Voice of the Diabetic

The Diabetes Action Network of the National Federation of the Blind
Diabetes Support and Information
Volume 19, Number 2, Spring Edition 2004

+++++++++++++++++++++++++++++++++++++++++++++
Voice of the Diabetic, published quarterly, is the national magazine of the Diabetes Action Network of the National Federation of the Blind. It is read by those interested in all aspects of blindness and diabetes. We show diabetics that they have options regardless of the ramifications they may have had. We have a positive philosophy and know that positive attitudes are contagious!
News items, change of address notices, and other magazine correspondence should be sent to:

Ed Bryant, Editor
Voice of the Diabetic
1412 I-70 Drive SW, Suite C,
Columbia, Missouri 65203
Phone: (573) 875-8911
Fax: (573) 875-8902

Find us on the World Wide Web at: (www.nfb.org)
Our direct Web address is: (www.NFB.org/voice.htm)

Note: The information and advice contained in Voice of the Diabetic are for educational purposes, and are not intended to take the place of personal instruction provided by your physician, or by your health care team. Discuss any changes in your treatment with the appropriate health professionals.

Voice of the Diabetic is offered absolutely free to any interested person upon request. Readers may receive the publication in standard print, on audio cassette for the blind, or in both formats. To begin receiving the Voice, please complete the subscription form (or a facsimile), found at the end, and mail it to the editorial office.

Please Note: We have a special bulk-mailing permit that we use to ship the Voice to you at low cost--it does not allow for free re-mailing. The Post Office requires you place first class postage on any Voice you mail to others.

Includes photo of the three DeFruscio children, with the following overprinted on the photo: Adam, Patrick, and Nikki Tyler DeFruscio, three insulin pump using type 1 diabetics.

SUGARTRAC METER STILL AWAITS APPROVAL
++++++++++++++++++++++++++++++++++++++++++++++
ADVERTISERS

Effective advertising doesn't scream at its audience. It persuades. It sells. The key to cost-effective advertising is making your voice heard where an audience is already listening. Voice of the Diabetic, circulation 332,025, offers such an outlet. Make your voice heard. For Voice of the Diabetic advertising information contact:

Eileen Rivera Ley
National Advertising Sales Manager
804 Hatherleigh Rd
Baltimore, MD 21212
Phone: (410) 296-7760
Fax: (410) 296-7645
or find us on the Web at:
http://www.nfb.org/voice.htm

IMAGINE INDEPENDENCE -- THE THIRD ANNUAL POSSIBILITIES FAIR
ASK THE DOCTOR
by Sarah Johnston Miller, Pharm.D.
DIABETES AND HEART DISEASE: HOW EXERCISE IS EFFECTIVE AT MANAGING
BOTH
by Kristina Sandstedt, M.S., C.D.E., E.S.

Our daughter Nikki Tyler started on the insulin pump three years ago at the age of three. I cannot begin to tell you how much of a difference the insulin pump has made in our lives. A whole new world of flexibility and better control was opened to us. Nikki Tyler is now a happy, fun loving first-grader who loves gymnastics, brownies and piano lessons. She is now able to live a life full of activities and friends something we once thought would be impossible.

Since Nikki Tyler's diagnosis we had have had more painful news. August of 2002, Nikki's brother Adam was diagnosed with type 1 diabetes. Then, four months later, when we thought it couldn't get any worse, our other son Patrick was also diagnosed with type 1 diabetes. Patrick actually knew he had diabetes, but didn't want to tell us, because he didn't want to upset us. We had just diagnosed Adam, and he knew how upset we were with that news. When I saw six water bottles and three drink boxes lined up on his nightstand, I knew. I actually did his blood test with my eyes closed.

With Patrick's diagnosis, we got him right on Lantus, and ordered his pump, which he started four days later. The day Patrick was diagnosed was our day to go out to a movie and dinner--just Patrick and me--and we still did that. It was important to me that we didn't let diabetes take over our household, and for the boys to see, right from the beginning, that they could take control of their diabetes. Of course, we were all still upset with this newest diagnosis--but that's ok, it's healthy to be upset, and we can make the best of it. The insulin pump, and the fact we were able to get both boys on the pump so quickly, has really helped us all adjust to life with diabetes.

As a family, my husband and I have tried to attack this disease in the most positive of ways. We had Adam on an insulin pump within two weeks of diagnosis, and Patrick was on the pump within four days. Since our family already had the knowledge of pumping, our doctors felt comfortable with letting them go right onto the pump. I might add that we have an awesome medical team: Dr. Jill Abelseth, who was willing to work with a child as young as Nikki Tyler, and Dr. Gary Bakst, who was willing to allow the boys to start pumping immediately. For us as a family, and for the boys as growing independent teens, the insulin pump has been the reason they can continue to do all the things they love to do. The boys have quickly adapted to counting carbs, testing and bolusing. We download the results from their meters, to make sure they really are testing. (Remember they are kids--and they can throw numbers out to you like the best of them; with downloading meters, we can see clearly when they are testing, and what the numbers really look like.) And we closely supervise insulin doses and adjustments; but the pump allows them the independence they had before diabetes.

In our house, diabetes is the norm. The boys now know first-hand what their sister has been going through for years, and they all work together at helping each other with carb counting, site changes and treatments. Nikki Tyler is very active, just like the other kids her age--and the boys play baseball, basketball and swim. We do not allow diabetes to be the excuse for why they can't do something. Everyone has something in their lives they have to deal with--for us it's diabetes. We tell our kids there's nothing they can't do; they just have to work with the numbers. I think the boys see that when they are controlling their blood sugars, they feel better. We also stress that what they are doing today will affect how they feel years from now.

Nikki Tyler was the reason my best friend and I started Pump Wear Inc.: www.pumpwearinc.com, a place where children and adults can find fun, creative ways to wear the insulin pump. The insulin pump is a part of Nikki now, and she loves carrying it in her collection of pump cases. Of course, with the diagnosis of our sons, we have expanded our boys' and adults' lines of insulin cases and clothes. The boys love telling us what works and what doesn't; they even help out now with folding brochures and filling orders. It really has become a "pumping affair" in our house.

I think the most important thing our children need to know is that by treating diabetes in a proactive way and by working with their blood sugar numbers they can live, and are living, a healthy life. Working with and controlling diabetes has become a way of life for us--and the insulin pump is one tool there to help us win the battle!

Americans are living longer, and vision loss occurs more frequently among those who are older. More than 50 percent of the 70,000 individuals who become blind in this country each year are over the age of 65, and this population is expected to more than double by the year 2030.

Seniors losing vision are often unaware of the resources and services available to them, and yet eager to learn strategies that continue living independent lives. The National Federation of the Blind invites these seniors, their families, and the professionals who work with them to attend the third annual Possibilities Fair. This fair will provide a hands-on opportunity for those 55 and older who are losing vision (and their families) to learn how to improve their lives.

There will be speakers and demonstrations of helpful techniques, equipment, and services for seniors losing vision. Participants will learn about books on tape, newspapers over the telephone, talking computers, and magnification devices. Mobility strategies and kitchen techniques will be demonstrated, and there will be a display of helpful gadgets and gizmos.

This fair will also include helpful hint discussions about losing vision and enjoying life! The fair takes place on Thursday, May 20, 2004, from 10:30 a.m. to 3:00 p.m. The cost is $15, and lunch will be provided. The fair will be held at the National Federation of the Blind's new Jernigan Institute, 1800 Johnson Street, Baltimore, Maryland 21230. To find out more about this event, or to learn how a similar one can be held in your community, call (410) 659-9314, ext. 2297.

(Note from Dr. Wes Wilson: Looking at this question, I felt it would be wise to refer it to a pharmacist who is actively involved in both patient care and in teaching students about such problems. Dr. Sarah Miller is Professor of Clinical Pharmacy at the University of Montana, and is also a consultant at St. Patrick Hospital in Missoula, Montana. Her answer should be helpful.)

Q: Which nonprescription drug products for treatment of common cold symptoms should a person with diabetes avoid?

A: There is some concern about the effect some nonprescription (over-the-counter) medications may have on blood sugar control. The diabetic patient should always remember that, in general, "sick days" may be associated with fluctuations in blood sugar. This may be related to the stress of being sick, or to changes in dietary intake during illness. Your nonprescription medications may not be at fault at all--but it pays to know. A severe bout of the common cold (a viral illness) could certainly produce "sick days," elevated blood sugars--without any effects from your nonprescription or other medications. When you're sick, test your blood more often.

Textbooks may list quite a few classes of potentially-problematic medications, though many of these are in reality not very significant. Regardless, the diabetic patient should always contact their health care provider (physician, diabetes educator, or pharmacist) prior to taking any new nonprescription medication. This includes "lternative"remedies purchased at the health food store or elsewhere; "natural" does not mean "safe from interactions!"

You should be cautious that many nonprescription medications, including those targeting symptoms of the common cold, contain multiple ingredients. Another caution relates to the "branding" of products. Don't assume that all products carrying the same name (like "Robitussin") contain the same ingredients. For example, the content of Robitussin differs from that of Robitussin CF, which differs from that of Robitussin PM. In addition, the diabetic patient should be aware many nonprescription medications for the common cold (especially liquid medications and cough drops) contain sugar. Many sugar-free alternatives are available, and these may be better options for the diabetic patient.

Classes of nonprescription medications most commonly utilized to relieve symptoms of the common cold include decongestants, antihistamines, analgesics/antipyretics, antitussives, and expectorants. I will briefly discuss potential effects on blood sugar of some representatives of these classes.

Decongestants relieve the nasal stuffiness and congestion characteristic of the common cold. In oral form, the most common decongestants are pseudoephedrine (Sudafed) and phenylephrine. Oral decongestants as a category have the most potential for affecting your blood sugar control. They can increase blood sugar by preventing insulin secretion, by decreasing glucose uptake into peripheral tissues, and by stimulating glycogen (the body's own stored glucose reserve) breakdown. Diabetic patients should definitely check with their health care providers before using an oral decongestant.

Decongestants are also available for direct administration (spray or drops) into the nose. These include oxymetazoline (Afrin), phenylephrine (Neo-Synephrine), and xylometazoline (Otrivin). Since these nasal sprays are less fully absorbed into the bloodstream than are the oral agents, they should have less effect on blood sugar levels. However, such sprays should not be used for more than three to five days at a time, as prolonged use can worsen nasal congestion.

Antihistamines, more commonly used to treat allergic rhinitis, may have some limited benefit against the common cold, as they decrease runny nose and sneezing. Common nonprescription antihistamines include diphenhydramine (Benedryl Allergy Tablets), chlorpheniramine (Chlor-Trimeton Allergy Tablets) and loratadine (Claritin). This class of drugs has no effect on blood sugar.

Analgesics are used for aches and pains associated with the common cold, and antipyretics address fever. Aspirin, acetaminophen (Tylenol), ibuprofen (Advil), naproxen (Aleve) and ketoprofen (Orudis) are nonprescription members of this category.

Low dose aspirin (up to 325mg per day) is recommended for diabetic patients, to help prevent cardiovascular disease. Very high dosages of aspirin and other salicylate drugs can cause hypoglycemia, and should thus be avoided by diabetic patients. Aspirin should not be given in any dosage to children who have a viral infection, as it may precipitate a severe illness known as Reye's syndrome. Acetaminophen is probably the safest analgesic/antipyretic for diabetic patients. Ibuprofen, naproxen, and ketoprofen do not have significant effects on blood sugar, but should be used with caution by patients who have renal insufficiency.

Antitussive agents help suppress cough. The most common active ingredient in this class is dextromethorphan. Diphenhydramine, an antihistamine, described above, is also an approved antitussive, though considered "second line" for cough. Codeine is available by prescription in some states, without prescription in others. None of these cough suppressant medications significantly affect blood sugar control.

The final major category of agents used to treat symptoms of the common cold is the expectorants. These medications loosen respiratory tract secretions and make coughs more productive. The most common active ingredient in this category is guaifenesin--which has no effect on blood sugar control.

When considering nonprescription medications, another issue of concern is whether or not they interact with other medications (especially prescription meds) the individual is already taking. Though many interactions listed in the references are clinically insignificant, a few can be significant, or even life threatening. If you are taking medications for diabetes, or to deal with a diabetes complication such as heart disease, or even treatment for depression, check with your doctor, diabetes educator and pharmacist regarding possible interactions between these medications, any "alternative/herbal" substances you might be taking, and nonprescription medications used to relieve symptoms of the common cold.

How does one define "regular exercise?" We often hear a variety of different time durations, frequencies and intensities, related to appropriate exercise regimens. Whether it is 30-minutes everyday, 20 to 30 minutes three times per week, or one hour four to five days per week at 75 to 80 percent of maximum, we are barraged with numerous formulas that often confuse us rather than help us answer our initial question. It is no wonder 60 to 80 percent of individuals with diabetes do not meet exercise guidelines (McKay et.al., 2002). Part of the problem is the uncertainty of knowing how much, how often and how hard.

Much has been discussed and documented regarding diabetes and cardiovascular disease. According to Dr. Richard Nesto, spokesperson for the American Heart Association and chairman of the department of cardiovascular medicine at Lahey Clinic Medical Center in Burlington, Mass., "By the time a person is diagnosed with type 2 diabetes, they are already at high risk for cardiovascular disease." He continues, "The reality is that heart disease is responsible for the majority of deaths in people with diabetes."

Furthermore, researchers and health care professional have estimated that 80 percent of individuals with diabetes will die of heart related complications--and according to a new survey commissioned by the American Diabetes Association and the American College of Cardiology, 68 percent of people with diabetes are not aware of the correlation. In addition, only 33 percent of people with type 2 DM consider heart disease to be among the "most serious" diabetes related complications. It seems evident that diabetes is a cardiovascular disease and more education regarding the correlation is warranted.

Market research firm RoperASW conducted a survey of 2,008 people that supported this discrepancy--between the perception and reality of the diabetes/heart disease correlation. Interviews were conducted using random direct dial screenings of US households. Results were weighted and projected to match the US diagnosed diabetes patient population of 10.7 million, based on information from the National Center for Health Statistics and the Centers for Disease Control and Prevention (CDC). Although studies have shown that most people with diabetes have other cardiovascular disease risk factors such as high blood pressure and cholesterol, the people surveyed did not share concern for those risk factors. More than half of the people with diabetes who were polled did not feel at risk for a heart condition (52 percent) or stroke (53 percent), and nearly two thirds (60 percent) did not feel at risk for either high blood pressure or cholesterol.

When discussing the implications of these findings, Christopher D. Saudek, MD, president of the American Diabetes Association, suggested, "Education is vital. This research points out that people with diabetes, especially older adults and high risk groups such as African Americans, Hispanics and Native Americans, need to know that good diabetes management is more than just lowering blood glucose. They also need to know how, in addition to managing their weight and increasing physical activity, they can reduce cardiovascular risks such as taking aspirin or prescription medications for lowering high blood pressure and cholesterol, and quitting smoking."

Dr. Harry Pigman (2002) and his research team performed a study evaluating the effects of exercise in management of patients with type 2 diabetes. Their findings revealed that after adjusting for age, race, smoking, BMI, diet and various diabetes medications, patients without regular exercise, defined as walking between 30-60 minutes daily, were nearly three times more likely than patients with regular exercise to have poor diabetes control (HbA greater than 8.0). Furthermore, the researchers have reported a dose-response relationship between the amount of physical activity and the degree of reduction in diabetes risk, while others have not. A general agreement among most researchers is that regular vigorous physical activity affords the greatest health benefits, but even moderate physical activity offers significant benefit. This finding is consistent with the theory that exercise is essential for good blood glucose control. In addition, exercise lowers adipose tissue, which has a positive effect on insulin sensitivity and glucose tolerance. A reduction in free fatty acid (FFA) levels is also observed when adipose tissue decreases. Many studies are currently underway investigating the role of FFA and blood glucose control.

When prescribing exercise to a client with diabetes, it is important to consider the increased risk for cardiovascular disease. Specifically, it is essential to tailor the exercise regimen to meet the exercise goals of an individual with documented coronary artery disease. For such clients, recommending an exercise regimen that would result in a minimum of 1500 calories expended per week is ideal. Such a recommendation is based on numerous lifestyle and medical intervention studies looking at secondary prevention of coronary artery disease. These studies include but are not limited to the Ornish Lifestyle Heart Trial, the Heidelberg study of secondary prevention of CAD, and St. Thomas Atherosclerosis Regression Study. For example, the Heidelberg trial demonstrated that it took 2000-2200 calories per week to cause regression of coronary artery disease and 1500 to stabilize coronary atherosclerosis. The American College of Sports Medicine and American Heart Association support and recommend similar guidelines.

It takes most cardiac patients with low-to-moderate exercise capacity about three to five hours (180-300 minutes) per week to expend 1500 calories or more. This can be achieved in both structured exercise programs and by increasing lifestyle physical activity. Examples of lifestyle physical activity are, parking further away from destination, taking stairs instead of elevator, walking on a lunch break, walking to your mailbox, gardening, and housework.

It is preferred to present exercise duration in terms of minutes because most people feel they have more minutes in their day rather than hours. By providing minutes, clients can decide how they want to accumulate their exercise time, week by week. Specifically, if a client knows they will only have four days to achieve 180 minutes of the exercise, then they should exercise for 45 minutes each session. Likewise, if they have six days, then they should exercise for 30 minutes each session. It is important to note that ideally clients should try to spread the three to five hours over four to seven days. I believe it is very effective to break up the total exercise duration into 10-15 minute segments, two to three times per day, especially with novice exercisers more likely to have low exercise capacities. This ultimately increases compliance, as the client experiences his or her own individual success.

As clients achieve improved physical conditioning, I encourage them to extend one of their exercise segments, therefore eliminating the multiple exercise sessions per day. This puts the client on track to achieving not only good blood glucose control but also decreasing and/or managing cardiovascular risk factors.

Intensity plays an important role in exercise, and I prefer to explain the intensity component using the Rate of Perceived Exertion Scale (Borg). It is important to tell the client to pay attention to their breathing. Most of us breathe through our noses when we are in a resting or low impact state. When we place exertional demands on our body we require more oxygenated flow, and therefore we begin to open our mouths. I explain that complete mouth breathing is a good indicator that you have reached the appropriate intensity. Open-mouth breathing, feeling warm, perhaps perspiring, and broken-up sentences when talking, corresponds to a "13--Somewhat Heavy" on the Perceived Exertion Scale. A client is exercising at the optimal intensity if, when asked to rate how hard the exercise feels, they respond with a "13--or Somewhat Heavy." It is ideal to have the client exercising while the perceived exertion scale is explained. By doing this, the intensity component is better understood--however, this is not always conducive in a classroom setting.

It is very important to recognize when exercise is contraindicated for an individual with diabetes and/or coronary artery disease. Exercise is contraindicated if clients have a resting blood pressure of 210mmHg over 110mmHg and/or exacerbated systolic and/or diastolic blood pressure responses to aerobic exercise (systolic pressure greater than 260mmHg, diastolic pressure greater than 120mmHg). Other contraindications are uncontrolled blood glucose causing the presence of ketones and uncontrolled congested heart failure. Refer to American College of Sports Medicine Guidelines, sixth edition and/or The American Association of Cardiovascular and Pulmonary Rehabilitation Guidelines, third edition for a more extensive list of contraindications to exercise.
If your client does not fall under the contraindications for exercise, it is extremely important to encourage them to start a structured exercise program that emphasizes aerobic activity. Too many clients with diabetes are not encouraged to exercise at their full potential, therefore preventing them from not only achieving optimal benefit for blood glucose control, but also effective management of risk factors for coronary artery disease.

Individuals with diabetes who suffer from chronic complications often do not take part in physical activity programs. It is extremely useful for this population to undertake an exercise program to improve or maintain their functional capacity, strength, and flexibility. It is always important to perform a comprehensive assessment to determine the most appropriate exercises, specifically land or water. For exercise recommendations to accommodate specific diabetes complications, refer to the fourth edition of the AADE's Core Curriculum for Diabetes Education.

Kristina Sandstedt, M.S., C.D.E., E.S., received her Masters of Science degree from the University of Montana-Missoula. She is a Certified Diabetes Educator and is also a certified Exercise Specialist through the American College of Sports Medicine. She is the program coordinator for Boone Hospital's ADA certified outpatient diabetes center located in WELLAWARE. Columbia, MO.

Type 1 diabetics, and many type 2s, need to inject insulin. When the time comes, they need to take that shot, on schedule, or they risk high blood sugars, and the damage that can follow. It is as important to take your insulin on time as it is to eat on time.

A lot of people really don't like needles. I'm not addressing the new diabetic who looks on his syringe or insulin pen with distaste, but the public. When people don't know--there can be fear. How many of you have found it was time to inject, in public, but either put it off, headed for the nearest restroom, or had to face a lot of unnecessary cringing and whispering from your neighbors?

And it can get worse. Illegal drugs are big news--and to the uninformed, that insulin syringe can make you look like an addict. We know insulin is not heroin or "crack" cocaine--but clueless people can get a little hysterical when they don't understand.

Sometimes clueless people call the cops. Sometimes they are the cops. It's bad enough untrained policemen sometimes mistake hypoglycemia for public intoxication, with tragic results, but there are stories, too many of them, of insulin and syringes being mistaken for drug paraphenelia.

We don't need this. Diabetes is hard enough. Clearly, education is needed--a lot of it. More than 3.5 million Americans use insulin (according to the latest estimates from www.cdc.gov/diabetes/statistics), millions more need to regularly test their blood (another problem for the uninformed public), and all of us, unless we're going to be bedroom hermits, will need to cope with the public.

Clearly, the public needs to be educated. We diabetics can't do it all. A bit more discussion of diabetes in school health classes would be a start. Perhaps Hollywood could create a few high-profile roles that featured someone with diabetes? People get far more of their education from the movies than any educator wants to admit. Get people used to it.

First, when traveling, we can recognize folks are scared of illegal drugs. We can, we should, carry medical IDs, so we can show them to cops, baggage searchers, and customs officials. For international travel, it is worthwhile to carry an explanatory letter from your doctor. You may never encounter trouble--but isn't it better to be prepared?

The following are just a few examples of diabetics taking their shots, and the impression someone from the public had. First, I have made injections countless times while out in public, and have never experienced any problems. Although I try to be discreet, I haven't, for a long time, resorted to a public restroom to take my shot. I usually just inject through my clothing, and it is over with in the blink of an eye. By being courteous, and perhaps telling onlookers what you are doing, you may ward off problems. Recently, while seated at a restaurant, I was about to take my shot, when the waitress showed up. I told her I was a diabetic; that I was about to give myself a shot of insulin.

In the Voice, Volume 18, No. 3, we carried an article about Bill Eberly, from Akron, Ohio, who at that time had had diabetes for 75 years. He experienced difficulties. In 1949, the police arrested him in the Buffalo, New York, Railroad Station, thinking his insulin syringe contained cocaine. He had to prove he was a diabetic.

More recently, rock singer Brent Michaels (of the band Poison), a type 1 diabetic, was seen by an uncomprehending fan, injecting insulin, and the rumor went around that he was shooting up heroin. We know better.

Generally, we can take our shots in public, without someone thinking we are on drugs, or calling the cops. It probably will not happen, but some times and places, it has, and we should be cognizant of the possibility. Being prepared makes it so much easier to cope.

If you would like to share a personal experience, I can be reached at the Voice editorial office, or by email at [email protected]

This column focuses on providing information to help people make their diabetes care fit their needs and their lives.

This month, I'm going to write a different sort of column. This month, I will interview a person I know, who has had an extraordinary, life-changing event.

A few weeks ago I received a phone call, from Greg King, who has had type 1 diabetes for 32 years. "Guess what, Ann?" he said to me, "I don't have diabetes any more. I got my new pancreas!" We cheered together, and he went on to tell me that he had woken up with absolutely normal blood glucose that morning.

Over the next few days I spoke with Greg several times. He felt overwhelming relief and joy at being able to have normal blood sugar, with no hypoglycemia. He mentioned, several times, that his thinking was clearer than it had been for many years, and that even though he was recovering from major surgery, he felt better and stronger than he had for years.

A few weeks later, Greg and I talked, about his life with diabetes, and his new pancreas. His enthusiasm is contagious. I think many people would be interested in hearing his story, so with Greg's permission, I'll give you a condensed version now.

Ann: Tell me a little about what happened to you around the time your diabetes was first diagnosed.

Greg: I was ten years old. It was January 29, 1972. I was doing math homework, and I got a headache, and I went to lie down. I was feeling really sick for three or four days. I asked my father to take me to a hospital, and he did, and I was diagnosed with type 1 diabetes. When I looked back on it, I realized I had been thirsty in school a lot, and peeing all day long, and this had gone on for several weeks.

Greg: One thing I remember is a big change in my family's diet. I was the second oldest of six kids. The whole family eventually changed our way of eating. We used to eat a lot of things like pancakes, and biscuits with syrup. But after we learned I had diabetes, we had to keep balanced food in the house. That wasn't easy. We weren't rich. We had to feed a lot of people on a little money, and it had to be balanced food.

And then there was the suffering with hypoglycemia when I was young. My answer to hypos in those days was junk food. I was never a couch potato. I was always active. So, for example, maybe I was in someone's yard playing football, and I'd get that horrible feeling, all shaky and sweaty. It's a terrible feeling. So I'd eat junk food, whatever was handy. I didn't know yet that it takes 15-30 minutes for the food to convert to glucose and raise the blood sugar. So I'd just gorge myself with junk, and then I was on a seesaw, going from low to high. When I was young, I could do that and not feel bad. But when I got older, I could really feel it, and it isn't a good feeling.

Greg: When you're young, with type 1 diabetes, you have to take care of it. You feel like nothing bad is happening, so it's hard to believe the complications can really happen to you. But they can happen to you, and they will happen to you, if you don't take care of the diabetes.

And I really did not know much about the complications when I was young. The doctors beat around the bush with me. They told me, "You could get this, you could get that." But they never told me straight out that if I didn't take care of my blood sugar, I would go blind, or lose my kidneys, or anything else. I wish the doctors and diabetes educators had told me about the complications more clearly--what the complications are, and how they happen, and how to avoid them.

When I was young, I felt invulnerable. Maybe if I had met someone who already had diabetes complications, I would have paid more attention.

Greg: When I started having protein in my urine, and the doctors got more serious about explaining kidney failure. I was a young adult, trying to make a living, trying to have money in my pocket and gas in my car, not paying much attention to diabetes. I was a draftsman, and that was monotonous work. And then I worked in a small food store for a while, and then I worked in security. Then I was a county patrolman. I really loved that job. I wanted to stay in that job until retirement. I was there for two years and 18 days, and that was the end of my short work life.

Greg: I had been having laser surgery for diabetic retinopathy for about 2 1/2 years. Then, on March 21, 1988, I woke up and everything looked very fuzzy. I had driven home the night before, but after that I was blind. I had to give up driving cold turkey. That was very hard for me, because I loved to drive.

Greg: We had a very hot summer that year. There was no air conditioner in our house, and I couldn't get in the car, which had an air conditioner, or go somewhere else with an air conditioner. I thought I would die of the heat. I had some rehabilitation teaching at Cleveland Sight Center, and I was entrenched in kidney disease. I was tired and slept all the time, and dialysis was just around the corner.

Ann: That was around the time I first met you. As I remember, you were on dialysis soon after that.

Greg: Yes. I started dialysis in September 1988. It was awful. I felt terrible the whole time I was on dialysis. I had dialysis three times a week for four years.

Greg: That's right. Always, from the beginning, the doctors and nurses encouraged me to get on the transplant list. I was on the waiting list for four years before I got my kidney. I had four false alarms before I actually got a kidney that matched my tissue type. I would get a call, and go to the hospital, and the tissue type wasn't exactly right, so I would have to go home without a kidney.

My kidney came in the nick of time. I wasn't doing very well physically. I got a call about 2 AM. It was my time. They had a kidney with a good tissue match. I had to go to the hospital right away for more tests to confirm the tissue type. Then in the morning it was a go. I had the surgery, and when I woke up what I remember the most is that I could pee. Because when the kidney shuts down, there is no peeing. It's almost unbelievable how good it is to do that when you haven't been able to for so long.

Greg: No, I've never had any rejection episodes. I have been on anti-rejection medications the whole time. And I have never had any adverse side effects from them, other than a little bloating.

Greg: My doctors were throwing subtle hints to me, telling me my diabetes could do the same thing to my new kidney as it did to my old ones. They were strongly hinting, and urging me about having a pancreas transplant. I gave it some thought, but I didn't have to think too long. I was fortunate enough to be nine years out from the kidney transplant, with my kidney still working, and no bad effects.

I talked it over with my family. No one wanted me to have another major surgery. But then we considered what it would mean to be rid of diabetes. No more injections, no more hypoglycemia, no more diets. The hypoglycemia episodes were increasingly frequent, and the rebound from my low blood sugars didn't allow my muscles to regain energy. I often had to lie down and rest. And the neuropathy, the numbness in my feet and calves, was increasing. If I stepped on a nail, I was not going to feel it. Once my family understood what getting rid of diabetes would mean to me, they agreed.

Greg: I had a lot of screenings--blood work, urine tests, an EKG, an echocardiogram, an ultrasound of the lower abdomen to locate the exact position of all the organs. They wanted to make sure I was strong enough and well enough to recover from the surgery. They checked to make sure I had insurance coverage for the anti-rejection drugs. Those are expensive drugs, and you have to take them twice a day for the rest of your life. I also had to see a social worker, to go over my family life, to make sure I had the support I would need.

They evaluated me thoroughly. Organs are scarce, and they want to make sure each organ goes to someone who will keep it and use it.

I was on the waiting list for 20 months exactly, from May 9, 2002 until January 9, 2004. I had false calls eight times, when I would get a call that they had a pancreas, and I would go to the hospital, and the tissue match would not work out. I finally got my pancreas on January 9, 2004.

Greg: I couldn't get discouraged. I had to get focused on keeping the blood chemistries right and keeping my health together. I knew I needed to be in good shape, in order to come through the surgery all right. I just stayed focused, because I knew what the mission was. And it was worth it.

Greg: I woke up, and my head cleared, and I thought, "My blood sugar is normal. It's on the center line. It's not high, and there is no hypo in sight. Hypoglycemia is just not coming." I was amazed. My thinking was clearer than it had been for years. A nurse would test my blood sugar, and it would be 95, and I would think out of habit, "I'd better brace myself for a low blood sugar." And the low never came. I just couldn't get over it. I had normal blood sugar all the time, and never, ever had any more hypoglycemia.

It was three or four days before my stomach woke up, so at first I had only IVs and clear fluids. Then I began to be able to eat, at first just soft, light foods, then real meals. And still, I had normal blood sugar all the time, and never, ever any hypoglycemia.

Greg: I came home seven days after the transplant. At first, I was weaker than I expected. I don't know where I got the impression I would be bouncing around like a ball. I could walk, but I was just inching across the floor at first. The first two or three weeks were painful. But gradually, the pain decreased, and my strength increased. Now, one month after the surgery, I have no pain. Even the numbness in my feet and calves, from neuropathy, is completely gone.

It's overwhelming to me, how much energy I have, now that my blood sugar is completely stable. I'm just starting to exercise. I'm not supposed to lift more than 20 pounds, so I'm just doing a little light walking for now. I have plans for a full exercise regimen. I'll begin with a very light routine, and work myself up.

Greg: Not really, not on a day-to-day basis. I learned to eat healthy for my diabetes, and now I want to stay healthy, so I can live a long life and enjoy it. As long as I already have a lot of good, healthy eating habits, I'll just keep it that way. I don't eat junk. I did go to a restaurant, and I had some pancakes with real syrup. But I didn't go hog-wild. I just had four medium-sized pancakes, and that was enough. I felt satisfied, so why eat any more?

Greg: I need some time to think about long-term plans. Before I had the pancreas transplant, I didn't think I would have a long life. I thought diabetes was going to kill me. Now I feel good, and I have energy, and I can begin to think about the long term.

Right now, pancreas transplants are usually done for people who are also receiving a kidney transplant. In other words, a pancreas is most often transplanted as part of a combination kidney/pancreas transplant. A few people, like Greg, who already have a transplanted kidney, are able to get a pancreas transplant by itself. So if you need a kidney transplant, or already have a transplanted kidney and would like to consider getting a pancreas transplant, you should talk with your transplant team about whether this could be a good choice for you.

In general, most transplant programs do not transplant a pancreas by itself into a person who has healthy kidneys. But this may change in the next several years. There is a lot of research going on concerning pancreas transplants and islet cell transplants. Furthermore, all of the insulin pump companies are working on creating ways to link up a continuous blood glucose meter to an insulin pump. Some of the companies are very close to developing a successful product, essentially an artificial pancreas. So even though today, most of us who have diabetes may not get the wonderful results Greg has had, we can realistically hope that in the near future, many more of us will be able to have truly normal blood sugar.

If you or a friend would like to remember the Diabetes Action Network of the National Federation of the Blind in your will, you can do so by employing the following language:

"I give, devise, and bequeath unto the Diabetes Action Network of the National Federation of the Blind, 1800 Johnson Street, Baltimore, Maryland 21230, a District of Columbia nonprofit corporation, the sum of $_____" (or "_______percent of my net estate" or "the following stocks and bonds:________") to be used for its worthy purposes on behalf of blind persons.

One of the perils of giving good advice is that one runs up against those ladling out really bad advice. Lately, this has been nowhere as evident as in the field of diet.

We are the fattest nation on earth, and the wonder of the world. Some time ago, I quoted immigrant writer Dinesh D'Souza's comment: "People want to move to a country where the poor are fat." But here, it's not just the poor. The fad diet purveyors are correct--something needs to be done.

Like carny-barkers hawking their snake-oil cure-alls, what they really want is to get rich selling you their exclusive, miraculous, lose-it-all-overnight-without-effort magic meal replacers. "Buy this one--and lose your flab." Right. It sounds so simple, so simplistic--because it is. Hucksters have always reeled in their suckers that way. Pushed to produce any scientific support for their statements, they'll smarmily tell you, "you are entitled to your opinion."

The pop fad diets marketed so brazenly on store shelves are based on deep misunderstandings (and misrepresentations) of human metabolism, of the nature of carbohydrates, and of the Glycemic Index. The faddists, without any scientific evidence or FDA clinicals to cite, claim there is a substantive difference between simple and complex carbohydrates (a position disproved and abandoned by the American Dietetic Association and the American Diabetes Association years ago), and that avoidance of "simple" carbs is critical to diet adherence. We know that all carbohydrates wind up in the same place--and the difference between simple and complex carbs is absorption time--a few hours. Diabetics who embrace these fad diets are imperiling their blood sugar management and their long-term health--in my opinion.

Same with the Glycemic Index (GI). GI numbers are simply a measure of velocity. How fast does a given food item get into the body and raise blood sugar? The higher its GI, the quicker your blood sugars will rise. Lower GI foods take a bit longer to get there--and won't "spike" your sugars as fast, but beyond that, there is no distinction; they're still going to count. To say they have less dietary impact is a fairy tale. No diabetes-trained dietitian (RD CDE) would spoon-feed you such nonsense--in my opinion.

The faddists correctly observe that many "light," or "sugar-free" foods have more carbs than the "normal" versions--but they fail to look at the "bottom line": calories. Many "light" foods may well have more carbs than their conventional equivalents--but they have less total calories, and fat has calories too, a lot of them. Failure to count calories, to view carbs without viewing the impact of the total food consumed, is more than a bit silly, in my opinion.

The human body needs protein, needs carbohydrate, and needs fat, in measured amounts, to maintain health. An oversupply of one component is just as dangerous as an undersupply of another. The average American diet includes far more protein than the body can process (we need the equivalent of three ounces of meat per day), and more protein just puts a load on the kidneys. Many diabetics and others have kidney damage, and for some of these individuals, a LOW-protein diet is routinely recommended--in my opinion.

Most Hollywood fad diets have their roots in the desire to lose lots of weight without effort. People want to believe there is a magic pill, or some secret way to do this, that their doctors have been holding out on them for the last 3000 years. They don't want to work as hard to take it off as they did to put it on. "Ketotic diets," deliberately formulated to strip the body of nutrients and burn stored fats, work, short-term, on the morbidly obese, for whom the risk of being so overweight outweighs the real risk of such an extreme diet--but for those less overweight, or who need not a weight LOSS but a weight MAINTENANCE diet, use of these is akin to embracing anorexia--in my opinion.

The real experts, those properly trained and experienced in formulating a healthful, safe, effective, balanced diet based not on some soap-opera actress's paid endorsement but decades of clinical observation, are the Registered Dietitians (RD), and, for us, the RD CDEs, the dietitians who are also trained in diabetes, Certified Diabetes Educators. They have the proper background to design a diet appropriate for you. And that's my opinion.

It's February, as this column is being written; do you know where your New Year's resolution is? Did you even make a New Year's resolution? If so, how is that coming along? If you're like most people, you made a New Year's resolution; but by February you probably found yourself losing steam. Setting goals is fun, but achieving them is even better. Don't give up, as help is on the way. Even though you're reading this column in April, here are a few good books to help you keep your 2004 resolve to improve your health.

If exercise is your biggest hang-up, you can take a big step in the right direction with the American Diabetes Association's Small Steps, Big Rewards, Walking Your Way to Better Health. No matter what your fitness level, age or physical condition, you can improve your circulation, lower your blood sugar, burn fat and even lose weight--by walking. The easy-to-read format of this little walking book is full of helpful advice and tips including:

Regular exercise offers big rewards for anyone who has diabetes. It will help you lose weight, reduce stress, lower your blood sugar, improve circulation, boost your memory and re-energize your mind, not to mention the bigger picture--helping to prevent heart attack/strokes, lowering your cancer risk and diabetes-related complications.

Your bonus in the Small Steps, Big Rewards walking kit is the inclusion of a high-quality pedometer, with which you can count every step you take. Wear it for a few days, see how far you normally walk, and then gradually increase your daily step count--at your own pace! Turn every step you take into a do-your-mind-and-body-good walk--whether heading to the mailbox, a meeting, the garden or even the mall. Highly recommended, to jump-start or re-energize your 2004 exercise program.

Having professionally reviewed hundreds of books on diabetes for both online and print publications, I was happy to find one that was "just right" for all needs in The Everything Diabetes Book, (c)2004 by Adams Media. Authors Paula Ford-Martin and Ian Blumer, M.D effectively pair their collective writing and medical expertise to serve the needs of all readers, from the newly diagnosed, to parents and caregivers of those with all types and levels of diabetes.

I especially appreciated the FAQ easy-to-read format of the book, which allows the reader to access specific information on an as-needed basis. In The Everything Diabetes Book you'll find:

* 22 chapters covering treatment, diet, lifestyle issues, complications, coping and more

* Special chapters on diabetes in men, diabetes in women, and diabetes in childhood

* Three appendices with Internet resources, conversion charts, and preventive care

Diabetes is a family disease, and in the simplest terms, this is the single best resource I've reviewed for meeting the needs of anyone or everyone who must deal with the complex issues presented by a diagnosis of diabetes. I have a brother who was just diagnosed with adult-onset, type 2 diabetes, and if I could choose just ONE book as a road map to help him through the complexities of understanding the condition, The Everything Diabetes Book would be just what this doctor would order. Highly recommended! For more information on The Everything Diabetes Book, the authors, contact information, or quantity discounts for bulk purchases, visit the book website at www.everythingdiabetes.com

Caring for your emotions is just as important as caring for your physical health. According to a just-released study, researchers state that depressive symptoms appear to be predictive of the development of type 2 diabetes (Diabetes Care 2004;27:429-435). Researchers found that more than 11,000 individuals, subjects in the highest quartile of depressive symptoms, had a 63% increased risk of developing type 2 diabetes compared to those in the lowest quartile (relative hazard 1.63). These new findings further support the importance of taking care of the emotional side of living with your diabetes after the diagnosis. Diabetes, Caring for Your Emotions as Well as Your Health, Revised Edition, by Jerry Edelwich and Archie Brodsky, is a great tool and reference guide to help you get started.

Authors Edelwich and Brodsky are right on point with helping the reader to understand how emotions can strongly influence diabetes control, and they cover all the vital information about the emotional side of living with diabetes that doctors just don't have time to discuss. From adjusting to the initial diagnosis, to making decisions about diet, exercise, types of medication, and new technologies, the authors take you through the twists and turns of facing the uncertainty surrounding complications, and how diabetes can affect your marriage and family, sex and career choices. Especially helpful are the "further reading" resources at the end of each chapter. One only has to glance through the table of contents to realize how extensively the authors have covered just about every area of life touched by a diagnosis of diabetes. Great anecdotal examples in the form of "true life" stories bring Diabetes, Caring for Your Emotions as Well as Your Health (c)1998, home to roost. Good resource for your bookshelf and recommended reading for physicians and health care practitioners who care for patients with diabetes.

No column would be complete without at least one new book from my favorite part of the shelf, and most of you who read this column regularly know that means a cookbook review. I firmly believe good nutrition is the medicine of the future, and it's really important for what you put in your mouth to taste good, too. If you like to cook it easy, and get it to the table fast, you'll just love Diabetes Snacks, Treats & Easy Eats, by Barbara Grunes with Linda R.Yoakam, RD, MS.

This brand new, hot-off-the-press 2004 release features 130 recipes you'll make again and again. Barbara Grunes, author of over 40 cookbooks (many of which are in my personal collection), has clearly written another winner. Grunes is no stranger to diabetes, as her husband, Jerry, has type 1 diabetes. She stresses the importance of having some "safe and ready" snacks available when he comes home from work, tired, hungry and looking forward to dinner.

Diabetes Snacks, Treats & Easy Eats focuses on the consumption of good, wholesome foods, and not just "making junk food less junky." All the dishes in this cookbook are really easy to make and most take less than 20 minutes to prepare. Cooking level is easy to moderate and all recipes, with clear identification of those low in fat, carbohydrates and sodium, are created especially for people with diabetes. And, if you have regular chocolate cravings, you can sample two of the desserts, Chocolate Yogurt Pie and Jenny's Brownies, in the "Chocolate Obsession" feature in the February issue of the Cinnamon Hearts website at www.cinnamonhearts.com

You'll love this quick and easy cookbook, complete with nutritional analyses and exchanges; another great find published by Surrey Books, Inc. Very highly recommended.

That's it for the spring issue, folks. If you're still buried under a layer of snow when this reaches you in April, come and enjoy the daffodils in "The Daffodil Principal" (March 2004) on the Cinnamon Hearts website. In the meantime, make your own sunshine wherever you're planted.

Marilyn Helton, diabetic since 1993, is the publisher of Cinnamon Hearts: The Art of Living a Winning Diabetic Lifestyle, a positive-power E-zine for diabetics and their families. Visit the Cinnamon Hearts website: www.cinnamonhearts.com.

I discovered Voice of the Diabetic this summer when my mother gave me a copy she had picked up at her doctor's office here in Dallas. This is an excellent publication and well worth telling others about, so I am now giving these to as many people (diabetics) as I possibly can (approximately 150 people).

Please send me a complete NFB literature catalog and also please send in large print, your book Diabetes Action Network Articles. Reading and research about diabetes has become my favorite hobby. Sometimes I even teach a diabetic class. My goal is to stay healthy myself, so I can help others. May God bless you all as you all help others! Thanks!

I got a copy of your paper and I really love reading the articles in your paper. I like to have anything on being a diabetic: the meals you should eat, and a paper to tell how high your sugar intake should be and any information would help me.

When I read your letter and the "non-response" from MiniMed, combined with the functionality of the Paradigm pump, it is clear that MiniMed does not consider visually impaired diabetics a "high priority." This is unfortunate, since I have found the pump to be very helpful in treating my diabetes. The new generation of pumps is not designed for anyone with even the slightest visual dysfunction. I thought you would benefit from my experience and comments--I enjoy the Voice tremendously and always pass it on to fellow diabetics. I find your publication most informative especially for someone like me who has had the disease for a long time and is far beyond the basics of diabetic problems and treatment.

You seem to have so much more information, in a more understandable presentation than I have found elsewhere. I am disabled and my husband is also, and we try to keep up with anything that will help us in our fight with diabetes.

This is a wonderful little informative magazine. My daughter has many health problems along with diabetes. So please send this magazine to her.

I enclosed my subscription form for your quarterly magazine published by the Diabetes Action Network of the National Federation of the Blind, Voice of the Diabetic.

I presently live in a subsidized 12-story high-rise, with many blind tenants disabled by diabetes, high blood pressure (2), uncertain how they lost their vision.

I will continue to send monetary aspects when I can, because I found your magazine very enlightening and was amazed at how thorough, comprehensive, and informative that even a lay person could comprehend.

Thank you so much for the diabetes articles and compiled booklet drawn from the previous copies of Voice of the Diabetic; these are very informative. I also received some copies of the Voice of the Diabetic, Volume 18, #3. You're doing great work along with your staff at the Materials Center. Please keep up the spirit, well done!

"Low Vision" refers to persons who have sub-normal vision as a consequence of congenital or acquired eye disease, as well as to the eye care and rehabilitative specialty that helps those individuals maximize whatever remaining vision potential they may have. The causes of low vision as a clinical entity are varied and numerous; the leading causes in the relatively affluent Western World are age-related macular degeneration, followed by glaucoma, followed by diabetic retinopathy.

Diabetic retinopathy is the leading cause of new blindness in Americans under age 74, with 12,000 to 24,000 cases of new blindness annually. If all manifestations of diabetic eye disease are considered (retinopathy, cataract, glaucoma, ischemic optic neuropathy and retinal vascular occlusion in particular), diabetes accounts for perhaps three times this number. (It is important to note, however, that these statistics pale in comparison to the worldwide incidence of preventable and/or curable blindness due to conditions like Vitamin A deficiency, River Blindness, cataracts, and trachoma.)

The clinical practice of low vision is based upon the twin strategies of magnification and contrast enhancement, but also depends upon cognitive, behavioral and emotive integration with the activities of daily living. Magnification can be achieved three different ways: relative distance magnification entails moving the patient closer to objects of visual interest (for example, by moving closer to a street sign, or holding reading material closer to the eyes with the assistance of lenses having the appropriate focal length for a closer "working distance"); optical magnification works by using telescopes (for distance viewing), magnifying lenses, microscopes or video magnifiers (for near vision activities like reading or drawing insulin into a syringe) to achieve magnification without moving physically closer to objects; physical magnification depends upon enlarging materials for use (e.g., large-print books, numbers on a telephone touch pad or clock). A combination of magnification strategies is often employed to achieve the necessary amount of total magnification. An example may be useful.

A patient with 20/400 best corrected vision due to diabetic retinopathy (the big E on the Snellen acuity chart) must, by definition, receive 10x magnification to achieve a functional 20/40 level of acuity, for example, to see a road sign (the Snellen denominator, 400, divided by the desired Snellen denominator, 40, equals 10). To accomplish this, she can: stand 10 times closer to the sign than somebody with 20/40 acuity; use a low vision telescope with 10x magnification; or stand twice as close to the sign in tandem with using a 5x telescope (2x relative distance magnification times 5x optical magnification equals 10x total magnification). Similar calculations and combinations are used for near low vision devices. From a practical standpoint, patients typically respond best to low vision magnification techniques when their best corrected visual acuities are 20/800 or better, since higher degrees of magnification would increasingly diminish the user's field of view.

Contrast enhancement improves visual acuity independently of magnification, by making objects "stand out" more. Much of our visual world has poor contrast (e.g., gray colored cars on gray pavement on a cloudy day), and persons with low vision typically have tremendous deficits in contrast sensitivity as well (see Figure 1 for an example of low and high contrast objects).

Contrast can be enhanced by improved lighting (especially closer, incandescent lighting), improved print quality, employing stark color differences between commonly used items and their surrounding/background environment, and use of colored filters.

< Here, in text, was a simple figure demonstrating the affect of different backgrounds upon "apparent" contrast>

A host of adaptive low vision products are available, including large print and talking materials. For persons with diabetes, both large-display and talking glucose monitors are available, as are insulin pumps with audible bolus selection, syringe magnifiers, and tactile syringe-filling aids. Patients typically function best with a variety of low vision aids, and with a course of professional evaluation, demonstration and follow-up by low vision specialists, including eye care providers, mobility specialists, rehabilitation psychologists and occupational counselors when indicated. There is always something that can be done to help visually impaired or blind persons--knowledge is power, and getting help is a matter of knowing where to look. (For a list of low vision resources, the reader may wish to consult my web site at www.diabeticeyes.com, or Chapter 15 of my book on diabetic eye disease.)

As might be anticipated, clinical depression is common among patients with vision loss, and diabetes itself compounds this tendency. Far more insidious are the stereotypes and prejudices of sighted persons, including health care providers, about the abilities, cognitive and emotional status of persons with reduced or no eyesight. An address before the National Federation of the Blind, by its president, Marc Maurer, makes a compelling case against sight discrimination (a lengthy and eloquent speech previously published verbatim in the Voice); we would all do well to remember that common noun descriptors such as "blind," "handicapped," "disabled" and even "diabetic" are, in some sense, existentially diminutive, and that persons are not and should not be treated merely by such labels mainstream culture gives them via language. Not only is knowledge power, but language is, as well. (Perhaps this discussion may give all of us some sense of what it might mean to be "blind" in a predominantly sighted society, or "black" in a predominantly Anglo society.)

Unfortunately, many people have suffered eye complications from diabetes, including severe loss of vision. More tragically, many more will probably do so, in spite of all we know about prevention and effective treatment. With the aging of our population, the prevalence of serious visual impairment is expected to rise dramatically, and virtually all of us have family members or friends who are or will be affected. Hopefully, through effective patient education and the efforts of dedicated health care professionals and researchers, far fewer will suffer vision loss and other disability. Hopefully, cures for diseases like diabetes, and the eye complications it causes are just around the bend.

Until that time, though, it is critical that patients with vision loss be aware of what can be done, right now, to help them cope with that loss. For those who haven't experienced vision loss from diabetes (or any etiology for that matter), some familiarity with low vision services might best be viewed as an "insurance policy" of sorts; hopefully, this information will never be needed, but it's nice to have "just in case."

The Roche Diagnostics AccuChek VoiceMate is the best talking blood glucose monitor available today. Its features make the VoiceMate the only monitor fully usable by a blind diabetic, without any sighted assistance at all. It represents a tremendous advance on its ancestors.

However, it is far from perfect. The passage of time has revealed features that need to be improved. Because it is our responsibility, those of us who use the VoiceMate, to bring its flaws to the manufacturer's attention, I have been in fairly regular contact with Roche, and I hoped to see improvement.

In June of 2003, I wrote a letter (published in Voice, Vol. 18, No 4, Fall 2003 Edition) to Dr. Martin Madaus, President of Roche Diagnostics. On July 28, his Vice President and General Manager, William Lister, responded.

Mr. Lister was cordial, but noncommittal. He acknowledged the VoiceMate's "not enough blood" problem. He stated "a next generation VoiceMate was being planned," but continued: "please understand we cannot commit to specific dates the new system will be on the market, or specific features that might be included." He then directed me to contact Ms. Deb Edgecombe, who he called: "our AccuChek VoiceMate system representative."

I was disappointed by his lack of specifics. Last October 1, I sent to Deb Edgecombe, whose official title is: "Associate Product Manager for the AccuChek Advantage" (which includes the AccuChek VoiceMate), my list of observations about the VoiceMate, and suggestions about what might be done to improve the meter and its talk box. I again pointed out how it sometimes failed to distinguish between "not enough blood on the test strip" and a low blood sugar reading. I pointed out how the machine's audio prompt ("beep") was too soft for some users, and I gave her some observations about the audiotape instruction cassette. Then I waited.

On October 5, Ms. Edgecombe responded, stating: "Thank you so much for your feedback, very valuable! I'll get back to you as we start to address these issues and report our progress to you. Also, I see you have some questions that I need to research, I'll get back to you ASAP."

On February 27, 2004, I wrote: "Dear Deb, this concerns your response to me of October 5, 2003, in which you addressed questions I'd sent you (October 1) about the AccuChek VoiceMate talking glucose monitor. You said you would 'get back to me ASAP.' As of today, February 27, 2004, I have heard nothing from you. It has been almost 5 months. I would have thought Roche Diagnostics, and you, would have been able to come up with some answers by now?"

And on March 1, I had a response. After months of waiting, one would have hoped for some substantive answers, but no. The "not enough blood" problem, that Roche had acknowledged some time before?

" This problem will not be addressed with the current system of the AccuChek VoiceMate." To me, this suggests Roche Diagnostics might not plan to ever address this problem.

When I asked if the older "Advantage" test strips, still available at Wal-Mart, would work in the VoiceMate (as they do in the Advantage), she responded: "I'm checking."

When I asked about hooking the VoiceMate to a home computer, and how many blind users would like to do this--but need instructions to do so, on the audiocassette tape--she responded: "This is a great question! I'll find out more and let you know."

When I asked about using the control solution by allowing it to run over a finger and then placing the finger against the test strip, she responded: "I'm checking on this, and will let you know."

I asked her about the confusing differences between the meter and the instructions, in regard to the "low" range and the "high" range, and was told: "I'm checking on this; I'll let you know."

I was surprised, since she'd had my questions so long, that after almost five months she was just "checking." Perhaps Roche has no interest in doing any more than just "checking?"

My comments about the instructional tape received more positive responses--though they were not of the "Yes, we will do this" variety. Ms. Edgecombe "plans to address" my suggestion to include instructions on the Softclix lancing device on the tape, says she WILL add meter battery information to the tape, and when I suggested she have the tape tone-indexed, she responded: "Great suggestion! I will implement if possible."

On March 5, I telephoned Roche Diagnostics Customer service, and spoke to a specialist, who said the Advantage meter (an integral part of the VoiceMate) will display an "error message" if there is not enough blood on the strip. I note as this cue is already present, it should be extremely easy to alter the voice box's chip so as to read it. I remember Roche has been aware of this problem in the VoiceMate for some time, apparently has done nothing, and seems uninterested in resolving the problem. I hope I'm wrong.

My impression of this exchange was that they'd stuck my October letter in a file someplace, and only pulled it out when someone realized I might publish it. It doesn't show a great deal of consideration for the concerns of blind diabetics.

(Marc Maurer, President of the National Federation of the Blind, delivered the following convention banquet address on July 3, 2003, at the 2003 national convention of the National Federation of the Blind, in Louisville, Kentucky. This article appeared in the Braille Monitor, August/September 2003 edition, published by the National Federation of the Blind. Copies of this address, and others, are available, without charge, from the National Center for the Blind, in large print, Braille, audiocassette, and on the World Wide Web. Contact: NFB National Center for the Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314; website: www.nfb.org)

The velvet black of the night sky bedight with jeweled stars beckoned;
The ever-changing rivulets among the waves along the shore reflected the dancing flashes of sunlight;
The enthusiastic restless breakers summoned the shore-bound to come a-roving.
The dappled shadows almost concealed the water nymph, who winked at the sojourner across the rippling rapids.
The captains came marching to open new countries, explore unknown frontiers, establish trade routes.
The blind man quietly waited;
He did not see the flashing sun, the wink of the water nymph, the beckoning stars.
He waited.
Others told him, when they were not too busy, of the far frontiers; of mighty commerce; of the beauty of sun, sky, and stars.
He waited.
And when the waiting was ended, he was old.

Such is one summation of blindness, which even today constitutes the thinking of many members of the general public, some people in the field of work with the blind, and a few blind people themselves. This summation has no harsh criticism of the blind; no suggestion of cruelty toward us; no obnoxious restriction on our behavior, our activity, or our livelihood. Nevertheless, the depiction is completely erroneous and totally false. In one sense it is more devastating than harshness or cruelty because it contains an implied gentleness toward the blind, who are permitted to wait, and because within it is an assumption that we are irrelevant--that we have nothing to contribute--that we are without hope, without spirit, without an irrepressible internal driving force. Exploration, romance, and adventure are for somebody else--not for the blind. Beauty may be observed in the heavens, the sea, or a woodland glade, but none of this is for us. We are relegated to a closed set of experiences which are determined by somebody else. The exhortation, though kindly meant, is as restrictive as an iron band. It is to wait; always to wait.

In 1652, John Milton wrote a poem about his blindness. The most famous line of this poem, which has ever since been regarded as reflecting a proper humility, is, "They also serve who only stand and wait." Of course this line was written 350 years ago; matters must have changed since then. My own experience demonstrates that, despite the advances we have made (and we have made many of them), blind people are often asked to wait. Much of the time we are told to wait for somebody else to get us something, for somebody else to show us where we are to go, for somebody else to invite us to participate in activities in our communities. We are encouraged to believe that the waiting is valuable--if not a high ideal.

In 1863, Henry Wadsworth Longfellow wrote, "All things come round to him who will but wait." However, Longfellow did not have the extensive experience that we possess. If waiting is the coin that must be paid for all things that can come round, the blind should have such blessings in abundance.

We must have understanding for the goodwill that we encounter, and we must exercise politeness because this is the attitude that promotes growth in civilized society. But we must not forfeit our right to self-determination. No amount of politeness requires the blind to wait for somebody else to make our decisions for us. If we were to take this course, the waiting might continue indefinitely. In 1825, Lord Macaulay warned of the danger inherent in this method of thought. He said:

" Many politicians of our time are in the habit of laying it down as a self-evident proposition that no people ought to be free till they are fit to use their freedom. The maxim is worthy of the fool in the old story, who resolved not to go into the water till he had learnt to swim. If men are to wait for liberty till they become wise and good in slavery, they may indeed wait forever."

Thus spoke Lord Macaulay, and what he said of the generality of individuals is equally applicable to the blind. There may be some who will call us precipitant. Be it so. Some will think us rash. This cannot be helped. A few will proclaim us to be nothing short of radical or militant. Let them call names if they like; our lives are on the line, and we will live them to the fullest. As the spirit of our Federation has made abundantly clear, we will seize the liberty that is our right; we will not defer; we will not delay; we are no longer prepared to wait.

The notion that blind people should wait suggests that we do not have the same capacity as others and that somebody else should supervise our actions. It implies that we are inferior to the sighted.

If blindness means a fundamental diminution of ability, the blind should be content to receive support and assistance, and they should recognize that waiting is part of the process. If, however, the blind possess all of the capacity of the general public except the ability to use vision, it is fair to expect as much from the blind as from the sighted. It is also necessary to demand of society that blind people be accepted on terms of equality.

To illustrate certain factors that have an impact on the lives of the blind, consider a fanciful analogy. If all mature human beings who are taller than six feet, two inches in height were regarded as less capable than those of shorter stature, there would be an immediate and dramatic classification along the lines of physical size. Short people would be favored, and tall people would be shunned. Growth inhibitors would be sold to prevent the development of excessive height. High heels would no longer be the fashion.

Benevolent societies would be initiated to offer counseling and comfort to the unfortunate tall. Special places would be set aside where these folk could interact with one another out of the sight of their superiors, the short. Homes for the tall would be established in which the tall could live without being constantly reminded of their deformity. Fundraising drives would be undertaken to reduce the disadvantages of financial want for the lanky and to provide adequate funding to pay the administrators of institutions for the tall. Probably, in the course of time, specialized laws would be established to prevent unreasonable exploitation of the tall. Certain trades of a simple and repetitive nature with a suitably modest financial return (the tall trades) would offer the tall meaningful occupations. Orientation classes would be constructed to teach the tall techniques for managing their awkward and ungainly frames.

Eventually an entire structure of agencies to provide service to the tall would be established, and an association of individuals involved in the field of rehabilitation for the tall would come into being. Most of the members of this association would be normal -- not drawn from the ranks of the tall. However, occasionally an almost normal person, a member of the tall with a small enough stature to pass for normal, would be allowed to join. This would demonstrate appropriate concern for including the views of the tall. But, of course, the majority of the members of the association would be short and would possess high-powered degrees from accredited universities with programs established to train the professionals in the proper methods for providing instruction to the tall. These charitably inclined instructors of the tall would interpret the needs of their clients to the public and would minister to the wants of the disadvantaged minority.

The instructors would also serve on the President's Committee for the Employment of the Tall and other entities established for the benefit of the group. After several decades of exploration and professional development with appropriate scholarly examination of the psychological impact of being tall in a society established by and operated for the short, there would be an adequate understanding of the specialized problems faced by the tall, and all that would remain for the professionals to accomplish would be the refinement of the tools and techniques of the profession.

Of course there would be a need to assure quality standards within the ranks of the professionals in service to the tall, and standard-setting bodies would be created. The tall would be rigidly excluded from consideration of such standards except now and then as a matter of tokenism. This would be done to ensure the high quality of programming for the tall. As administrators of programs for the tall would observe, to invite the tall to assist in determining standards for the programs that serve them would be equivalent to asking patients in the hospital to design medical procedures.

But suppose the tall examined their condition and disagreed with the classification assigned to them. Suppose they argued that the assumption of inferiority had been based on false premises--that the length of one's body is no determiner of mental capacity or of other characteristics that make a human being productive. They might come together in a national organization to protest the arbitrary determination of inability that had been imposed. They might petition the government for a change in status. They might conduct public campaigns to alter the way they were perceived by the members of the public at large. They might attempt to have laws adopted that guaranteed their right to live in the world on an equal basis with others. They might proclaim their determination to speak on their own behalf. They might insist on the fundamental equality of the tall. They might reject the assertion that the length of their bodies made them awkward and ungainly. They might decide to abandon the homes and retreats for the tall, asserting as they left them that they intended to be accepted within society, not isolated from it. They might declare with unmistakable vigor that they would decide for themselves what their lives would be. In the process of coming to this understanding, the tall would say to certain of the administrators of programs established to meet their needs, "You have offered what you believe is kindness to us, but your kindness has included condescension and the attempt to hold us in bondage. You have treated us like children, but we reject your comprehension of our ability, and we insist that we be accepted as your equals. Your assumptions are not ours. You have said you will interpret our lives for us, but this can no longer be done. If you will work with us, we will welcome you in partnership. But you will no longer dominate our existence because we will not permit it."

From such a declaration conflict would probably erupt. Administrators of programs for the tall (or, at least some of them) would regard the obstreperous malcontents as ungrateful and would tell the members of the general public these upstarts were seeking to grab power--were attempting to dictate to agency administrators. Undaunted by these attacks, the members of the organized tall movement would build their own programs for training the tall and would find adherents among officials in the ranks of those in work for the tall. After a period of confrontation, greater harmony and cooperation than had previously existed would emerge in the field of work for the tall.

With growing cooperation and increasing harmony, the tall and administrators of programs for the tall (an increasing number of them drawn from the ranks of the tall themselves) would begin to wonder why there had ever been any conflict.

Is this an apt analogy? Some will deny it. How can the physical height of a human being reasonably be compared to blindness? Height is no barrier to employment or social acceptance, they will say. However, consider no less an authority than the military of the United States. A height requirement has sometimes been imposed on applicants who seek to serve as fighter pilots. The planes were small, the story goes, and nobody taller than five feet six inches would be accepted.

The philosopher Francis Bacon has also added his weight of opinion. "Wise nature [he said] did never put her precious jewels into a garret four stories high; and therefore ... exceeding tall men had ever very empty heads." No social stigma? No impact on employment? Don't you believe it! At times the tall have been an oppressed minority.

But what of the blind? What have we done, and how have we fared since the time of the founding of our movement at Wilkes-Barre, Pennsylvania, in 1940? When the National Federation of the Blind came into existence, the task before us was monumental. Blind men and women were almost completely without jobs except in a few sheltered workshops and a small number of vending stands. Education existed for some at the school for the blind but rarely beyond. Participation in the broader activities of the community was almost unknown. Public aid to the blind programs had been established in a number of states, but these were often interpreted in the most restrictive way. Our founder, Dr. Jacobus tenBroek, himself was informed shortly after he graduated from high school that public assistance would not be available to him if he attempted to enroll at the University of California.

The Books for the Blind program had come into being in the Library of Congress in the early 1930s. State programs for the blind had been initiated in many places, but rehabilitation was largely rudimentary and often unavailable. Despite these dismal prospects, or more likely because of them, Dr. Jacobus tenBroek and a handful of others brought the Federation into being. It was an act of hope and faith, and it began a national movement that has for more than six decades been encouraging the blind to recognize their own capacity and to act upon this understanding. In one sense we who make up the organized blind movement are not what we were at the time of our founding. There are more of us; we have become better organized; we have gathered more resources; and we have more experience. In another sense the Federation has not changed for all of the decades of its expansion and growth. It is composed of the blind, and we have the same dreams, the same dedication, the same history, and the same purpose as those who have preceded us. Furthermore, we very often face the same dangers, and we are required to exhibit the same determination and the same courage.

In 1940, the cruelty to the blind that had been permitted in former times was no longer acceptable. Part of our heritage tells us that in Roman times blind infants were exposed on the hills to die. Later, blind women were sold into slavery, and in the medieval period, blind men were exhibited at country fairs dressed in donkeys' ears. They were made to fight each other for the amusement of the crowd. Blindman's buff is a vestige of the game. One person is blindfolded while others jostle, prod, and poke the blinded one, who is supposed to try to catch them. The "buff" is a slap on the rump, probably shortened from the word "buffet."

The cruelty that was once associated with blindness is brought to mind because, despite all the progress we have made, there are still those who would deny us our fundamental rights and who would assert their domination over us.

Dan W. Brock, who claims to be a medical bioethicist, has written an article titled, "Health Care Resource Prioritization and Discrimination against Persons with Disabilities," published as part of a book issued in the year 2000, with the title Americans with Disabilities: Exploring Implications of the Law for Individuals and Institutions. In his paper Brock says that, if medical resources are scarce, they should be used to enhance the lives of those who are most likely to have the best quality of life. Quality is defined by Brock. He assumes that any disabled person will necessarily suffer a life with less quality than the non-disabled. Hence, if there is one procedure to give, the able-bodied applicant should get it. Brock does not explain why the life of an able-bodied person contains more quality than the life of a disabled person. He assumes that because individuals seek to avoid disabilities, this is an objective measure of quality, which can be applied to all life.

Of course, other characteristics might be inserted in Brock's so-called objective analysis. For example, many people seek chocolate. Those who do believe the absence of chocolate is a disadvantage. The chocolate-deprived have a lower quality of life than the chocolate-fulfilled. According to Brock's so-called objective analysis, the chocolate-fulfilled (probably fatter than the chocolate-deprived) should receive scarce medical procedures because of their superior quality of life. I suspect Brock would quibble with this analysis, but it is based upon his own approach.

There is one term in Brock's writing which has a pseudo-scientific appearance. It is QALY, which stands for Quality Adjusted Life Year. Here, in part, is what Brock says:

Suppose two patients, one of whom is blind, but who are otherwise similar, each need a lifesaving organ transplant, and there is only one available organ. Should the disability and lower health-related quality of life of the blind patient, which will result in fewer QALYs produced if she receives the transplant, give her lower priority for the transplant? Many would say it should not, and so, presumably, does the ADA [Americans with Disabilities Act]. Since one individual would prefer an outcome where she survives in full health to one where she survives blind, we can grant that in this respect the former is a better outcome.

Brock assumes the possession of the capacity to see makes the seeing life qualitatively better than the one without sight. He claims that the lower quality of life of a blind person indicates that from an objective point of view health care benefits should be reserved for the sighted.

It is not surprising that Brock also believes the fetuses of babies who are likely to be born with disabilities should be aborted. In other words, kill the blind while they are in the womb. If you can't kill them before they're born, withhold treatment afterward. While you're at it, tell people this is being done in the name of ethics and fairness and impartiality and improving the quality of life. What a shameful display of presumption, arrogance, and ignorance.

Brock also tells us the disabled require specialized services, that the money for specialized services could have been spent on the able-bodied, and that the able-bodied have a better quality of life than the disabled. Therefore, to maximize quality of life, give the money to the able-bodied and eliminate programs for the disabled. If programs for the disabled are to be tolerated, the only justification for them (according to Brock) is the kindness and generosity of the public.

The assessment of diminished quality of life is made by Brock, who tells us he knows more about the quality of our lives than we do. The value of specialized training for the disabled is determined by Brock, who tells us he knows more about its effectiveness than we do. The claim of moral superiority is that of Brock, who asserts his right to decide what system will be used to justify our future and our very existence. After telling us we do not deserve it, Brock says he will permit us to work and travel and live as a matter of kindness.

Brock may think he can interpret our lives and specify our futures, but he is wrong! We the blind have something to say about what happens to us. We will meet him in the lecture halls, in the pages of scholarly journals, in the corridors of Congress, and (if necessary) we will meet him in the streets! We will do battle for ourselves and for those who come after us. Let anybody who doubts this determination come to our convention tonight. We will not let anybody belittle us, bamboozle us, or betray us. Brock is not the deciding factor; we, the organized blind of the United States, fill that role. If Brock recognizes the quality that is within us, we will permit him to have a voice in affairs affecting our lives. If he does not, he may turn his attention to any other field of endeavor for which his limited capabilities make him qualified. We demand the liberty that is our right. We will accept nothing less than full equality, and we will not defer; we will not delay; we are simply no longer prepared to wait.

Are blind people fatter than sighted people? Do we eat more than our sighted neighbors? Such speculation has inspired much debate. Blind people, it is argued, are more sedentary than others--after all, we are often told to wait. Sports are often for sighted people--baseball, basketball, football, and volleyball. Tastebuds (some people say) are enhanced in the blind because the brainpower which might have been used for seeing is assigned to other sensory organs. The enhanced sense of taste tempts the blind to eat. With these factors influencing the lives of the blind, are blind people fatter than sighted people?

An article appearing in the October 2002 issue of Prevention magazine provides the following: In a recent Swedish study, subjects ate 22 percent less food when they were blindfolded, but they felt just as full as usual (Obesity Research, Feb. 2002). So taking vision out of the picture may work in your weight loss favor.

Without the sense of sight [continues Prevention], you are forced to rely on internal signals of satisfaction from your stomach and brain. Most of us normally rely on external cues--an empty plate, the end of a TV show, or the bottom of the bag--to tell us when we're full.

That is what Prevention magazine said. The blindfolded get full faster than those who can see what they're eating -- 22 percent faster. Probably we also save money on groceries. Blindness, apparently, has hidden advantages. According to Prevention, because we're blind, we're also slim.

Another peculiar portrayal alleges that we who are blind have lost our sexuality. In an article entitled "Folklore of Blindness," by A. Wagner-Lampl and G.W. Oliver, which appeared in the May-June, 1994, issue of the Journal of Visual Impairment and Blindness, the writers tell us that castration and blindness are equivalent. They cite Sigmund Freud's analysis of the ancient Greek play Oedipus Rex as evidence.

The equation of blindness and castration [these authors tell us] is also shown in the Irish myth in which prisoners are given the choice between emasculation and being blinded. Many blind men and women who are in counseling report feeling generally impotent and castrated and find themselves being treated by others as though they were asexual.

So state these authors. As I think about what they have said, I wonder how many blind people they have met. I don't want to be personal about these things, but is this the way you feel? My observation tells me blind people are as bold, as charming, as intriguing, and as sexy as anybody else. Those who believe we have been emasculated have something to learn. We will handle such matters with the discretion they demand, but we will handle them, and we will take second place to nobody. We have within us excitement, romance, and the capacity for love, and we will not permit these virtues to be unrecognized. This, too, is part of what must and will be ours!

In 1987, as I came to our banquet table for the first time as president of the Federation, I reported to you about the Mary Bryant Home for Blind Men and Women in Springfield, Illinois. The administrator of the home, Frances Trees, had sent a letter to directors of rehabilitation agencies to try to drum up business for the home. Included with the letter was a packet of information describing the home and its services. A portion of the letter reads as follows:

As you are aware, there comes a time in the lives of many visually impaired persons when they are unable to live independently. Some younger persons return to their homes following their education from aschool for the visually impaired. In many cases these young men and women are returning to homes where both parents are employed outside the home and find themselves staying alone all day with nothing to do.

The Mary Bryant Home is a resource I wish you would consider when it comes to assisting individuals or families to deal with the issue of placement. Currently our residents range in age from 24 to 96 years of age.

The nature of the resource represented by the Mary Bryant Home is described in the material which accompanied the letter. Here is part of the description:

The home is arranged for convenience, on one level--no stairs. Hand rails are installed throughout the home. Our full- and part-time staff provide round-the-clock service to the residents, seeing to their health, safety, nutritional, recreational, and emotional needs. Leave of absence may be taken by residents for a short period of time, providing the person taking the resident out sign a release of responsibility for injuries, accidents, or illnesses which might occur during the time they are away from the Mary Bryant Home.

[I interrupt to wonder what would happen if the resident wanted to leave the Mary Bryant Home unaccompanied. What would happen if the resident did not have somebody available to sign a release of responsibility? Apparently this kind of independent action is not permitted. But back to the information from the home.]

Personal property, other than clothing, may be brought to the home only with the prior approval of the Administrator. Food is prohibited in the resident rooms. Beer, wine, and other intoxicating liquors: Only when approved by the resident's physician please, and all items of this nature are to be kept at the medicine room, not in resident's room. Incoming calls for residents may be received on the house phones, but it would cause less confusion and less interruption if these calls were to be made between the hours of 1:00 p.m. and 4:30 p.m.

As I said in 1987, there is much more that might be said about the Mary Bryant Home, but this is enough to make the point. For the blind, independence of action cannot be found at the Mary Bryant Home; for the blind there is no future. Decisions are made not by the blind but by the administrator.

Not long after our 1987 convention, I received a letter from the parents of twin blind women who were residents at the Mary Bryant Home. Here is part of it:

We have in our possession the Braille Monitor regarding an address delivered by Marc Maurer, President of the National Federation of the Blind, at a banquet of the annual convention in Phoenix, Arizona, July 2, 1987.

We are in agreement in this article that some blind people can and should achieve academically and to their greatest capabilities. However, when they are not able to do so, other arrangements must be made. Therefore, we as parents of twin blind daughters appreciate the fact there are homes available for such situations.

When we were faced with the fact that it was time that we should be making some kind of arrangements for our twins, who were 32 years old, and we might add, they realized a home was to be found for their particular needs, we were very fortunate and greatly impressed with the Mary Bryant Home.

One of our daughters chose to go live at the home very soon and has been there since May 1986. However, our other daughter did not make a decision until after spending a three-week period there while we were on vacation. It was then she chose to make the move in December 1986.

We, and our daughters, have a deep respect for the rules at this home, for they have their independence but also are well taken care of.

[I interrupt to ask what kind of independence do you believe can be found at the Mary Bryant Home? The parents leave us in no doubt. Here is what they say.]

It is our opinion this home certainly meets the requirements of our daughters' needs. There is freedom to attend church of their choice, join the choirs, participate in community affairs as well as many activities at the home.

In closing, it is our hope a retraction of the statement made against the Mary Bryant Home and Mrs. Frances Trees would be in order for the purpose it serves for those who desperately need help.

The letter from the parents of these blind women says there are blind people who desperately need help. I believe the need is desperate, but it is not what these parents believe it to be. When I checked a few weeks ago, these twin blind women were still at the Mary Bryant Home; still subject to the rules and requirements, arrangements and restrictions; still told when they can come, and when they can leave; still forced to have somebody else assume responsibility for them whenever they wish to be taken out of the home; still prohibited from having food or drink in their rooms; still expected to make their phone calls between 1:00 and 4:30 p.m. But of course the blind women can attend a church of their choice and can sing in the choir.

The twin blind women who became inmates of the Mary Bryant Home in 1986 have been waiting for an opportunity to gain independence for almost two decades. The tragedy of their lives speaks loudly to me because, during the same year that they entered the home, I was first elected president of the National Federation of the Blind. I have participated in the growth of our organization and the expansion of our activities during the years these women have waited. We have heard from their parents, and we have heard from the administrator of the home, but we have not heard from the twin sisters because they have been convinced others should speak and act on their behalf and that their role is to wait. In their case the waiting might continue forever.

The impact of such restrictions, no matter how kindly meant, can be devastating. Some years ago I received a letter from a former employee of a different home, which says, in part:

I don't know if you can help, but I don't know who to turn to. I know a woman who is blind and living in a group home. I have been told blindness is her only disability and that before living in the group home she led herself with a cane and could talk. Now she does not talk and is completely withdrawn. She has been in the group home for several years and has been allowed to slip farther and farther into her darkness. She has little stimulation and has been allowed to completely withdraw from the rest of the world.

I am not a relative, so I don't know how I can help her. I am just someone who used to work in the group home. I had tried to get the supervisors to take an interest in her specific needs and to find ways to stimulate her and to teach her. I can't keep from wondering how her life could be if she had the attention and training she has been without for so many years.

Such is the simple and heartfelt plea of one human being seeking assistance to regain hope for another. This plea emphasizes the urgent need for us to reject the demand we wait interminably for others to decide that there is a future for us. For this blind woman and for all others who have been stashed away in warehouses for the blind without stimulation, without independence, and without hope, we say this: we will give you the spirit of determination and the guts we have come to know so well in the National Federation of the Blind. There is something better to do with your lives and ours than to move to the home for the blind and wait for life to ebb away in idleness and despair. The lives we have as blind people are as important as any that exist, and we will live them. A life deferred is a life denied, and we cannot tolerate delay. As we experiment with liberty, we will make mistakes, but they will be our mistakes. We will learn from them, and with the increased knowledge we will surmount the challenges that come.

The poets tell us to wait and urge us to believe there is honor in the waiting. The bioethicists claim our lives are less important than those of others and that those of us who were blind before birth should have been aborted. Prevention magazine alleges our appetites change because of our inability to see food. The keepers of the homes for the blind prey upon our lives to keep themselves in business with restrictive rules, and they call their restrictions independence. Such assertions are part of the reality of our lives, but this reality is changing because it cannot withstand the force of our movement.

Furthermore, this part of the reality is only a small segment of the whole. The rest of the truth about blindness is upbeat, spirited, and vibrant because we are writing the poetry and creating the music for our own song of liberation. When we come together in our thousands in the organized blind movement, we learn from each other, inspire each other, support each other, and believe in each other.

Dr. tenBroek founded our movement. Before he ceased to lead the Federation, Dr. Kenneth Jernigan had come to be his student, his colleague, his beloved friend. Dr. Jernigan became our beloved leader, and he dreamed of a future for us beyond anything we could have imagined.

People come to visit the National Center for the Blind from all over the world; the phones ring; and the mail comes pouring in. Coordination of effort occurs with state affiliates, with local chapters, with special interest divisions, with our training centers, and with other programs we have initiated. The National Federation of the Blind Research and Training Institute is rising from the ground and taking shape. Programs to address the special needs of the blind come into being, and future programs are being planned. The number of hands that come to the task is increasing at a rapid rate, and innovation occurs at all levels within the movement.

Dr. Jernigan, the man who established the National Center for the Blind, who took so many of the phone calls, who wrote the articles and edited the books, who traveled from our Center to all parts of the world, and who inspired his colleagues with the beautiful cadence of his voice, comes no more. But the spirit that was his--that spirit which he shared with Dr. tenBroek--is as bright in our midst today as it has ever been, and our determination is as strong. The articles continue to be written; the books continue to be published; the programs continue to be planned; and the message continues to be delivered in our own country and in lands beyond our borders. The message is simple, straightforward, and noncomplex. It is this: We are the blind, and we carry the responsibility for building our own future.

Many come to the task weary and dispirited; they gain strength. Some feel discouragement; they gain faith. Some are overwhelmed and disheartened; they gain hope. When the challenges come, we will surmount them. When the doubters attempt to disparage our cause, we will persuade them. When our detractors tell us the price of freedom is too great to be paid by the blind, we will demonstrate we have the capacity to do whatever is required for our own independence. We will not falter or hesitate or diminish our effort. We take the path we are destined to travel with the spring of gladness in our step and the lilt of laughter in our hearts; and we will prevail. With our imagination, with our courage, with our dedication, and with our determined spirit, we must and will have liberty, and no force on earth can stop us or turn us back. We will not defer; we will not delay; we are no longer prepared to wait. The days ahead belong to us. Come, join me, and we will make it come true!

This story first appeared in the January 2004 Edition of the Braille Monitor, published by the National Federation of the Blind.

The 2004 convention of the National Federation of the Blind will take place in Atlanta, Georgia, June 29 through July 5 at the Marriott Marquis Hotel, 265 Peachtree Center Avenue, Atlanta, Georgia 30303. The overflow hotel is the Hilton Atlanta and Towers, just across Courtland from the Marriott Marquis. Room rates are singles, doubles, and twins $59 and triples and quads $65 a night, plus tax of 14 percent at present. The hotels are accepting reservations now. A $60-per-room deposit is required to make a reservation. Fifty percent will be refunded if notice of cancellation is given before June 1, 2004. The other 50 percent is not refundable. For reservations call the Marriott Marquis at (404) 521-0000 and the Hilton Atlanta and Towers at (404) 659-2000.

Rooms will be available on a first-come, first-served basis. Reservations may be made before June 1 2004, assuming rooms are still available. After that, the hotels will not hold their room blocks for our convention. So make your reservation now.

Both hotels are twelve miles north of the Atlanta-Hartsfield International Airport and are conveniently located off Interstate 85. Take Exit 96, International Boulevard, turn left onto International Boulevard, go to Peachtree Center Avenue, and turn right. The Marriott Marquis is on the right in the second block. To get to the Hilton, turn left onto International Boulevard, go to Piedmont Avenue, and turn right. The Hilton is on the left. Guest-room amenities in both hotels include cable television, coffee pot, iron and ironing board, hair dryer, and dataport.

Tuesday, June 29 Seminar Day
Wednesday, June 30 Registration Day
Thursday, July 1 Board Meeting and Division Day
Friday, July 2 Opening Session
Saturday, July 3 Tour Day
Sunday, July 4 Banquet Day
Monday, July 5 Business Session and Adjournment

Information about our Diabetes Action Network seminar will be found below. See you in Atlanta!

At the 2004 convention of the National Federation of the Blind, in Atlanta, Georgia, our Diabetes Action Network will have its seminar and business meeting, on Thursday, July 1, from 1 to 5 p.m.

Our keynote speaker will be Frank Vinicor, M.D., M.P.H., Director of the Division of Diabetes Translation, U.S. Centers for Disease Control. C.D.C. ophthalmologist Dr. Jinan Saadine will also present. There will be plenty of time for your questions. An AccuChek VoiceMate talking glucose monitor will be awarded as a door prize--winner must be present.

Our seminar is free and open to the public. Its room location will be posted in the Agenda (which is provided when you register for the convention).

During this year's annual convention of the National Federation of the Blind in Atlanta, Georgia (Tuesday, June 29, through Monday, July 5), dialysis will be available. Individuals requiring dialysis must have a transient patient packet and physician's statement filled out prior to treatment. Conventioneers must have their unit contact the desired location in the Atlanta area for instructions, well in advance. NOTE: The convention will take place at the Atlanta Marriott Marquis, 265 Peachtree Center Ave., in downtown Atlanta.

Individuals will be responsible for, and must pay out of pocket, prior to each treatment, the approximately $30 not covered by Medicare, plus any additional physician's fees, and any charges for other medications.

DIALYSIS CENTERS SHOULD SET UP TRANSIENT DIALYSIS LOCATIONS AT LEAST TWO MONTHS IN ADVANCE. THIS HELPS ASSURE A LOCATION FOR ANYONE WANTING TO DIALYZE. There are many centers in the Atlanta area, but that area is quite large, so early reservation is strongly recommended, to avoid long taxi rides! Remember, this is a major holiday weekend, and folks will be busy.

* Atlanta Dialysis, 448 Ralph McGill Blvd. NE, Atlanta, GA 30308; local telephone: (404) 872-5311; to schedule, call Geneva, telephone: (404) 761-0819. Approx. 5 minutes by taxi from hotel.

* Dialysis Clinic, Inc. -- West Peachtree, 820 West Peachtree Street NW, Atlanta, GA 30308; telephone: (404) 888-4520.

* Midtown Dialysis Center, 121 Linden Ave., Atlanta, GA 30308; local telephone: (404) 817-9700; to schedule, telephone: 1-800-400-8331.

* Gambro Healthcare, 699 Ponce De Leon Ave. NE, Suite 19, Atlanta, GA 30308; telephone: (404) 872-7211. Open MWF only.

PLEASE REMEMBER TO SCHEDULE DIALYSIS TREATMENTS EARLY, TO ENSURE SPACE. If scheduling assistance is needed, have your dialysis unit's social worker contact me: Diabetes Action Network Board Member Ed Bryant; telephone: (573) 875-8911. See you in Atlanta!

Before any new medication or medical procedure can be approved for use, it must go through extensive testing for efficacy, safety, and reliability. Some of this is done in the laboratory, some upon animals, and finally, there will be human volunteers.

Why should you wish to volunteer? These "clinical trials" typically provide free exams, "cutting edge" care, and the chance to be the first to receive new medications pertinent to your condition, without cost. And, sometimes you'll be paid, as well. Plus, you'll have the satisfaction of knowing you personally contributed to the improvement of medical care for everyone.

How do you find out about clinical trials: Where they are, who they're looking for, and when; whether or not you'd be eligible? There are two websites: www.centerwatch.com, and www.clinicaltrials.gov. We've reviewed CenterWatch before.

ClinicalTrials.gov is a service of the National Institutes of Health. Although it is nominally for doctors, to help them find trials and studies for their patients, and only a doctor can sign you up, there's nothing that says you can't find a pertinent study, read about it, and take the information to your doctor.

ClinicalTrials.gov is that rarity, a government-sponsored site that's simple, straightforward, and easy to use. Choose the condition you want to search under, and go. When we looked, there were 80 diabetes studies seeking volunteers, broken down into categories such as diabetic: nephropathy, neuropathy, retinopathy, gestational diabetes, angiopathy (heart issues), and even three studies on diabetic feet.

When you click on a specific study, you get a description, a discussion of where it will take place, who they're looking for, how many participants they want, and what will be expected from those participants. Read carefully, and if you fit the profile, take the information to your doctor, who will contact the researchers. Don't contact the researchers yourself.

3 pounds peaches, peeled, seeded, and sliced
3 cups peach nectar
1/3 to 1/2 cup Nutrasweet Spoonful
1 pint fresh or frozen thawed raspberries
1/4 cup Nutrasweet Spoonful
pinch freshly grated nutmeg
mint sprigs

Process peaches, peach nectar, and 1/3- to 1/2-cup Nutrasweet Spoonful in blender or food processor, until smooth; refrigerate until chilled.

Process raspberries in blender or food processor until smooth; strain and discard seeds. Stir 1/4 cup NutraSweet Spoonful into raspberry puree; refrigerate until chilled. Spoon peach mixture into bowls, swirl raspberry mixture through soup, using 2 to 3 tablespoons raspberry puree for each bowl. Sprinkle lightly with nutmeg, garnish with mint.

Garnish (if desired) 1/2-cup fruit to include mixed berries (strawberries, raspberries, and blackberries).
Makes six servings. Per serving: 140 calories, 1gm protein, 36gm carbohydrate, trace total fat, 0gm saturated fat, 0mg cholesterol, 4gm fiber, 9mg sodium.
Exchanges: 2-1/2 fruit

1 medium pineapple, peeled, cored, cut into 1-inch chunks
3/4 cup unsweetened pineapple juice
2 tablespoons lime juice
2 cloves garlic, minced
1/2 to 1 teaspoon minced jalapeno pepper
2 tablespoons minced cilantro
1 tablespoon cornstarch
2 tablespoons cold water
2 to 3 tablespoons NutraSweet Spoonful
pinch salt
pinch pepper
six salmon, halibut, or haddock steaks or fillets (about 4 ounces each), grilled

Heat pineapple, pineapple juice, lime juice, garlic and jalapeno pepper to boiling in medium saucepan; reduce heat and simmer, uncovered, for five minutes. Stir in the cilantro; heat to boiling.

Mix cornstarch and cold water; stir into the boiling mixture. Boil, stirring constantly, until thickened. Remove from heat; cool two to three minutes.

Stir in NutraSweet Spoonful; season to taste with salt and pepper. Serve warm sauce over grilled fish. NOTE: This Pineapple-Cilantro Sauce is also excellent served with pork and lamb.

Makes six servings. Per serving: (With a 3-oz. fish fillet) 185 calories, 24 gm protein, 16gm carbohydrate, 3gm total fat, trace of saturated fat, 36mg cholesterol, 1gm fiber, 159mg sodium.

1/3 cup balsamic vinegar
1/4 tsp. each: salt and pepper
2 tablespoons minced onions or shallots
1 packet Sweet 'n Low
1 garlic clove, minced
2/3 cup reduced-sodium chicken broth
1 tsp. Dijon-style mustard
1 tablespoon olive oil
1 tsp. each, dried, crumbled: basil, chervil, marjoram, and thyme

In a small bowl, stir together the vinegar, onions or shallots, garlic, herbs, salt, pepper, and Sweet 'n Low. Cover and refrigerate 24 hours. Strain the mixture, reserving the onion, garlic, and herbs. Whisk the broth and mustard into the vinegar. Whisk in the oil. For a more flavorful dressing, stir 2 teaspoons reserved onion-herb mixture back into the dressing. Refrigerate, covered, up to one week. Serve over salads and vegetables.

Makes 16 (1-tablespoon) servings. Per serving: 15 calories, 1gm protein, 2gm carbohydrate, 1gm fat, 1gm saturated fat, 0mg cholesterol, 10mg sodium.

3 cups vanilla wafer crumbs
4 tablespoons margarine, melted
3 tablespoons NutraSweet Spoonful
1 envelope (1/4-ounce) unflavored gelatine
1 cup skim milk
2 packages (8 ounces each) reduced fat cream cheese, softened
1 package (3 ounces) reduced fat cream cheese, softened
2 tablespoons lemon juice
1 tablespoon grated lemon rind
2 teaspoons vanilla
1/3 to 1/2 cup NutraSweet Spoonful
1 pint blueberries
2 pints raspberries

Mix crumbs, margarine, and 3 tablespoons NutraSweet Spoonful in medium bowl, pat evenly on bottom of jelly roll pan, 15 x 10 inches.

Sprinkle gelatine over milk in small saucepan; let stand 2 to 3 minutes. Heat over medium low heat, stirring constantly, until gelatine is dissolved. Cool to room temperature.

Beat cream cheese until fluffy in a large bowl; gradually beat in milk mixture. Beat in lemon juice and rind, vanilla, and 1/3 to 1/2 cup NutraSweet Spoonful. Pour mixture over crust; refrigerate until set, three to four hours.

Before serving, decorate to look like a flag, using the blueberries for the stars, and the raspberries for the stripes.

Makes 16 servings. Per serving: 170 calories, 5gm protein, 15gm carbohydrate, 10gm total fat, 3gm saturated fat, 22mg cholesterol, 3gm fiber, 202mg sodium.

Make Healthy Substitutions! Making reduced-fat, low calorie food choices a regular part of your daily diet will soon become automatic. Here are some suggestions to get you started.

Hi, I'm so glad you chose to join me in the kitchen again, for more of my "common folk" healthy cooking tips. Once again, I'll again share a couple of recipe makeovers I did, so you can enjoy them, too!

Did you know you can make your own evaporated fat-free milk, a half cup at a time, in a matter of seconds, and for a fraction of the cost of "store bought"? You can! When the manufacturers make evaporated milk, they boil it down to half its original volume. Using that "milk math" as the starting point, all we have to do is combine 1/3-cup nonfat dry milk powder and 1/2-cup of water. Instantly, we have 1/2-cup of JO's Evaporated Fat-Free Milk. You can stir this into your morning coffee, or any recipe that calls for evaporated milk. Following this basic formula, for one cup, you would combine 2/3-cup of dry milk powder and 1 cup water. To make the equivalent of a commercial 12-fluid-ounce can, like those found in any grocery store, simply combine 1-cup dry milk powder and 1 and 1/2 cups water. Store in a covered container; this will keep nicely for at least a week in your fridge. Just be sure to use a good-quality brand of nonfat dry milk powder, and your evaporated milk will never taste like, well, dry milk powder!

An excellent white sauce for creaming veggies can be made simply by combining 1and 1/2 cups of JO's Evaporated Fat-Free Milk (the cooking tip I just shared with you) and 3-tablespoons flour, in a small covered jar. Shake well to combine. Pour the mixture into a medium-sized saucepan sprayed with butter-flavored cooking spray. Cook over medium heat, stirring constantly with a wire whisk, until mixture thickens and just starts to boil. Season as you desire.

Now -- if you want to make cheesy white sauce, stir in 1-cup of shredded, reduced-fat, Cheddar cheese, and continue cooking and stirring until the cheese melts. However, do NOT ever use fat-free Cheddar cheese and expect it to melt correctly -- and if you insist on using the fat-free, you are forbidden to tell anyone it was my recipe! Nothing turns families off from eating healthier quicker than fat-free cheeses!

Or maybe you're in the mood for Thai food and want to make a creamy peanut sauce. If so, then stir in 1/4-cup peanut butter (reduced-fat or regular, your choice) instead of the cheese and continue cooking and stirring until the peanut butter melts. Both creamy and chunky work well. Drizzle this over cooked carrots and celery and you won't have any problem getting your family to eat their veggies!

To help keep fresh fruits and veggies fresher longer, just give them a quick 'shower' with lemon juice. The easiest way to do this is to pour lemon juice into a kitchen spray bottle and store in the refrigerator. Then, every time you use fresh fruits or vegetables in a salad or dessert, simply give them a quick spray with your 'lemon spritzer.' You just might be amazed by how this little trick keeps your produce from turning brown so fast.

For a special treat that tastes anything like "diet," try placing 1 and 1/2 tablespoons of any flavor spreadable fruit spread in a microwaveable safe container and microwaving on HIGH for about 15 seconds. Spoon a half-cup sugar, and fat-free ice cream, into a dessert dish, and drizzle the hot fruit spread over top. Some combinations to get you started are apricot spread over chocolate ice cream; strawberry spread over strawberry ice cream; or blueberry spread over vanilla ice cream. Now, let your imagination be your guide and discover what combinations you can come up with!

Chunky salsa can be one of your best helpers in the kitchen! Here are a couple of suggestions you may not have thought of: (1) Heat one (15-ounce) can of green beans or carrots, then stir in 1/4-cup chunky salsa. Continue cooking on medium heat until mixture is heated through. It makes canned veggies sing notes they didn't even know they could! (2) To make a great dressing for a single-serving lettuce salad, combine 2 tablespoons fat-free ranch dressing with 2 tablespoons chunky salsa. It makes the dressing go twice as far, and adds twice as much flavor!

Back to those canned veggies--I never pay the higher price for the salt free versions. Instead, I buy national brands when they are on sale. When I'm ready to prepare one of my recipes that calls for canned veggies, I simply open the can, place them in a colander and rinse the veggies for a few seconds under warm water. I'm getting rid of most of the salt, and I'm saving money in the process!

MJ of WA sent me a meringue pie to revise. She wondered if there was anything I could do to make both the meringue and the custard filling more "diabetic friendly." Boy, could I! Not only are both my meringue and custard filling sugar-free, they are so easy to make, and look so impressive, I'm thinking you'll be making this pie often, especially when you want to show off your culinary skill. No one need know how simple this is to prepare -- that is, unless you want to tell them!

Hawaiian Fruit Meringue Pie
1 Pillsbury refrigerated unbaked 9-inch piecrust
1 (4-serving) package JELL-O sugar-free vanilla cook-and-serve pudding mix
2/3 cup Carnation Nonfat Dry Milk Powder
1 (8-ounce) can crushed pineapple, packed in fruit juice, undrained
1/2 cup water
1-1/2 teaspoons coconut extract
1 (11-ounce) can mandarin oranges, rinsed and well drained
6 egg whites
1/2 cup Splenda granular
2 tablespoons flaked coconut
Preheat oven to 415 degrees. Place piecrust in a 9-inch pie plate. Flute edges and prick bottom and sides with the tines of a fork. Bake for 9 to 11 minutes or until lightly browned. Place pie plate on a wire rack and allow to cool completely. Meanwhile, lower oven temperature to 350 degrees. In a medium saucepan, combine dry pudding mix, dry milk powder, undrained pineapple, and water. Cook over medium heat until mixture thickens and starts to boil, stirring often. Remove from heat. Stir in 1/2-teaspoon coconut extract and mandarin oranges. Place pan on a wire rack and allow to cool five minutes. Meanwhile, in a large bowl, beat egg whites with an electric mixer on HIGH until soft peaks form. Add remaining one-teaspoon coconut extract and Splenda. Continue beating with electric mixer until stiff peaks form. Spoon fruit filling into piecrust. Evenly spread meringue mixture over fruit filling, being sure to seal to edges of pie crust. Sprinkle coconut evenly over top. Bake for 15 minutes or until meringue starts to turn golden brown. Place pie plate on a wire rack and allow to cool for 15 minutes. Refrigerate for at least two hours. Cut into eight servings.
HINTS: (1) Egg whites beat best at room temperature. (2) Meringue pies cut easily if you dip a sharp knife in warm water before slicing.
Serves eight--Each serving equals: 187 Calories, 7gm Fat, 5gm Protein, 26gm Carbohydrate, 233mg Sodium, 1gm Fiber.

BH of NE sent a chicken recipe that needed a Healthy Exchanges makeover. The original version called for many more ingredients and involved much more preparation time. Once I was finished with this, I think I could have won any food election in the country--with my promise of (healthy and tasty) chicken in every pot!

Company Chicken Stroganoff Over Rice
1-1/2 cups diced cooked chicken breast
1-1/2 cups frozen cut green beans, thawed
1/2 cup finely chopped onion
1/2 cup Kraft Fat-Free Ranch Dressing
1/4 cup Land O Lakes no-fat sour cream
1 (2.5-ounce) jar sliced mushrooms, undrained
2 cups hot cooked rice
2 tablespoons chopped fresh parsley
In a large skillet sprayed with butter-flavored cooking spray, sauté chicken, green beans and onion for 6 to 8 minutes or until vegetables are just tender. Add ranch dressing, sour cream and undrained mushrooms. Mix well to combine. Lower heat and simmer for five minutes, or until mixture is heated through, stirring often. For each serving, place 1/2-cup rice on a plate, spoon about 1/2-cup chicken mixture over top, and garnish with 1/2-tablespoon parsley.
HINTS: (1) If you don't have leftovers, purchase a chunk of cooked chicken breast from your local deli, and dice it when you get home. (2) One and one third cup uncooked instant rice usually cooks to about 2 cups. (3) Thaw green beans by placing in a colander and rinsing under hot water for one minute.
Serves four--Each serving equals: 246 Calories, 2gm Fat, 21gm Protein, 36gm Carbohydrate, 450mg Sodium, 3gm Fiber.

I hope you enjoyed our time together in the kitchen. Remember, if you'd like me to revise one of your family favorites so it's healthier, send your request to: JoAnna Lund, c/o Voice of the Diabetic, 1412 I-70 Drive SW, Suite C, Columbia, MO 65203. Also, be sure to visit my website: www.healthyexchanges.com for more "common folk" healthy recipes to try. See you next time!

Last issue, Voice, Vol. 19, No. 1, Winter 2004, we had a note about the SugarTrac non-invasive blood glucose monitor, and what all hoped was its pending FDA approval. But the government never moves quite that fast. Here's what we know:

On March 10, LifeTrac, the corporation that developed the SugarTrac meter, had its meeting with government regulators. Neither passing nor failing the device, the regulators ordered several more tests. Company representatives expect the SugarTrac to pass, and hope it will be soon.

Voice of the Diabetic is in regular contact with LifeTrac, and will keep you posted on developments.

Inclusion of materials in this publication is for information only and does not imply endorsement by the Diabetes Action Network of the NFB.

Animas, maker of the R1000 insulin pump, has a new product. The IR-1200 insulin pump has received FDA approval, and should be on the shelves shortly. It has several new features, including the largest, sharpest display screen yet, and the facility to offer basal increments of .25 per hour, which will be good for children.

Deltec is reported to be developing a new pump called the Cozmonitor, which will partner with a small Therasense blood glucose monitor. Where the Minimed Paradigm 512 and larger-capacity 712 use a radio frequency link, the Cozmonitor's meter will snap directly onto the pump, reading results directly.

If you have special needs in an insulin pump, check closely with the different manufacturers (Animas, Dana, Deltec, Disetronic, Minimed, and Nipro); there are many new products out there, and what you need may be either on the way, or here already.

American Diabetic Supply, Inc., will ship your diabetes supplies to your door. They handle all insurance claims and provide free delivery. Folks with Medicare and/or private insurance (no HMOs) may receive supplies at no further cost. For information, contact: American Diabetic Supply, Inc., 400 S. Atlantic Ave., Suite 108, Ormond Beach, FL 32176; telephone: 1-800-453-9033, ext. 200; website: www.americandiabeticsupply.com

If you want to prepare healthy diabetic meals, but find most cookbooks just too complicated, you need Linda Coffee and Emily Cale's new and improved Diabetic 4 Ingredient Cookbook. There are almost twice as many recipes as before, 350, in all food categories, with complete nutritional and exchange information, each one using four ingredients. The book costs $19.95 (+$3.50 shipping), from: Coffee and Cale, P.O. Box 2121, Kerrville, TX 78029; telephone: 1-800-757-0838; www.fouringredientcookbook.com

Access Diabetic Supply promises free delivery, no paperwork, and free in-home training in the use of blood glucose testing devices. Your private insurance is welcome, and they accept Medicare, too. They offer free blood glucose monitors to folks who sign up. Check them out online: www.diabeticsupply.com or call: 1-800-713-7062.

According to data just released by the International Diabetes Federation (IDF), diabetes is the leading cause of blindness and visual impairment in developed countries, and, in most of them, the fourth leading cause of death. In 2003, the countries with the highest numbers of diabetics were: India (35.5 million), China (23.8 million), the USA (17 million), Russia (9.7 million), and Japan (6.7 million).

Health Care Products makes many over-the-counter medications and supplements for diabetics, including DiabetiSweet sugar substitute and DiabetiDerm skin cream (with L-Arginine) for the feet. Find these products in the diabetic section of Eckerd, Osco, Sav-on, Target, GNC, and other retailers. For information, contact: Health Care Products, 369 Bayview Avenue, Amityville NY 11701; telephone: 1-866-263-9003; website: http://www.diabeticproducts.com

The National Library Service for the Blind and Physically Handicapped (NLS), a division of the U.S. Library of Congress, both provides the free 4-track tape players for the legally blind and maintains an extensive library in alternative format. However, they are not the only source for recorded literature. Several other agencies and organizations assemble "magazines on tape." One of them is Choice Magazine Listening.

Choice Magazine Listening offers, free of charge, anthologies of current magazine articles, short stories, and poetry, on 4-track audiocassette, every other month. A service of the American Foundation for the Blind, these tapes have been coming for the last 41 years. For information, contact: Choice Magazine Listening, 85 Channel Drive, Port Washington, NY 11050; telephone: 1-888-724-6423; website: www.choicemagazinelistening.com

U.S. Medical Supply, from Miami, Florida, offers diabetes, impotence and respiratory supplies. There is no paperwork; they'll fill out the forms. Free training is available, and home delivery is free. Se Habla Espanol! Contact: United States Medical Supply, 8260 N.W. 27th St. #401, Miami, FL 3312; telephone: 1-800-787-6331; website: www.us-med.com

Many diabetics suffer from dry feet. It "goes with the territory." They hurt, they itch, they dry out and crack, and you need to do something about it. Sometimes neuropathy, nerve inflammation, in your feet can really drive you 'round the bend. But Steuart Laboratories offers help. Steuart's Foot Cream, with Melalenca Oil, is excellent for dry diabetic feet. Steuart's CNS Liposomes offers relief from neuropathy; also good for back, muscle, and joint pain. Prices (2 oz. Jar): $9.25 plus shipping for the Foot Cream; $19.80 for the CNS Liposomes. Contact: Steuart Laboratories, PO Box 297, Harmony, MN, 55939; telephone: 1-800-210-9665; website: www.steuartlabs.com

Freedom Scientific is a powerhouse adaptive equipment maker for the blind and visually impaired computer user. A union of Arkenstone, Blazie Engineering, and Henter-Joyce, Freedom Scientific offers screen magnifiers (including MAGic 9 software, which both magnifies up to 16x and speaks the words on the screen), talking attachments (voice synthesizers) for your computer, Braille printers and much more. Whether you need adaptive software or hardware, check them out: Freedom Scientific; telephone: 1-800-444-4443; website: www.freedomscientific.com

JoAnna Lund writes healthy cookbooks. They are simple, "common folks" recipes, and all contain both complete nutrient counts and diabetic exchanges. There are three titles: Fast, Cheap, and Easy; Grandma Jo’s Soup Kettle; and Fresh from the Hearth. Price is $10 each, or $25 for all three. There is no shipping charge. Contact: Healthy Exchanges, PO Box 80, DeWitt, IA 52742; telephone: 1-800-766-8961; website: www.healthyexchanges.com

The National Diabetes Education Program (NDEP) is a program jointly sponsored by the National Institutes of Health and the U.S. Centers for Disease Control.
The paper is titled: "Helping the Student With Diabetes Succeed: A Guide for School Personnel." It includes copier-ready action plans, a diabetes primer, and a review of school responsibilities under federal laws, all in a user-friendly format.

The NDEP has just made an important publication available on their website: www.ndep.nih.gov/resources/school.htm or by telephone: 1-800-438-5383.

Pharmacist Bryan Luna, Rph, offers diabetes supplies, including glucose monitors, online at www.diabeticsupplies.com This convenient website is simply laid out, and can be accessed in large print, too. For those without the Internet, telephone: 1-877-787-7543. They will file your Medicare, Medicaid, and private insurance forms. Free product catalog; 30-day, money-back guarantee.

The National Federation of the Blind maintains an extensive literature collection, with free materials on many subjects available in a variety of formats. The articles listed below make up one part of the collection, the "diabetes" category. They are available, in large print or on audiocassette, in a single volume titled: Diabetes Action Network Articles, or singly, in large print. They are: "Arthritis and Diabetes: A Common Association," "Blind Diabetics Can Draw Insulin Without Difficulty," "Can I Eat Sugar?," "Carbohydrate Counting and the Exchange List," "Cardiovascular Health: Bypass May Be Better for Diabetics," "Check Your Hemoglobin A1c I.Q." "Diabetic Eye Disease," "Diabetic Peripheral Neuropathy," "Diabetics, Don't Give Up on Braille," "The Emotional Side" "Finger-Sticking Techniques," "How I Went Blind ... And Then What," "Hypoglycemia--Low Blood Sugar" "Insulin Measurement Devices," "Insulin Types: A Review" "Keeping Your Feet," "Kidney Failure: Prevention, Dialysis, and Transplantation." "Male Sexual Dysfunction," "Many Blind Diabetics Successfully Use Insulin Pumps," "Oral Diabetes Medications Update," "Talking Blood Glucose Monitoring Systems," and "What Is Diabetes Mellitus?"
A new article, "Male and Female Sexual Dysfunction," is available singly, in large print, and will be inserted into the next revision of Articles. These are free of charge.

The Materials Center also has a supply, in Braille and on 4-track audiocassette, of the new ADA Exchange List For Meal Planning, 2003. In Braille, price is $10; on tape, $2.

The Materials Center also offers "Diabetes, Neuropathy, and the Feet," an audiotape by Dr. Kenneth B. Rehm, DPM. Recorded on normal (music speed), this tape costs $2 per copy.

To order, or to request a complete NFB literature catalog, contact: NFB Materials Center, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314. You may also order by email: [email protected]. The Materials Center is open 8:30 a.m. to 5 p.m., EST, weekdays.

Do you get tired of having to "shop around" for your various diabetes items? "Go to this place for these; to that place for those..." Do something about it. Check out diabetesstore.com, the leading online source for discount diabetes products. Contact them by telephone: 1-800-891-9399; or website: www.diabetesstore.com

Computer programs and operating systems are constantly improving. If you are blind, and use a screen reader, a program that speaks the screen content to you, so you can work without sight, is it keeping pace? GW Micro, maker of the Window Eyes series of screen reading software, announces Window-Eyes Professional, an up-to-date program designed to take full advantage of the newest generation of Windows' capabilities. For information or free demo disk, contact: GW Micro, in Fort Wayne, Indiana; telephone: (260) 489-3671; fax: (260) 489-2608; email: [email protected]; website: www.gwmicro.com.

The National Federation of the Blind NEWSLINE is an electronic publication of major daily newspapers, specifically tailored for blind and visually-impaired readers. NFB-NEWSLINE electronically "reads" all of each day's edition, which is immediately made available via modem to the local distribution centers. Users listen to the articles they choose, read to them in a synthesized voice. The reader is free to jump between articles, sections, and publications, and to pick the speed of reading to suit their needs. There is no subscription fee, and NEWSLINE is not the Internet, so no computer is necessary to use it, just a touch-tone telephone. Service is available to any person at least legally blind. There is no charge.

For further information, contact NFB-NEWSLINE, National Federation of the Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone: 1-888-882-1629.

DS Medical Supply is a full-service supplier with a catalog of more than 55,000 items, dealing with diabetes, its complications, and many other medical supplies, delivered to your home. Diabetes products range from glucose monitors by Bayer and LifeScan, and the AccuChek VoiceMate talking glucose monitor, strips, lancets and other supplies, to a broad selection of diabetic orthotics/foot care items, and much more. They accept Medicare, private insurance, some HMOs, and, in most states, direct or crossover Medicaid. Contact: DS Medical, 2105 Newport Place, Suite 600, Lawrenceville, GA 30043-5561; telephone: 1-888-724-4357 , website: www.dsmedical.com.

Our Diabetes Action Network now offers its own 'listserv:' [email protected]. Although its primary focus is on blindness and diabetes, any and all discussions concerning diabetes are welcome. We welcome topics like: diet, devices, healthcare, diabetes control, and how to improve the Voice of the Diabetic. Remember, please do not give any direct medical advice, unless you are a medical professional. Membership is free, and open to all.

There are two ways to sign up. You can go to the following website: www.nfbnet.org/mailman.listinfo/diabetes-talk or you can sign up by email, by sending a message to: [email protected] and putting "subscribe" in the subject line.

We invite blurbs and tidbit articles for inclusion in this column. Materials received may be edited and used as space permits. Products and services included in this column are for information only and do not imply endorsement by the Diabetes Action Network of the NFB.

There has been a lot of publicity about "10,000 Steps" programs to reduce the risk of complications from diabetes. Exercise is a good idea--but how long is 10,000 steps? The old Roman "mile" was 1000 military paces, i.e. 2000 steps. To walk 10,000 steps, you'll need to go, on the ground, on a treadmill, or in a combination of exercises, about five miles.

We know having diabetes increases the risk of leg amputation. We know certain ethnicities, those at the bottom of the economic ladder, with limited options for healthy food and good medical care, have a lot more diabetes. Put the two together, and how bad is it?

The following data are provided by In Motion Magazine, published by the Amputee Coalition of America. Contact them at telephone: 1-888-267-5669; website: www.amputee-coalition.org

Of all the major racial groups, African Americans who have diabetes are twice as likely to face amputation as are diabetics of other races. Among Native American diabetics, amputation rates are three to four times higher than those of the general diabetic population. An Indian Health Service study found Native Americans with diabetes, ages 15 to 44, had a risk of leg amputation that was over 150 times the risk for Native Americans without diabetes.

What's the answer? Education, and more education. People need to be taught what to look for, and then how to avoid it. Its the only way.

Aventis, maker of LANTUS insulin, has been developing an insulin pen administration device for it, for some time. In late February 2004, Aventis revealed it had submitted marketing applications, in Europe, The USA, and Japan. The new pen, the Aventis OptiClik, will also be used for Apidra (insulin glulisine), Aventis' new rapid-acting insulin analogue.

Please note this is submission to the approving authorities, not approval; LANTUS is not yet available in a pen. Stay tuned; we'll keep you posted.

Diabetics Needed
We have been asked to announce: Attention all individuals with insulin-dependent diabetes over age 18. You are invited to participate in a web survey on adaptation to diabetes and time orientation being conducted by Dr. Erin Martz at the University of Missouri, Columbia.

This is a voluntary, confidential survey. We will not ask for your name and address in the demographics form of the survey. If you want to enter a contest to win $100, which will be awarded to one person who completes the on-line survey, you will be asked to submit your name and address. This information will be stored in a file separate from your survey responses and deleted once a winner's name is drawn. You will not be contacted after completing the survey unless you win the prize.

Please go to the following web address to complete the survey, which should take an average of 15 or 20 minutes: http://www.coe.missouri.edu/~martze

Your participation will be greatly appreciated. If you do not have access to a computer at home, most public libraries have free access to computers. Thank you!

New Medicare Pilot Project
Medicare's reimbursement policies, like traditional American medicine, set far more value upon cure than upon prevention or disease management. As Representative Newt Gingrich put it some years ago: "Why will we pay to cut your leg off, but not to teach you how to avoid needing to have it cut off?"

But things are changing. An experiment in underway. Chronically ill Medicare patients with diabetes in the state of Texas are taking part in the nation's largest demonstration project aimed at improving care through disease management. So far, more than 400 physicians and 1200 patients have volunteered to be part of the demonstration. More are being recruited to take part in the three-year pilot program, which supplements regular doctor's care with day-to-day monitoring and support services, particularly between office visits. To be considered for this pilot program, a patient must be a Texas resident, a Medicare recipient, have a diagnosis of diabetes with lower extremity complications and cardiovascular disease or congestive heart failure.

The designers of the pilot program believe that by providing better and more thorough disease management, they can reduce amputations and repeat cardiac events by 50 percent, and delay the progression of renal failure by up to 25 percent--improving both health and Medicare's balance sheet.

If you fit the above criteria, and would like to learn more about participating in this pilot study, telephone: 1-888-284-0001.
The Ultimate Carb Counting Test
" The Ultimate Carb Counting Test," designed by Gary Scheiner and Regina Taddeo, RD, contains 32 questions about diet. Some are true-false, some are multiple choice, and some are "Applied." All use photographs of basic food items as a basis for the questions. The test explores your knowledge of fiber, artificial sweeteners, and the Glycemic Index as well.

The test is free, and is available by return mail, telephone Integrated Diabetes Services: (610) 642-6055, or on the Web, at: www.integrateddiabetes.com

Voice Formats
Voice of the Diabetic is offered in two formats: standard print, and 15/16 ips audiocassette, "talking book" speed. Anyone who is currently receiving the Voice in print and having difficulty reading it, may receive it on cassette at no charge. Voice tapes require the special tape player available free to the legally blind from Regional Libraries for the Blind and Physically Handicapped, which can be obtained by telephoning the National Library Service at: 1-800-424-8567. Note: Attempting to play Voice tapes (or any other tapes in NLS format) on a conventional music-speed tape player will yield incomprehensible "chipmunk sounds."

The Voice is also available by email, distributed quarterly. Go to: www.nfbcal.org/listserv-signup.html to sign up.

Periodically we receive requests for the Voice in Braille or large print. It is not available in either of those formats at this time.

All a subscriber needs to do, to switch from standard print to tape, or to receive both formats, free of charge, is contact us at the Voice of the Diabetic Editorial Office.

How Easy It Can Be
(Adapted from ISMP Medication Safety Alert, January 29, 2004, published by the Institute for Safe Medication Practices. Used with permission.)

Sometimes it is terrifyingly easy to screw up. A nurse found a list of patient names with accompanying room numbers. She mistakenly thought the room numbers were blood glucose values--and so she gave each patient insulin, according to a standard insulin sliding scale protocol.

A hospital doctor wrote a patient order for 10 units of LANTUS insulin, then changed his mind, crossed it out, and changed it to 8 units. However, the form was thick, and the cross-out didn't print all the way to the pharmacy copy of the order. To the pharmacist, it looked like "108 units," and, as the signature on the order was that of a respected diabetologist, the high dose was accepted and given.

A hospital physician wrote "d/c SSRI" on his patient's orders. What the doctor meant was to "discontinue sliding scale regular insulin." However, the patient was also taking a selective serotonin re-uptake inhibitor, and the pharmacist duly discontinued the wrong medication.

What's the answer? Question, question, and question again. Too often, we fear questioning the words (or notes) of our superiors, and we forget they are just as human as we are, and just as subject to error. They need our help. And, just as we have been taught to "drive defensively," we must teach ourselves to handle medications "defensively," to question changes, to know why alterations in procedure are taking place.

A study conducted at the US Department of Veterans Affairs suggests diabetes may significantly increase the risk of hearing loss. The long-term study included 694 veterans, 342 with diabetes; 352 without. Diabetic veterans under the age of 60 exhibited greater hearing loss symptoms than those without--and the loss was of a nature consistent not with mechanical damage to the ear, but with neuropathic changes in the brainstem. There is far more to do with these data, but I hear an argument for good, tight control.

Pre-diabetes
Seventeen million Americans have overt diabetes, either type 1 or type 2. Millions more have elevated blood glucose, sometimes called "impaired glucose tolerance (IGT)." It is estimated that about half these individuals will progress to overt diabetes. Because so many individuals with this "pre-diabetic" condition will progress to type 2 diabetes, many researchers now call the condition formerly termed "IGT," or (incorrectly) "borderline diabetes," as "pre-diabetes."

The principal test for the detection of diabetes (and "pre-diabetes") is the fasting plasma glucose (FPG) test, a finger-stick blood test given first thing in the morning, after a night without food. A reading above 126 suggests diabetes, and, until last October, a reading above 110 suggested "pre-diabetes," IGT.

An international expert committee has recommended moving the minimum figure downward, from 110mg/dl, to 100mg/dl. By doing so, millions more will be told they are at risk of developing overt type 2 diabetes, and can seek appropriate treatment with diet and exercise, weight loss, and, if necessary, medications.

Talk to your doctor about pre-diabetes, and about the fasting plasma glucose test.

In Voice of the Diabetic, Vol. 18, No. 3, July 2003, Nora House-Petz, a legally blind, diabetic, insulin-pump using amateur competitive bodybuilder, wrote "Living My Dream," about her life, her diabetes, and her successes. Since then, she has had more successes. Nora, whose website is www.diabeticexercise.com, has placed second at competitions at West Penn and Indiana State, and has a win at Indiana State as well. She didn't let her diabetes, or her blindness, interfere with her dream.

What's your dream? Follow Nora's example--don't let anything interfere with your pursuit of it.

Ascensia Dream Fund
Two issues ago, Voice, Vol. 18, No. 4, Fall 2003, we brought you the story of John Dennis, sailing around the world alone, with type 2 diabetes. Captain Dennis was sponsored by blood glucose monitor manufacturer Bayer HealthCare--who found the trip, and and the publicity, so inspiring, that they set up a grant, the Ascensia Dream Fund.

The fund recognizes people with diabetes who "dream big," and achieve extraordinary personal goals. In December 2003, Bayer HealthCare announced the fund's first winner.

She is Coleen McCarthy LaPierre, from Rhode Island. Her winning proposal was for "Dream Big," an adventure camp for teens with diabetes. Her camp will offer up to ten 16- and 17-year olds fitness, meal-planning, and diabetes education, along with a trip to the US Virgin Islands and SCUBA instruction. Eligible teens will be nominated by their doctors and diabetes educators.

"I want 'Dream Big' to demonstrate to children and teenagers everywhere that they are not limited by their diabetes," says LaPierre.

Articles Needed
If you have diabetes, are a family member or friend of a diabetic, or a health professional with an interest in diabetes, we invite you to submit an article for publication in the Voice of the Diabetic.

Our philosophy regarding diabetes is positive. Do you have an inspiring, enlightening story? We, the Diabetes Action Network of the National Federation of the Blind, seek to show people they are not alone, and do have options, regardless of diabetic complications. If you have experienced ramifications, others, who may be facing the same side-effects, could benefit from what you have to say.

Perhaps you have not experienced complications--your unique insight, coping strategies, and lifestyle can still inspire others. Are you a relative, a friend, or a health professional? More than 332,025 Voice readers could benefit from your story.

For information and article submission guidelines, contact: Voice of the Diabetic, 1412 I-70 Drive SW, Suite C, Columbia, MO 65203; telephone: (573) 875-8911.

The Voice of the Diabetic is a quarterly magazine published by the Diabetes Action Network of the National Federation of the Blind (NFB) for anyone interested in diabetes, especially diabetics who are blind or are losing vision. An outreach publication, it emphasizes good diabetes control, diet, and independence.

Donations are gladly accepted and appreciated. Contributions are not only tax deductible but are needed to keep the Voice and the Diabetes Action Network moving forward to help people with all aspects of diabetes.

Members of the NFB Diabetes Action Network enjoy priority services and unique benefits such as a continuous free subscription to the Voice, automatic access to committees covering all aspects of diabetes, free counseling concerning all facets of blindness and diabetes, as well as access to diabetics who have experienced complications.

The Voice is free to any interested person upon request. Each subscription costs the Diabetes Action Network approximately $20.00 per year. To help defray publication expenses, members are invited, and nonmembers are encouraged, to cover the subscription cost.

[ ] I would like to become a member of the NFB Diabetes Action Network and receive the Voice of the Diabetic. (Members are entitled to special benefits.)

[ ] I would like to receive the Voice of the Diabetic as a nonmember. (Nonmembers are encouraged to pay the institutional rate of $20/one year; $35/two years; $50/three years.)

[ ] print [ ] cassette tape for the blind [ ] both and physically handicapped
(recorded at slower-than-standard speed of 15/16 IPS)
To receive Voice of the Diabetic by email, go to: www.nfbcal.org/listserv-signup.html
(NOTE: If you want to receive a print or tape copy as well, please send this form to the Voice office.)
Optionally check this box:

[ ] I would like to make (or add) a tax-deductible contribution of $__________ to the Diabetes Action Network of the National Federation of the Blind.

Address:__________________________________________________
__________________________________________________

Voice of the Diabetic
1412 I-70 Drive SW, Suite C
Columbia, MO 65203
Telephone: (573) 875-8911
Fax: (573) 875-8902

Please make all checks payable to:
NATIONAL FEDERATION OF THE BLIND
(V19#2)
+++++++++++++++++++++++++++++++++++++++++++++++

VOICE OF THE DIABETIC