not legally blind until visual acuity drops to 20/200 or less. But these numbers don’t tell the whole story. Visual-field loss and blind spots have profound effects on vision. For example, a blind spot obscuring your central field can make reading regular print nearly impossible, even if your visual acuity is 20/20. Specially trained low-vision optometrists will evaluate functional vision beyond visual acuity.
Q: Who uses low-vision services?
A: Anyone with deteriorating or permanently damaged vision. The typical patient is a senior with macular degeneration—the main cause of blindness. Since diabetes is the second-leading cause of blindness, however, low-vision practitioners see many people with diabetes. They therefore know that diabetes self-management goals like measuring insulin and reading your meter are as important as reading your bills, price tags, or computer.
Q: Who provides low-vision services?
A: Optometrists do. They spend four years learning about the eye, lenses, and visual function, and some get extra training in low-vision services; they will know the most about prescribing specialized low-vision lenses and devices. Ophthalmologists are medical doctors who specialize in the health of the eye; they examine all parts of your eyes, prescribe medications, and do surgery. Many can test you for lenses and give you a prescription for glasses, but optometrists are the optical experts. You need to see both specialists: your optometrist to help you cope with your low vision and your ophthalmologist for your eye disease.
Q: What are the goals of low-vision services?
A: You and your practitioner will determine these together. What is most important to you? Checking a price tag in the store, studying a road map, reading the nutrition label, sorting mail, looking up a phone number, and viewing a theatrical performance are the types of things you might ask about. Finding the right low-vision tools will take time. Usually the specialist will explore the optical alternatives first by assessing reading, writing, distance viewing, mobility, and lighting options.
Q: What is the best way to work with my low-vision specialist?
A: Ask questions and make sure your specialist knows you want to hear all the options. Sometimes low-vision specialists feel pressured to recommend only visual solutions because they know how much you want to see. Ask them to recommend anything they think will help you function best, whether their recommendation makes use of your eyes, your ears, or your sense of touch.
A: You may need a variety of magnification devices to accomplish your goals, since they tend to be task-specific. In prescribing a reading device, the practitioner must balance the tradeoffs among magnification levels, fields-of-view, and working distance. The stronger magnifiers require you to be one inch from the lens, a less-than-comfortable position for sustained reading. Powerful magnifiers also tend to have a small field-of-view and can enlarge only a few characters at a time. These constraints may reduce reading speed.
A trained low-vision specialist will systematically evaluate your reading by measuring speed and accuracy at different print sizes and by documenting the print size of the last good reading. Then the specialist will select a magnification system that converts actual print size to the size you can see most clearly.
Endurance is perhaps the most important factor in determining an optimal reading system. Rarely will a low-vision device enable you to curl up comfortably with a book and read for hours. If the only way you can read unaided is by holding a book up to your nose, chances are that the reading system will become more cumbersome and inadequate as time progresses. This is true even when your visual condition is reported as stable.
Q: What are low-vision recommendations?
A: Low-vision optometrists will provide you with a shopping list of choices, usually ranging in price and effectiveness, that they think will help you the most with your pre-determined goals. They should explain the pros and cons of specific systems and introduce nonvisual options as needed. If you don’t understand, ask questions. If information is missing, ask questions. For example, you may be offered lighting advice for your home, but you will need to ask about a plan for times when lighting is not under your control. The low-vision optometrist should be realistic about the ease-of-use, practicality, and comfort level of a prescribed device.
If you have progressive retinopathy, you may find low-vision services frustrating, because prescribed devices may quickly become ineffective as your condition gets worse. In such cases you should evaluate whether your time and resources might be better spent in refining nonvisual skills such as typing, Braille, and cane travel.
Q: How can I be a wise consumer of low-vision services?
A: Think about your needs and insist on getting help. The fact that vision enhancement is technically feasible doesn’t automatically make it a good idea. Ask yourself if a low-vision optical system will meet your needs at home and at work. Consider the ergonomics (working conditions) of a device. Will using the device give you a headache, back pain, or eye strain? Understand the field-of-view limitations and necessary lighting conditions. Consider portability. Will you need training to use the device? Ask about the usefulness of the device as vision fluctuates, a common complaint of people with diabetes. Selecting low-vision devices is highly individual. During your comprehensive low-vision evaluation, ask your provider to lend you a device to test at home (this may not always be feasible).
Also consider economics. For example, telescopic lenses are a big-ticket, low-vision device, and they definitely work. Many people with low vision keep a telescope handy for occasional spotting tasks, but they are expensive. Is the investment warranted? How much benefit will you gain from the device compared to the cost? What community resources might assist with the cost? Sometimes state vocational rehabilitation services and groups like the Lions Clubs can help.
Keep in mind that visual goals change as technology changes, so plan to return to the low-vision center every few years to see what’s new. You may be pleasantly surprised, as I was when I first saw the hand-held CCTV (electronic magnification) products.
Part of being a satisfied consumer is to understand your own needs and limitations, as well as the available options. Keep traditional low-vision solutions in perspective; many low-vision people never learn to make the most of their other senses, so they cling to their visual solutions, reducing their overall efficiency. If you are significantly visually impaired or are legally blind, seriously consider nonvisual techniques for reading, such as audio books. Even if nonvisual strategies are your second choice today, familiarity with them will serve as an excellent resource in later years. Having a full range of alternative techniques is always your best bet. Contact the NFB's Independence Market for a product and literature catalogue that contains a wide variety of aids and appliances that may be helpful to people with low vision; (410) 659-9314, Ext 2216 or <http://www.nfb.org>.
by Dr. James T. Handa
From the Editor: Dr. James Handa is a professor in the Retina Division of the Wilmer Eye Institute of the Johns Hopkins University, School of Medicine, in Baltimore, Maryland. He specializes in medical and surgical management of vitreoretinal diseases such as age-related macular degeneration, diabetic retinopathy, retinal detachment, retinopathy of prematurity, and other pediatric retinal diseases. He also sees ocular oncology patients.
In this section of Bridging the Gap: Living with Blindness and Diabetes,
we cover a variety of diabetes-related complications. Dr. Handa's
brief explanation of diabetic retinopathy, the primary cause of
blindness for diabetics, was published in the Fall 2008 edition of Voice of the Diabetic. Here is what he says:
Diabetic retinopathy is a progressive and potentially blinding disease that results from damage to the small blood vessels that nourish your retina, the part of your eye that captures light and sends it to your brain to be turned into pictures. In the early stages the eye’s blood vessels break and leak fluid and blood into the retina which causes swelling, also known as edema. Later, damage blocks blood flow to the retina and, because blood vessels carry oxygen to the eye, your retinal function and vision get worse. Eventually new but weak blood vessels grow and rupture, causing more damage in a phase called proliferative diabetic retinopathy. The new blood vessels can also bleed easily into the vitreous (gel-filled) cavity of your eye. Furthermore, scar tissue tends to form along with the new blood vessels, which can pull on and detach the retina.
Why Am I at Risk of Retinopathy Just Because of My Diabetes?
High glucose levels caused by diabetes weaken blood vessels throughout your body, including in your eyes.
Is There Anything I Can Do to Prevent Getting This Condition?
The best way to minimize diabetic retinopathy damage is to maintain good glucose control, normal blood pressure, and average lipid levels.
What Are the Symptoms of Diabetic Retinopathy?
Early on there may be none. Over time moderate damage to the retina can cause several types of vision loss. The central spot in the retina, called the macula, is designed for accurate and detailed vision such as reading. It is very small—the diameter of the inside of a Cheerio cereal hole. Leaking blood vessels lead to swelling, called macular edema, which can cause blurred vision or small blind spots. Because gravity affects the swelling, you may notice these symptoms more in the morning, after lying down all night. They may diminish when you have been up and around for a while. If the disease progresses to a stage called proliferative diabetic retinopathy and your eye hemorrhages, you may experience floaters, sheets, or veils that interrupt your vision.
How Will I Know I Have It?
In the early stages you may not be aware since there are no symptoms. All diabetics, therefore, should see an ophthalmologist regularly. If you experience blurred vision or blind spots, see a doctor as soon as possible.
What Are the Best Ways to Manage Diabetic Retinopathy If I Get It?
You must strive to control your glucose, lipid, and blood pressure numbers. This may slow the onset or progression of diabetic retinopathy. Effective, proven treatments exist, especially in the early stages. Laser photocoagulation can reduce swelling of your macula. Newer treatments also include injections of corticosteroids or anti-vascular endothelial growth factor (anti-VEGF) therapy. To reduce swelling, this drug neutralizes a retinal molecule that causes both blood vessel leakage and the formation of weak new vessels. Proliferative diabetic retinopathy, when severe, requires extensive laser treatment known as pan retinal laser photocoagulation. To control formation of these new but weak blood vessels, the doctor targets the peripheral regions of the retina with a laser. If the retina detaches from the back of your eye or blood clouds the vitreous, you may need a vitrectomy to clear the eye or repair scar tissue.
What Else Should I Know About Diabetes and My Eyes?
The best way to prevent vision loss is to control your blood glucose, blood pressure, and cholesterol and to have regular eye exams by an ophthalmologist.
by Ann S. Williams
From the Editor: Ann Williams discussed sleep apnea and its potential influence on diabetes in the Spring 2008 edition of Voice of the Diabetic. Here are her observations about this important condition:
Jean, a person with well-controlled type 2 diabetes, worked long days for a small business that sold appliances. She was often on her feet for hours and did a little of everything—filling orders, inventory control, keeping the books, and taking phone calls. She enjoyed her job and her good relationships with the owner of the business and his family.ut for the last few years Jean had become increasingly fatigued. She found herself dragging through the afternoons, often falling asleep as soon as she got home. Worse, she was sometimes so tired during the day that she began making mistakes in her work. Finally her boss told her he had noticed that she had changed, and he urged her to see her doctor.
To Jean’s surprise, her doctor asked whether she snored. In fact Jean’s loud snoring was something of a joke to her husband and two teenaged sons. Jean’s doctor told her that snoring can indicate a serious condition, and he arranged for her to spend the night in a sleep study center at a nearby hospital. When Jean arrived at the center to spend the night, a technician attached many wires to her head and body and explained that these would monitor her heart, brain, breathing, and movements while she slept. Although at first Jean thought she would never be able to sleep with all these wires on, she was so tired that she fell asleep quickly.
She learned from her doctor that the results indicated she had sleep apnea, which means that, as she snored, she stopped breathing about forty times every hour. When she stopped breathing, her body roused itself from deeper levels of sleep. So, even though she slept for many hours, it was not restful sleep, and she was tired all the time.
Stories like Jean’s are increasingly common in the U.S., and sleep apnea—temporary interruptions of breathing while a person is asleep—is closely related to type 2 diabetes. At least three major reasons account for this connection.
The first is that sleep apnea and type 2 diabetes are both more common in overweight people. Most sleep apnea occurs when muscles of the airway at the back of the throat relax during sleep, and overweight people often have extra flabby or fatty tissue in the throat and neck. This leaves a narrower airway, which is easily blocked when it’s not actively held open.
The next reason is that sleep apnea actually seems to change a person’s metabolism, causing weight gain. Researchers speculate that chronic sleep deprivation may affect levels of the hormones in the body that stimulate either the appetite or the feeling of fullness. So, even right after eating, a sleep-deprived person still feels hungry. Furthermore, fatigue makes it very hard to exercise. More weight gain follows, making the sleep apnea and deprivation even worse. This leads to more weight gain. It becomes a negative cycle.
The third reason for the connection between sleep apnea and type 2 diabetes is that sleep apnea causes insulin resistance—an inability to use insulin effectively. This means that sleep apnea actually makes diabetes harder to control. The opposite is also true; when sleep apnea gets treated, diabetes often becomes easier to control because the insulin resistance is decreased by deep, restorative sleep.
Besides the links to type 2 diabetes, sleep apnea has other dangers. The stress of interrupted breathing raises blood pressure and is very hard on the heart and blood vessels. Untreated sleep apnea is a strong risk factor for heart attack and stroke, so it’s not only an inconvenience, it can be life-threatening. It’s important to have sleep issues diagnosed and treated.
Some ways of treating sleep apnea are more effective than others. Although the first piece of advice many people get is "Try to lose weight,” most people who have sleep apnea find this advice difficult to follow. So, while weight loss should remain an important goal, other treatments can restore restful sleep and the energy to lose weight.
For mild sleep apnea some people find that a simple change of position can help avoid the closing of the throat that causes it. Sleeping on a side or stomach may allow the airways to remain open when the muscles relax. This is easier said than done since many people naturally roll to their backs during sleep. Some are able to prop themselves on their sides using pillows, and some have reported success by sewing a tennis ball to the back of their pajamas so that lying on the back is uncomfortable. For moderate to severe sleep apnea, however, other treatments are available.
Sleep apnea can most commonly be controlled using a continuous positive airway pressure (CPAP) machine. It’s small, about the size of a toaster, and it has a tube to carry air to a mask that fits over the nose or nose and mouth. Masks come in a variety of designs, and because a good fit is important, a respiratory therapist will usually fit the CPAP to make sure it is snug and comfortable.
A CPAP is worn during sleep and constantly blows air that provides pressure to keep the airways open, even when the muscles of the throat are relaxed. Although the CPAP mask often feels awkward at first, most people get used to it. In fact they often find that they feel so much better after getting good sleep that they cannot imagine sleeping without the CPAP.
Other options for treating sleep apnea include oral appliances (to position the jaw so the airways remain open) and surgery. Using a CPAP has a much stronger record of effectiveness, though, so these other options are seldom used.
Although sleep apnea is the most common sleep disorder, other types dot the dreaming landscape. Some of the most common are restless legs syndrome (periodic limb movements) and insomnia associated with anxiety, depression, caffeine, or certain medications. People who are tired all the time, regardless of whether they snore, should get a sleep evaluation. Most sleep disorders can be treated easily.
Fortunately, when sleep apnea or other sleep disorders are treated, life often improves dramatically. Blood sugar levels can improve almost immediately with restorative sleep. The appetite becomes more normally regulated, and the person can feel satisfied with less food. With more energy comes the stamina to exercise more. All of this can lead to weight loss, which improves diabetes control and sleep apnea. Now the spiral can lead upward. If you never really feel rested and especially if you know you snore, ask your doctor how you can get a sleep evaluation. If you do have sleep apnea, you may be surprised at how much better you feel once it is treated.
For more information, see:
• American Sleep Apnea Association. Website: <www.sleepapnea.org>; Phone: (202) 293-3605
• National Sleep Foundation Website: <www.sleepfoundation.org> Phone: (202) 347-3471
by Bonnie Williams
From the Editor: In the Winter 2009 edition of Voice of the Diabetic, Bonnie Williams, a certified diabetes educator and wound specialist, offered valuable information on maintaining healthy skin and recognizing and treating wounds. As readers of this volume have learned, effective skin care is particularly critical for diabetics because healing is often complicated for people with this disease.
Ms. Williams is a member of the American Association of
Diabetes Educators (AADE) and the Foot Care Specialty Practice Group
and is a past-president and current board member of the AADE Northeast
Ohio Chapter. She has been a member of the education committees of the
American Diabetes Association, Northeast Ohio Chapter, and the Diabetes
Association of Greater Cleveland. Here is what she has to say about
Any damage to the skin is a wound—whether caused by traumatic injury, exposure to harmful substances, or even surgery. Management of wound healing has become a medical specialty, and over six thousand products on the market are devoted to wound healing, including advanced dressings, devices, and therapeutic modalities. The skin is the largest organ in our bodies, and it weighs on average about six to eight pounds. Skin shields against bacteria or injury, and it helps prevent the loss of water, electrolytes (minerals), proteins, and other vital substances. Your skin also controls temperature and helps you sense heat, cold, pressure, and pain.
As already mentioned, any break in your skin constitutes a wound. If your diabetes is under control, you can have near normal wound healing. Elevated blood glucose levels, however, can cause healing complications and infection. There are different types of wounds, and some are more common for people with diabetes.
Wounds are classified in several ways:
• Acute versus chronic. An acute wound heals in a predictable and timely manner, while a chronic wound has delayed or complicated healing.
• Depth. In partial thickness, tissue damage extends through the top layer of skin and into, but not through, the deeper layer. Blisters and scrapes are partial-thickness wounds. Full-thickness wounds invade the deepest layer of skin and may involve the subcutaneous tissue, tendon, muscle, and bone.
• Cause or origin. Wounds are divided into pressure ulcers (previously known as bed sores); arterial, venous, and diabetic (neuropathic) ulcers; and surgical and traumatic wounds.
Certain wounds are more common in people with diabetes. First, diabetic or neuropathic ulcers are usually found in the feet or lower extremities, and they arise from a lack of protective sensation. They are linked with calluses, foot and toe deformities, and repetitive stress. If you have numbness of the nerves in the feet, you are less aware of tissue damage. Keeping blood glucose levels as close to normal as possible can minimize the chances that you will get this type of ulcer. If you have hammertoe or foot deformities that are causing calluses and corns, a foot specialist can remove them and prescribe orthotic inserts or special shoes to help take the pressure off the bony areas of the foot.
Another type of wound common to diabetics is the arterial ulcer. These are caused by poor circulation to the tissues through diseased arteries (much like what occurs in the heart or with high blood pressure). These wounds are usually in the lower extremities, are generally round (have a punched out appearance), have little or no drainage, and are difficult to heal. If you have shiny, flushed, pale, and hairless skin, you may be prone to these wounds. They are often treated with a combination of medications to increase circulation; advanced wound dressings that promote healing; and sometimes a hyperbaric chamber, a specialized therapy that delivers oxygen under pressure to the oxygen-starved tissues. If you do not treat such a wound or if it does not respond to treatment, it may progress to gangrene and become black and leathery. This is a serious and possibly life-threatening condition. You may have a blocked artery, and you may be able to have surgery to improve circulation, but this is not always an option.
Diabetics are also prone to disease of the veins as well as the arteries, and therefore are prone to venous ulcers. These usually appear on the inner leg, above the ankle bone. They tend to be irregular in shape, and they may have a large amount of drainage. You may have swelling of the legs and ankles, and over time the lower leg may become very thick at the calf and much thinner at the ankle. You may also notice gray discoloration, called hemosiderin staining, or develop a thick, leathery, orange-peel-like texture to your skin. These wounds are sometimes treated with special dressings and compression to decrease the swelling, which allow healing oxygen and nutrients to get to the wound. Compression may be done by a number of methods, including special stockings, ACE-type wraps, or even a machine that intermittently compresses the leg with air pumps.
Pressure ulcers are a risk to anyone who may have impaired mobility, so, if you have trouble getting around, keep this risk in mind. If you sit for long periods of time, wear tight or ill-fitting shoes, or are in any situation which puts pressure over a bony prominence steadily and over time (even a matter of minutes), this could cut or damage tissues. Pressure is also the enemy of healing because it prevents necessary oxygen and nutrients from getting to the wound site. These ulcers are often treated with a variety of dressings and therapies, but the most important treatment is to relieve pressure in the area.
Neuropathy (diabetic nerve disease) is the leading cause of lower-extremity wounds and amputations. The American Diabetes Association recommends some steps that will help you prevent this complication. First, perform a daily foot inspection. Check all over the feet, including in between toes, for dry or rough areas, cracks, calluses, hot spots, or anything abnormal. If you find something, notify your healthcare professional. Wash your feet daily with gentle soap and warm (but not hot) water. Dry carefully, especially between the toes. Do not soak your feet because that can dry out the skin and increase risk for infection through cracks. Apply a gentle, non-perfumed lotion to the feet, but not between the toes—moisture there may lead to athlete’s foot or other fungus. Wear protective and well-fitting footwear to prevent injury, and change shoes at least twice a day to avoid pressure areas. Cut or file your nails straight across, or along the contour of the toe, leaving a thin white edge. Never cut nails to the quick, and never cut into the corners of the nail. In-grown toenails and thickened nails should be treated by a professional only. Do not attempt to perform nail surgery on your own.
With the looming threat of new strains of resistant bacteria such as MRSA and VRE, it’s important to focus on preventing wounds, infections, and other complications caused by high blood sugar. You should also know what to do when something happens. If you happen to receive a minor injury such as a paper cut, hangnail, or small puncture on your upper body, do not underestimate your risk. Bacteria can enter through even the smallest wound, and, if blood glucose levels are elevated, the bacteria will feast on that and grow. So be sure to cleanse the wound with cool running water and protect it from further injury. Dab a little antiseptic on the area, cover it with a bandage, and keep it away from contamination and dirt. Check it daily to be sure it is not getting infected. If you see redness, swelling, or leaking, contact your healthcare professional as soon as possible for further evaluation. If the wound is on your feet or legs, have it evaluated by a professional to identify the possibility of diabetic nerve disease. Remember, high blood glucose feeds infection, and infection makes glucose levels even higher. It can become a vicious cycle if you don’t have it treated properly.
If you get a blister, see whether it is filled with clear fluid or blood. If it is fluid-filled, it is considered superficial; if it is blood-filled, then it is deeper. Never remove the roof of a blister. The fluid inside contains many essential substances, such as growth factors, to speed the healing process. It also serves to pad and protect the injured tissues below as well as maintaining a closed skin surface to shield against bacteria. It will absorb on its own when the time is right. As in treating other wounds, protect from further injury. You may also want to replace tight-fitting shoes, if the blister was caused by them.
You can minimize your risk of wounds and infection by keeping blood glucose levels as close to normal as possible. Test often and take steps to keep your blood sugar in control. Wounds stop healing when blood glucose levels reach 200 mg/dl and above; healing is improved if the level is under 180mg/dl. Check glucose levels frequently, and notify your healthcare professional if you sustain an injury. You cannot avoid all wounds, but, if you are careful and seek treatment when necessary, they will probably heal.
Beauty is only skin deep, but learn to love the skin you’re in. Take care of your wounds.
From the Editor: This article first appeared in the Voice of the Diabetic,
Volume 18, Number 4, Fall 2003. It has been updated to reflect
developments in treatment of diabetic neuropathy and changed Website
links. Diabetic neuropathy is or should be of significant interest to
all diabetics. Aside from causing pain and often being a major
contributor to amputation, it prevents some diabetics from learning or
reading Braille. Understanding this complication should motivate many
diabetics to work just that much harder to keep their disease under
good control. Here is some useful information:
What is Neuropathy?
Neuropathy is a general term for physical damage to or impairment of the human nervous system. It has many causes and many symptoms. Because a long period with elevated blood glucose can damage nerve fibers, diabetes is one of several major causes of neuropathy (others being AIDS and multiple sclerosis.) The Centers for Disease Control suggests up to 70 percent of diabetics may have measurable neuropathy, though a number of other diseases (and some medications) can also cause this condition. The presence of unexplained neuropathy is a warning flag that you need to find out where these symptoms are coming from.
"Diabetic neuropathy occurs in both type 1 and type 2 diabetes," says Intelihealth, an Internet magazine now affiliated with Harvard Medical School, "and it is most common in those whose blood glucose levels have been poorly controlled. Although diabetic neuropathy can occur in patients who have had diabetes for a short time, it is most likely to affect those who have been diabetic for more than a decade, especially those over age forty. Diabetics who smoke are especially at risk."
The human nervous system is enormously complex. The peripheral nerves carry information to and from the brain, connecting it with the rest of the body. These nerves can be motor, sensory, or autonomic. Motor nerves carry messages from the brain for the contraction of various muscles. Sensory nerves relay sensations of touch, temperature, position, and pain from the body's periphery to the brain. Autonomic nerves carry the brain's commands to organs such as the heart, stomach, lungs, and liver; autonomic neuropathy, a potentially severe condition, though thankfully rare, will receive its own separate coverage later.
The longer the nerve fibers, the more likely they are to show damage from long-term high blood glucose. Such damage generally manifests at the nerve terminus, at the end furthest away from the central nervous system (brain and spine). For peripheral neuropathy, symptoms commonly appear at the nerve terminals of feet, lower legs, and hands. Doctors call this common form distal sensory polyneuropathy.
Symptoms of early neuropathy can include diminished tactile sensation, numbness, loss of reflex reaction, and various types and degrees of pain, from pins and needles to extreme burning sensations. As neuropathy progresses, the symptoms frequently change. Diabetics experiencing neuropathy sometimes have other ramifications as well, and these have their own symptoms. Sometimes symptoms overlap, and diagnosis can be confusing. Diabetic nephropathy--kidney failure--can exacerbate neuropathy, due to the uremic toxicity of the condition. Other pain can be a symptom of undiagnosed orthopedic problems, unrelated medical conditions, drugs and medications, or exposure to toxic chemicals. If you are experiencing pain or abnormal sensations in hands, feet, or legs, or experiencing unusual difficulties with bodily processes, check with your doctor.
The simplest way for your doctor to check for the diminished sensation that can be an early sign of neuropathy in your feet is with a monofilament, a thin, flexible filament of nylon or broomcorn. The doctor will press it gently against areas of your foot and lower leg and ask you if you can feel the touch. Where you cannot, early neuropathy may be present. The monofilament, the only tool this test requires, is extremely inexpensive, and the test is highly advisable.
More sophisticated tests can be carried out with a tuning fork or,
where the doctor needs to inspect a nerve path more closely, by a test
called an electromyelogram (EMG). The EMG, which tracks the movement of
electrical impulses along the nerve path, can reveal whether
impairment is due to diabetes, a compression injury such as back
problems or carpal tunnel syndrome, or some other cause. As neuropathy
progresses, sensory nerves frequently stop working, and numbness
becomes the most frequent symptom, bringing with it the end of pain,
but a whole new set of problems.
Prevention and Treatment
Since diabetic neuropathy follows extended periods of hyperglycemia, its best prevention is good blood glucose management, tight control, with test results, blood glucose numbers in the normal range. A healthy lifestyle, with plenty of exercise and careful attention to diet, helps too. Incidentally, the same tight-control regime can help those with already established neuropathy. Although it is not clear exactly how it happens (there are several theories), experience shows that getting your diabetes under control and keeping it there can, over a several-month period, alleviate at least some of neuropathy's symptoms. Doctors argue whether neuropathy damage is reversible--but it may be, and you owe it to yourself to try.
Individual symptoms are as varied as individuals, but the most common complaint in the early stages is pain, and pain control becomes the single biggest challenge in dealing with established neuropathy. Doctors have prescribed aspirin, acetaminophen, and various other nonsteroidal anti-inflammatory drugs; the anticonvulsants Dilantin and carbamazepine (Tegretol); and tricyclic antidepressants such as paroxetine (Paxil) and amytriptaline (Elavil); or a combination of vitamins B1, B6, and Glutamine, with varying results. The U.S. Food and Drug Administration (FDA) has approved Pfizer’s antiseizure medication pregabalin (brand name Lyrica) and Eli Lilly’s antidepressant duloxetine (brand name Cymbalta) for the treatment of diabetic peripheral neuropathic pain. Along with the drugs some physicians are prescribing capsaicin cream (Zostrix and its equivalents), a topical ointment originally formulated for arthritis pain. Some use the epilepsy drug gabapentin (Neurontin, a predecessor to pregabalin that now has a generic equivalent), while others relieve symptoms with local anesthetics or muscle relaxants. Still others are investigating acupuncture, although not enough is known about it to say for certain how it works in such cases.
New research using lidocaine (a topical analgesic sold in creams, such as Lanacane, for treatment of itching and skin pain) shows promise. A team from Rochester School of Medicine used transdermal patches containing lidocaine 5 percent, applied topically to areas of maximum neuropathy pain. In a three-week, open-label test, patients reported a mean 63.1 percent improvement in pain symptoms--and this without anesthetics or recourse to powerful systemic drugs that could interact with other patient medications. Further study is underway.
Another option is mechanical, using radiant energy. Anodyne Therapy LLC, from Tampa, Florida, offers anodyne neuropathy care. Their non-invasive, FDA-cleared device uses near-infrared light emitted directly into the affected area. The light penetrates deeply and causes capillary vasodilation, in much the same way topically applied nitroglycerine cream would--but with less risk. Company data suggest the treatment is not just effective against neuropathy pain, but that it also restores lost sensation as measured by monofilament test and by patient interview. Anodyne postulates that its product stimulates release of endogenous nitric oxide in much the same manner as do morphine and oxycontin but without the risks of these drugs. Their data suggest a combination of tight glycemic control (ending further hyperglycemic attacks to tissues and nerves) and effective vasodilator treatment (as with their product) can produce an observable reversal of loss of sensitivity. The device appears to treat both neuropathy pain and numbness and has clear benefits toward healing the stubborn ulcerated wounds that often follow neuropathy of the feet. A cursory look at the science behind the assertions suggests it is solid and that this device is free from the cant, touchy-feely, and carny-barker hucksterism that have plagued this field. Time will tell; keep your fingers crossed. And note, neither the Anodyne nor any of the others cure neuropathy. They treat symptoms. You have
Anodyne therapy is available at a number of clinics across the country. To find the nearest, telephone them at (800) 521-6664, or visit their Website, listed below. Anodyne markets their apparatus, both to health professionals and to consumers. Their professional system is priced at $4,895, and their consumer system retails for $2,495. Medicare already accepts charges for in-clinic treatments, and full Part B coverage for purchase of the Anodyne Home System was pending as of 2004--the company states they have appealed many Medicare refusals and won every one of them. For more details contact Anodyne Therapy LLC, 13570 Wright Circle, Tampa, Florida 33626; (800) 521-6664; Website <www.anodynetherapy.com>.
T.E.N.S., transcutaneous electrical stimulation (of the affected nerves) with a short jolt of electricity, appears to interrupt the transmission of pain signals and works for some people. Japanese researchers working for Nikken have used oscillating magnets with some success. Such oscillation manufactures electricity--a different approach to the same problem. The scientific basis for electrical/electromagnetic stimulation is unclear, but until neuropathy itself is better understood, "use what works for you" has to be the rule--there is no one correct symptom-relieving treatment for diabetic neuropathy.
Researchers were recently experimenting with aldose reductase inhibitors such as Sorbinil and Zenerstat, but these did not prove efficacious for neuropathy pain. And of course the search for new treatments goes on, with tests of antioxidants, nerve growth factors (rhNGF), blood vessel expanders, and various herbal/naturopathic substances. Most will fail, once serious clinicals are conducted.
Ever since Mesmer, the inventor of hypnotism, people have made various claims for the medical efficacy of magnets to treat various conditions. No scientific principle or beneficial effect from static magnetic fields has ever been discovered. Foot magnets to treat neuropathy and other conditions are advertised on the Internet and in consumer magazines. There is some statistical evidence for pain reduction (though, in data cited by the manufacturer, placebo users also showed unusually high improvement, so one wonders). We don't understand why magnets might work in some cases of neuropathy--but we don't understand the scientific basis of neuropathy pain either. The most experienced manufacturer of foot magnets is the Japanese firm, Nikken, whose U.S. offices are in Irvine, California; telephone: (949) 789-2000.
Again there is a lot of disagreement over effective treatments for neuropathy pain. Folks swear by their particular remedy. You need to find and use what works for you. Beware of extravagant claims for pill, technique, or machine; there are no miracle cures--though there are plenty of people ready to sell you one. Caution, caution, caution.
None of the pills and creams is as effective in bringing relief as
is getting your blood sugars into good control and keeping them there.
There is no cure without the achievement of good control, for without
euglycemia you are pumping out the boat without patching the hole in
its bottom. The International Diabetes Center's Website advises: "The
best way to treat or prevent neuropathy in any area of the body is to
control your blood glucose levels. Good glucose control may not reverse
numbness or tingling, but it can slow or stop additional nerve damage.
Good control also can bring on dramatic pain relief. Medications can be
used to control the symptoms of painful neuropathy and gastroparesis
(autonomic neuropathy of the digestive system) as well."
Consequences of Neuropathy
The main reason human beings have a pain reflex is that pain lets us know something is wrong in the affected area. If it hurts, we do something about it. With its biggest symptom being pain (when nothing is there) and diminished sensation/numbness (when something is present), neuropathy can seriously interfere with a diabetic's self-care, especially care of the feet. Circulatory problems from diabetes can lead to dry skin on the feet with the risk of ulcers and lesions. Lacking normal pain reflexes, the diabetic with neuropathy may not be aware his or her feet are in trouble. Even stepping on a tack may be pain free. This means otherwise treatable lesions go unnoticed and allowed to progress into severe infection, sometimes into gangrene itself. Amputation is a common result, and complications of diabetes account for the majority of nontraumatic amputations in the U.S. today. All diabetics need to inspect their feet frequently, but individuals with neuropathy need to be especially thorough because early detection of foot problems can be critical to saving the infected foot.
The linkage between dry feet and neuropathy is close. They frequently occur together; both are common symptoms of diabetes. To deal with the dryness, you may need a good diabetic foot cream--and note that these are thicker than conventional hand creams. Talk to your doctor or your podiatrist.
Other Coping Strategies
Although there are lots of variations, with the rule being "do what works for you," folks cope with neuropathy pain in a number of non-medicinal ways. One individual, who reported burning feet at night, slept with her feet uncovered and a fan blowing cool air on them. Many others cushion aching feet with thick, seamless hikers' socks, especially those made of cotton or of man-made materials such as Thorlo.
Some folks report that exercise brings relief, however temporary. Others use meditation-based relaxation techniques to help them manage. Another approach followed by many is to wear high-quality, properly fitting athletic (walking) shoes with good support or support sandals such as Birkenstocks, along with the socks mentioned above. Your podiatrist can help you choose an appropriate brand and style--and appropriate footgear is a good idea for everyone with diabetes, whether you have neuropathy or not--listen to your podiatrist, not the salesman at the neighborhood discount shoe store.
Many people whose feet are affected by diabetic neuropathy are also
dealing with circulatory/microvascular problems. Their ability to heal
from otherwise minor cuts and scrapes is often seriously impaired,
leading to a history of ulceration or even a partial amputation.
Special therapeutic shoes, with custom inserts, or extra-depth shoes,
or several other orthotic shoe modifications, are covered by Medicare as
"durable medical equipment." Discuss this with your doctor.
Although many medicines are used for treatment of neuropathy's symptoms, not all are yet officially FDA-licensed for such use. However, doctors have wide leeway in such off-label prescribing, and several prescription medications have passed safety inspection--and are now being evaluated for their efficacy as neuropathy treatments.
New medications are also under investigation, some to treat
symptoms and others that might someday treat the underlying cause, the
demyelinating nerve damage. CenterWatch, a clinical trials listing
service, lists many separate FDA-mandated clinical trials of new
neuropathy medications underway in the United States on human subjects.
One such study is of the drug memantine, already used for Alzheimer's
and Parkinson's and currently under investigation for neuropathy. Many
more studies are at the test tube stage or currently in animal trials.
Unexplained pain or abnormal sensation is a serious matter. It may indicate neuropathy, which may be from diabetes or some other condition; your doctor needs to determine its source promptly. Neuropathy is not an inevitable ramification of diabetes, and you shouldn't just grin and bear it. A lot of different therapies and interventions bring relief to many diabetics. Keep the best blood glucose control you can, keep your doctor informed, and don't lose hope.
For Further Reading
A great deal of research is being done on this subject. Although
most findings are published in professional research journals, World
Wide Web searches on "neuropathy" reveal hundreds of timely listings,
many linked to other sources. Here are a few Websites you might find
<www.niddk.nih.gov/health/diabetes/ndic.htm> The National Institute of Diabetes and Digestive and Kidney Diseases
<www.centerwatch.com> Center Watch; lots of trials underway
<www.intelihealth.com> InteliHealth Website, connected with Harvard; follow links for diabetes.
<www.cdc.gov/> Centers for Disease Control and Prevention
<www.diabetesmonitor.com/dr-00005.htm#neurop> Diabetes Monitor's neuropathy page
<www.parknicollet.com/Diabetes/> International Diabetes Center's Home Page
<www.mendosa.com/neuro.htm> David Mendosa's review of current research in new neuropathy medications; this site also has links to a wealth of other useful information on diabetic neuropathy.
<www.cymbalta.com> Eli Lilly’s Cymbalta/duloxetine Website
<www.lyrica.com> Pfizer’s Lyrica/pregabalin Website
"Diabetic Neuropathy: Current Practice and Promising New Therapies," Interdisciplinary Medicine (March 1999), Vol. 4, No. 1.
"Taming the Pain of Nerve Disease," Diabetes Advisor (May/June 1999), Vol. 7, No. 3.
"New Treatments for Diabetic Neuropathy," by Keith R. Edwards, MD. Home Health Care Consultant (March 1999), Vol. 6, No. 3.
“Pathophysiology of Painful Neuropathy," by Mark Granberry, Suresh Baliga, and Vivian Fonseca. Practical Diabetology (June 1999), Vol. 18, No. 2.
by Thomas Rivera Ley
From the Editor: Tom Ley reports on alternative medical explanations to neuropathy that diabetics should consider when they experience painful symptoms in their hands. His warnings may be useful and certainly warrant attention. This article was originally published in the Winter 2007 edition of Voice of the Diabetic. Here is what he says:
Arthur Segal had type 2 diabetes for many years. When he began to have trouble opening medication bottles, turning door knobs, using a knife, and counting his change, he assumed it was neuropathy and that nothing could be done. Most people with diabetes have heard of a condition called diabetic neuropathy. It takes many forms, and its effects vary from person to person. Because of this, treatment is often difficult and outcomes vary depending on the nature of the individual case.
Your pain, however, may not be due to diabetic neuropathy at all. Long-term diabetics with hand pain may actually be suffering from other hand conditions. Two of the often-overlooked conditions are carpal tunnel syndrome and trigger finger. According to Dr. Keith Segalman, orthopedic hand surgeon with the Curtis Hand Center at Union Memorial Hospital in Baltimore, Maryland, these conditions are more prevalent in diabetics than in the general public.
Surprisingly these conditions are not caused by poor circulation, nor are they forms of diabetic neuropathy. In long-term diabetics advanced glycation end-products (AGEs) can collect on the tendons in the palms of the hand. Accumulation of AGEs causes the tendons to thicken, resulting in nerve compression from pressure on the nerve in the carpal tunnel. This leads to numbness and tingling, similar to neuropathy symptoms, especially when the hands are in certain positions.
Many diabetics also have stiffness or restricted movement in one or more fingers due to trigger finger, which results when the thickened tendons can no longer slide easily through the cartilage rings along the fingers. The rubbing causes the tendon to swell even further to the point where the tendon can no longer slide through the ring.
You may notice that one or more of your fingers will not close all the way when you attempt to make a fist or hold an object. If you are able to force your finger to close, the tendon is forced through the ring but then cannot slide back. Your finger gets stuck in the closed position; thus the term trigger finger. This can be quite painful and cause a dramatic decrease in the usefulness of the hand and fingers.
The good news is that these conditions can usually be treated successfully. For carpal tunnel syndrome, laparoscopic surgery can open the tunnel, relieving the pressure on the nerve. Trigger finger can be treated with local injections of cortisone into the joint, and, if this is not successful, minor surgery can loosen the ring of cartilage to allow the tendon to pass freely once again.The important lesson is that not all problems with the diabetic hand are caused by diabetic neuropathy, and, in the case of carpal tunnel and trigger finger, treatments are usually quite successful. Your hands are an invaluable tool for managing your diabetes, especially if you are blind. So seek the advice of a hand specialist as soon as symptoms appear.
by Dr. Peter O. Kwiterovich
From the Editor: In the Spring 2008 edition of Voice of the Diabetic, Dr. Peter Kwiterovich explored the relationship between good cholesterol levels and heart disease. Diabetics, being particularly susceptible to heart trouble, should take note of this advice and information.
Dr. Kwiterovich is professor of pediatrics and medicine,
chief of the Lipid Research/Atherosclerosis Unit, director of the
University Lipid Clinic, and director of the Johns Hopkins Physicians
Lipid Disorders Training Center at the Johns Hopkins School of
Medicine. He received the Howard W. Blakeslee award of the American
Heart Association for his book Beyond Cholesterol: The Johns Hopkins Complete Guide for Avoiding Heart Disease. Here is what he says:
Having diabetes means that, due to blood fat problems and high blood pressure, your risk of having a heart attack is about the same as it would have been if you already had heart disease. Over time, in addition to high blood sugar, these conditions narrow your arteries. Diabetics often have three abnormalities in their blood fats: too much bad cholesterol (LDL), too little good cholesterol (HDL), and high triglycerides. Any one of these factors can cause heart attacks, but, if all three are present, risk escalates
What Is a Cholesterol Test?
When people talk about getting their cholesterol tested, they are usually referring to a lipid profile in which the levels of three lipids in their blood samples are measured in a lab. The concentration of these fats in your blood report will be reported in milligrams per deciliter (mg/dL). The three fats measured are high-density lipoprotein (HDL), often referred to as good cholesterol; low-density lipoprotein (LDL), often referred to as bad cholesterol; and triglycerides, another type of fat in your blood. The levels of these lipids in your blood can indicate whether you are at risk for coronary heart disease and heart attack.
What Sort of Results Should I Hope For?
You want to keep your LDL cholesterol level below 100 mg/dL. If you have other cardiovascular risk factors, your healthcare provider may want your level to be below 70 mg/dL. HDL cholesterol should be 50 mg/dL or above; triglycerides should be below 150 mg/dL. It’s a little confusing, but the reason you want the HDL to be higher is that that type of cholesterol actually works to remove fat from the blood vessels of your heart. Sometimes with diabetes you have to work on lowering the triglycerides and LDL first and then, when they are stable at low levels, find a way to raise your HDL as well.
What Should I Do if My Doctor Tells Me I Have High Cholesterol?
Work on lowering your bad LDL cholesterol and triglycerides while increasing your good HDL cholesterol. Changing your diet to reduce your intake of animal fat and simple sugars is a good start, but you may also need to increase your aerobic exercise, lose weight, moderate alcohol consumption, and quit smoking.
What Kinds of Medicines Might My Doctor Recommend?
Statins, fibrates, niacin, cholesterol absorption inhibitors, bile acid sequestrants, and omega-3 fatty acids all work in different ways to help bring your blood lipid numbers in line for a healthier heart. Your doctor will recommend the one that matches your circumstances.
Will I Be Able to Tell if I Have Abnormal Blood Fats or Heart Disease?
The only way to keep track of your LDL, HDL, and triglycerides is to check your lipid profile. If your heart is sick, you may have symptoms such as shortness of breath, chest pain, dizziness, swelling of arms and legs, or fatigue. These symptoms can also be caused by other conditions, so always check with your healthcare team if you ever experience any of them.
What Can I Do to Manage My Diabetes and Heart Health?
The best things you can do are: control your blood sugar, manage your diet, and exercise. All of these will help your heart as well. Get your lipid profile at least once a year; do this more often if your doctor recommends it. Measure your blood pressure. Then take steps to control your lipid levels and blood pressure.
by Thomas Rivera Ley
From the Editor: In the Summer 2008 edition of the Voice of the Diabetic, Tom Ley shared his personal experience with discovering that he had gastroparesis and learning how to address the disorder. Statistics show that diabetics suffer disproportionately from this potentially debilitating disorder. While the following account is graphic, Tom's description may help those stumped by what can appear to be a medical mystery find resolution to their problem. Here is what he says:
If you have had diabetes for many years and experience unexplained bouts of severe vomiting and diarrhea from time to time, you may have a moderate form of diabetic gastroparesis. I suffered from these puzzling and completely debilitating episodes for more than six years before I was diagnosed with diabetic gastroparesis. The advice I finally received from a digestive system specialist at Johns Hopkins University Hospital in Baltimore was a true godsend for me and my family. I have been free from symptoms for over five years now. If you, a loved one, or a patient of yours suffers similar symptoms, I hope the advice I pass along here will help. It has changed my life.
My First Episode
I first began experiencing bouts of severe vomiting and diarrhea in 1994, about two decades after my diagnosis of type 1 diabetes. During my first episode I thought I had stomach flu, although the symptoms began quite suddenly, and I did not have the tell-tale fever and body aches. It began with a full feeling in my stomach and the onset of frequent, bad-tasting and bad-smelling burps. Over several hours the burps continued and became more frequent. Nausea grew and the worst vomiting of my life began. I was hesitant to leave the bathroom because, even after vomiting, the nausea didn’t stop. I was vomiting several times an hour. Then my intestines began to rumble in a most extraordinary fashion, followed by, you guessed it, the worst diarrhea I had ever known. The combination of vomiting and severe diarrhea, often occurring simultaneously, went on for six or eight hours or more before I started to feel some relief.
My First Hospitalization
During this first episode I was admitted to the hospital through the emergency room because of dehydration. The doctors put me on intravenous fluids and began searching for the bacteria or virus that was causing my sudden and dramatic symptoms. I had a working kidney transplant, so the doctors left no stone unturned in their search. They ordered a dose of intravenous antibiotics and had every possible body fluid cultured. In the end they found nothing. Once the symptoms slowed down and I was re-hydrated, I actually felt fine again.
The Pattern Begins
I discounted the first episode as just one of those things, but, when I had another one about six months later, I began wondering what was at the root of this problem. Over the next five or six years, I got sick like that two or three times a year. If more than six months passed without an episode, hope would kindle in our hearts that it, whatever it was, was gone. It always came back. Sometimes the episodes were so severe that I would get dehydrated to the point of passing out while vomiting. I recall one episode while visiting friends in New Jersey for a birthday party. Near the end of the party the burps began, and six hours later, after I had taken over the guest bathroom at my friends’ home, my wife Eileen found me passed out on the floor near the toilet. They called an ambulance, but in the end the New Jersey doctors had no more clue than the doctors at home.
The Impact on My Life
I cannot describe how stressful life was during these years. Every time I burped I would feel anxious. Was it starting again? I dreaded sensing the awful taste and smell of a burp, which inevitably meant I was about to go through another twelve hours of the worst vomiting and diarrhea one can imagine. Eileen suffered the same stress each time she heard me burp. Traveling was especially stressful. If I burped when about to board a cross-country flight, my stress level soared. The other aspect was the unpredictable nature of each episode. One minute I was having a great time, and the next minute I was preparing for a possible visit to the hospital from dehydration. One episode even interrupted our honeymoon. Avoiding a trip to the hospital was the only consolation I drew from that occasion. I was helpless to do anything once it started, and having no clue how to prevent it left me horribly frustrated.
The Search for a Diagnosis
My primary care doctor referred me to a gastroenterologist who ordered a gastric emptying study since he suspected diabetic gastroparesis. All three gastric emptying studies I underwent over five years showed my stomach moved the food along just fine. In a gastric emptying study one fasts for half a day to make sure the stomach is completely empty, then eats a cup of food laced with a small amount of radioactive material. The doctors then take pictures of the food as it passes through the digestive system over the next two or three hours. In light of a normal gastric emptying study, one doctor suggested I had a nervous stomach. We noticed episodes often occurred around holidays, and we started to track what I ate to see if the symptoms were an allergic reaction to holiday food. After each episode we tried to think of what I had recently eaten, but no specific food emerged as the trigger. The list of suspected foods--everything from salad, eggs, wine, and champagne to salmon and fruit--was long, but in the end none was what I sought: the trigger food to avoid so that my symptoms would go away.
The Specialist Saves the Day
After my third gastroenterologist received another normal gastric emptying study result, he referred me to a specialist in digestive disorders at Johns Hopkins University Hospital. After hearing my history, the specialist explained that more moderate forms of gastroparesis can be difficult to diagnose. In what he referred to as episodic diabetic gastroparesis, the stomach digests foods normally in most circumstances. But combinations of stress or excitement with larger amounts of hard-to-digest foods can make a diabetic stomach grind to a halt. His explanation made sense. My stomach would empty normally during a gastric emptying study because I had to fast before the test and consume only a small portion of food during the test. During holidays I not only ate much more, but I ate lots of high-fat foods and had the stress or excitement of the holidays with which to contend. And of course our honeymoon was filled with excitement and all manner of food. I did not receive a strict diet to follow. Rather, the doctor educated me on the types of foods that could be problematic and told me to be aware of how often and in which quantities I ate them. I received this advice and started following it about seven years ago. I have had just one incident since then, in 2003, but nothing since. In my last episode I was on an exciting vacation in Lake Tahoe, California, and I had a high-fat Mexican food meal and a large fried chicken dinner the night before. I learned my lesson.
by Dr. Linda A. Lee
From the Editor: Following Tom Ley's description of his experience with diabetes-related gastroparesis, we include the column, originally published in the Summer 2008 edition of the Voice of the Diabetic, from Dr. Linda Lee addressing the science behind this disorder. Dr. Lee is a gastroenterologist on the faculty of Johns Hopkins University, School of Medicine, who specializes in the care of patients suffering from challenging digestive disorders, including gastroparesis. Here is what she says:
Gastroparesis is a disorder in which the stomach does not empty properly. Normally most solid food passes from the stomach within two to four hours after eating. But, if you have gastroparesis, food lingers in your stomach and causes bloating, nausea, vomiting, and abdominal pain. Between 30 and 50 percent of those with diabetes have gastroparesis, and it can affect how well your blood sugars are controlled.
Because your food digests so slowly, you may experience problems with either hyperglycemia or hypoglycemia if you take insulin.
Why am I at risk of gastroparesis just because of my diabetes?
High blood sugar levels in diabetes can cause nerve damage over time, and nerves are embedded in the wall of your gastrointestinal tract. Doctors think damage to these nerves causes gastroparesis.
Is there anything I can do to help prevent getting this condition?
Doctors haven’t proven that controlling your blood sugars alone can prevent gastroparesis. Keeping your levels below 180 gm/dl may help reduce symptoms because higher blood sugar levels do impair the rate at which your stomach empties.
What are the symptoms of gastroparesis?
You may have nausea, particularly after eating; bloating, a sense of fullness that prevents you from eating large meals; vomiting; and abdominal pain. Symptoms may start and stop suddenly or be constant. Gastroparesis may also aggravate heartburn. In mild cases symptoms last just a few days, but in 5 percent of people with gastroparesis, severe symptoms can lead to bouts of dehydration, repeated hospitalizations, and absences from work and family.
How will I know if I have it?
If you have symptoms, your physician will request a radiology test called a solid phase gastric emptying scan. You will eat scrambled eggs prepared with a tracer and then sit with a scanner that will detect the path of the eggs as they move into and out of your stomach over a four-hour period. If you have no other blockage in your stomach or intestine that would interfere with normal stomach emptying and the food sits in your stomach for a prolonged period, then you have gastroparesis.
What are the best ways to manage gastroparesis if I get it?
Avoid foods that have more than three grams of fat per serving, since fat slows stomach emptying. If you have symptoms, avoid fibrous foods like raw vegetables and fruits because these are harder for your stomach to empty. Instead, switch to a liquid diet for a while. Liquids empty from the stomach more rapidly than solid foods. Eat five or six small meals a day. If you are vomiting, drink lots of clear fluids to prevent dehydration. If you cannot keep even liquids down, go to the emergency room so that you can get intravenous fluids. Your doctor may prescribe medications to speed stomach emptying or reduce nausea. Try to keep your blood sugars below 180 gm/dl because higher levels directly slow the emptying of the stomach and can make your symptoms worse. Avoid taking narcotic pain medications; these can further delay your stomach’s emptying.
What else should I know about diabetes and my digestive system?
If you have gastroparesis, you may also have diarrhea or constipation. You should discuss these symptoms with your doctor. If your symptoms are severe enough to interfere with daily activities, consider getting help from a gastroenterologist, a physician who specializes in problems with digestion. To find out more about gastroparesis and current clinical research, visit the National Institutes of Health Gastroparesis Clinical Research Consortium at <www.gpcrc.us>, or visit the Gastroparesis page at the International Foundation for Functional Gastrointestinal Disorders at <www.aboutgiMotility.org>.
by Dr. Milagros (Millie) Samaniego
From the Editor: Dr. Millie Samaniego is an associate professor and transplant physician in the Nephrology Section of the University of Wisconsin--Madison. She is associate editor of the American Journal of Transplantation and is an active member of the American Society of Transplantation, the American Society of Nephrology, and the National Kidney Foundation. Dr. Samaniego has researched kidney transplant rejection and sensitization issues.
In the following article, originally taken from the Fall 2007 edition of Voice of the Diabetic, Dr. Samaniego offers a brief overview of kidney issues and their relationship to diabetes. Here is what she says:
Diabetics are at increased risk of developing kidney disease. This risk varies with the type of diabetes: Although a higher percentage (50 percent) of type 1s will develop kidney disease and failure, type 2 diabetes has become the most common cause of kidney failure because of the large number of people in the United States with type 2. As many as a quarter of people with type 2 diabetes will develop kidney disease, so it’s important to be aware of this risk and make sure you are getting the testing you need to monitor your kidney function.
Why am I at risk of kidney problems just because of my diabetes?
Diabetes damages small and large blood vessels, and the kidney is full of those, so it is at increased risk of damage. At the same time diabetes can cause changes in the pressure inside an important capillary network in the kidney called the glomerulus, which is in charge of filtering the poisons in the blood. This is called glomerular hypertension, which causes the kidneys to work harder and affects the filtration rate and causes more kidney damage. So, if you have diabetes, you must control your blood pressure and make sure you have tests for kidney function every year.
What is the GFR test and why--if at all--do I need it?
The GFR is a check of your glomerular filtration rate (GFR) and is the best reflection of kidney function available. Along with the creatinine level in your blood, age, race, body size, and sex are used in a formula to determine how well your kidneys are filtering waste and extra fluid from your body. If your result is anything below 90 ml per minute, you may have impaired kidney function.
Are there other tests I should be getting to make sure that my kidneys are okay?
You have probably been getting a standard annual urinalysis to check for blood and protein in the urine, but, if you have diabetes, you should also have a separate urine test (microalbuminuria), which looks for a trace protein called mircoalbumin. If microalbumin in your urine is found and you are diabetic, that immediately qualifies you as having kidney disease, regardless of your GFR, so this is an important test. Your doctor may want to follow up with radiological testing such as ultrasound to look at the size of your kidneys, which are usually each about the size of a fist. If they appear small, the shrinking may indicate that you have had kidney disease for a long time. Based on these tests, your doctor may decide to do a kidney biopsy, in which a small needle is inserted and tissue is studied under the microscope.
What are the symptoms of kidney disease or failure--will I be able to tell?
It’s a silent disease. This is why it is important to have the screening tests. By the time you are sent to a nephrologist (kidney doctor), you may already have an advanced form of the disease. If you have undetected kidney disease, you may have swelling of the legs (edema) or hypertension. If you have high blood pressure, you should be seeing a nephrologist.
What are the best ways to manage my diabetes and kidney health.
The best thing you can do to stall the onset or progression of kidney disease is make sure your blood pressure is under optimal control. Talk to your doctor about taking an ace inhibitor or angiotensin-2 receptor blocker even if you don’t have high blood pressure (hypertension). Get annual GFR and microalbuminuria tests, and monitor the results carefully. Also monitor your glycemic control with A1c tests twice a year (every three months if you have not reached your goal), treat high cholesterol, and don’t smoke.
by Thomas Rivera Ley
From the Editor: If, despite your best efforts, you do develop kidney disease, you may--particularly if you are blind--find it more convenient to arrange for home hemodialysis. Tom Ley describes this option in the following article taken from the Fall 2008 edition of Voice of the Diabetic. Here is what he says:
When diabetes damages your kidneys, you face some major decisions about dialysis. If you are also blind, your situation may seem even more complicated, since you may think reliable transportation is essential for getting to your hemodialysis treatment. This used to be so, but nowadays a lesser-known option called home hemodialysis is growing in popularity. This is not a new option, but proponents claim that new machines make it easier and more convenient than ever before.
Two kinds of dialysis are available: Hemodialysis and Peritoneal Dialysis. Each process does some of the work your own kidneys can no longer do, such as filtering, clearing waste, and removing excess fluids from your blood. Hemodialysis requires a dialyzer or artificial kidney machine. Peritoneal dialysis cleans the blood by pushing a special fluid into the abdomen through a small, flexible tube called a PD catheter.
Most people receive hemodialysis in a dialysis center or clinic, where a nurse or technician connects patients and operates the dialysis machine. This is usually done on a fixed, pre-scheduled basis, three days a week for three to four hours each session. Others do peritoneal dialysis at home, often while they sleep.
Imagine getting your dialysis treatments in the comfort of your own home and on your own schedule. Home dialysis users are not locked into a rigid clinic schedule and do not have to fight traffic or bad weather in order to have their blood cleaned. This added flexibility brings with it added responsibility but can make all the difference when it comes to managing your dialysis schedule and fitting it into your personal and professional life.
Flexibility and Health Benefits
According to the National Kidney Foundation, reports conclude that people using short daily and nocturnal home hemodialysis enjoy a number of added health benefits. These include:
• Less need for medication to control blood pressure, anemia, and the phosphorus levels in the blood
• Reduction in neuropathy pain and restless leg syndrome
• Added comfort during dialysis and less severe washed out feeling after treatment
• More energy for daily tasks
• Better sleep
• Fewer and shorter hospital stays
• Better quality of life
• Longer lives
How Home Hemodialysis Works
With home hemodialysis the process is the same as clinic-based hemodialysis, except that you are in charge of your treatment. Most programs also require you to have a care partner who is willing and able to be with you during each treatment. This can be a family member or friend who does not need a medical background. You and your partner are trained to do the dialysis safely and to handle any problems that may arise. Training may take from several weeks to a few months. Together you and your care partner connect your needles and control your machine.
Blind people have a right to enjoy the benefits of home dialysis. Be sure to participate fully in your training. Use your hands to examine the equipment and supplies. Do not be afraid to ask for clarifications; this is your health, and you have a responsibility to participate fully in its maintenance. With the proper training you should be as
Of course the treatment center is only a phone call away. Even if you treat at home, you will need to stay in touch with your dialysis team to make sure that you are getting the regular blood tests and the right amount of dialysis. Some centers even monitor your home treatments by connecting your home dialysis machine to a staffed location by telephone modem or the Internet.
Three Approaches to Home Hemodialysis
Three types of hemodialysis can be performed at home. They are:
1. Conventional home hemodialysis: This treatment is administered three times a week for three to four hours each time.
2. Shorter daily home hemodialysis: This treatment is administered five to seven times a week for about two hours on each occasion. With more frequent dialysis less fluid accumulates between treatments, reducing side-effects like headaches, nausea, cramping, and the washed-out feeling often reported after longer, less frequent treatments.
3. Nocturnal home hemodialysis: This treatment is administered overnight, six nights a week, or every other night for about six to eight hours. The additional hours of dialysis allow more waste removal and reduce side-effects.
Note on expenses: Insurers do not always cover the additional cost of supplies for more frequent dialysis, so work with your dialysis team to advocate with your insurance company for the treatment that best meets your needs. Also check to see if you will need to update the electrical or plumbing systems in your home so they will support your dialysis machine.
Home hemodialysis is not a good fit for everyone. But, if you are willing to invest the time and energy to learn and are willing to take responsibility for your own care, you can enjoy the added health benefits, personal flexibility, and independence that this option offers.
Finding A Home Hemodialysis Center
Finding a home hemodialysis provider can be challenging. The Web resources below can help.
1. The National Kidney Foundation Kidney Learning System (KLS)™—Get information about chronic kidney disease and its treatment.
2. Dialysis Facility Compare—Find information about dialysis centers that offer home hemodialysis training programs. <www.medicare.gov>
3. Home Dialysis Central—Learn about home dialysis options, talk to other patients, find out if a dialysis center near you offers a home hemodialysis program. <www.homedialysis.org>
Tips on Decision Making
Educate yourself. Seek the advice and support of those who have gone before. Interview the center’s medical team and ask them to introduce you to others who have chosen to dialyze at home. Remember, you are still in control, even though your kidneys are not. According to the National Kidney Foundation (kidney.org), the more you know and the more you do on your own, the better you are likely to do on dialysis.
by Ed Bryant
From the Editor: In the Spring 2007 edition of Voice of the Diabetic, Ed Bryant candidly discussed the issue of erectile dysfunction, a condition that disproportionately occurs among diabetic men. Here is what he says:
If you are a diabetic man, we’ve got good news and bad news about your sex life. The bad news is that diabetic men are three times more likely to report having problems with sex than nondiabetic men. The most common sexual problem is erectile dysfunction (ED or impotence). Because ED is such a private issue, many men are embarrassed to discuss the problem with their doctor or partner, so the problem is never addressed.
The good news is that ED is one of the most treatable complications of diabetes. In fact over 95 percent of cases can be successfully treated. With proven treatments available, diabetic men with ED have options. It isn’t something with which you or your partner should have to live.
What ED Is and What ED Is Not
ED is the repeated inability to achieve or sustain an erection sufficient for sexual intercourse. Although sexual vigor generally declines with age, a physically and mentally healthy man should be able to produce erections and enjoy sexual intercourse regardless of age. ED is not an inevitable part of the aging process.
ED does not mean:
• An occasional failure to achieve an erection. The
adage is true: it really does happen to everyone. All men experience
occasional difficulties with erection, usually related to fatigue,
illness, alcohol, drug use, or stress. It isn’t fun, but it is totally
• Diminished interest in sex. ED occurs when a man is interested in sex, but he still cannot achieve or maintain an erection. Many diabetic men also experience a decreased sex drive, often as a result of hormone imbalances or depression. Decreased sex drive is quite treatable, but it is treated differently from ED.
• Problems with ejaculation. Such problems often indicate a structural problem with the penis. The most common treatment is surgical.
How Diabetes Causes ED
Human sexual response requires that several body systems work properly and together: nerves, blood vessels, hormones, and psyche. Unfortunately, diabetes—and even the treatment for diabetes—can affect many of these systems.
• Nerves: One of the most common complications of
diabetes is neuropathy or nerve damage. Erection is a function of the
parasympathetic nervous system, but orgasm and ejaculation are
controlled by the sympathetic system. Neuropathy to either system can
• Blood Vessels: Diabetes damages blood vessels, especially the smallest blood vessels, such as those in the penis. Diabetes can also cause heart disease and other circulatory problems. Proper blood flow is absolutely crucial to achieving erection. “Erection is a hydraulic phenomenon that occurs involuntarily,” says Dr. Arturo Rolla of Harvard University School of Medicine. “Nobody can will an erection.” Anything that limits or impairs blood flow can interfere with the ability to achieve an erection, no matter how strong one’s sexual desire.”
• Hormones: Diabetes often causes kidney disease, and kidney disease in turn can cause chemical changes in the type and amount of hormones one’s body secretes, including the hormones involved in sexual response.
• Psyche: Psychological issues can cause a diminished sex drive, but they can also lead to ED even when one's sex drive is fine. ED can follow major life changes, stressful events, and relationship difficulties. This condition can even follow the fear of ED itself. The physiological changes associated with fear can themselves cause ED.
• Medications: About 25 percent of ED cases are caused by drugs. Many medications, including common medicines prescribed for diabetes and its complications, can cause ED. The most common offenders are blood pressure drugs, antihistamines, antidepressants, tranquilizers, appetite suppressants, and cimetidine (an ulcer drug). Additionally, over-the-counter medications, including certain eye drops and nose drops, have been associated with ED. This does not mean that you should stop taking these medications. You should discuss them with your doctor to determine whether a different dosage, an alternate medicine, or additional treatments will resolve the issue.
Treatments for ED
ED is easily and successfully treated. If your sex drive is unaffected but you experience problems achieving or sustaining erections for a period of four to five weeks, you may have ED. Talk to your doctor immediately. Don’t delay—erectile dysfunction doesn’t just go away. Additionally, ED could be a sign of a serious, life-threatening complication, such as congestive heart failure or kidney disease. Ignoring your ED because it’s embarrassing could jeopardize your health.
Most men seek treatment from their family doctors, who may or may not be familiar with the range of treatment options. A specialist may be a better choice. Specialists include urologists and doctors practicing at ED treatment centers. A thorough physical examination and medical history, along with certain laboratory tests, can help your doctor determine what treatment may resolve your ED. The most common treatments for ED fall into four categories: medications, external mechanical devices, counseling, and surgery.
Oral Medications: The best known ED medications are the Big Three: Viagra (sildenafil citrate, made by Pfizer, Inc.); Levitra (vardenafil HCl, made by Bayer and GlaxoSmithKline); and Cialis (tadalafil, made by Eli Lilly). The three are chemically similar, and all have proven effective. Because they are effective, convenient, and relatively inexpensive (about nine dollars per pill), these medicines have become the treatment of choice for most men experiencing ED.
The main difference among the three is related to their length of effectiveness. Viagra is supposed to work for between thirty minutes and four hours; Levitra is said to work for thirty minutes to two hours; Cialis can last for as long as thirty-six hours. In addition, Viagra is slightly less effective if taken with food; Viagra can also cause temporary abnormalities of color vision.
In some cases, however, these drugs may be unsuitable for patients with heart disease. If you are considering one of these drugs and you have heart disease, be sure to tell your doctor. In rare cases the pills may create priapism, a prolonged and painful erection lasting six hours or more.
Topical Medicines: When the problem is insufficient blood flow, vasodilators (such as nitroglycerine ointment) can be applied to the penis to increase penile blood flow and improve erections. The main side-effect of nitroglycerine ointment is that it may give the partner headaches. To prevent this, the man should use a condom.
Penile Injection Medication: This is just what it sounds like. Injected at home directly into the penis, the medication alprostadil produces erection by relaxing certain muscles, increasing blood flow into the penis and restricting outflow. Although some sources report an 80 percent success rate, the therapy has disadvantages, such as risks of infection, pain, and scarring—fibrosis—in the penis. It may also cause priapism. A popular version of this medication is Upjohn Corporation’s Caverject. The MUSE System, by VIVUS, involves the same medicine (a pellet of alprostadil) applied with an eye-dropper-like applicator directly into the urethra.
External Mechanical Devices
This category of treatments includes external vacuum therapies: devices that go around the penis and produce erections by increasing the inward flow of blood while constricting the outward flow. Such devices imitate a natural erection. They do not interfere with orgasm. External vacuum therapy mechanisms are approximately 95 percent successful in causing and sustaining an erection. All are portable, and costs range between $200 and $500. These devices are covered under most private insurance and Medicare Part B.
The vacuum constriction device consists of a vacuum cylinder, various sizes of tension rings, and a vacuum pump. The vacuum pump can be either hand-operated or electric. The penis is placed in a cylinder to which a tension ring is attached. Air is evacuated from the cylinder by means of the pump, creating a vacuum, which produces the erection. The cylinder is removed, leaving the tension ring at the base of the penis to maintain the erection.
Vacuum therapy devices have a few disadvantages. One must interrupt foreplay to use them. You must use the correct size tension ring and remove it after sustaining the erection for thirty minutes. Initial use may produce some soreness. Such devices may be unsuitable for men with certain bleeding disorders. In general, vacuum constriction devices are successful in management of long-term ED.
Rejoyn is an inexpensive, nonprescription alternative to the vacuum-actuated devices. Described by its manufacturer as a “support sleeve,” it does not cause an erection, but rather supports the flaccid penis as if it were erect; one wears it under a condom.
The great majority of ED cases in diabetic men have a physical cause, such as neuropathy or circulatory problems. In some cases, however, the cause of ED is psychological, including depression, guilt, or anxiety. With a thorough examination the doctor should be able to determine whether the ED is psychological or physical in nature. If the cause is psychological, your doctor may refer you to a psychiatrist, psychologist, sex therapist, or marital counselor. Do not view such a diagnosis as an insult. Most psychologically-based ED is easily and successfully treated.
Two kinds of surgery for ED tend to be used: one involves implantation of a penile prosthesis; the other attempts vascular reconstruction. Expert opinion about surgical implants has changed during recent years; today surgery is no longer widely recommended. Many less-invasive and less-expensive options are available, and surgery should be considered only as a last resort.
The obvious risks are the same that accompany any surgery: infection, pain, bleeding, and scarring. If for some reason the prosthesis or parts become damaged or dislocated, surgical removal may be necessary. With a general success rate of about 90 percent, any of the devices will restore erections, but they will not affect sexual desire, ejaculation, or orgasm.
Three categories of penile prostheses (featuring variations within each major group) are available: rods, inflatable prostheses, and self-contained prostheses. Semi-rigid or malleable rods are the simplest and least expensive of all. Their main disadvantage is that the penis remains constantly erect, which may cause problems with concealment.
Inflatable prostheses are complex mechanical devices that imitate the natural process of erection. Parts are inserted surgically into the penis and scrotum and activated by squeezing. When erection is no longer desired, a valve on the pump is pressed, and the penis becomes flaccid.
Self-contained, single-unit prostheses are similar to the inflatable types but more compact. The entire device is implanted into the penis. When erection is desired, the unit is activated by either squeezing or bending, depending on which of the two types of self-contained prostheses is used.
Vascular reconstructive surgery corrects defects in penile blood vessels. The surgeon may reconstruct the arterial blood supply or remove veins when the cause is leakage. Fewer than 5 percent of men with ED may benefit from vascular surgery.
Like all other diabetic complications ED can occur even when you have followed your doctor’s advice and carefully managed your diabetes. Also like other diabetes complications, ED is less likely to occur with good blood sugar control. Poorly controlled diabetes and high cholesterol increase the chances of vascular complications, which may lead to ED or other circulatory problems. In addition, regular smoking and alcohol use can contribute to ED.
You are not alone; others have faced these difficulties. ED is treatable; you do have options.
by Ann S. Williams
From the Editor: In the Winter 2007 edition of Voice of the Diabetic,
Ann Williams wrote about the worrisome potential for lower-limb
amputations among diabetics and suggests basic strategies for avoiding
this eventuality. This article is full of practical information that
will keep you healthy and on your feet. Here is what she says:
One of the more dramatic and fearsome complications of diabetes is amputation of a lower limb: a foot, a leg, or a toe. Many people can remember older relatives who had an amputation because of diabetes and the difficulties they faced. Sadly in the U.S. about eighty thousand lower-limb amputations are performed a year as a complication of diabetes.
Fortunately, amputation is also one of the more preventable complications. Foot surgeons estimate that up to 85 percent of all diabetes-related amputations can be prevented. Taking care of your feet is not difficult and does not require expensive equipment, extraordinary skills, or much time. Preventing amputation will be well worth any effort you make.
Why do amputations happen to people with long-term diabetes?
People who have had diabetes for more than ten or fifteen years are most at risk of amputations, since they occur more commonly if you have not kept your blood sugar, blood pressure, and cholesterol in control over time. Because your feet are farthest away from your brain, diminished blood flow may affect them first, often damaging blood vessels and nerves. In these cases blood vessels in your legs become narrower, so blood does not flow adequately through the lower legs and feet. Your skin becomes dry and thin, and your muscles, bones, and joints weaken. These conditions also damage nerves in the feet, which eventually become insensitive. The combination of damaged blood vessels and damaged nerves can produce disastrous results.
Let’s say your toenails are thick, and when you cut them you accidentally nick the skin on the toe. Alternatively, you have athlete’s foot, and there is a small crack between your toes. You may simply have a blister. If you cannot sense your feet, you may not be aware of these wounds. Small wounds won’t bleed much, but an opening in the skin can become infected. If your nerves were working well, these mishaps would hurt. But they aren’t, and you don’t notice.
Your blood vessels are too narrow to allow enough flow of blood around the foot wound. Therefore not enough white blood cells can get there to fight the infection, and not enough food and oxygen are arriving to help the cells heal the wound. So it heals slowly, and the infection gets worse.
Now you have a physical stressor on the body (infection) that drives blood sugar even higher. This in turn causes white blood cells to become less effective at their job: fighting infection. The infection spreads and moves deeper into your foot. Your blood sugar surges higher again. This continues in a spiral of worsening damage.
By the time you notice that anything is wrong on your foot, deep infection may have ravaged a large area. Sometimes you can be treated with antibiotics given directly into the blood stream (intravenous, or I.V., antibiotics), but a deep, well-established infection may require amputation of the foot or lower leg. It’s far better to prevent this situation than to try to heal a pervasive infection.
Here are six simple steps to prevent infection and amputation.
1. Keep your whole body healthy: maintain your blood sugar, blood pressure, and cholesterol as close to normal as you can. You need to know how to manage your diabetes. If you have never received a complete diabetes education class, take one. You will also need to see your doctor regularly to have lab tests that are not done at home and to discuss whether you need any changes in medications.
Do not smoke. If you do not smoke, congratulations. You are already doing something important. If you do smoke, you need to know that smoking causes the blood vessels to contract, so less blood gets through. Smoking makes poor circulation worse. Along with damaging your heart and lungs and causing cancer, smoking increases your risk of having an amputation. Make a plan to quit smoking and then carry it out.
2. Keep your feet clean. Wash your feet every day, whether they seem to need it or not. The cleaner your feet are, the less likely you are to get an infection if you do have a small cut. Wash carefully between the toes because that is where athlete’s foot usually starts. After washing, dry your feet thoroughly. Dry between all of your toes to help prevent athlete’s foot. If your skin is thin and fragile, use a soft towel to pat your feet dry gently.
3. If your skin is dry, use a lotion or cream for moisturizing. Dry skin on the feet is not only uncomfortable, it can also be dangerous. Particularly dry skin can crack, and the crack can be an opening for infection. Many special foot care lotions and creams for diabetics are sold over the counter. These can be quite helpful for keeping the skin soft and flexible. If your skin is extremely dry, over-the-counter creams and lotions may not be enough. Prescription foot creams are available for people with this problem. Consult with your podiatrist or doctor.
One particular caution about using creams and lotions on your feet: be careful to keep the area between your toes free of lotions and creams. Keep that area dry. Remember, this is where athlete’s foot often begins. Spread the cream or lotion on the top and bottom of your foot, but avoid the area between your toes.
4. Check your feet every day. Look for blisters, cuts, scratches, corns, calluses, and any changes from the previous day. If you have good eyesight, simply look at the entire surface of your feet, including the bottoms and between the toes. It can be difficult to get the entire foot into a good position for viewing. If you have trouble seeing the bottom of your feet, use a mirror and good lighting.
If you have low vision, a telescoping self-examination mirror might help you. This is a two-sided, shatter-resistant mirror, with one side having no magnification and the other side having 2X magnification. The handle expands from six inches to eighteen inches. This mirror is manufactured by MedPort and is available through many local
If you can see only a little or not at all, you can still inspect your own feet using your senses of touch and smell. First, when you remove your shoes and socks, notice the smell of your feet. Many people’s feet do not smell very good, but they should not smell really foul. An exceptionally bad smell can indicate an infection. In fact, sometimes the feet begin to smell bad a day or two before any other sign of infection appears.
Next check your feet with your fingers. The balls of your fingers are most sensitive to changes in texture and shape, so with your fingers you are checking for small cuts, corns, calluses, swelling, and any change in the shape of your foot. Use a systematic way of going over the entire surface of your feet, one at a time. For example, begin by feeling the top, bottom, and sides of the big toe. Pay special attention to the nail bed. Then move on to the next toe. Feel all the toes, the outer edge of the foot, the heel, and the inner edge. Then feel the entire bottom and top of the foot.
After checking with your fingers, turn your hand over and check
the top, bottom, and sides of the foot with the back of your hand. This
part of your hand is more sensitive to temperature changes and will
allow you to feel any especially warm spots.
A warm spot is likely to be inflamed, which may signal an infection. If you smell or feel anything unusual on your feet, you should discuss it with your podiatrist or doctor. See step six below.
5. Protect your feet from injury. Always wear shoes or protective slippers, even inside your house, especially if your feet are even a little numb. Consider that, if you step on a paperclip and you have bare feet or are wearing only socks, your foot can be injured. Wear something that has a thick enough sole that something sharp on your floor could not go through it.
Wear shoes that fit you well, protect your whole foot, and are made of materials that effectively ventilate. Don’t buy shoes in the wrong size, thinking you’ll break them in. It’s best not to wear open-toed shoes or shoes made of manmade materials that trap the moisture inside the shoe.
Check the inside of your shoes with your hands before putting them on. Small things can sometimes fall into shoes. If your feet are numb, you may not feel the intrusion. For example, I know people with numb feet who have walked all day with pins, Lego blocks, or cat toys in their shoes without knowing it. All three of these people
Always wear socks or stockings made of an absorbent material inside your shoes. Cut or file your toenail following the natural curve of the nail, leaving about 1/8 to 1/4 inch of nail beyond the nail bed. Don’t try to cut the sides of the nail down into the nail bed because this can lead to ingrown toenails. If your toenails are especially thick, consider having a podiatrist cut them. This has the extra advantage of having a healthcare professional who knows your feet examining them regularly.
If you develop corns or calluses, see a podiatrist to have them removed safely. Do not try this at home. It’s too risky to do bathroom surgery on a diabetic foot.
6. If you notice anything unusual about your feet, call your podiatrist or doctor right away.
No problem on a diabetic foot is small. Many people think they are bothering their doctors if they call about what seems like a minor concern. Doctors and podiatrists would rather see a problem on a diabetic foot while it can be healed—you are not bothering them. Remember, if you wait until a problem has become big, it could take a lot of time, effort, and antibiotics to heal it—if it can be healed at all.
The bad news at the beginning of this article is that 85 percent of the diabetic amputations in the U.S. could be prevented. But that is also good news. With careful foot care it is likely that you will be able to prevent an amputation from happening to you. The power to prevent amputation is, quite literally, in your hands.
The Diabetes Action Network (DAN) is a division of the National Federation of the Blind. The great strength of the NFB is our positive philosophy of blindness--the recognition that being blind does not impair mental ability, that most of the problems faced by the blind are caused or exacerbated by the fact that we are a small minority in a sighted world and are subject to the misunderstandings and misconceptions of the public, and that with ingenuity and imagination we can devise alternative techniques to perform most tasks that people often believe require sight. Put simply, we of the NFB believe that attitude counts far more than visual acuity and that, when faced with a task, we should ask, “How can I do this?” rather than “Can I do this?” This is a message of hope, and it is a belief based on the experience of NFB members. We know that blind people can lead normal lives.
This philosophy fits well with good diabetes care. We of the Diabetes Action Network know that with a few adaptations and special devices you can control diabetes, whether you can see or not. Yet not everyone shares this belief, and that prejudice must change.
The NFB will not rest until the assumption that blindness equals incompetence is eradicated from the public mind. Through the Diabetes Action Network we are spreading the gospel that diabetes and its attendant complications such as blindness can be successfully managed and that diabetics (blind or sighted) can live normal, happy, productive lives.
Are you a diabetic experiencing noticeable vision loss? Are you having trouble reading print, traveling independently, or administering your own medications? Would you benefit from connecting with others who can offer you information on managing diabetes and on adjusting to low vision? If so, then you need to learn about NFB-LINK, the National Federation of the Blind’s one-of-a-kind online mentoring resource. Through this program those seeking information about visual impairment will be matched with experienced blind mentors leading successful and independent lives. With a quick visit to <www.nfblink.org>, you can sign up and get a mentor who is ready to answer all of your blindness-related questions such as “How can I check my own blood sugar?” or “How can I read my mail?” NFB-LINK offers the support and guidance you need to live an active and independent life while coping with low vision.
Blindness need not be a barrier to living a fulfilling life. Learn
how to enjoy your hobbies, pursue educational endeavors, explore
employment options, and be at ease with your low vision. Join NFB-LINK
and locate your link to success. For additional information about this
program, contact Rosy Carranza by email at <r[email protected]>,
or by calling (410) 659-9314, ext. 2283.
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Blind and visually impaired diabetics can now read Diabetes Self-Management magazine using the telephone through NFB-NEWSLINE®. Thousands of visually impaired readers already use NFB-NEWSLINE, a free, telephone-based service that enables people to listen to the printed word. The service features hundreds of daily newspapers, several news magazines, and complete television listings. The system allows readers to move quickly through the text of the publications with a standard touch-tone telephone. Now anyone unable to read standard print can listen to Diabetes Self-Management. This informative magazine joins AARP Magazine, the New Yorker, and The Economist on NFB-NEWSLINE. To get connected with NFB-NEWSLINE, call (866) 504-7300 or find it online at <www.nfb.org>.
1800 Johnson Street, Baltimore, Maryland 21230
(866) 504-7300 • (fax) (410) 685-5653 • <www.nfbnewsline.org>
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I am registered with a state or private vocational rehabilitation agency for the blind.
[ ] Yes [ ] No If yes, please specify: ___________________________________
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residential school for the blind. [ ] Yes [ ] No
If yes, please specify: _____________________________________________________
I am registered with a cooperating regional library under the program of the
National Library Service for the Blind and Physically Handicapped of the Library of Congress. [ ] Yes [ ] No
If yes, please specify: _____________________________________________________
If you answered “no” to all the above questions, you must include with this application a copy of a letter from one of the following, which certifies that you are blind or unable to read newsprint due to a disability.
[ ] Your
[ ] Social Security Award letter
[ ] President of a local chapter or state affiliate of the National Federation of the Blind
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I certify that I am blind or visually impaired and unable to read a printed newspaper.
SIGNATURE: ____________________________________ DATE: _______________
PLEASE RETURN THE COMPLETED FORM TO THE ABOVE ADDRESS.
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Subscribe to our free publications by regular or email subscription or read them on our Website: <http://www.nfb.org/nfb/Publications.asp>.
The Braille Monitor is the voice of the National Federation of the Blind. The magazine is published eleven times a year in Braille, in print, on cassette tape, and on the Internet. The Braille Monitor periodically features cutting edge information and inspirational material particularly targeted at blind diabetics.
Future Reflections, the official publication of the National Organization for Parents of Blind Children (a division of the National Federation of the Blind), is a magazine for parents and educators of blind children. The magazine is published quarterly in large print, on cassette tape, and on the Internet.
The Kernel Book series is a collection of books written by the blind themselves. Each book is a mini-anthology of articles and stories by and about blind people drawn from our real-life experiences and emphasizing our positive philosophy about blindness. These books are available in large print, in Braille, on cassette tape, and on our Website.
For subscriptions other than by email, which can be made directly from our Website, write or call us to specify which publications and formats you would like to receive. We can be reached as follows:
National Federation of the Blind
1800 Johnson Street
Baltimore, Maryland 21230
Blind students can and should take advantage of the same scholarship programs as are available to sighted students. However, some scholarships are available only to blind people. The National Federation of the Blind (NFB) annually awards over one hundred and twenty thousand dollars in scholarships to blind students. These scholarships help them purchase adaptive technology, hire readers, and meet other expenses.
Call, write, or visit our Website beginning in November for further information about our scholarship program and to complete the application, the deadline for which is March 31 each year. We can be reached as follows:
National Federation of the Blind
National Scholarship Program
1800 Johnson Street
Baltimore, Maryland 21230
Blind and interested sighted people from all over the United States and around the world participate in the annual convention of the National Federation of the Blind. Approximately three thousand blind people attend this annual event, which is held in different cities each year during the summer months. All of our twenty-nine national divisions and twenty-eight national committees hold meetings during the convention; Marc Maurer (our longtime president) gives a stimulating presidential report, presides over the general sessions, and delivers a powerful banquet speech; governmental officials and heads of blindness-related organizations and companies speak of new developments and interesting topics; over one hundred and twenty thousand dollars in national scholarships are awarded to thirty blind students attending postsecondary institutions; close to one hundred exhibitors display their products and wares in the exhibit hall; numerous social events occur; and much more. The national convention is a life-changing experience for blind people of all ages--one not to be missed.
For specific information about dates, locations, and scheduled activities at any year's convention, visit the updated national convention page of our Website: <http://www.nfb.org>. Details about the national convention can also be found by reading the Braille Monitor. An opportunity to pre-register for the national convention and purchase national banquet tickets is almost always available between March 1 and May 31. Logistics for making hotel reservations vary from year to year, but these details can be easily acquired by contacting the National Federation of the Blind. Please join us at one of our national conventions. Contact us as follows:
National Federation of the Blind
1800 Johnson Street
Baltimore, Maryland 21230
For further information about comprehensive rehabilitation training in blindness skills, contact the executive directors of our three NFB training centers. Specific details about each of these training centers are featured in a series of articles published in the Braille Monitor: the Louisiana Center for the Blind (May 2008), the Colorado Center for the Blind (October 2008), and BLIND Incorporated (February 2009). These editions of the Braille Monitor can be found on the NFB Website at <http://www.nfb.org>. Contact details for these centers follow:
We believe that the long white cane is a means to independence. The white cane has proven a useful tool to millions of people in navigating their environments with confidence and safety. This tool allows blind people to travel where and when they want and therefore leads to self-sufficiency.
We believe that independence and freedom to travel are so important to the quality of life of blind people that every blind person should have a cane, regardless of his or her ability to pay. We are giving, free of charge to the user, straight fiberglass canes. The canes are available in the following lengths: 53, 55, 57, 59, 61, and 63 inches. Any blind person in the fifty states, the District of Columbia, or Puerto Rico may request a cane for personal use. Requests for a single cane may be made as often as every six months.
To make an online application for a free white cane, visit <http://www.nfb.org/freecane/forms.asp>. If you need assistance with this process, contact the National Federation of the Blind at (410) 659-9314 or write to:
National Federation of the Blind
Free White Cane Program
1800 Johnson Street
Baltimore, MD 21230
Every state has an agency that is responsible for helping blind people to find employment and develop skills for living independently. These agencies are required by law to work cooperatively with blind people to help them train for, find, and get the kind of employment for which they are qualified and that they want. If the services blind people need are not available in the state where they live, the agency must help them get services from someone else, if eligible blind people make the request. The laws and regulations related to the federal vocational rehabilitation program are complex, but a variety of organizations and governmental entities, including the National Federation of the Blind, client assistance programs, and protection and advocacy services can all help blind people maneuver their way through the vocational rehabilitation maze.
For further information about the federal vocational rehabilitation program and the agency in your state responsible for administering these services, contact the Rehabilitation Services Administration at (202) 245-7488 or visit <http://www.ed.gov/about/offices/list/osers/rsa/index.html>. You may also contact the NFB, and we can suggest ideas for working with your state agency to develop a plan to achieve your employment goals.
Blind people who have paid into the Social Security system may be eligible for Social Security Disability Insurance (SSDI). Additionally, blind people who have little or no regular income or savings may qualify for monthly payments under the Supplemental Security Income (SSI) program. Contact your local Social Security office for applications; most transactions that you may need to conduct with the Social Security Administration (SSA) can be managed by calling their toll-free number--(800) 772-1213. Information about Social Security benefits for blind people can also be found on SSA's Website: <http://www.ssa.gov>.
The National Federation of the Blind closely follows changes in Social Security laws and regulations, so don't hesitate to call us if you have any questions or problems. We can help you learn about the special Social Security rules and program work-incentives that apply uniquely to blind people. Some of these measures allow blind people to work under certain circumstances while retaining their benefits. Specific program figures and criteria change annually, so we will not list them here. Remember, though, that the NFB can provide information and advice on Social Security issues.
The National Federation of the Blind has published a book for seniors who are blind or losing vision. Titled So You Don't See as Well as You Used to: Advice and Stories That Will Help You, this book is a collection of personal accounts by blind seniors who have developed strategies for successfully living with vision loss. This useful volume also contains a list of helpful resources in your home community. The book (available in large print and on cassette) costs $5. For further information or to order, contact the NFB Independence Market at (410) 659-9314, ext. 2216, or email <IndependenceMark[email protected]>. Request Item LSA103 in your format of choice.
The NFB also has a national division for blind seniors. The NFB Seniors Division meets annually at the NFB national convention and maintains a listserv for interested members. To learn more about the division, contact the NFB national office at (410) 659-9314 or email <[email protected]>.
If your vision is so impaired that you cannot easily read a newspaper, you are eligible for free library service from the Library of Congress, through the National Library Service for the Blind and Physically Handicapped (NLS). The Library of Congress runs the only public library available to blind Americans. This single library serves nearly 800,000 people. It offers free Braille and Talking Book Library Service that sends out recorded or Braille books through a system of regional libraries. You can have materials mailed to you free of charge by postage-free mail through the network of cooperating libraries.
The current technology is cassette tapes played on a special player. The NLS reports: “Using the special four-track, half-speed NLS format, a tape that would normally play only ninety minutes can play for six hours. The additional playing time helps save money on the number of cassettes and makes books easier to use.”
Although the cassettes and cassette playback machines will be with us awhile longer, a new digital cartridge to hold recorded books and a digital machine for playing them have now been developed. The National Library Service is gearing up to convert the cassette system to the new digital technology over the next several years. Beginning in late 2009, borrowers in every state began receiving the new machines. Each year more machines will be issued until everyone is enjoying the new equipment and the digital books. Technologically savvy borrowers are already downloading digital books and reading them on playback machines that they have purchased.
To learn more about eligibility for the free program, call the National Library Service at (202) 707-5100. For the number of your nearest cooperating library, call (888) 657-7323. To register for the service, you will need to complete a short application form.
The National Library Service has recorded a number of books of
interest to diabetics. The following list includes title, author, and
digital book number for ordering.
American Diabetes Association Complete Guide to Diabetes, American Diabetes Association, DB61586
American Medical Association Guide to Living with Diabetes: Preventing and Treating Type 2 Diabetes--Essential Information You and Your Family Need to Know, American Medical Association, DB63411
Atkins Diabetes Revolution: The Groundbreaking Approach to Preventing and Controlling Type 2 Diabetes, Mary Vernon, DB60011
Beating Diabetes: The First Complete Program Clinically Proven to Dramatically Improve Your Glucose Tolerance, David M.Nathan, DB60378
Betty Crocker's Diabetes Cookbook: Everyday Meals, Easy as 1-2-3, Betty Crocker, DB59730
Cheating Destiny: Living with Diabetes, America's Biggest Epidemic, James Hirsch, DB63807
Conquering Diabetes: A Cutting-Edge, Comprehensive Program for Prevention and Treatment, Anne L.Peters, DB60385
Diabesity: The Obesity-Diabetes Epidemic That Threatens America--and What We Must Do to Stop It, Francine Ratner Kaufman, DB60037
Diabetes A to Z: What You Need to Know about Diabetes, Simply Put, American Diabetes Association, DB57648
Diabetes and Heart Healthy Cookbook, American Heart Association, American Diabetes Association, DB62692
The Diabetes Update (grades 5-8)Alvin Silverstein, DB65777
Diabetes: The Ultimate Teen Guide; It Happened to Me, Katherine J. Moran, DB59361
Diabetes, Alvin Silverstein, and others, DB42582
A Field Guide to Type I Diabetes: The Essential Resource from the Diabetes Experts, American Diabetes Association, DB56024
The First Year: Type 2 Diabetes; an Essential Guide for the Newly Diagnosed, Gretchen Becker, DB64186
Getting the Most Out of Diabetes Camp: A Guide for Parents and Kids, American Diabetes Association, DB54696
I'm Tougher than Diabetes!, Alden R. Carter, DB54548
The Joslin Guide to Diabetes: A Program for Managing Your Treatment, Richard S. Beaser, DB61317
Living with Diabetes, Katrina Parker, DB67083
Mayo Clinic on Managing Diabetes, Maria Collazo-Clavell, DB56478
One Hundred One Tips for a Healthy Pregnancy with Diabetes, Patti B.Geil, DB57527
Quick and Easy Low-Carb Cooking for People with Diabetes, Nancy S. Hughes, DB57568
Sex and Diabetes: For Him and for Her, Janis Roszler, DB66258
Sweet Recovery: A Young Woman's Emotional Ride with Diabetes, Vision Loss, and Food Addiction...to Health and Freedom, Denise J. Bradley, DB57322
Think like a Pancreas: A Practical Guide to Managing Diabetes with Insulin, Gary Scheiner, DB59219
Type 2 Diabetes: An Essential Guide for the Newly Diagnosed, Gretchen Becker, DB54748
You Can Eat That! Awesome Food for Kids with Diabetes, Robyn Webb, DB66342
The following list of Websites contains information of potential interest to blind diabetics. Some of the Websites listed here concentrate on the relationship between blindness and diabetes; others simply provide general information about this disease. Many of the Websites listed below are accessible to blind people who use conventional speech-access technology; some are merely usable, but fully reviewing information on these pages will require some effort. A few may not be accessible to blind people at all.
This list is not presented as a comprehensive collection of
diabetes-related Websites, but it provides a good representation of
the valuable material on blindness and diabetes as well as general
diabetes-related matters currently available on the Internet. They are
not listed in any particular order. Inclusion of Websites in the
following list does not imply the endorsement of the National
Federation of the Blind. Nevertheless, we hope this list is useful.
1. The Senior Website of the American Foundation for the Blind (AFB), <http://www.afb.org/seniorsite.asp?SectionID=63&TopicID=291&SubTopicID=126&D>. This Website offers a guide to low vision and diabetes.
2. The American Association of Diabetes Educators (AADE), <http://www.diabeteseducator.org>.
3. The American Dietetic Association, <http://www.eatright.org>. While this Website is not specifically for diabetics, it contains information on healthy eating.
4. An online diabetes data log, <http://www.dia-log.com>. It is usable but not perfectly accessible with access technology. This Website was mentioned earlier in this volume, and readers may find it helpful.
5. The American Diabetes Association, <http://www.diabetes.org>.
6. The Joslin Diabetes Center, <http://www.joslin.org/>.
7. The National Diabetes Information Clearing House of the National Institute on Diabetes and Digestive and Kidney Diseases of the National Institutes of Health, <http://diabetes.niddk.nih.gov/>.
8. The American Association of Clinical Endocrinologists (AACE), <http://www.aace.com/>. Although this Website targets physicians and is therefore somewhat technical, it has excellent technical guidelines and position statements on the treatment and management of diabetes.
9. Diabetes Self-Management Quarterly, <http://www.diabetesselfmanagement.com/>.
10. David Mendosa's diabetes Website, <http://www.mendosa.com/diabetes>. This site has a wealth of information on diabetes management and an excellent directory of diabetes resources on the Internet. Specifically, Mr. Mendosa features sixteen links that address almost every conceivable topic on diabetes. He minces few words in expressing his opinions on diabetes issues; these views are occasionally unconventional. This is one of the most comprehensive online diabetes directories available at the time of this writing.
11. Integrated Diabetes Services, <http://www.integrateddiabetes.com/>. This is a Website operated by Gary Scheiner, the author of Think Like a Pancreas.
12. Diabetes 123, <http://www.childrenwithdiabetes.com/>. This Website is largely devoted to diabetes in children, but it also has information of interest to everyone with this disease.
13. Diabetes Monitor, <http://www.diabetesmonitor.com/>. This is a Website maintained by Dr. Bill Quick, a physician affiliated with a pharmaceutical company. It profiles current, accurate information on diabetes management.
The following compilation of resources may be helpful to
blind diabetics. Some of these items are specific to blindness and
diabetes; other entries are about diabetes in general but will
nevertheless be valuable. This collection of resources may seem a bit
arbitrary, but it was assembled to give blind diabetics access to
information that cannot be found easily in alternative formats. This
information is not comprehensive, but it offers a variety of useful
information in a single location. Resources mentioned in this article
do not imply endorsement by the National Federation of the Blind or any
of its divisions, affiliates, or chapters.
New Diabetes Podcasts from the National Diabetes Education Program
Visit <http://www2a.cdc.gov/podcasts>. “Living with Diabetes and Vision Loss” and “Preventing Vision Loss in Diabetes” are made for a professional audience but are interesting for the lay person as well. An eye specialist and members of the National Federation of the Blind are interviewed about available resources for people with vision loss and diabetes and preventing vision loss in people with diabetes. Many other podcasts at the Website about diabetes are also available, and the National Diabetes Education Program Website at <http://www.ndep.nih.gov/> has a wealth of information about diabetes programs featuring free printable information and tips.
Prodigy® Voice makes monitoring your blood glucose level easier than ever. The audio function is also perfect for all who prefer the spoken word to a digital display. Audio prompts guide you through each step of using your meter and testing your blood, and, when the test is done, you hear the results. For more information visit <www.prodigymeter.com> or call (800) 366-5901.
VisionAware.org Announces a Free Publication on Diabetes and Diabetic Retinopathy
VisionAware is pleased to present "Are You Aware?," a special newsletter issue on diabetes and diabetic retinopathy with Debbie Sokol-McKay (OTR/L, CVRT, CDE, CLVT) as guest author. She provides workshops on adaptive diabetes self-management and low vision in hospital, university, and practice settings; works as an industry consultant and private practitioner; and is an adjunct instructor at the Pennsylvania College of Optometry.
This newsletter's contents and special features include:
• An introduction to diabetes and diabetic retinopathy
• The way blood glucose levels relate to diabetes
• The difference between hyperglycemia and hypoglycemia
• The way diabetes affects the eyes and vision
• Detecting diabetic eye disease
• Treating diabetes and managing your diabetes
• Resources and links for diabetes
VisionAware is also pleased to offer its special issue newsletter on diabetes and diabetic retinopathy in the following formats:
• A regular print downloadable version
• A large print downloadable version
• “How Might Diabetic Retinopathy Affect Everyday Activities?” appears in the Vision and Services section of its regular Website.
Contact VisionAware. Its Self-Help for Vision Loss Website contains free, practical information to enhance quality of life and independence for adults with vision loss, their families and friends, caregivers, and vision professionals. Learn more at <www.VisionAware.org>.
Software for Managing Diabetes
For a comprehensive and up-to-date listing of all varieties of software for managing diabetes (both free and for sale) visit <www.ChildrenWithDiabetes.com/d_06_150.htm>. Another useful Website is <www.Mendosa.com/Software.htm>.
The National Kidney Foundation Can Assist Diabetics
The National Kidney Foundation (NKF) publishes a variety of informational materials about diabetes and chronic kidney disease. The NKF also provides resources and support for those undergoing dialysis or kidney transplants. The NKF seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. For more information, call the NKF at (800) 622-9010, or go to <www.kidney.org>.
The NFB Independence Market has many useful assistance aids for low-vision individuals. If you need magnifiers, low-vision felt-tip pens, or large-print items such as address books, calendars, or check registers, you will find them among the useful items in the market. Contact the NFB’s Independence Market at (410) 659-9314, Ext. 2216; <www.nfb.org>.
Help for Diabetic Amputees
The mission of the Amputee Coalition of America (ACA) is to reach out to people who have lost limbs and to empower them through education, support, and advocacy. This includes access to and delivery of information, quality care, appropriate devices, reimbursement, and the services required to lead fulfilling lives. The ACA publishes InMotion, a magazine that addresses topics of interest to amputees and their families. The ACA toll-free hotline provides answers and resources for people who have lost limbs. In addition the organization develops and distributes booklets, video tapes, and fact sheets to enhance the knowledge and coping skills of amputees affected by amputation. To contact the ACA, call (888) AMP-KNOW (888) 267-5669 or check out the Website at <www.amputee-coalition.org>.
Video Resource for Amputees
The ACA is excited to announce a series of nine new streaming videos entitled Introductory Amputee Care on the ACA Website. The videos, narrated by ACA President and CEO Paddy Rossbach, contain important information for new lower-limb amputees. The nine short videos include “Wrapping with an Elastic Bandage (AK or BK),” “Applying a Shrinker,” “Getting Up from the Floor,” “Walking with a Dynamic Response Foot,” “Using a Cane,” “Using a Walker,” “Using Crutches,” and “Donning an AK Prosthesis with a Full Suction Socket.” These skills are important to the recovery process for all amputees, and these unique videos make initial care for amputees easy to understand. They are an important resource for professionals and caregivers to share with anyone learning how to live with limb loss. The video series can be accessed at <http://www.amputee-coalition.org/video/introductory_amputee_care.html>.
In addition the ACA library contains a number of other video resources. Their video collection, available for interlibrary loan, contains information on a number of topics relevant to the limb-loss community, including rehabilitation for upper extremity and below-the-knee amputees. If you are interested in learning more about available library resources, including information on interlibrary loan, contact the ACA library at <[email protected]>. The mission of the Amputee Coalition of America is to support, educate, and advocate for people with limb difference. These educational videos, including both those available for download and interlibrary loan, are a great free resource for people living with limb loss. Whether you are a professional in the industry, a caregiver, or an amputee, contact the ACA to use all the resources available to you.
Free Diabetes Identification Necklace
The Diabetes Research and Wellness Foundation (DRWF) has the mission “to help find the cure for diabetes, and until that goal is achieved, to provide the care needed to combat the detrimental and life-threatening complications of this terrible disease.” The Foundation offers a wealth of free information covering all aspects of diabetes, which you can order from <www.diabeteswellness.net> or by calling the diabetes helpline at (800) 941-4635.
DRWF offers free identification necklaces for any diabetic who contacts the Foundation. This identification is key when you are unable to speak for yourself in an emergency and reads, “I Have Diabetes; Please Test My Blood Before Treating Me.”
To order, mail your self-addressed, stamped request, including your name and address, to the address below:
Free Diabetes Necklace
5151 Wisconsin Avenue, NW
If you are a healthcare professional and would like to receive a supply of necklaces for distribution to patients, please call us at (202) 298-9211 or email us at <diabetesw[email protected]> to discuss your requirement.