VOICE OF THE DIABETIC
The Diabetes Action Network of the National Federation of the Blind
Diabetes Support and Information
Volume 20, Number 2, Spring Edition 2005
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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)
Copyright (c) 2005 Diabetes Action Network, National Federation of the Blind. ISSN 1041-8490
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.
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FREE! FREE!
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.
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Here's the new front cover page for the VOICE.
Includes photo of Helen Olson with following overprinted on the photo: Helen Olson: 73 Years with Diabetes.
FALSE HYPOGLYCEMIA
Experts Tell You What To Do When You Feel Low -- And You Aren't
YOU'VE GOT TO BE A GOOD EXAMPLE
Marlene Hunn Shares Her Secrets Of Success
MANY BLIND DIABETICS SUCCESSFULLY USE INSULIN PUMPS
I AM A SURVIVOR
Sandra Sapp tells her story...
DIABETES DEFINITIONS: THE $5 WORDS
Ann Williams, RN, MSN, CDE, Defines the Terms
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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 342, 049+ offers such an outlet. Make your voice heard. For VOICE OF THE DIABETIC advertising information contact:
Eileen Rivera Ley
National Advertising Sales Manager
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Phone: (410) 296-7760 Fax: (410) 296-7645
e-mail: ([email protected])
or find us on the Web at:
(http://www.nfb.org/voice.htm)
For SUBSCRIPTION information, see the end of this document.
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INSIDE THIS ISSUE
HELEN OLSON: 73 YEARS WITH DIABETES ...
IMAGINE INDEPENDENCE: THE FOURTH
ANNUAL POSSIBILITIES FAIR ....
FALSE HYPOGLYCEMIA .....
FINE-TUNING ISLET TRANSPLANTATION .....
ASK THE DOCTOR
by Wesley W. Wilson, MD...
DIABETES DEFINITIONS: THE $5 WORDS
by Ann Williams, MSN, RN, CDE...
YOU'VE GOT TO BE A GOOD EXAMPLE
by Marlene Hunn .....
VACATIONING WITH DIABETES: BE
PREPARED
by Peter J. Nebergall, PhD...
GET PAST INJECTION PAIN...
MANY BLIND DIABETICS SUCCESSFULLY
USE INSULIN PUMPS
by Ed Bryant .....
THE ASSIMILATION OF CRISIS
by Marc Maurer .....
DIABETES VACCINE CLINICALS IN
SWEDEN ......
LOUISVILLE SITE OF 2005 CONVENTION..
DIALYSIS AT NATIONAL CONVENTION
by Ed Bryant.....
BOOK REVIEWS
by Ruth Mencl, RD, CDE.....
RECIPE CORNER.....
HEALTHY HOME COOKING
by Joanna Lund...
INHALED INSULIN: IT'S STARTING TO
LOOK LIKE A WINNER ....
I AM A SURVIVOR
by Sandra Sapp ....
BREAKING NEWS: "TYPE 3 DIABETES" ...
ARE YOU AT RISK FOR KIDNEY DISEASE?
by Dr. Mackenzie Walser .....
REDUCE DRUG INTERACTIONS
by Peter J. Nebergall, PhD...
RESOURCE ROUND-UP....
DO YOU WANT TO KEEP RECEIVING THE
VOICE?....
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HELEN OLSON: 73 YEARS WITH DIABETES
Imagine a time when very little was known about diabetes. For centuries, it had been a killer. Insulin had been discovered only ten years before, and was not well understood. You are diagnosed as a child, and well-meaning neighbors tell your mother: "Why are you spending so much time with her? She's never going to grow up anyway!"
For Helen Olson, of Halleck, Minnesota, this life was not imaginary. Diagnosed with type 1, insulin-dependent diabetes in December of 1931, she was only seven years old. As she describes it, she had a severe case of "red measles," followed by "general malaise, thirst, excessive voiding, and lack of appetite." Her mother read her old "doctor book," and the only condition that came close to explaining the symptoms was diabetes -- BUT, amazingly, the book said "children didn't get the disease!"
Helen's parents took her to the doctor, who quickly diagnosed her diabetes, and started her on insulin injections (three shots a day, at first), and on a strict diet. "I never cheated," says Helen.
"Managing" diabetes, rather than dying from it, was a new thing then, but Helen had a strong-minded mother, who was determined to do it right. "I followed everything," says Helen. "In fact, I couldn't go anyplace, unless I took along my scale, to weigh my food, and all that ..."
"This was during the Depression years, when I became a diabetic. We lived on a farm in North Dakota, so things were tight. But Dad would take a can of cream to town, and use it to buy one of my bottles of insulin. In that day, insulin wasn't as concentrated as it is today ..."
"And we bought those steel needles, which were two for 35 cents, if I remember. When they were dull, Dad would take out his hone, and sharpen them. We had the glass syringes, and those we would sterilize ... put them in a pan of water and boil ..."
"When I first started, Mother said they gave me three shots a day. [That was when there was only Regular insulin.] Then they developed a longer-acting type, I can't remember, but I don't think it is made anymore, and I went to two shots a day. As the years passed, I got down to one shot, mixed... Your body changes, apparently, and I got back onto two a day, mixed..."
"Right now, I'm on two a day, Humalog and NPH, morning and evening. I estimate that, between injections and blood glucose testing, I've taken around 49,000 insulin injections, and 23,000 lancet pricks to the finger, more than 72,000 pricks to my poor body, over this period of time."
Helen's mother prevailed. She taught her daughter good diabetes discipline, right from the beginning, and Helen prospered:
"I went to a communications college... It was only for about three months, and I learned how to teletype, then I went out west with the folks, and we were out there a couple of years during the war. I got along fine."
"I got married in 1950, and I had a son in 1951; he was 52 last fall. I had another boy in 1954, and neither one of my boys has diabetes. I had another baby which I lost in 1956 ... I had double pneumonia at the time, while I was pregnant."
Helen is still taking good care of herself:
"I test my blood sugar four times a day. I cannot get by with less. I really try to keep my diabetes in control, and, when I go out, if I have a bit more, I try to make up for it in some other way. My best advice, to all of you, is to follow the rules of being a good diabetic: Proper insulin, proper diet, and proper exercise. Do what you're supposed to do! If you don't, it's only going to hurt you. Do what your doctor advises you to do. I'm even thinking about getting an insulin pump."
And it works. In 1981 Joslin Diabetes Center awarded Helen a medal and plaque to commemorate her 50 successful years with diabetes. December 2004 marked 73 years with the condition. She's had a few problems: Hip surgery, carpal tunnel surgery on both hands, two single heart bypasses, and cataract surgery, but these can't all be seen as diabetes complications, of course. Helen credits her success to: "My loved ones, good doctors, good care, and the blessings of the Lord."
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IMAGINE INDEPENDENCE: THE FOURTH ANNUAL POSSIBILITIES FAIR
The National Federation of the Blind invites seniors, their families, and the professionals who work with them to attend the fourth 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.
The fair, which will take place on Thursday, May 12, 2005, from 9:30 a.m. to 3:00 p.m., will include helpful hint discussions about losing vision and enjoying life! The Possibilities Fair will be held at the National Federation of the Blind Jernigan Institute in Baltimore, Maryland, at 1800 Johnson Street. The registration fee is $15 and includes lunch.
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.
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.
The 2005 Possibilities Fair is made possible, in part, through a grant provided by Kaiser Permanente.
To find out more about this event, or to learn how a similar one can be held in your community, contact Jerry Lazarus, Director of Special Projects at the National Federation of the Blind, 1800 Johnson Street, Baltimore, Maryland 21230; or call (410) 659-9314, ext. 2297, or email [email protected].
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FALSE HYPOGLYCEMIA
From the Editor: The situation is common: An individual with diabetes has been running sugars in the 250s and above. Aggressive therapy with insulin and/or oral medications quickly establishes an approximation of euglycemia, normal blood glucose -- but the patient complains of frequent "lows," even though blood test results are solidly "normal." The patient is scared and uncomfortable, convinced of the need to eat, now.
What do you do about it? How long should this feeling last? What does it mean? I put the question to several experienced professional diabetes educators. Here's what they said.
Anne Whittington, MBA, MSN, RN, CDE, wrote: "After a 'spell of time,' usually longer than a week of glucose running high, the human body convinces itself, albeit wrongly, that 250, 350 or whatever, is 'normal.' That is why a reading of 100 mg/Dl will then feel low -- the body, 'used to' the higher figure, perceives it as that.
"Also, if somebody becomes rapidly euglycemic [as in emergency-room intervention to stabilize a newly-diagnosed case of diabetes], the lens in the cornea, which was shaped like a pancake (from all the water having been sucked out by the high sugars) becomes more basketball-shaped. This may lead to vision changes. The rule of thumb is four to six weeks of euglycemic readings after an extended period of high glucose, before checking the individual's eyeglass prescription.
"Although four to six weeks should complete the process, the person's 'feeling low at normal' problem should recede by two weeks of euglycemia.
"Last point: If this individual, just starting aggressive therapy for hyperglycemia, was already experiencing diabetic retinopathy, rapid glucose correction can advance that retinopathy. The patient will need guidelines from their primary care provider about what is the best rate to safely rachet down their high readings."
Ann Williams, RN, MSN, CDE, stated she had worked with people who had such a "feeling low at normal" sensation, and said: "I talk with the person about what to expect, and whether that hypo feeling will be bearable. If the individual cannot cope with the body's reaction to quick euglycemia, if the person feels it is unbearable, I have advised them to bring their blood glucose down more gradually. I know that feeling hypoglycemic can be extremely uncomfortable.
"There is a strong tendency to overreact to this feeling low, and thus to consume more carbohydrate than is necessary, to deal with it. If a person has a normal blood sugar reading, but feels low [because their body is still used to higher BG ranges], it is often not necessary to consume the 15 grams of carbohydrate one would take for a 'real' low blood sugar. One or two 4-gram glucose tablets may be enough, or 1/4-cup of juice, or 1/2-slice of bread. And, of course, in this situation, using less carbohydrate, just enough to get rid of the uncomfortable sensation, is better than bringing the blood sugar higher.
"I would suggest that someone who has been running, say 250 mg/Dl and above, most of the time, should aim for 150/200 the first week of reducing their blood glucose, 120-150 the second week, and, the third week, about 100 mg/Dl. I would keep in close touch during the process, with faxed blood glucose readings every few days, and phone calls to discuss special situations.
"In the big picture, an extra two weeks of reduced but still high blood glucose will not increase risk of complications much -- but if a person feels so uncomfortable that they abandon their effort to achieve normal blood glucose, that will definitely increase risks."
The participants in this discussion, Ann Williams, Anne Whittington, Connie Kleinbeck (RN, BSN, CDE) Betty Brackenridge (MS, RD, CDE), and Debra Sokol-McKay (CVRT, CDE, CLVT, OTR/L), all concurred, and stressed the importance of doing such a sugar reduction in cooperation with a Certified Diabetes Educator (CDE).
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FINE-TUNING ISLET TRANSPLANTATION
In the last ten years, transplant surgeons have developed techniques and medications that make pancreatic islet cell transplantation increasingly more practical. The most recent stumbling blocks have been the shortage of donor islet cells (it can take up to four cadavers to provide sufficient islets for one recipient) and the relative toxicity of immunosuppressant medications.
Researchers at University of Minnesota have been attacking both difficulties. Last VOICE issue, transplant surgeon Dr. David Sutherland discussed new, more efficient techniques for harvesting islets from a cadaver donor pancreas. A more effective way of removing and collecting islets could profoundly reduce the current islet shortage.
The "Edmonton Protocol" is a breakthrough refiguring of traditional transplant immunosuppression, based on the realization that some immunosuppressants were toxic to the very islets they were administered to protect. The University of Minnesota researchers further modified this protocol, reducing its toxicity, allowing more of the transplanted islet cells to survive.
The immediate goal is to reduce the need for islet cells to the point where one donor pancreas is sufficient -- and preliminary results suggest this goal is within reach. The test, however successful, was very small, with only eight participants, and further tests and clinical studies will be necessary before this new procedure becomes accepted practice. However, it looks good from here.
For further information, see Journal of the American Medical Association, Volume 293, No. 7, February 16, 2005, pp 836-842, for the article titled: "Single-Donor, Marginal-Dose Islet Transplantation in Patients With Type 1 Diabetes."
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ASK THE DOCTOR
by Wesley W. Wilson, MD
NOTE: If you have any questions for "Ask the Doctor," please send them to the VOICE editorial office. The only questions Dr. Wilson will be able to answer are the ones used in this column.
Wesley W. Wilson, MD, has retired as an Internal Medicine practitioner at the Western Montana Clinic in Missoula, Montana. Dr. Wilson was diagnosed with type 1 diabetes in 1956, during his second year of medical school. He remains interested and involved in diabetes education for patients and professionals.
Q: I've heard a lot about low-carb, high-fat diets like the Atkins diet, by people who tell me they are the ideal way to lose weight and keep it off. Are such diets safe for a diabetic like me? Are they the best choice?
A: Low-carbohydrate, high-fat diets can lead to weight loss. It's also true that any diet that provides fewer calories than a person uses will lead to weight loss. A standard diabetic diet can help achieve significant weight loss, especially if it's coupled with a mild daily exercise routine. By that, I mean parking your car an extra block away from work, using the stairs rather than the elevator, and going for an evening walk with your spouse.
It seems the Atkins diet has one major benefit -- foods high in fat provide a sense of satiety and "fullness," so that hunger is less troublesome than with low-fat diets. But, over the years I've seen a wide variety of diets help with weight loss. The problem is -- after a burst of enthusiasm, too frequently there is a lag in enthusiasm, and, with that, a tendency to regain the weight lost in the diet's "success." It is surprising how few extra calories it takes to regain those lost pounds.
Use of insulin does complicate diet choice, as insulin needs to be balanced against the carbohydrate consumed, and a dramatic reduction in carbohydrate (a "low-carb" diet) will certainly require a change in insulin dose. By checking blood sugars frequently, the new, correct dose of insulin can be figured. If you choose such a diet, be prepared to test more often, and to re-figure your insulin dosages.
I'm more concerned about the high-fat part of such diets, since type 2 diabetes (90 percent of all diabetes) has a number of components: Insulin resistance, tendency to gain weight, higher than normal blood pressure, and lipid (blood fats) abnormalities. All are part of the type 2 diabetes package. The lipid abnormalities include low HDL and high triglycerides. I'm still unsure of the effect of a high-fat diet on those lipids. The question is important, since diabetes is associated with a greatly increased risk of vascular disease such as stroke and heart attack. Certainly, if I were to undertake such a diet, I'd want to watch my lipids very carefully.
I don't think the low-carbohydrate, high-fat diet is magic, and I'm not sure of its safety. It seems the old fashioned diabetic diet may be safer for diabetics. Plus, it will work if a person can stick with it. Note: A diet, any "diet" should not be seen as something to be used for a bit and then discarded. Rather it should be a "lifestyle change," a new way of life that will be continued indefinitely.
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DIABETES DEFINITIONS: THE $5 WORDS
by Ann S. Williams, RN, MSN, CDE
This month's column covers definitions of words and phrases used to talk about diabetes and diabetes care. I'm particularly going to cover words and phrases you're likely to hear from your doctor or diabetes educator. I'll organize the words into subject areas: words about diabetes diagnosis; words about lab tests; words about high and low blood sugar; words about long-term diabetes complications; and words about controlling diabetes. In each section, the words are in alphabetical order.
Words About Diabetes Diagnosis
Beta cells, or the Islets of Langerhans: The cells in the pancreas that make insulin. They are called Islets of Langerhans because a doctor named Langerhans discovered them, and he thought they looked like little islands in the pancreas.
Diabetes mellitus: This is what we usually call just plain "diabetes" -- a disease in which the dissolved sugar in the blood is high. It means, literally, "sweet diabetes."
Diabetes insipidus: This is much less common than diabetes mellitus. It means literally "bland diabetes." When a person has diabetes insipidus, there is an imbalance of hormones that causes the person to make a lot of very dilute urine. It's a completely different condition than diabetes mellitus, and has nothing to do with blood sugar.
Gestational diabetes: A type of diabetes that develops during pregnancy. It usually goes away after the baby is born. But a mother who has had gestational diabetes is much more likely to develop type 2 diabetes later in life. Gestational diabetes is managed with diet and exercise, and sometimes insulin.
Insulin: A hormone naturally made by the body. It helps all the cells of the body to use glucose, or sugar, for energy.
Insulin resistance: The inability of the body to use insulin efficiently. When a person has insulin resistance, it takes a lot more insulin to control blood sugar than when a person does not have insulin resistance. Insulin resistance often happens in people who are overweight, or in people who don't get much exercise, or both. Taking a medication, such as steroids, can increase insulin resistance.
Pre-Diabetes: A condition in which a person has a higher blood sugar than normal, but not high enough to be diagnosed with diabetes. By definition, the fasting blood sugar is higher than 100, and lower than 126. A person with pre-diabetes is at risk for developing diabetes, and also for heart attack and stroke.
Type 1 diabetes: Diabetes in which the person does not make any insulin, and must inject insulin to live. This type used to be called juvenile diabetes, insulin dependent diabetes, and type I diabetes. Most often develops in children or young adults, but can happen at any time of life.
Type 2 diabetes: Diabetes in which the person still makes some insulin. Either the person does not use the insulin efficiently (insulin resistance), or the person does not make enough insulin (insulin deficiency), or there is some combination of these. This type used to be called adult onset diabetes, non-insulin dependent diabetes, and type II diabetes. Most often it develops in adults who are aged 40 and older, but it can develop in younger adults, teenagers, and even some children.
"A touch of sugar," "borderline" diabetes, and "the less serious kind:" These types of diabetes do not really exist. People sometimes use these words to talk about diabetes that is not treated with insulin. However, there are no real definitions for these words. Using these words makes it sound as if the person's diabetes is not very serious. But a condition that, out of control, can cause a person to have an amputation, lose his or her eyesight, cause the kidneys to fail, and cause a heart attack or stroke really should not be called "less serious." ALL diabetes should be taken seriously, whether a person uses insulin or not.
Words About Lab Tests
A1C (also called hemoglobin A1C, glycosylated hemoglobin): This lab test is important because it measures the average blood glucose over about the last three months. It shows how much glucose is stuck on to the red blood cells in a person's blood. The higher the blood glucose percentage, the more sticks to the red cells. The longer the blood glucose is high, the more sticks to the red cells.
Albuminuria: A condition in which the urine contains more than a normal amount of albumin. Albumin is a particular kind of protein. Albuminuria can be a sign of kidney disease.
Blood glucose: The amount of sugar dissolved in the blood. In the United States, it is usually given in units of milligrams per deciliter (mg/dl).
Cholesterol: A type of waxy fat made in the liver. It is also present in some foods.
Fasting glucose: The amount of dissolved sugar present in the blood after the person has not had anything with calories in it to eat or drink for eight hours or more.
HDL Cholesterol: The initials HDL stand for high density lipoprotein. This is a fat in the blood that takes extra cholesterol from the blood to the liver, to remove it from the body. It's often called the "good" cholesterol, the kind for which you want high levels. You can remember which it is because it begins with "H" for high levels.
Hypercholesterolemia: High levels of cholesterol in the blood.
Hypertension: High blood pressure. Many people think the word hypertension has something to do with being emotionally tense. It's true that emotional tension can sometimes raise a person's blood pressure, but the word hypertension does NOT mean emotional tension; it simply means high blood pressure.
LDL cholesterol: The initials LDL stand for low density lipoprotein. This type of cholesterol takes fat around the body to where it is needed, and also deposits fat on artery walls. It's often called "bad" cholesterol, the kind for which you want low levels. You can remember which it is because it begins with "L" for low levels.
Lipid panel or lipid profile: A lab test that measures total cholesterol, triglycerides, HDL cholesterol, and LDL cholesterol. It's important because it is one way of telling a person's risk for heart disease.
Proteinuria: The presence of protein in the urine. It can be an early sign of kidney disease.
Triglycerides: The form in which fat is stored in the body. When diabetes is out of control, there are often high levels of this type of fat in the blood. It's a risk factor for heart attack and stroke.
Words About High And Low Blood Sugar, And Other Related Conditions
Hyperglycemia: A high level of glucose (dissolved sugar) in the blood. Fasting hyperglycemia is a high level of glucose in the blood after a person hasn't eaten for eight hours. Postprandial hyperglycemia is a high level of glucose in the blood one to two hours after the person last ate.
Hypoglycemia: A low level of glucose (dissolved sugar) in the blood, usually below 70 mg/dl, although some people have symptoms of hypoglycemia at higher levels. Also called insulin reaction.
Hyperglycemic Hyperosmolar Nonketotic Syndrome (HHNS): a condition that starts when the blood glucose is high over a long time in someone with type 2 diabetes. The person does not have any ketones in the blood, because there is still some insulin in the system. But the person has very high blood sugar (in the 800s or even higher), has lost a lot of fluid, and is dehydrated. Therefore, the blood is very concentrated. This is a medical emergency, and can be fatal. The person should go to a hospital for treatment.
Ketoacidosis, ketosis, diabetic ketoacidosis, or DKA: A condition that starts when there is very little insulin in the blood. The blood sugar gets very high. Because the body cannot use glucose for energy, it starts to break down fat at a rapid rate. One of the waste products produced when fat is broken down rapidly is a high level of ketones in the blood and urine. Symptoms include nausea, vomiting, stomach pain, fruity breath, rapid breathing, and ketones in the urine. High levels of ketones can be toxic. Ketoacidosis is a medical emergency. If it's caught early, some doctors will treat some people at home. But for most people, it's best to be treated in a hospital.
Ketonuria: Ketones in the urine. This happens when a person has ketoacidosis. You cannot see the ketones, but can test for them by dipping a ketone test strip in the stream of urine, waiting for the correct amount of time, and comparing the color to a color chart on the bottle. As of this writing, there is no adaptive equipment that allows a person who cannot see colors to test for ketones independently.
Words About Long-Term Diabetes Complications
Amputation: The surgical removal of part or all of a limb. BK means below the knee; AK means above the knee.
Cardiac ischemia: A condition in which the muscle of the heart is not getting enough blood, usually because of blocked blood vessels. This can cause a severe pain, known as angina, although sometimes a person does not feel it at all.
Cataract: A clouding of the lens of the eye.
Congestive heart failure: A condition in which the heart does not pump blood efficiently. The pumping is weak enough that the blood does not return to the heart fully. The person has fluid building up in body, especially in the legs and the lungs.
Diabetic retinopathy: A diabetic eye disease in which the diabetes has produced damage to the small blood vessels in the retina. The retina is the part of the eye that receives light and makes it possible for a person to see. Damage to the retina can cause vision loss.
Gangrene: The death of body tissue. It's most often caused by infection and lack of blood flow. It can lead to amputation.
Glaucoma: An increase in the pressure of the fluid inside the eyeball. It can be very painful. If it is not controlled, it can lead to vision loss.
Neuropathy, peripheral and autonomic: Damage to the nerves. Peripheral neuropathy is damage to the nerves in the limbs. Usually it starts in the toes, feet and hands, and it can progress up the legs and arms. Autonomic neuropathy is damage to the nerves that go to the body organs: the stomach, intestines, heart, lungs, bladder, or genitals.
Renal disease and renal failure: Kidney disease, and kidney failure.
Sudden cardiac arrest: Sudden stopping of the heart. The person might not have had any known heart disease. The cause can be a loss of blood supply to the heart from blockage. Or it can be from rapid or irregular heartbeat.
Stroke: A condition caused by damage to the blood vessels that serve the brain. Some people have started calling stroke a brain attack, because it is so much like a heart attack. Stroke can be caused by blockage of a blood vessel, or by bursting and bleeding from a blood vessel. Either way, a part of the brain is not getting the oxygen and the glucose it needs to work properly. Damage from a stroke might cause a person to lose the ability to speak, or to understand words, or to move one side or part of the body.
Words About Controlling Diabetes
Carbohydrates: One of the main nutrients in foods. All carbohydrates are either starches or sugars when they are in foods. Starches are just long chains of sugars, a little like a long train of railroad cars. When they are digested, it's as if the cars of the train are separated. After they are digested, they all go into the blood as sugars.
Carbohydrate to insulin ratio: The amount of carbohydrate covered by one unit of insulin. This number varies from person to person. Many people with type 1 diabetes find that 15 grams of carbohydrate are covered by 1 unit of insulin, so the carbohydrate to insulin ratio is 15/1. But some people are more sensitive. For some people, 20 grams of carbohydrate are covered by 1 unit of insulin, so their carbohydrate to insulin ratio is 20/1. And some people are less sensitive, and may have a carbohydrate to insulin ratio of 10/1, or 7/1.
Correction ratio: The blood glucose drop a given person can expect from 1 unit of insulin. Many people with type 1 diabetes find their blood glucose drops 50 points for each 1 unit of insulin, so the correction ratio is 50/1. A more sensitive person might have a ration of 60/1, and a less sensitive person might have a ratio of 30/1 or 25/1.
Euglycemia: A normal level of glucose in the blood.
Glycemic index: A way of describing the effect of types of carbohydrate on blood glucose, by ranking standard amounts of the foods in comparison to a standard reference food. For example, one popular glycemic index compares how much certain foods raise the blood sugar compared to a set amount of glucose. The glycemic index is more popular outside the U.S. than it is inside the U.S. However, some people in the U.S. really like using it.
Are there other words you need to have defined?
I know many people feel embarrassed to ask health care professionals just what they mean by a particular word; so if there is something I don't cover that you want to know about, please contact the me, c/o Ed Bryant, Editor, Voice of the Diabetic, 1412 I-70 Drive SW, Suite C, Columbia, MO 65203; telephone: (573) 875-8911; e-mail: [email protected]. I'll answer your question in my next column.
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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 Diabetics 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."
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YOU'VE GOT TO BE A GOOD EXAMPLE
by Marlene Hunn
My name is Marlene Hunn, from San Francisco. I've had diabetes 48-49 years, since I was five years old. The doctors think it was a few years before that I had it. Now I am legally blind.
My mother told me I was really sick, just before I was diagnosed. I had an older brother, and he was perfectly healthy. My mother remembers talking to a lot of people; nobody could figure out what was wrong with me. She couldn't reach the pediatrician there, to take care of me, so she called the local doctor, right up the street.
He said he would be there after office hours, and for some reason my mother blurted back: "I don't think my daughter is going to live that long." So he came right over, took one look at me, and called an ambulance. I was in a coma for ten days, and they were going to do an exploratory laparotomy on me, not knowing what was wrong, and one of the nurses in the operating room said, "This kid really smells bad." I guess it was the acidosis.
And so, before they could cut anything, they did the blood work, and sure enough, I had very high blood sugar. Then they started me on insulin IVs and all that stuff. This happened ten days after I had my tonsils and adenoids removed. So as they studied me longer, that came to the surface, and is why the doctors thought I'd had diabetes previously, maybe for more than a year before, and I was just living through the symptoms.
After ten days in a coma, they started me on IV insulin. I went through the typical stages: You know, my parents learning how to give me insulin injections ... actually, both my parents learned how to give it to me, and of course they were both freaking out. My mother became almost an authority on diabetes; she read everything. But she also had heard about diabetes from my grandparents, who had come over from Europe: "That was an old-person's disease, diabetics were blind and were amputees ..." they'd said. My mother kept saying to the doctor "There is nothing wrong with my daughter's legs."
She was right; it wasn't my legs. I was in and out of the hospital for at least a year, and I was held back in school, because I kept going in and out of comas and high blood sugars and couldn't quite get it stabilized. I guess back then they called it brittle diabetes ...
Syringes? You used the same needle until it rusted out. You could stick something through to make it sharper. Boy, did I hate those.
Both my mother and father tried to give me the insulin. My mother couldn't do it. She just couldn't; she would put the needle in, and then get sick to her stomach because she thought she was hurting me. From then on my father did it, God bless him, until I was about ten years old.
How did they get me to start doing it myself? They were very smart. They told me I could have a surprise pajama party one night, and I invited all my friends, because, you know, I just thought it was so cool, but my parents also said to me: "now tomorrow morning, when all you girls get up, we'll take you out for breakfast." but they said to me: "only if you give yourself your own shot for the first time, you learned how, we've practiced," so of course I couldn't let my girlfriends down!
I tested, not my blood sugar, back then, but my urine, five drops of urine in ten drops of water. I also learned how to cheat, back then. I didn't want my parents to know I had been sneaking food, but as I look back, I was probably normal. I thought it was terrible I couldn't have whatever everybody else had. Like even at Easter time (I come from a Catholic family), we all celebrated, and all my cousins got candy, but of course I couldn't have any, and I would cry, thinking "why not me?" So my parents always gave me a special treat, like a stuffed animal or something nice.
So that was good. On birthdays, they let me have a piece of cake with some ice cream just because it was my birthday. But I still always felt bad, because I saw everyone around me eating candy.
The good side was that my mother started cooking very healthy. She got rid of all the white sugar in the house. I mean, my brother is probably so healthy today because we ate so well. We ate fresh fruits, we ate vegetables, she was a fanatic about my diet. But at a certain age, probably as a teenager, I would go out and cheat. I wanted to be normal, to be like everyone else.
Through my high school years, school was ok. I didn't notice much, but every now and then my blood sugar would be really high. My doctor would kind of play, adjusting it. He was a very young guy, and we probably grew up together, learning about diabetes. He was my doctor up until my 30s, and with me through most of it. Every now and then he would say: "Well, let's try this," and "Let's try that."
In my late 30s (I had moved to California by then), I had an infection on my left foot, and an open sore. It was getting pretty bad, so they experimented with the hyperbaric chamber. You know how deep sea swimmers get the bends if they come up too fast and they have to be put in a big, high-pressure air tank?
They put me in a big tank like that, full of pure oxygen. Bacteria, like a green plant, does not grow on pure oxygen, so their experiment was to put somebody with an open wound into a hyperbaric chamber for a couple of hours a day and deprive the bacteria of carbon dioxide, to see if it would stop spreading -- while the extra oxygen encouraged my wound to heal faster. Now for me, it worked, but it was very experimental at the time. They make better machines now, but it's pure oxygen, so you have to be really careful.
At a certain point, my eye doctor asked the other doctors: "Is the wound finally healing?" and they said yes, because he said: "She is having eye problems now, she's going to lose an eye if you continue." But they said at that point: "We're going to take her out of the chamber now."
I think that treatment took three months. About a half a year later, my doctor told me my vision was being affected. We started laser treatments then, but I did lose my left eye. I still have a right eye. I am legally blind, but I get around. I use magnifying glasses, and I memorize all sorts of things.
I'm working with the Rose Resnick Lighthouse for the Blind here, and they are a fantastic, wonderful organization. They send me a reader, and I'm learning the computer through them. They have all sorts of wonderful things. We even have social events.
Anyhow, I lost my eye around 1980, and then, six years ago, my mother had a severe stroke, so my brother and I were taking care of her. We didn't want to put her in a home, and she lived for about another eight and a half years and got much better. She couldn't be left alone, so we shared taking care of her, but my doctor thought it was a lot of stress on me. He started noticing my blood chemistries changing and he said, "You're going to start having kidney problems."
I looked at him like he was crazy, because I felt great.
I was just taking two insulin shots a day at that point. I was testing my blood, and of course I hated that. Finally, a year after my mother died, I guess the stress was too much, after almost nine years, and my creatinine and blood chemistry were just crazy.
We went back to sell my mother's home, and I got terribly sick there. At one point I thought I was dying. I said to my brother: "You go get me on a plane; I want to go back to San Francisco." I really trusted my doctor at this point. He was a nephrologist.
I came home on Monday morning; Monday afternoon I was on dialysis. My doctor said two days, two treatments of dialysis, and I would feel 100 percent better, but it is a tough way to live, and he was right.
I started dialysis in '97, and got the transplant in '98. I was on dialysis for a year. Dialysis kept me alive, but I don't know if I could have taken it much longer psychologically. I was very depressed.
The one tube went in and the other one came out, that's dialysis, and your life changes. My brother got tested to donate a kidney. I had remembered years ago, as a kid, doctors would talk in front of me, and say dire things about the inevitability of serious complications. So, I was talking to this doctor and asked "Even if I get a new kidney, and my brother was willing to give me a kidney," I said "That kidney is going to become a diabetic kidney, if I don't reject it. This could happen again?" And he said yes, it could, and I said that is just insanity.
I told the doctors I wasn't going through this again, and asked them about a pancreas. They said I could put myself on the dual transplant list, told me a lot of insurance policies don't pay for it -- but suggested we worry about that when it comes. There was a group of surgeons that interviewed me, and I found out later, my doctor took a chance on me, as he thought I could handle it.
So there I was, on dialysis, and they told me I was on a transplant list. It was almost one year to the week after I started dialysis, and they didn't quite tell me I was on top of the list, but when I wanted to go home to visit my family, they suggested I stay around, instead.
So one weekend, about two weeks before I was going to go back home (I was setting up all my dialysis appointments in Cleveland), on Saturday morning, this nurse called and introduced herself. I had never talked to her before, and she asked what I was doing tonight, and I told her, "I have dialysis tonight."
She told me I needed to prepare to be admitted; that they had some organs that might be a match. So I went to dialysis that night, and later, around 10 (I was in the last group getting dialyzed on Saturday night), in walks this surgeon carrying his little freezer bag. He talks to me, and, because of my poor eyesight, they always have to get so close to me. He said: "Alright, Marlene, I'm going to go down to the airport now and pick-up your organs. We think we have a match, I'll see you tomorrow morning in surgery."
So the next day, I got the new pancreas and kidney. They said it was working immediately -- right on the operating table the kidney started working. They kept testing my blood sugars, from that day on, I have never run a high blood sugar since. I stay in the 80s and 90s.
Then I started on anti-rejection medications. I didn't realize how strong some of those were. They told me I had to come back in every few days for a blood test. About ten days into it, I started feeling weird, not sick, just weird. One night, something must have happened, I ended up on the floor sleeping; I knew where I was, I just was ... like I was crazy.
I remember the next morning I had a doctor's appointment. See, my mind was kinda' working, except nothing seemed, it was so surrealistic, the wall wasn't where it was supposed to be, I couldn't find the bathroom, I didn't realize this was the drugs interacting.
One of my neighbors took me to the doctor the next day. I got in there, I told them I couldn't walk to the doctors, and they got me a wheelchair. I went to the transplant clinic, and the head female doctor took one look at me, and started talking to me, and I must have sounded crazy. I mean my voice must have sounded like I was drunk or something. I was leaning over, I couldn't even sit up straight in the chair -- like I was falling out of the chair.
The next thing I know I was being admitted, I was being run down the hall on the gurney. The next two weeks were the weirdest weeks of my life. I remember hallucinating; they even called in a psychiatrist. They said it was one of the anti-rejection drugs, I couldn't even tell you the name of it, all it had that I remember was a number, and they said they couldn't stop giving it to me.
My brother came to visit me and he said I sounded like a crazy woman. The joke was I was having lunch with Hillary Rodham Clinton, and the whole hospital thought that was so funny. I mean I was hallucinating beyond belief. I thought all my toes grew back. I was making bets with my brother, just crazy stuff. Then paranoia set in. I wouldn't let them shut the lights off. I wouldn't let nurses come near me with a shot. I was having hallucinations of being in a wheelchair and drowning in a pool of water. About two weeks later I started coming out of it. I remember the psychiatrist coming to visit me and asking me questions: "What day is it? Do you know where you are?"
It may not happen to some people, so maybe you don't want to scare them, but it happened to me. It wasn't like a dream, because I still remember all of it. But then I started getting better and it was working and my blood chemistry was still working and I never had another episode, not for the past five years because that first year was a little iffy. I have felt wonderful.
I think it's worth going through that first year after surgery; there are maybe some bumpy spots, but like I said, I can't believe the wonderful feeling I have, sleeping through the night. I just feel so much healthier. Yes, too bad it's such a major surgery, I'm sure as things move along and as people get better at it, learn more about transplants and medication, it will be easier. But I would go through it again. I'd go through it in the blink of an eye.
My brother was willing to change his life for me. Anybody who is a donor, or anything like that ... even the family whose member gave me their pancreas and kidney, God bless them. That's all I can say, I hope they understand that, they took all seven organs from this person from what I understand, and he saved seven people.
I think education is the best thing. That's why I pass out the newspaper quarterly. I talk about it, I just talk to everybody who will listen. I try to be a good example. I would like to tell little kids it is worth taking multiple shots. When I was a kid, I thought I was invulnerable, like the rules didn't apply. How can you convince a little kid they are going to get sick in 30 years, or maybe go blind or something?
You've just got to be a good example. My parents were. Every year we went on a little vacation. I thought we were as normal as the Cleaver family. I didn't know I was different. Research and transplant and more education. There will be more and more diabetics as we get obese, that's kind of sad.
I think I had a good life with diabetes, not that I enjoyed the disease, but I think I have a full and wonderful life because I had a wonderful family. I learned as much as I could, and I learned from the diabetes, I think; but if anybody had ever given me the opportunity not to be a diabetic, I would recommend it. I would tell, up front, everything they have to go through. I took 50 pills a day at one point, and now I'm down to around four or five pills a day. If there was a way children wouldn't have to be diabetics that would be the greatest gift.
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VACATIONING WITH DIABETES: BE PREPARED
by Peter J. Nebergall
You've worked hard for your vacation -- and you're not about to let your diabetes, or any other medical condition, "put the brakes" on your afternoon in the sun. Right. There may be "no vacation from diabetes," but most definitely can have a vacation with diabetes. You just have to do a little planning. Let's break it down.
Your blood sugars
Most of us, on vacation, move a little more than we're used to. Exercise burns blood glucose. On vacation, we travel away from familiar food sources, and eat different things, at different hours than we're used to. We sit a lot, in buses and planes, and then we walk a lot. All this can bounce one's blood sugars around a bit. It raises havoc with your schedule. It's part of the game. What are you going to do about it?
Are you a diligent blood-tester? Do you test regularly, and often? On vacation, you won't have to sit out the fun; you'll just need to test more often. Then you can take the appropriate action when you run low, or high.
Is your blood glucose monitor in good condition? Are the batteries fresh? Will you need spares? Are you sure of your testing technique?
Estimate the number of times you will need to test on your vacation, and how many lancets and test strips you'll need -- and then, most of you, double the number. You will be testing more often, you don't need to waste time looking for more strips in an unfamiliar language; and, if and when you do find them, there's no guarantee they were stored properly; they may not give you reliable results. Carry more supplies than you need -- they won't go to waste.
Think about food
Will you be backpacking food, or buying it? Will you be staying inside the U.S.A., Canada, western Europe? Perhaps you're going to take that African safari? If you're staying within the English-speaking world, you'll encounter many familiar restaurant names. Strictly speaking, their food is not "diabetic," but there are several guidebooks that tell you just how specific items would fit in your meal plan, whether you use the "Exchange System" or count carbohydrates. Best of these, in my opinion, is GUIDE TO HEALTHY RESTAURANT EATING, by Hope Warshaw, RD, CDE, published 1998, by McGraw-Hill. If the restaurant name is familiar, it'll be in there. If it isn't, look in THE DIABETES CARBOHYDRATE AND FAT GRAM GUIDE, by Lea Ann Holzmeister, RD, CDE, published 1997, by the American Diabetes Association.
But suppose you're going to Greece, or some place like that? Here's what I'd do: Before I went, I'd get a few cookbooks of the region's cuisine. Not "gourmet" stuff; I'd want to see what's in the everyday food I'd be likely to encounter. Then, I'd take the recipes to a dietitian (RD), preferably one who is also a Certified Diabetes Educator (CDE), and we'd discuss what, and how much, of the local food I could eat without blowing my meal plan. Be prepared.
Oral medications
Figure out what prescription meds you're going to need, and keep them with you, in your "carry-on" baggage. Don't take chances; one now-defunct airline's initials spelled out: "Sorry, all baggage exited New Amsterdam." It can happen; keep your meds with you. And of course carry copies of prescriptions; it's so important to prove your pills are for you.
If you're in the U.S.A, and you need some more of any prescription medication, you should be able to get it. Overseas, remember pills available in one country may not be licensed in another. Carry more than enough of your medications.
Also, be aware both oral medications and insulin are fragile; they can be damaged by poor storage conditions. A good rule: If it is too hot, too cold, too dry, or too wet for you -- don't store your medications there and expect them to work.
Insulin
Unless you're going to be "out there" for a very long time, you probably won't need to buy local insulin. But it can happen; your supply can be lost, by theft or by accident. What do you do then? Since you have a copy of your prescriptions (see "common sense," below), you should be able to get some more; almost all of the world has insulin on the pharmacy shelf. Problem: It may well not be your brand, your speed, or your strength. The same insulin may have a different name "over there." Just as likely (in Africa, the Middle East, and Asia), it'll be a different insulin: Animal-source, "R" speed, and something other than U-100. It'll work, but you may have to do some computing.
Remember, it's the number of units that matters, not the number of cc's you inject. A U-80 insulin is 20 percent weaker; you'll need to recompute your dose. A U-40 insulin is less than half as strong as an equivalent U-100; you'll need almost 2.5 times as much by volume to take an equivalent dose -- and you'll need to be closely monitored. You can do it, and it beats the alternative, but it's a hassle best avoided if at all possible.
Do you use an insulin pump? Talk to the manufacturer, before you go. Tell them where you'll be, and they'll let you know where's the nearest source of supplies for their pump. I think you'll be pleasantly surprised. But carry enough supplies; that's always easier.
If you're going overseas, talk to your doctor and your diabetes educator first. Discuss your medications, and what your health care team wants you to do. Be informed.
Common sense
If your diabetes is in any way "brittle," or if you have any other medical condition that regularly needs intervention, don't travel the world's boondocks alone. Go with a companion who knows you, knows what your crises look like, and knows what to do about them.
Carry medical ID, to let local authorities know what you're facing. It would be a good idea to get a letter from your doctor "to whom it may concern," explaining your medical ramifications. A surprising number of the world's doctors, when you find one, studied in the U.S., in England, or in France. They can read your doctor's notes.
Carry your medications only in their approved containers, and be sure you have copies of your prescription documents. American airport security (and Immigration Service) staff may ask to see them. Foreign authorities probably will ask. If you lose a vial, or a bottle of pills (and you can; the world has many pickpockets), these documents can save you a lot of time and trouble. If you're carrying syringes, be discreet; what looks like "illegal drugs" to the uninformed can get you treated like a druggie by same -- especially when he/she is wearing a badge. While you're at it, learn a few important medical terms in the local language, in case you need to explain yourself.
The above advice really isn't a lot. Just think about what you're doing; and be pro-active. Plan for trouble; then if something out of the ordinary happens, you can deal with it promptly, and get back to the business at hand -- enjoying your vacation. See ya' there!
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GET PAST INJECTION PAIN
Fear of needles motivates a lot of us. Otherwise perfectly sensible people cringe and shrink away from the tiniest syringe. perhaps it is something atavistic; but fear of needles is a big issue, and a major source of noncompliant behavior. We can talk about "how little it hurts," but for some folks, it's like a phobia. What do we do about it? How do we help people past their fear of needles?
One option is the ShotBlocker. Without chemicals, currents, analgesic creams, or waiting time, it provides an anesthesia of sorts; the pain from the insertion of the needle is blocked, and the injection becomes less an object of dread.
Veterinarians have known for years that an animal distracted from the pain of an injection will not react to that injection. ShotBlocker uses the same idea. They call it the "gate theory," but what it means is if you "stimulate the skin" around the injection site, you won't notice the injection. It's like pinching a horse so he doesn't react to the stick -- and it works.
It's a simple piece. Looking like a flattened piece of prickly fruit, or a vaguely predatory drain-stopper with a hole in the middle, it has about 100 short, blunt "tines" on one side. Placed around the injection area (the injection is made through the open hole in the center), you don't notice the "stick."
ShotBlockers are single-use, sold in packages of 50 ($34.95) or 100 ($49.95). Contact: Bionix Medical Technologies, 5154 Enterprise Blvd., Toledo, OH 43612; telephone: 1-800-551-6810; website: www.bionix.com
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MANY BLIND DIABETICS SUCCESSFULLY USE INSULIN PUMPS
by Ed Bryant
(This article appeared in VOICE OF THE DIABETIC, Volume 15, Number 2, Spring 2000 Edition. Updated January 2005.)
Insulin pumps, which deliver continuous doses of insulin, are being used by more and more diabetics, blind and sighted, to achieve better diabetes control. Unfortunately, there are health professionals who assume it isn't possible for a blind patient, or one with severe vision loss, to operate an insulin pump. These individuals, and some blind people, have the misconception that blindness is synonymous with inability. They're wrong.
Most people with type 1 diabetes, sighted, blind, or visually impaired, can successfully use an insulin pump if they desire. With the pump, they can come closer to "normal," non-diabetic blood glucose, than with any other means short of a pancreas transplant.
Today's pump is the size of a deck of cards, or smaller, and is highly computerized. Insulin runs from the pump, through a tube (catheter or cannula), usually attached to the abdomen or thigh. Insulin is delivered under the skin, through the tiny, flexible tube. The user programs the pump for basal (continuous) delivery, small amounts of short-acting insulin 24 hours a day. He/she also programs the insulin pump for bolus insulin delivery, to receive extra insulin just before eating. Insulin pumps have several different controls and alarms, and your doctor may want you to spend a few days in the hospital for training.
Current insulin pumps are easier to use than their predecessors; they simplify dose computation -- but they do not set themselves. Insulin pump users need to check their blood glucose often, at least four times a day. Since only short-acting insulin is used, no mix of long- and short-acting insulins, it is important the user check blood sugars regularly to avoid really high or low blood glucose. Warning: If the needle, or catheter, comes out from under the skin, there may be no warning alarm to alert the user; dangerous ketones can start building up in about one hour. With little or no insulin in the body, ketoacidosis can develop in just a few hours. Note: Pump users say the needle or cannula rarely, if ever, comes out; and if it does, they can feel what happened. Additionally, if the needle has detached from the skin, then insulin will flow onto the clothing, which will after a while become wet. Most users should also be cognizant of leaking insulin, as it smells very bad. To reiterate, it is important that you closely monitor your blood sugars.
An insulin pump might be what you need if you are having major problems controlling your blood glucose with insulin shots. You might consider a pump if insulin injections do not keep your blood glucose near a normal level, or if you have big glucose swings. Nighttime can be difficult for some, because they have episodes of hypoglycemia, or get up in the morning with high blood sugars before breakfast. The pump can be programmed, so it can deliver less insulin at night and more insulin before dawn, minimizing nighttime lows and before breakfast glucose highs. We should all be monitoring our blood glucose, working toward tight control. We should all be working with our health care team to reach euglycemia, normal blood glucose.
You may be able to wear your insulin pump while bathing or swimming. Some pumps are waterproof, and some come with a water protective case.
Insurance
Some insurance companies will help with the cost of pumps and supplies. They realize better diabetes control means less diabetes complications, less time in the hospital, and a bottom line of less expense for the insurance provider. Your doctor should be able to help show insurance companies the value of covering the cost of pumps and supplies.
As of April 1, 2000, Medicare began helping type 1 diabetics with the cost of pumps and related supplies. For information, telephone: 1-800-633-4227, and ask for "Durable Medical Equipment."
Pump Manufacturers and Costs
Change has become quite rapid; new models and new manufacturers are announced almost every month. Do some research -- much of the "published information" is already incomplete and outdated, and few sources mention all your options. The Internet is a great place to start.
Animas (the R1000 and R1200 pumps)
Frazer, PA
1-877-767-7373 or 1-877-937-7867
www.animascorp.com
Dana Diabecare (the Diabecare II)
New Orleans, LA
1-866-342-2322 (in USA)
Korean-designed, built and sold all over the world
www.danapumps.com
Deltec/Smith's Medical (the Cozmo and Cozmonitor)
St. Paul, MN
1-800-826-9703 (in USA)
www.delteccozmo.com or www.smiths-medical.com
UK-based, the Cozmo includes a coupled meter (the Cozmonitor) and Cozmanager computer software.
Disetronic Medical Systems, Inc. (former manufacturer of the D-tron and H-Tron)
Fishers, IN 46038
1-800-280-7801
Disetronic is now part of Roche Diagnostics. Their new pump, currently "in the pipleine," will be marketed as the "AccuChek Spirit." Roche will sell it; Disetronic will support it, as they do their D-Tron and H-Tron models. It's not available yet; we'll tell you more when it's available.
www.disetronic-usa.com
Medtronic/MiniMed (the Paradigm 515 and 715)
1-800-933-3322
Sylmar, CA 91342
www.minimed.com
Minimed's Paradigm series pumps link (by wireless RF) with a dedicated B-D blood glucose monitor, to ease computation of basal and bolus dose.
Nipro
1-888-651-7867 (in USA)
Miramar, FL 33025
www.nipro-diabetes.com
Osaka, Japan-based Nipro, a newcomer to the U.S. market, offers the Amigo II pump.
On The Way:
The AccuChek Spirit (Roche Diagnostics, mentioned above). Also, under the Aegis of LifeScan, Inverness Medical and Swiss R&D firm Debiotech have been developing a tiny pump that attaches directly to the skin, eliminating the long cannula. Researchers report they plan "to make their pump the size of a credit card." The new mini-pump will require a concentrated insulin not yet perfected. No name has been put forth for the mini-pump, but notes about it are already on the Internet.
Although many blind people successfully use insulin pumps, no pump manufacturer to date has embraced the need to create a tactile or talking insulin pump designed to ease independent nonsighted use. The technology exists; all that has been lacking is manufacturer interest. We, the Diabetes Action Network of the National Federation of the Blind, have been actively lobbying manufacturers to create such equipment.
The insulin pump is an amazing device. If you have type 1 diabetes, and need to use insulin, the pump best approximates the function of a healthy, non-diabetic pancreas. Can a blind diabetic use it, fill it, program it, attach it, independently, without sighted aid? Absolutely.
As I said, there are still people who believe otherwise, and some who just don't know. Who are the "experts" in this case? The blind pumpers who are doing it for themselves. Here's what they had to say about their pumps:
Why should a blind diabetic consider the insulin pump?
Susan Stewart, a blind pump user from Medina, Ohio, says: "I've always wanted to be on the pump; it was a convenience thing. The pump gives me more flexibility. If you're considering an insulin pump, definitely really look into it, because it has given me independence and freedom ..."
Tammy Rupp, a blind pumper from Carrolton, Georgia, says: "The good thing about the pump is you can be really flexible. You don't have to be on a schedule. You can be, but you don't have to be."
Sally York, a blind pumper from Castro Valley, California, and past Board Member of our National Federation of the Blind Diabetes Action Network, says: "My MiniMed insulin pump has given me back my independence. I can't imagine going back to life on multiple injections. I can honestly declare my pump has given my life a positive boost."
What specialized techniques do you use to manipulate the pump without sight?
"With respect to filling the syringe," says Tom Tobin, a blind pumper from Cleveland, Ohio, "I have developed a system that works well without any sighted assistance. First, when filling the syringe, I pull down on the plunger until the bottom of the syringe barrel and the plunger are about the distance from the tip of my index finger to my first knuckle; so as a measuring device, you always have your knuckle.
"Then, as with a regular syringe, I tap the sides of the syringe barrel and then push the insulin back into the vial. I repeat this step until I cannot hear any 'bubbles' escaping when pushing the insulin back into the vial; there should be a 'smooth' sound.
"Next, since air may trap at the top of the syringe itself, I pull a little air into the syringe and push up on the plunger ever so slightly until insulin comes out the tip of the needle; just a little push. That completes filling the syringe.
"Next, while holding the syringe in my left hand, I take the infusion tubing and remove the cover at the end of the tubing that goes over the neck of the syringe, where the needle once was. Make sure there is a snug fit as you tighten down the collar of the infusion set over the neck of the syringe. (I sometimes use my teeth to make sure it is really tight.) Then I put the plunger of the syringe on a flat surface, usually a table top, and begin pushing down on the barrel of the syringe, thus filling the infusion set. I want to stress, this should be done very, very slowly to avoid any pocketing of air in the tubing. If it is done right, there should be no air bubbles at all in the tubing. Letting a drop fall on the back of your hand is fine, although I put the needle guard at the other end of the infusion set between my teeth, and use my tongue to feel when the drop falls. Whatever works for you."
Tom Ley, from Baltimore, Maryland, a blind pumper and former president of our NFB Diabetes Action Network, says: "The process of filling my Mini Med 507 C pump with a fresh supply of insulin can be performed successfully by a person using non-visual techniques. I will cover the subject of inserting the cannula into the skin and securing the cannula with tape. Let me say, at the beginning, that not once in my two years of experience has the cannula ever crimped or otherwise unsuccessfully seated itself under the skin when being implanted. I also find this aspect of the process very easy non-visually.
"It is much like giving a shot in many ways. Once the needle is inserted into the skin, a piece of special tape is used to hold the cannula in place. The tape is designed in such a way that is extremely easy to position correctly without yet exposing the sticky side of the tape. Once the tape is in place, three pieces of paper that cover the sticky part of the tape must be removed. The pieces of paper are pre-folded and shaped by the factory to make locating and removing extremely easy.
"Then, the final step is to remove the needle from the Teflon cannula. One simply must locate the large plastic end of the needle protruding from the skin through a hole in the tape, twist it a quarter of a turn, and pull out to remove. It is possible the cannula might crimp as it is being inserted. However, it is standard operating procedure to check your blood sugar an hour after changing the pump set. If the sugar is abnormally high, then a set of procedures should be followed to remedy the situation. This is no different than what a pump user does any time blood sugars seem unusually high. As said earlier, in two years, I have not yet experienced any problems of this nature when changing my pump set."
"One of the first things I learned was to line up my insulin bottle with the needle and syringe that holds the insulin in the pump," says blind pumper Donna Blake, from Waterbury, Connecticut. "This may have not seemed like much but at that time, I had never seen a Count-A-Dose (tactile insulin measuring device that enables blind people to accurately measure insulin without sight), nor had I heard about any alternative techniques for taking care of insulin and blood sugar needs.
"After I got the syringe filled, I devised a simple way to connect the syringe to the tubing aseptically (in a sterile manner). I placed my thumbs together guiding the hub of the syringe into the Leur lock of the tubing. I drew the syringe back two fingers' width and this gave me the correct amount of insulin for three days. Next, I realized I had bubbles that I did not know about, so back I went to step one. I found by pushing the insulin in and out of the bottle several times (gently), I could eliminate almost all the bubbles--most of the time, all the tiny bubbles.
"In order to ensure that all the air was out of the syringe, I would lightly tap the syringe on the side of a table to bring the bubbles to the top. Then I took the syringe, pulled a bit of air into it, reinserted the needle into the bottle of insulin and shot out the air. I then tapped the needle on the side of the table and pushed the plunger until a few drops of insulin came out (you can really smell the insulin). I connected the tubing and the syringe. I held the syringe and the first few inches of tubing upright and slowly depressed the plunger so the insulin filled the initial portion of the tubing without bubbles. I continued pushing insulin through the tubing until I felt a drop fall out and hit the back of my hand.
"I was almost ready to insert the needle/catheter. I began this stage of the procedure after a shower where I scrubbed the site, where the catheter was placed, thoroughly with soap. I dried this area off with a clean towel, separate from my other towels. Next I prepared the site with a liquid spray called "Sween Prep," a protective skin coating that keeps me from having an allergic reaction to the adhesive placed over the catheter site. While this stuff dried, I placed the syringe in the pump and primed two units of insulin through. This step ensured that the syringe inserted snugly within the pump and I did not miss any dose of insulin.
"When my site was ready to receive the catheter, I inserted the needle just like anyone else with diabetes does giving an injection. After I inserted the catheter, I pulled out the small (25-gauge) needle and placed a protective tape over the catheter and now I could go for about three to four days."
What adaptive features are there to help you?
"It has a tone-activate button," says Tammy Rupp. "You press it, and it has a tone, and you count the tones for each unit you need, to get your insulin bolus. Mine goes in whole units; it can go in half-units, too. And it will automatically count it back to you so you can check it.
"There's also a select button that you use with the activate button, to clear the pump's alarm, if it goes off. There's an alarm for "low battery," for if something's wrong with the infusion set, or if the pump is out of insulin. It beeps six times when you're out of insulin."
Blind pumper Anne Whittington, MBA, MSN, RN, CDE, from San Diego, California, says: "Initially I was on the MiniMed. I found the buttons cumbersome (with my rheumatoid arthritis) and the contrast poor on the screen. In 1993, I switched to the Disetronic pump. The audible alarms and crisp contrast met my needs well."
Susan Stewart says: "My insulin pump has a screen, which I cannot read, that shows date and time, and when the alarm goes off, it tells what the alarm is for. It has four buttons, and one of them is the 'select' button, with which you select whatever screen you want. I use it by counting. Once I hit the activate button, it beeps. And it has the up and down arrows. When I do a bolus before I eat, I push the button. Say I want ten units; I'll push the button up; it'll be 20 beeps. Then I push the activate button again, and it will replay the number of beeps, each 1/2-unit of insulin, that I selected. Another push on the activate button, and it will start giving me the insulin."
What about the cannula? Does it bother you? Is it safe?
Veronica Elsea, a blind pumper from Sylmar, California, says: "The insulin is delivered through a needle or cannula, which is placed anywhere you'd give an injection with a syringe. I only use my abdomen; I find it easier and more reliable. I use a Teflon cannula called 'Tenders,' made by Disetronic. I find them easy to insert and very forgiving. In fact, if you have any neuropathy in your hands, you may actually find these cannulas and cartridges quite a blessing, as they're fatter and larger than regular syringes. The 'Tenders' are inserted at an angle, anything up to 45 degrees or so. I just hold it at a slant, push it in and don't worry about it! As you might expect, once you insert the cannula and remove its insertion needle, it is held in place with tape. With the 'Tenders' infusion set, the tape is part of the cannula, so I no longer find myself holding something in place while searching for a piece of tape somewhere on a table! It's designed for one-handed operation by a sighted person, which means we can do it easily and comfortably with two.
"Only once, during an exuberant 'good morning,' did my guide dog reach up and catch her paw in the tubing. It's a weird feeling when you catch the tubing on something, but it takes real effort to knock out the cannula."
"I'm not afraid the catheter would fall out," says Susan Stewart. "I use three pieces of medical tape holding it in, and never in the months I've been using it has it come out, unless I mean to, when I'm taking it off. You have to really tug on it sometimes to get it off--the tape is very sticky. Although there's no alarm that would sound if it fell out, you would definitely know--you would notice. For one, my shirt would be soaked with the insulin!
"Once you get used to wearing the cannula, and to the need to rotate it, you can tell if something's wrong. I can tell if the tape's loose. Usually on the third day, the tape gets a little looser than the first or second days, since you've taken three showers since you attached it."
"I can honestly say I feel practically no discomfort at all from the cannula that delivers my insulin," says Tom Ley. "I find its presence far more comfortable than taking four insulin injections per day."
Do you have any advice for blind diabetics who are considering
the insulin pump?
"A lot of people say to me, 'Oh, I want the pump and I don't want to get injections anymore,'" says blind pumper Tricia Kline, from Doylestown, Ohio. "They think the pump is the easy way out. And I would say, unless you have the commitment to continue, if you think all you have to do is get a pump, and then you can eat anything you want to, that you don't have to do this and that, and you don't have to do blood sugar testing, unless you are committed to do that and really work at it, you won't succeed with the pump. Its not 'less work.' Sure, some people think you throw out your injecting needles and that, but it's still a big commitment. And unless you're willing to do that, and willing to, and have the confidence to do your own adjustments, you won't succeed with the pump. You have to develop, with your doctor, a sliding scale; like 'if my blood sugar is this much, then I take this much insulin, or if it's low I take this much less.' You get to know your body. But unless you're willing to gain this much confidence in yourself to be able to make these changes on your own, you will drive your doctor crazy."
Anne Whittington says: "Before selecting the company with the best pump for you, consult your diabetes management team members. These team members go beyond your doctor, and include your nurse dietitian, blind rehabilitation specialist, and whoever else may be assisting you in learning about the pump and its day-to-day operation. Also, please speak with customer service representatives from the major companies before you select a pump. Explain to them your needs as a blind person."
"With the MiniMed pump at my side," says Tom Ley, "I'm eagerly beginning a new phase of my life with diabetes. After 25 years, I welcome days free from insulin injections. I'm excited about the prospect of fewer high and low blood sugar incidents, and I will enjoy my new mealtime flexibility immensely. I'm comfortable, confident, and content."
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THE ASSIMILATION OF CRISIS
by Marc Maurer
Crisis is possibility made manifest. Inherent in crisis is potential change -- large or small, positive or negative, welcome or disheartening. Without crisis, incremental change can occur, but fundamental alteration in a political system, a structure of belief within a culture, or the functioning of an institution, comes only when forces have been so concentrated in opposition to one another that the balances within the social fabric can shift. We call this moment "crisis." Crisis is often associated with disaster, but it can also portend positive transformation.
We in the National Federation of the Blind have been facing crises throughout our history. The first of them occurred at the formation of our organization in Wilkes-Barre, Pennsylvania, in 1940. We proclaimed to all who would listen, but also to ourselves, that matters involving the blind would change, because we would make them change. Before the founding of the National Federation of the Blind, blindness had meant (although there were notable exceptions) inability, immobility, and inferiority. The solution to the problems of the blind was to restore vision. Otherwise blind people were almost always written off. This was true even though schools for the blind existed, sheltered workshops for the blind had been created, many states had established programs to serve the adult blind, and the Randolph-Sheppard Program to provide vending opportunities for blind people had been brought into being. One bright spot was the growing program to provide books to the blind through the Library of Congress.
Part of the crisis at our beginning was one of confidence, and it was one of our own making. Would we have the internal fortitude to sustain us in the effort to bring others to believe what we said we believed about blindness? Blind people have capacity, and we expect it to be recognized. The problems of blindness can and must be solved, and one of the elements of that solution will be the blind themselves. We intend to take a hand in our own destiny. All this was part of the founding of the Federation. The presentation of Dr. Jacobus tenBroek, our founder and first president, to the inaugural gathering of the Federation was clear and direct -- it left no doubt that the organized blind would speak and act for the blind of the nation.
At the beginning, the National Federation of the Blind was mostly ignored, but we persevered. When it became clear our organization (and our philosophy) would play an active part in the field of work with the blind, a second crisis occurred. This was a crisis of fear and repression, led by a few hidebound administrators of programs for the blind, who felt threatened that the blind should seek to speak for themselves. Dr. tenBroek spoke to our convention in 1957 saying, "The National Federation of the Blind stands today an embattled organization. Our motives have been impugned; our purposes reviled; our integrity aspersed; our representative character denied. Plans have been laid, activities undertaken, and concerted actions set in motion for the clear and unmistakable purpose of bringing about our destruction. Nothing less is sought than our extinction as an organization." Despite the concerted action reported by Dr. tenBroek, the Federation survived, and in the long run it gained strength.
The first crisis confirmed in us the conviction that we could speak and act on our own behalf as the unified voice of the blind. The second crisis made us recognize we would continue to exist, making our own plans, thinking our own thoughts, expressing our own views, and bringing inspiration to the field of work with the blind, regardless of opposition. The crises that would come in the decades to follow would teach us much about the strength that comes from maintaining the independence and self-expression that are essential to the organized blind movement.
These first crises made us know that the possibilities for change are inherent in uncertainty, that we can manage the uncertainties when they come, and that if we intend to achieve altered possibilities for ourselves, we must help them come. Living with uncertainty is never easy, but living with the positive guarantee of discrimination and lack of opportunity is worse. We can solve the problems faced by the blind, and we must and will have change. To those who believe blindness means immobility, inability, and inferiority, we say this: we are on the move; we are equal to the challenges before us; and nothing on earth can hold us back. If change comes through the instigation of crisis, we demand - we insist upon - crisis!
Just as the uncontrolled combustion of hydrocarbons can wreak havoc, so can the unmanaged crisis. We do not seek chaos, but only the uncertainty that permits positive alteration of the fundamental belief system in our society. We want our crises to fuel advances for us in much the same way the energy contained in a rocket engine lifts a payload into space. But make no mistake, despite the uncertainty, despite the risk, and despite the opposition, we will seek the critical points of change. With risk, there is always opportunity. Our obligation is to make those opportunities real for blind people everywhere.
We will manage the crises that come, and we will use the power they possess to create independence. If we manage uncertainty well and if we believe in the potential for change that exists, nothing can hold us back, and tomorrow belongs to us!
At the heart of Federation philosophy is the proposition that the problems blind people have can be solved. How do we do it? Begin with a dream of the time when the opportunities we seek are within our grasp. Describe the characteristics of this time, and imagine the differences in public attitudes about blindness, in training programs for the blind, and in the determination of the blind to participate fully in society. Consider what technologies are needed for the advancement of the blind. Discuss the hopes and dreams for the future with others so they can catch the imaginative spirit and add details to the description. Contemplate what steps must be taken to implement the pattern or parts of it. Find methods to challenge the assumptions that tell us these things are impossible. Hunt the means (both financial and otherwise) to initiate new activities. Invite like-minded sighted people to join with us in an effort to inaugurate new methods of thought. Take a leap of faith to create new programs or new systems or to build the technologies required for easy integration of the blind. These are the elements for the instigation of crisis.
When the crisis occurs, do not lose heart. Face the uncertainty, and press forward until what we have considered in our wildest imaginings comes true. Dream; have faith; build; and share the spirit. This is the National Federation of the Blind!
Last April [2004] (only a few months ago), Dr. Raymond Kurzweil, the man who built the first reading machine for the blind, and who has been hailed as a restless genius, spoke at a technology conference for technology trainers held at the National Federation of the Blind Jernigan Institute -- the first organized activity, other than the grand opening, to occur in our new building. Dr. Kurzweil said that as computers become smaller and more powerful, the capacity they have will be integrated into human systems. He said our memories will be enhanced by the total recall that is part of computers. He told us tiny repair systems will be released into our bloodstreams to take steps to improve our medical conditions. He speculated that mechanical information-gathering techniques will supply data to computers, and the information so gathered will be present in our consciousness. He did not say mechanical vision will be created, but his comments implied some form of artificial vision will likely be available.
Many blind people are waiting for their vision to be restored. Their approach to blindness is to hope somebody will find a miracle. When I was a boy, I heard many grownups tell me medical science might find a cure for my blindness. Maybe so, I thought, but it doesn't look as though it will happen any time soon, so I guess I won't count on it. As I've thought about it, I haven't changed my mind. I don't have anything against waiting, except that it takes so long, and it seems so dull.
In the National Federation of the Blind we do not wait; we plan for tomorrow; and we work to build the programs that will give us the chance to use the talents we possess. If we find ways to enhance our information-gathering techniques or to improve our lives in other respects, we will use them. In the meantime we will use the techniques at hand, and we will work with others to develop new ones, or we will devise them ourselves if we need them. It is not visual acuity or physical prowess or appearance that determines what we are (though these have their place), but the spirit of independence, the determination to make a contribution, and the will to overcome whatever obstacles may exist. The mind-set that waits for a miracle is passive, but we are not. We will not have our talents and abilities ignored or forgotten, and if positive change can be had only through crisis, we will instigate the change to precipitate the event. The independence that comes with change must be ours, and we will permit nothing to prevent us from achieving it.
With great opportunity, great risk must be expected. We are facing today one of the greatest challenges that has ever existed for us, though no apparent disaster looms in our immediate future. What we do to address this challenge will have an overwhelming impact on our future.
During much of history, blind people have not only been ignored, but almost unobserved. Research on blindness has been conducted by somebody else, and we have been the subjects, who were sometimes quantified, but rarely questioned. Our views have not been sought, because it has often been thought that our intellect, our training, and our experience were irrelevant. Even when one of us invented Braille, the communication system that is used by the blind throughout the world today, the teachers and administrators of programming for the blind resisted. (Some of them are still resisting.) Invented in France by Louis Braille in the 1820s, Braille was not adopted as the reading system for the blind in his own country until after Louis Braille's death in 1852. When Braille was introduced in the United States, officials at the New York Institute for the Education of the Blind, led by Superintendent William Bell Wait, thought they would improve on the system. They invented New York Point, a dot writing system with a cell two dots high and up to four dots wide. Braille, the invention of the blind, according to the officials at the New York Institute for the Education of the Blind, was not good enough; it had to be improved by administrators.
We have been working diligently to change the pattern, and we now intensify the effort. We ask not only that the blind be observed, but that we be consulted. We insist the problems of blindness must be addressed, and not just superficially, and we insist we be included as an essential element in addressing them. To advance the processes of interaction and exploration, we have created our own institute, named for our beloved president, Dr. Kenneth Jernigan, who was the greatest builder of programs for the blind of the twentieth century. We must be a part of the acquisition of knowledge, not just onlookers; our inventive genius must be a vital element in the planning and in the direction of research on programs and products for the blind. We are outlining the programs of research, of training, and of inventiveness that we think have the greatest potential.
However, there are dangers in what we do. One of these is that we the blind will place more faith in the technology than we place in ourselves. Sighted people already ask for the miracle device or the magic system that will make blind people like sighted people.
It is not the technology that creates our ability but our own minds and hearts, and we must not be misled into thinking the machines are more important than we are. We will use the new technologies and the innovative programs of education, but these will not change our fundamental being. We have already determined what the blind will do, and we will accept no argument that tells us we lack the capacity to be an integrated part of the society in which we live. We are the blind: imaginative, articulate, determined, persistent, and productive. We will not let anybody forget it.
The speed at which technology is advancing has advantages, but it also has its dangers. As knowledge is gained, its relative importance has to be assessed; and when evaluations have been made, it must be assimilated into the social consciousness. Although facts themselves may be neutral, the underlying assumptions that integrate facts into a pattern of knowledge are not. The preconceived stereotypes about the inability and inferiority of the blind may as easily be at the base of new research on blindness as the demonstrable reality that the blind have the same fundamental abilities as anybody else. The speed for gathering facts has increased, but this does not signify that the way these facts are used is any better than it has been in former times. If the assumptions about us are as bad in interpreting today's research as they have sometimes been in the past, the faster we get new conclusions, the more problems we will have.
Beyond all this, new information will seem better than the older generations of knowledge because it's new. A tendency will exist among some people to accept the newly devised product or the newest theories without critical evaluation. Already blind students are frequently told they need not learn Braille or some of the other established alternative techniques for the blind because more up-to-date technologies make these older techniques obsolete. Sometimes we are told Braille is slow and cumbersome and that the long white cane is less effective than newer electronic travel aids. Using white canes and reading Braille are said to be stigmatizing to the blind -- not the liberating experiences we know them to be.
Furthermore, with the development of new programs for the blind, many students on college campuses are taking less initiative in managing their own programs than they did in former times, leaving the scheduling of readers, the acquisition of technology, the procurement of books, and the negotiation with professors to the so-called experts, the administrators who run the programs. These administrators have access to technology, which is both expensive and complex. Students who need this technology must meet the requirements of the administrators. Sometimes the technology is used as a lever to induce the students to fall into line and behave as others demand.
Of course this is not true in all programs or for all administrators, but it is an observable pattern in some of them. When the administrators tell the readers what to read for the blind and the bookstore personnel and the technology vendors what to sell to the blind and the professors how to teach the blind, they run not only the programs to serve the blind but also the blind themselves -- they become the custodial caretakers of the blind.
Most assuredly we do not oppose the development of new technology or new training programs for the blind -- we are in the midst of such development ourselves, and we often urge others to pursue such endeavors. However, the blind have a responsibility to be a significant part of such development. If blind people are not at the center of designing and promoting programs and products for the blind, these programs and products may help emphasize negative stereotypical thinking about blindness. This cannot be permitted; we must prevent it.
Technology will not be used against us, for we will not let it be. Our objective is always the same: self-sufficiency and independence for the blind. If there is no other way, we will stimulate a crisis.
One other element of the challenge we face is growth. As we diversify our activities, take on additional responsibilities, and increase our staff, we must not alter our focus. Because of our increased real estate and staff, some people will think of the National Federation of the Blind as the National Center for the Blind or the National Federation of the Blind Jernigan Institute, but this is not what we are. Our primary goal is to serve as a means for the blind to take concerted collective action. Our policies are set by the blind, and the hopes, the problems, the experiences, and the spirit of individual blind people from throughout our movement must be incorporated into everything we do. We are not creating yet another entity to provide services for the blind; we are the blind building a movement controlled by the blind, directed by the blind, owned by the blind, serving as the collective expression of the blind.
Because the blind run the Federation, we can undertake any activity with equanimity; the good judgment of the rank and file membership will ensure we stay on the right track. The Convention is the supreme authority of the Federation; it is the blind organized from throughout the nation. The Convention directs our efforts, determines our policies, and serves as a check and balance system for the officers it elects. This is the fundamental democracy of the National Federation of the Blind.
The popular myth is that inventing technology is good, and inventing technology to help the blind is even better. However, consider the results when the inventor is completely without information about the blind people for whom the invention is intended. An article titled "Good Vibrations: Shoe Helps Blind to Walk," written by Susan McMahon, a staff member for the SUN, a newspaper from Lowell, Massachusetts, has been circulated around the Internet and published in various places within the last year and a half. This article describes the project of an engineering student to create a mechanical travel aid for the blind -- specifically, shoes for the blind that incorporate vibrating motors. Do these motors help the blind walk faster or jump higher? No, their objective is more limited. The motors vibrate when the shoes get near something the wearer might bump into. These special shoes for the blind were invented so blind people would no longer need to carry white canes. Some of what the article tells us is so bizarre that it is hard to believe, but let the article speak for itself. Here are excerpts from the text:
"The shoes look innocuous enough, black with wires and gadgets glued and Velcroed across the faces.
But put them on, and walk around, and suddenly the walls of the shoes begin to shake. Get a little closer to that couch, and they shake faster. Move around, and the vibrations move to different parts of the shoe.
"Designed [the article continues] by recent UMass Lowell graduate Richard Namay Castle as a way to assist blind people, the shoes work by transferring objects from a visual plane to a vibrating one.
"The infrared sensors can detect things from a meter away.
"The model is only a prototype, but Castle hopes to find a possible buyer and then develop more sophisticated shoes. For a blind person, the new and improved shoes could provide a way to get around, without a walking stick or seeing-eye dog.
"Then, rather than using a cane around the house, a blind person could rely on the shoes to tell him where a doorway or the coffee table is located.
"If the prototype moves to the final stages [the article continues], Castle hopes to create some kind of sensor that would detect when the wearer is walking down stairs.
Currently, drops in elevation are not registered on the shoes." [Although they may be registered on the blind person, especially if they happen unexpectedly -- but I admit I added this last bit myself.]
These are excerpts from the article about the inventor of the special shoes for the blind. The images portrayed give a whole new meaning to the expression "shaking in your shoes."
But I think this inventor has only scratched the surface. What might blind people learn from expanding this technology to other items of clothing and to other parts of the body? The vibrating hat, the vibrating shirt, the vibrating pair of trousers might all be employed. In an information-rich environment, the blind person might jiggle all over, wearing the innovative vibrosuit for the blind. Vibromotors could transmit information by Morse code or in combinations of Braille dots on this or that part of the anatomy. And just imagine, if a blind person were looking for a chair, and one came into the immediate vicinity, there could be a special vibration to guide the blind person to the correct location -- right in the seat of the pants. When the vibration is strong enough, and centered, sit down.
What a ridiculous bunch of nonsense! Has this engineer met any blind people? Has he formed the opinion that we don't already know where the couch and the coffee table are in our own houses? Does he think we are idiots?
The vibrating instrument that gives data to us is not new; many of them provide valuable information. However, putting vibromotors into our shoes so we can find the couch is beyond the mine-run of nutso ideas that blind people often have to face. If we depend on inventors like Richard Namay Castle, the future for us is bleak indeed.
But of course we will not depend on him or his uninformed ilk. We will reject his research and his peculiar summation of our incapacity. Beyond that, we will tell him in no uncertain terms he must not foist upon us his ignorance or his prejudice. We need new technologies, but not vibrating shoes. We have already found the couch, and we are now looking for something else -- something like business success, political capacity, or high adventure. Our aspirations are much expanded beyond the vibrating shoe and beyond the environment in which it is depicted. We will not let the engineers tell us our lives are circumscribed, that our mobility is limited to the couch and coffee table, or that we need them to help us learn to walk down stairs. We expect to be observed, but also to be consulted, and if we are not, we will precipitate a crisis.
Our experience tells us blind people possess the normal range of wants and wishes, faults and foibles, aptitudes and abilities that others have. In our spoken and written language, we try to describe blind people as they are, not as others think us to be, or want us to be. Because language is the observable expression of thought, we have objected to simple-minded, pejorative, one-dimensional descriptions of the blind. We want to be depicted not through the single characteristic of blindness but as the multifaceted, interesting human beings we are. Are some blind people malevolent, parsimonious, duplicitous, avaricious, or indolent? Yes, but most of us are not. Some of us are also benevolent, generous, honest, charitable, and diligent. Some of us even possess prestidigitive powers with a capacity for feats of dexterous legerdemain. The reason we object to many of the descriptions of the blind of the past is that the authors describe their blind characters in terms of one primary characteristic alone: blindness.
In a misguided attempt to be "politically correct" (the politically correct would say "fair and just"), the supervisors of language appear to be attempting to eliminate the blind from literature. Because we quite evidently exist, this attempt will undoubtedly fail; but the effort to keep us out of the books will cause argument; confrontation; frustration; annoyance; and, to speak directly, anger. A book titled THE LANGUAGE POLICE, by Diane Ravitch, published in 2003, declares that certain words may not be used in textbooks intended for sale to public schools. With considerable insight the author points out certain dangerous trends in the publishing business. It is not only swear words that are forbidden but also terms that might have been used in connection with people with disabilities (not "the disabled," but "people with disabilities"). "The blind" may not be used at all. Instead, the euphemism "people who are blind" is to be substituted.
The list of disability-related terms, which contains 31 items, includes: helpless, passive, dependent, naive, segregated from mainstream society, victims, objects of pity or curiosity, sinister characters, saintly, laughable, endowed with magic powers, unproductive, sharing common needs or problems, burden to others, heroic, inspirational, invalids, patients, bitter, and sickly. These are some of the things (according to the language supervisors in the publishing houses) that cannot be said about the blind; so what can we say? If we are not passive, are we aggressive? If we are not naive, are we sophisticated, wise, or sly? The list tells us we are neither sinister nor saintly, leaving the impression that we are neither good nor bad but possessing only some nondescript character inbetween.
That the editors of textbooks have created such a list implies they believe authors and teachers will use these forbidden terms about the blind, and that (in the view of some) we really are helpless, passive, naive, and the like. The list also suggests textbooks must be sanitized, so the tender, impressionable minds of children are not twisted or injured by descriptions of the blind, or assertions about the blind.
But we protest. We are not trying to be kept out of society but included within it. We do not want blindness or blind people eliminated from the textbooks; we want them described in fluent detail. We do not want blindness hidden in a closet, but brought into the open for all to observe. Perhaps we should insist the word "editor" be removed from the language. We could sanitize the books by eliminating any reference to editors. Instead use the term "people with editing." Then we could write into the textbooks that people with editing are not helpless or naive or passive. If this is the way they would like to treat us, let us try it on them.
We will not have the blind categorized in a way different from everybody else, and treated as if we were pariahs, subject only to ostracism. We will not be forced to abide by special rules that insist we be depicted in a nondescript way. We will not have "blindness" or "the blind" expunged from the language.
This list of special rules implies others believe there is shame in being blind. We feel no shame, and we will not let others force their misguided understanding and the shame they feel upon us. We will tell it like it is, and we will glory in the energy, the vibrant character, and the multidimensional spirit we have. If we must, we will write our own books, demonstrating that the blind are as much a part of our cultural experience as anybody else. We will be observed as we are. But this is not enough; we will also be consulted about the way we are portrayed. We will do this in peace and harmony if we can-but we will do it. If necessary, we will precipitate a crisis.
In the course of the work I have done in the National Federation of the Blind, I have been in the homes of many thousands of blind people -- often at the kitchen table. Blind people from throughout the nation have told me about their lives and shared their hopes and dreams for a brighter future. They have also described the obstacles they have sought to overcome and the privations they have faced. Often our work is intensely personal, fraught with frustration, intermixed with trials, and occasionally adorned with triumph. Some of our effort is directed toward technical matters, but much of the time we are working to instill an attitude of hope, of belief, of exploration. We distribute canes, encourage the learning of Braille, and discuss high-tech systems for getting at information. But we also concentrate on helping people understand that there is something for us, and with the proper training and the right spirit, we can get it. Can blind people obtain an education, establish homes, attract spouses, and raise families? Can blind people find employment, participate in social events, engage in political activities, and contribute in other ways to our society? Our answer to these questions has always been, and remains today, an emphatic and unequivocal Yes. I myself have been in the midst of our activities, and I have worked to bring hope and faith to others. In the bringing of these, I have reinforced my own hope and faith. The Federation is intensely personal, not only for others, but also for me.
As you know, my wife Patricia and I are both blind, and we have been blind all our lives. In 1984, our first child, David Maurer, was born. A significant part of our lives has been devoted to the raising of David and his sister Dianna, who was born three years later. The children have been a great joy to us and, of course, from time to time, a trial.
In January of 2004, Patricia and I faced a living nightmare that parents everywhere hope will never happen to them. At about five in the morning a neighbor knocked on our door to tell us David was in the hospital -- he had been severely injured in an automobile accident. We went immediately to the hospital, not knowing what we would find. David was unconscious, but he was alive. We asked the doctors if we could see him, and we prayed. Then came hours (that turned into days) of waiting, hoping, questioning, and more waiting. David was severely injured, but we did not know the extent of the damage. We knew his jaw was broken, but we did not know if there was injury to his nerves or his spinal column or his brain.
Eventually we learned that not only would David survive but that his mind would be all right and he would be able to move all his limbs-even his fingers and toes. We could help him return to the kind of active, productive life he had known before the accident. We are still in the process of the medical reconstruction, but David is coming along.
Inevitably when such things occur, the questions arise. What might have been done to prevent the injury, to avoid the accident? What was the failure that led to the damage? In the hours I spent in the hospital I had much time to think about what we have done and what we have shared with each other. The overwhelming impression from those times is one of love and caring and support. No life can be lived without adversity. What is needed is the strength to face it. Our colleagues and our friends in the Federation have helped us find that strength.
Inherent in the recommendation that blind people (or anybody else for that matter) live full and productive lives is the reality that something may happen to disturb the tranquility of those lives. However, without the risk there can be no joy. You have helped us face the risk, and we share much joy. I thank God for preserving David's life, and I thank God for something else. If He had not given me the opportunity to be in the Federation, I might not have had the courage to believe a family could be mine and I could share the responsibility for raising children. It is a great gift, and I am immensely blessed.
As we gather tonight in our thousands at this banquet, the prospects before us are enormously bright. We have a monumental challenge to meet, but nobody is better suited for it than we are. Knowledge gained is useless unless it is put to work. This concept demands that it be assimilated into the thought processes of the culture. Although the speed at which knowledge is being gained today is extremely high, the assimilation of this knowledge has not kept pace; at least it has not for the blind. We ourselves must learn what we can and serve as the agent for assimilation of knowledge about blindness.
Some blind people are still waiting for their sight to be restored, some inventors are still creating oddball gadgets like shaking shoes they tell us we need, and some editors are trying to prevent the blind as an organized group from being recognized in textbooks. But most of the blind are active, most of the inventors are listening, and an increasing number of the editors are getting the message that the blind will not be segregated. Our experience has taught us we have talent and the capacity to give. We must now help others to assimilate this knowledge -- we must teach them what we know.
Part of our responsibility now incorporates the development of research and training programs. We intend not only to be observed but also to be consulted, and we must be prepared to show the teachers what we have learned. This, too, is part of our task as the agent for assimilation.
As we take these steps, we will meet uncertainties and take risks. If we do our work well, along with the uncertainties will come positive alterations and along with the risks will come enhanced opportunities for the blind. Nobody else can meet this challenge -- nobody else has the personal interest, the talent, or the will. If we fail, the blind will drift back into obscurity. But we will not fail. We are on the move, and we will not turn back. We are filled with a fighting spirit; we will not waver or equivocate; we have the imagination, the perseverance, the strength, and the guts to take whatever action is necessary for freedom. When the challenges come, we will meet them. When the obstacles arise, we will surmount them. We have kept faith with our blind brothers and sisters of the Federation throughout the decades, and we have an unquenchable determination to bring equality, self-esteem, and independence to the blind of this generation and the next. Change will come because we will make it come--slowly through negotiation or quickly through crisis -- but it will come. This is our decision; this is our commitment; this is our declaration.
Join me, and we will make it come true!
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DIABETES VACCINE CLINICALS IN SWEDEN
Sweden's Diamyd Medical has begun a Phase II clinical study of their investigational medication Diamyd. Involved are 70 children and adolescents who have recently succumbed to insulin-dependent, type 1 diabetes. The study is to investigate if these individuals' remaining pancreatic insulin-producing beta cells can be saved through two immunizations of Diamyd. If the "vaccine" works, it could lead to remission of disease, i.e., that the requirement for external insulin injection is minimized or removed entirely.
Data from the company's recent clinical trials with Diamyd indicate vaccination allows protection of the insulin-producing beta cells from destruction by the immune system. This then permits recovery of beta cells and their survival, which should in turn reduce the need for use of external insulin supplementation. Caught in time, dosed with Diamyd, diabetes starts but does not fully develop. This is the hypothesis, and the hope.
The multi-center study is located at sites across Sweden. The study's head is Professor Johnny Ludvigson. Patients included in the study are children and adolescents between 10-18 years of age who have not been diagnosed with diabetes for longer than 18 months. The study is double-blind, random and placebo-controlled.
"This type 1 diabetes study in children and adolescents could represent a breakthrough for antigen-specific treatment of autoimmune diseases. If it is successful, it could completely change the treatment of insulin-dependent diabetes. Instead of daily injections, for the rest of their life, we will instead be able to inject patients just a couple of times, a significant improvement in quality of life for the children," says Diamyd Medical's medical chief Dr. Ann-Sophie Bennet.
Diamyd Medical is also conducting a pivotal Phase II/III clinical trial of type 2 diabetes patients with GAD-specific antibodies (so-called LADA patients). Over 2000 have applied to be part of this study; 160 will be selected. A few of these have already received the first treatment. In an earlier Phase II clinical study of 47 LADA patients, an effective dose of diamyd was identified, and is now used in both the new studies. Professor Carl-David Agardh (Malmo Hospital) reported at the American Diabetes Congress, ADA, in June 2004, that two injections of 20mg Diamyd gave positive results, currently up to two years after treatment, with respect to both insulin production and blood glucose levels.
Remember, this research is ongoing. This medication, while promising, is investigational -- and it will be years, if ever, before we see it available at the pharmacy. Stay tuned; we at VOICE OF THE DIABETIC will let you know how the research is going.
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LOUISVILLE SITE OF 2005 NFB CONVENTION
The 2005 convention of the National Federation of the Blind will take place in Louisville, Kentucky, July 2-9, at the Galt House and Galt House East Tower. The Galt House West is at 140 N. Fourth Street, and the Galt House East Tower, or Galt House East, is at 141 N. Fourth Street, Louisville, Kentucky 40202. Our overflow hotel is the Hyatt Regency at 320 W. Jefferson Street, Louisville, Kentucky 40202.
The 2005 room rates are: singles, doubles, and twins $59; and triples and quads: $64 a night, plus tax. The hotel is accepting reservations now. A $60-per-room deposit is required to make a reservation. Fifty percent of the deposit will be refunded if notice is given to the hotel of a reservation cancellation before June 1, 2005. The other 50 percent is not refundable. For reservations call the Galt House at (502) 589-5200 or the Hyatt Regency at (502) 587-3434.
Rooms will be available on a first-come, first-served basis. Reservations may be made before June 1, 2005, assuming rooms are still available. After that time, the hotels will not hold their blocks of rooms for the convention. In other words, you should get your reservation in soon.
A covered pedestrian walkway connects the two hotels, and guest-room amenities in both include hair dryer, coffee pot, iron and ironing board, and dataport. Those who attended the 2003 convention can testify to the gracious hospitality of both the Hyatt and the Galt House. Our headquarters hotel has excellent restaurants, first-rate meeting space, and other top-notch facilities. It is in downtown Louisville, close to the Ohio River, and only seven miles from the Louisville airport.
The 2005 convention will follow what many think of as our usual schedule:
Saturday, July 2 Seminar Day
Sunday, July 3 Registration Day
Monday, July 4 Board Meeting and Division Day
Tuesday, July 5 Opening Session
Wednesday, July 6 Tour Day
Thursday, July 7 Banquet Day
Friday, July 8 Business Session
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DIALYSIS AT NATIONAL CONVENTION
by Ed Bryant
During this year's annual convention of the National Federation of the Blind, in Louisville, Kentucky (Saturday, July 2, through Friday, July 8), 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 social worker contact the desired location in the Louisville area for instructions, well in advance. NOTE: The convention will take place at the Galt House Hotel, 140 N. Fourth Street, Louisville, KY 40202.
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 SIX TO EIGHT WEEKS IN ADVANCE. THIS HELPS ASSURE A LOCATION FOR ANYONE WANTING TO DIALYZE. PLACES FILL UP QUICKLY. There are many centers in the Louisville area, but that area is quite large, and early reservation is strongly recommended -- to guarantee a place, and spare you a long taxi or bus ride. Here are some dialysis locations:
* Renal Care Group, Inc., 635 South Third Street, Louisville, KY 40202; telephone: (502) 561-1314. About �-mi. from hotel.
* Fresenius Medical Care, 720 East Broadway, Louisville, KY 40202; telephone: (502) 451-6788. About �-mi. from hotel.
* U. of Louisville Kidney Disease Program, 615 Preston Street, Louisville, KY 40202; telephone: (502) 852-5757 <and ask for Sue Nilest>. About �-mi. from hotel.
* DaVita Dialysis, 2269 East Charlestown Road, New Albany, IN 47150; telephone: (812) 542-1250. About 2 miles from hotel.
* Fresenius Medical Care, 525 Broadway, Jeffersonville, IN 47130; telephone: (502) 451-6788. About two miles from hotel.
PLEASE REMEMBER TO SCHEDULE DIALYSIS TREATMENTS EARLY, TO ENSURE SPACE. See you in Louisville!
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VOICE DISTRIBUTORS NEEDED
Since the VOICE is now offered free, our Diabetes Action Network will provide extra copies to anyone wanting to help spread the word. We will gladly send from five to five hundred-plus copies each quarter to be used as free literature. Medical facilities can order as needed for patients. Individuals can usually place copies of the VOICE in libraries, pharmacies, hospitals, doctors' offices, or other public locations.
Diabetes education is essential. Anyone who distributes the VOICE will be helping people with diabetes, and their families, to learn about the disease and its ramifications; to learn that they have options; and that their world is far greater than whatever "limits" may be imposed by the disease. If you would like to help spread the word by distributing the publication, please contact: Voice of the Diabetic, 1412 I-70 Drive SW, Suite C, Columbia, MO 65203; telephone: (573) 875-8911, fax: (573) 875-8902. NOTE: Please provide a phone number so we can reach you.
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BOOK REVIEWS
by Ruth Mencl, MN RN CDE
Diabetes Program Manager, Saint Luke's Hospital, Kansas City, MO
Two of the books I reviewed were quite similar. 1,001 TIPS FOR LIVING WELL WITH DIABETES and 487 REALLY COOL TIPS FOR KIDS WITH DIABETES are both titles I would highly recommend. They combine a patient perspective with medical information obviously gleaned from a variety of reputable sources, cited throughout both books. 487 also has the added ADA seal of approval. These books have invaluable pearls of wisdom that both patients and professionals could use, and I would recommend them for new endocrinologists and Certified Diabetes Educators.
Both books promote a healthy, positive attitude toward diabetes. They both address the need for support systems. I have not seen such "Living Alone" and "Special Problems" sections in other diabetes books, so 1001 is a unique resource. Having worked with both children and adults over 20 years as a CDE, these helpful hints help fill in the answers to myriads of questions that arise when you live with diabetes.
I agree with the forward of 1001, written by Harry Gruenspan, MD, who reminds patients that the tips inside should always be checked out with their physician if any major change is involved. I agreed with most of Ms. McQuown's tips; however, on one important one, I would beg to differ. People starting insulin should always see a CDE, RD at that time for at least two reasons. One, weight gain, is a common complaint when insulin is started without an updated meal plan. Second, and of paramount importance, is the risk of hypoglycemia related to meal timing and insulin dosing. Otherwise, Ms. McQuown's information is meticulously researched and she provides numerous fresh ideas to an ever challenging area. Her book is especially good at money saving tips. She even discusses coloring your hair as a way to reduce depression.
The young authors, Spike and Bo Loy of 487, make their suggestions with the help of a number of cool kids, a variety of ages, both male and female. The book promotes sports participation, and open communication about diabetes, to decrease myths and fear on the part of teachers and coaches. It also has a comprehensive insulin pump journal written for at a young person's lifestyle.
The authors include websites and other resources for the reader. Their approach to organization and preparation put them in the boy scout category for sure. The cost is well worth the investment in your child with diabetes, $10.17-$14.95 on Amazon, Borders and Barnes and Noble websites.
For parents with children who have diabetes, I would actually recommend both books. 487 covers kid issues from kindergarten through college and is written in a format geared to quick reading, an essential when you have kids. It does seem geared toward middle to upper class families with good support systems. I find that a bit of a weakness, since not every child has access to all those financial and family support resources. However, the tips from Judith McQuown fill the bill. She lists numerous websites related to children, school issues and special needs. Her cost-saving ideas pay for the cost of this book, which runs from $11.53 to $16.95 at all the above web sites.
Richard Bernstein, MD's The Diabetes Diet promotes his idea that the ADA and the AHA dietary recommendations are misguided and ineffective for treating diabetes. The recommendations in this book are outside-the-box, to say the least. I applaud Dr. Bernstein's current health status as described in his book but without references to back up the science, we have to rely on his anecdotal reports for evidence of his success.
His thoughts, about the benefits of monounsaturated fats, lean protein, and the need to avoid refined carbohydrates, do agree with the current cardiac philosophy. He departs from that philosophy with his ban on fresh fruits, and even on vegetables such as tomatoes and onions, which he says "have too much carb." He even considers high-fiber foods, such as whole grains, too high in carbohydrate, excluding another whole category of foods.
His recipes, many employing eggs, cheese and protein, typically average 10 ingredients per recipe. Most of the ingredients are readily available, however he does use Da Vinci sugar-free syrup frequently, which requires a mail order. The recipes look appealing; however, limiting oneself to only these foods harks back to the "low carb lifestyle" craze which is currently losing popularity. Dr. Bernstein's diet would be hard to duplicate outside your own home, thus severely limiting meals away from home.
He does address the "low carb" craze, and the frenzied marketing associated with these products. As we see the popularity of "low carb" diets decline, it was predicted that people wouldn't eat hamburgers without a bun for long. I would recommend this book only for those people looking for additional low carb recipes. As a way of life, the evidence is not there to justify the radical lifestyle change demanded by Dr. Bernstein. The cost is $16- $19.96 on Amazon and Barnes and Noble websites.
TASTE PURE AND SIMPLE, a cookbook by Michel Nischan with Mary Goodbody, is gorgeously photographed by Minh and Wass. Unfortunately, the cost of the cookbook reflects the cost of the ingredients, both in time and money. The concept of the book is organic, healthy eating, a cause honorable indeed. The author definitely delivers, as advertised on the book jacket, creative ways to use vegetable juices, olive oil and alternatives to dairy, or as our CDE dietitian, Barb Simpson, put it, "radical diet recommendations."
One major problem is that the book has no nutritional information on calories, carbohydrates or fat to guide the cook. The ingredients are both expensive and unusual, requiring trips to specialty stores. Two items, the green zebra tomatoes and ras al hanout, a Moroccan spice, were not even available at health food, or gourmet groceries such as Dean and Deluca. The author's frequent use of creamy corn sauce could create a problem for carb counters.
The recipes are also time consuming, considering the additional steps required to prepare a roasted vegetable stock or sweet pepper sauce, on top of the cooking time for the main recipe. Even my friend Sally, the gourmand who travels to Tuscany for cooking classes, did not perceive the time and effort as "worth it."
Another concern is, when using items like sea salt, or raw cane sugar, there is really not a benefit, they just sound healthier. I do applaud his efforts at creativity; but these recipes are really for a niche audience of individuals, or to be prepared by a professional chef for dinner out. I have eaten at the restaurant where Michel used to work, the W New York, a few years back, so I may have even sampled his cooking. I would not recommend this book for our typical patient with diabetes or prediabetes, who is looking for a quick, inexpensive way to eat healthy, tasty meals.
Available at Borders and Barnes and Noble ranging in price from $22-$35.
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RECIPE CORNER
This issue, all the following slow-cooker recipes have been reprinted from FIX-IT AND FORGET-IT DIABETIC COOKBOOK, by Phylis Pellman Good with the American Diabetes Association, copyright by Good Books (www.goodbooks.com). All rights reserved.
Barbecued Green Beans
Arlene Wengerd
Millersburg, OH
(Ideal slow cooker size: 3-4-quart)
Ingredients:
four slices of bacon
1/4 cup chopped onions
1/2 cup ketchup
two Tbsp brown sugar
brown sugar substitute equal to 2 Tbsp
two tsp Worcestershire sauce
1/8 tsp salt
four cups green beans
Instructions:
Brown the bacon in a skillet, and then break it into pieces. Saute the onions; use nonfat cooking spray. Combine ketchup, brown sugar, Worcestershire sauce, and salt. Stir into bacon and onions. Pour mixture over green beans; mix lightly. Pour into slow-cooker; cook on high 3-4 hours, or on low 6-8 hours.
Makes six servings. Per serving: Calories -- 98 (calories from fat 22) total fat 2 gm (saturated fat 0.7 gm), cholesterol 3 mg, sodium 386 mg, total carbohydrate 18 gm, dietary fiber 3 gm, sugars 9 gm, protein 3 gm.
Exchanges: Carbohydrate 0.5; Vegetable 2.0; Fat 0.5.
Turkey Breast with Orange Sauce
Jean Butzer
Batavia, NY
(Ideal slow-cooker size: 4-5 quart)
Ingredients:
one large onion, chopped
three garlic cloves, minced
one tsp dried rosemary
1/2 tsp pepper
2-lb. boneless, skinless turkey breast.
1-1/2 cups orange juice.
Instructions:
Place the onions in the slow-cooker. Combine garlic, rosemary, and pepper. Make gashes in turkey, about 3/4 of the way through, at two-inch intervals. Stuff with herb mixture, and place in slow-cooker. Pour juice over turkey. Cover. Cook on low setting for 7-8 hours, or until turkey is no longer pink in the center.
Makes four to six servings. Per serving: Calories 178 (calories from fat 8), total fat 1 gm, cholesterol 81 mg, sodium 53 mg, total carbohydrate 10 gm, dietary fiber 1 gm, sugars 9 gm, protein 30 gm.
Exchanges: Fruit 0.5; Very Lean Meat 4.0
Chili Nuts
Barbara Aston
Ashdown, AR
(Ideal slow-cooker size: 3-quart)
Ingredients:
1/4 cup melted butter
two 12-oz cans of cocktail peanuts
one 5/8-oz packet of chili seasoning mix
Instructions:
Pour the butter over the nuts in the slow-cooker. Sprinkle in the dry chili mix. Toss together. Cover. Heat on low two to 2 and 1/2 hours. Remove lid; set slow-cooker to high, and cook 10 to 15 minutes.
Serve warm or cool.
Makes 80 (1-Tbsp) servings. Per serving: Calories 56 (calories from fat 43), total fat 5 gm, cholesterol 2 mg, sodium 104 mg, carbohydrate 2 gm, dietary fiber 1 gm, sugars 0 gm, protein 2 gm.
Exchanges: Fat 1.0
Peanut Butter and Hot Fudge Pudding Cake
Sara Wilson
Blairstown, MO
(Ideal slow-cooker size: 4-quart)
Ingredients:
1/2 cup flour
1/4 cup sugar
sugar substitute to equal 2 Tbsp
3/4 tsp baking powder
1/3 cup fat-free milk
one Tbsp canola oil
1/2 tsp vanilla
1/4 cup peanut butter
Another 1/4 cup sugar
three Tbsp unsweetened cocoa powder
one cup boiling water
Instructions:
Combine flour, first 1/4 cup sugar, sugar substitute, and baking powder. Add milk, oil, and vanilla. Mix until smooth; stir in the peanut butter. Pour into slow-cooker.
Mix together second 1/4 cup of sugar and cocoa powder. Gradually stir in boiling water. Pour mixture over batter in slow-cooker; do not stir. Cover, cook on high for 2 to 3 hours, or until toothpick inserted comes out clean.
Serve warm, with ice cream.
Makes six servings. Per serving: Calories 197 (calories from fat 73) total fat 8 gm, cholesterol 0 mg, sodium 92 mg, total carbohydrate 29 gm, dietary fiber 2 gm, sugars 18 gm, protein 5 gm.
Exchanges: Carbohydrate 0.5; Vegetable 2.0; Fat 0.5
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HEALTHY HOME COOKING
by JoAnna M. Lund
Welcome back into my kitchen where the cooking is easy and the food is both healthy and tasty! Spring weather is almost here and I have even more cooking tips to share with you and a few more recipe makeovers that I've gladly recreated for others in the Healthy Exchanges way. So, while you're busy with your spring cleaning, I hope you save time to try some of my "common folk" healthy cooking tips!
Whenever you're making punch you might want to keep this easy trick in mind: If you want to keep the punch from watering down, just prepare a few extra cups, and make them into ice cubes. Then when you fill the punch bowl (or tall pitcher) with your punch, add the frozen cubes at the same time. This not only looks attractive, it helps to keep the beverage cold. Best of all, the punch doesn't lose its punch as the punch cubes melt. This works equally well with lemonade or any other cold drink you may wish to stir up.
Brrr, it's still cold outside, and it will be for many days to come. How about an easy and tasty way to stir up excitement into a filling but otherwise dull bowl of oatmeal? Forget the cream and sugar! Instead, stir in a tablespoon or so of raisins, a few slices of banana and a couple of tablespoons of sugar-free maple syrup. All at once, your taste buds don't seem so depressed about facing the bitter spring winds just outside the door!
Have you ever considered the use of fat-free salad dressings as a marinade for lean cuts of chicken, beef, pork, or even fish? It makes meat that otherwise could be on the tough side, due to lack of fat, into juicier fare. Just pour half a cup or so of the dressing into a shallow dish, and place your pieces of meat into it. Cover and place the whole thing in the fridge and forget about it for a couple of hours, or even overnight. Then, simply grill, broil, or pan-fry in a non-stick skillet for tasty and tender feasting. A few combinations to start you thinking: fat-free Italian dressing on fish; fat-free French on chicken; fat-free Catalina on pork; and fat-free honey-mustard on beef. Can't you just taste them in your mind already?
Dijonnaise is so good but also so full of fat. Did you know you could make it yourself? Your version will be fat-free, stirred up in less than 30 seconds, and will cost much less than store-bought versions.
How, you ask? By stirring up 1/2-cup fat-free mayonnaise and 2 tablespoons country-style Dijon mustard together. Use any brand you want for the mayonnaise and the mustard. Store it in a covered container for up to two months in the refrigerator. Anytime you want to jazz up a ham sandwich or a plain broiled hamburger, reach for Jo's Dijonnaise!
Tired of the boring, watered-down flavor of some reduced-calorie margarines? Then, stir up some great tasting Private Label Pasta Butter! I make mine by combining 1/2-cup reduced-calorie margarine, 1 teaspoon lemon pepper, 1/2-teaspoon dried minced garlic and 1/4-cup reduced-fat grated Parmesan cheese. Mix well and store in a covered container for up to two months in the refrigerator. This is wonderful, melted on hot vegetables, stirred into just about any cooked pasta or spread over reduced-calorie Italian bread.
Love onions but hate crying over them when chopping? Try peeling the skin off the onions under cold running water, then freezing the onions for about five minutes before chopping or slicing. By the way, when chopping onions for one dish, why not chop onions for two or three or more at the same time? Simply place 1/2-cup or 1-cup portions of chopped onions in freezer bags and toss into your freezer for later use. Frozen works wonderfully in cooked dishes, but start from scratch for uncooked salads.
Now for our Recipe Makeovers
JK of IA wanted me to remake this dish. It's perfect for brunches or when you have guests over for breakfast or even just for the family on weekend mornings!
Egg Casserole
Ingredients:
4 cups unseasoned dry bread cubes
1 teaspoon dried onion flakes
1 teaspoon dried parsley flakes
1/2 cups diced Dubuque 97% fat-free ham or any extra-lean ham
2 cups cubed Velveeta Light processed cheese
6 eggs or equivalent in egg substitute
2 cups fat-free milk
1 teaspoon prepared yellow mustard
1/2 teaspoon lemon pepper
Instructions:
Spray a 9- by 13-inch baking dish with butter-flavored cooking spray. Evenly arrange bread cubes in bottom of prepared baking dish. Sprinkle onion flakes and parsley flakes evenly over bread cubes. Layer ham and cheese over bread mixture. In a large bowl, combine eggs, milk, mustard and lemon pepper. Evenly spoon egg mixture over top. Cover and refrigerate for at least two hours, up to 20 hours. Bake at 350 degrees for 50 minutes. Uncover, and continue baking for 15 minutes. Place baking dish on a wire rack and let set for five minutes. Divide into eight servings.
Serves 8 - Each serving equals: 249 Calories, 8gm fat, 21gm protein, 23gm carbo., 910mg sodium, 1gm fiber;
Diabetic Exchanges: 3 Meat, 1 starch
AW, of CO, sent me a cake recipe to revise, now that her hubby has to watch his sugars. My husband, Cliff, raved and raved about how sweet this is, when he taste-tested it for me. You just may want to serve it for any special spring or summer occasion. P.S. What you really are making is a sugar-free angel food cake!
Angel Wings Cream Cake
Ingredients:
1 cup cake flour
1-1/2 cups Splenda Granular
12 egg whites
1-1/2 teaspoons cream of tartar
1 tablespoon coconut extract
1/4 teaspoon table salt
2 (4-serving) packages JELL-O sugar-free instant vanilla pudding mix
1-1/3 cups Carnation Nonfat Dry Milk Powder
2 (8-ounce) cans crushed pineapple, packed in fruit juice, undrained
1-1/2 cups Cool Whip Free
1/4 cup flaked coconut
Instructions:
Preheat oven to 350 degrees. In a small bowl, combine cake flour and 3/4-cup Splenda. Mix well using a wire whisk. Place egg whites in a very large mixing bowl. Beat egg whites on HIGH with an electric mixer until foamy. Add cream of tartar, 2 teaspoons coconut extract, and salt. Continue beating on HIGH until soft form. Add remaining 3/4-cup Splenda, 2 tablespoons at a time, while continuing to beat egg whites until stiff peaks form. Add the flour mixture, 1/2 cup at a time, folding in with a spatula or wire whisk. Spread batter into an UNGREASED 9- by 13-inch metal cake pan. Bake for 15 to 18 minutes or until top springs back when lightly touched. Place cake pan on a wire rack and allow to cool completely. In a large bowl, combine dry pudding mixes, dry milk powder, and undrained pineapple. Blend in Cool Whip Free and the remaining 1 teaspoon coconut extract, using a wire whisk. Spread mixture evenly over cooled cake. Evenly sprinkle coconut over top. Cut into 12 pieces. Refrigerate leftovers.
Serves 12; Each serving equals: 145 calories, 1gm fat, 7gm protein, 27gm carbo., 378mg sodium, 1gm fiber
Diabetic Exchanges: 1-1/2 Starch
I hope you enjoyed our time together in the kitchen. Remember, if you'd like me to revise one of your family favorites, so that it's healthier, send your request to: JoAnna Lund, Healthy Exchanges, PO Box 80, DeWitt, IA 52742. Also be sure to visit my website at www.healthyexchanges.com for more "common folk" healthy recipes to try. Until next time!
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INHALED INSULIN: IT'S STARTING TO LOOK LIKE A WINNER
(This article first appeared in the January/February 2005 edition of DIABETES HEALTH MONITOR. Reprinted with permission.)
Injected insulin was first used to treat diabetes in 1922. Since then, scientists have learned much more about insulin's chemical structure. Their knowledge has allowed them to tweak the insulin molecule and develop a variety of insulin treatments, such as intermediate-acting preparations.
Now another milestone appears within reach: Inhaled insulin is undergoing clinical studies that may lead to U.S. Food and Drug Administration (FDA) approval. This option would benefit people with type 1 diabetes, who can't survive without insulin therapy. It would also be a consideration for people who have type 2 diabetes, many of whom require insulin as the disease progresses.
Proof-of-concept studies
The road to FDA approval of a new medication -- or, in this case, a new delivery system -- is a long one. But two recent "proof-of-concept" studies have certainly helped inhaled insulin cover some distance by showing the product can indeed improve blood glucose control in people with type 2 diabetes.
Insulin with diabetes pills.
The first study involved 68 adults with poorly-controlled type 2 diabetes. Their hemoglobin A1c levels (reflecting average blood glucose levels over the previous two to three months) ranged from 8.1% to 11.9%. The American Diabetes Association holds that an A1c of less than 7% represents adequate blood glucose control. All study participants had been taking oral diabetes pills -- a sulfonylurea drug such as DiaBeta (glyburide), Glucotrol (glipizide), or Amaryl (glymiperide), and/or Glucophage (metformin).
Why weren't pills alone sufficient? As type 2 diabetes progresses, the pancreas produces less and less insulin. Diabetes pills either rev up insulin production or increase insulin's ability to help glucose enter cells from the bloodstream. But the pills can't do their job if the insulin-producing cells can't do theirs.
The study participants were randomly assigned to use either the new dry-powder inhaled insulin plus their regular diabetes pills or their regular pills alone. Those in the insulin group (32 people) inhaled 1 milligram (mg) or 3 mg of insulin before their three daily meals. This was the equivalent of approximately three units and nine units, respectively, of inhaled regular insulin.
After 12 weeks, A1c Values fell by 2.3% in the inhaled-insulin-plus-pills group; in the pills-only group (36 people), values fell by just 0.1%. Moreover, 11 people in the insulin group (34%) saw their A1c level fall to 7% or lower. Nobody in the pills-only group achieved that level.
Injected insulin comparison.
Another 12-week study that was carried out in Europe compared inhaled insulin with injected insulin in 107 people with type 2 diabetes. Both forms of insulin were the fast-acting human type. The inhaled insulin was delivered by the AERx insulin diabetes management system, which is designed to send an aerosol (spray) of liquid insulin deep into the lungs.
Participants were randomly assigned to one or the other form of insulin. The inhaled-insulin group members took their doses just before meals, while the injected-insulin group members took theirs 30 minutes before meals. Doses were first based on the participants' previous insulin requirements and then adjusted, if necessary. Both groups of participants also injected NPH insulin in the evening.
At the study's end, A1c levels were approximately 7.8% in both groups. This demonstrated that inhaled insulin was as effective as the injected version.
Lung issues: None
Inhaled insulin enters the millions of tiny, thin-walled air sacs (alveoli) in the lungs. It can easily pass through the permeable walls of the alveoli into the bloodstream. There, it gets right to work on controlling the blood glucose.
Neither of the studies found any lung problems arising during the 12 weeks from the use of inhaled insulin. Longer studies are now under way. And, a still-unpublished two-year study compared inhaled insulin (Exubera) plus a diabetes pill with a pill alone in 1,000 people with type 2 diabetes.
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I AM A SURVIVOR
by Sandra Sapp
I'm Sandra Sapp, from Fort Smith, Arkansas. I learned July of 2004 that I am a type 2 diabetic. And I am a survivor.
I have bits and pieces I can remember. On the 4th of July weekend, 2004, I was sitting in my living room looking out one of my windows, onto my back porch. And I had this cute little country girl figurine sitting around my plant, and I thought the neighbor was coming up to steal it. I didn't know I was a diabetic -- but I was hallucinating; seeing things. When I got up to walk to my window and look, my balance went off and I could feel myself going down where the right side of my face hit into my TV, and my shoulder went into the TV stand.
Two months before that, I'd noticed that I was constantly going to the bathroom. And it was like I couldn't rest, and I couldn't quit going to the bathroom. My doctor told me to go see a urologist. And he ran tests on me and said there was nothing wrong with my bladder. But, I would be having a big glass of water, a big glass of Pepsi-Coke, tea, coffee all lined up; I was thirsty all the time.
I have a home health aide who did house keeping. And she would come in and come to my bed and she would say, "Sandra, are you allright?"
And I would say, "No, I"m too weak, I can't get out of the bed." And when I did finally get myself sitting on side of the bed, like a crippled person, I couldn't walk. When I would try to stand, I would fall face down. I would fall on my face and stomach, and it was getting to where I had to take my hand to pull my throat out, to try and swallow my pills without choking.
July 9th, I went to go see my physician, because I noticed in the mirror that my face was sunken in and my eyes were half way open. My husband took me to go see this physician. I got sick to my stomach while waiting in the waiting room. And I was really sleepy, so I had my husband ask the receptionist if there was a room that I could lay down in and sleep. Did this get the doctor's attention? No.
When the doctor finally did come and see me, they woke me up and I asked him, "Does my face look sunken in to you?"
And he said, "Yes!" And he just kind of pulled the bottom of my eyelids down; I guess he was looking to see if I was anemic or something. And he said, "Oh, you just have a virus."
And I told him everything in my body felt like it was just shutting down. He didn't think to test my blood or anything. I thought that was odd. My husband was getting pretty upset, because the doctor said my skin felt like alligator skin.
I would try to cough, and it got to the point where I couldn't hardly cough anymore. It felt like someone had taken their fist, and hit me in the back, between my shoulder blades. And my stomach felt so tiny, like it was just tight. What came to my mind was stomach blockage.
When I saw this physician, in the mean time, I'd been doing all this falling down. And my home health aide never reported that I wasn't getting out of bed, and that she had to help me with showers.
And, I'd go to bed at like nine o'clock or something and wake up at 3:30 in the afternoon. I sat there, one day, lit a cigarette, and burnt the back knuckle of my right hand, and that's what woke me up! And I was like, "Oh, my God, I could have burnt me and my cat down," and that's when I stopped smoking.
When I saw that physician July the 9th, I thought, "No, this is not a virus." My husband came over to stay with me, and Sunday, mid-afternoon, I had on two loungers, a pair of knee-high socks, and I told him to call a cab; get a cab here because something was wrong! I said to myself I knew I was dying! But, I didn't know why.
So, we got a cab and went to the emergency room, there in Fort Smith. And I would fall asleep off and on. And they took me back into a private room in the ER, and I would wake up and I noticed they had a machine on my arm. And then I would got back out again. And the next time, I saw the emergency doctor I could watch him run all the way back to where I was; his face was whiter than a sheet. He said, "Mrs. Sapp, you're a diabetic!" And that's all I remember.
And the next time I woke up, I thought I was in a private room, and I didn't know what was going on. I thought, "Oh, they have me in a private room here." Turns out, I was in Intensive Care! All of a sudden I felt my feet going up in the air and I thought, "Hey, what's going on?" And this nurse dropped down to my ear and said, "Honey, your blood pressure dropped down to 51 over 30. We've got to raise your feet up and get some blood to your head fast!" And she said they almost lost me.
The next day, in Intensive Care my heart doctor walked in and she just dropped the notebook on the floor and said, "Honey, your blood sugar can not be in 1650!"
We even talked to the American Diabetes Association, and they said they had never heard of a diabetic that high. And, by my family praying and everything, they are calling me one of God's miracles. And let me tell you, I had aides, nurses, even patients walking in my room to look at me.
I had been taking a lot of medications for my symptoms, like nitroglycerine for my chest pain, and a blood pressure medication. This was before I was diagnosed -- and then, after they brought my sugars down with IV insulin, they put me on Actos, an oral medication. They experimented with other pills, and told me not to use the nitro patch anymore.
One of the nurses said, "Some of you diabetics will end up right back here in the hospital." And I told her, "Oh, not me" -- I couldn't deal with all those needles in both my arms.
But, I must say I was so happy there, because all those people up in Intensive Care and on that cancer floor were just wonderful! They had great teamwork, there at Sparks Hospital in Fort Smith.
Since I left, they got me a RN, who comes to the house. When I first got out of the hospital they also had me a diabetic technician come in to be sure.
The hospital dietitian gave me a 1800 calorie diet to use. I found "stir-fry vegetables" have a lot of vegetables and no meat -- and I have gone from about 213 lbs. to maybe 180 lbs now!
They got me a physical therapist because my balance wasn't doing well -- I was practically tripping myself with my cane. An eye doctor dilated my eyes, to be sure nothing was wrong. And then I got diabetic shoes and diabetic socks.
Well, at first someone would be here with me to make sure I was doing my blood tests right. But now, I do it myself and I had this one aide tell me I was doing great. And I told her about my diabetic diet, and the healthy stir-fry vegetables.
I would like to say to any kind of home care people, like aides or house cleaners, each time you go to your client's home, make sure they are doing OK. Because, like me not wanting to get out of bed and stuff, please call a nurse or someone to check them! I had trusted the girl who house cleaned. The hospital said to never do that again and they got me a CNA, a Certified Nurse's Aide.
If you have a condition, if you are unwell, tell a neighbor or a friend. Let them know. I have a neighbor who is a diabetic, and I told her if she ever needed anything to throw a book at the wall and I would be there for her. I would either get the police or the ambulance. It's so important, if someone has a loved one who lives alone, to just take time out to drop in and see if they are OK.
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BREAKING NEWS: "TYPE 3 DIABETES"
A research team from Brown University Medical School, headed by Dr. Suzanne de la Monte, has identified a new condition they are calling "type 3 diabetes." They have discovered that insulin is not just made in the pancreas -- but also in the brain. A shortage of brain insulin, and its related compounds, say the researchers, appear some way associated with Alzheimer's Disease. A person with "type 3 diabetes" would have lower than normal levels of brain insulin, and, as a diabetic (type 1 or type 2) appears to have 65 percent more likelihood of experiencing Alzheimer's, the link is timely and challenging.
"What we have found," says Dr. de la Monte, a neuropathologist at Rhode Island Hospital, "is that insulin is not just produced in the pancreas, but also in the brain. These abnormalities [type 3 diabetes] do not correspond to type 1 or type 2 diabetes, but reflect a different and more complex disease process that originates in the central nervous system."
The researchers suspect treating type 1 or type 2 diabetes to establish euglycemia may or may not affect brain insulin levels -- further study is necessary. They call for new therapeutic agents specifically targeting the action of brain insulin.
This is a beginning; much remains to be done. We know there is a statistical link between diabetes (type 1 and type 2) and increased Alzheimer's risk. We know there is "brain insulin," and that below-normal levels of this insulin are statistically associated with Alzheimer's. We do not yet know the nature of the link. When we do, look for a burst of progress against Alzheimer's. VOICE OF THE DIABETIC will keep you posted.
Thanks to BBC-Online (www.bbc.co.uk) March 7, 2005, for the "heads-up" on this item.
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ARE YOU AT RISK FOR KIDNEY DISEASE?
by Dr. Mackenzie Walser
Are you one of the millions of people who have unrecognized kidney disease? It's worth finding out, because if the disease progresses, you may wind up on dialysis, which can be extremely disabling and a lifelong process -- unless you can get a transplant.
Initially, the main symptoms of kidney disease are fatigue, loss of appetite, itching, and muscle cramps. Later, the symptoms progress to include nausea and vomiting. By this time, you're in the later stages of the disease, when about three-quarters of kidney function has been lost. So you can't recognize kidney disease by the symptoms alone.
There are two simple tests to check for kidney disease. A routine blood test can detect impaired kidney function. Your doctor probably performs a routine blood chemistry test once a year or so. You can also test yourself. In either case, that test includes a measurement of creatinine, a substance produced continuously by the body, especially in muscle, and is excreted by the kidneys. When kidney function decreases, there is a higher level of creatinine in the blood that can be readily detected. The upper limit of normal creatinine concentration in the blood serum is about 1.5 milligrams per 100 milliliters. When creatinine concentration is higher than 1.5 milligrams per 100 milliliters of serum, kidney function must be reduced. The more kidney function is impaired, the higher serum creatinine concentration becomes. The average serum creatinine concentration at which dialysis becomes necessary for survival is about 7 milligrams per 100 milliliters, corresponding to about 1/10 of kidney function remaining. Some people start dialysis much earlier -- for example, they might start dialysis at a creatinine level as low as 3 mg per deciliter, though this is probably not necessary.
Along with routinely having your blood tested, you can easily test for urine protein. Paper strips for this purpose can be purchased at any pharmacy. Simply hold one of the strips in your urinary stream and see if it changes color (the label will give further details, including how to determine if there is glucose in your urine which is a sign of diabetes). But if this test does show urinary protein, you need not conclude that you have kidney failure. The first thing to do if you get a positive reading is to repeat the test. If a positive result still appears, you may have kidney disease, but you may instead have one of the other conditions that can make protein appear in the urine even though kidney function is normal.
The most common cause of such a result is fever, but there are other causes, too. If protein continues to appear in your urine, see your doctor. He or she will find out whether you have chronic kidney disease. If you don't have protein in your urine, you almost certainly don't have kidney disease.
If your kidney function is reduced, it's critical to know if the disease is progressing. This requires repeated creatinine measurements over a period of at least several months. If your creatinine concentration, though elevated, does not rise further, you may never develop kidney failure and may never require dialysis. If the disease is progressing, controlling your blood pressure and reducing your dietary protein can help slow the progression. Occasionally, people who have elevated creatinine concentrations go on for decades without progression, and may have no symptoms at all, providing their kidney function is not too severely impaired.
Don't take a chance with your kidneys; the stakes are too high! Get tested today.
For additional information, see COPING WITH KIDNEY DISEASE, by Mackenzie Walser, with Betsy Thorpe, published by John Wiley & Sons.
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REDUCE DRUG INTERACTIONS
by Peter J. Nebergall, PhD
We've been around this bush before, but it really does matter. All this may sound like a lot to master, but you really need to -- it's your body.
Most diabetics are taking more than one medication. Some of your pills may be pretty harmless, by themselves, like aspirin, but one pill may alter the action of another. Prescription and "over-the-counter" meds may interact, and that magical "natural organic" herbal supplement you bought at the health food shop, the one you're too embarrassed to tell your doctor about? It can interact with your meds, too.
There are lots of horror stories. Rezulin, the now-banned diabetes drug, caused a few premenopausal women to become fertile again. Herbal "cure-all" St. John's Wort seriously interfered with prescription medications for depression (not a happy result!), and a whole slew of heart medications interact with the sulfonylureas (standard type 2 diabetes "oral meds"), raising the risk of hypoglycemic events.
Grapefruit is supposed to be good for you. But if you take the statins (for cholesterol reduction) or calcium channel blockers (for blood pressure and angina, heart pains), grapefruit can cause these medications to be more efficient -- with some unexpected consequences -- as in overdose.
A number of medications interact with alcohol, and in some cases, that otherwise harmless glass of wine can even cause kidney damage. Read the label -- and respect it.
If you're taking an ACE inhibitor (a blood pressure med given to many diabetics to protect kidney and eye function), it can interact with potassium supplements. Even regular aspirin, taken with certain warfarin-based anti-clotting agents (like Coumadin), can cause problem interactions.
And, last but not least, if your kidney function is diminishing, if you're heading toward ESRD, end stage renal disease, medications you've been taking successfully for years may suddenly rear up and bite you. Many medications "clear through the kidneys," and if/when the kidneys grow less efficient, these drugs (including insulin) can suddenly last longer in your body -- and your regular dose can start acting like an overdose.
These interactions aren't supposed to happen -- but instead of placing blind trust in your doctor and your health care team, how about becoming a more active partner? Can you make a list of all the medications you're taking? Do you know what each is supposed to do? Have you discussed this list with your pharmacist? With your doctor? Does your primary care physician know ALL the medications you are taking?
There's no time like right now.
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RESOURCE ROUNDUP
Inclusion of materials in this publication is for information only; it does not imply endorsement of any product by the Diabetes Action Network of the NFB.
Talking Household Thermostat
The new Kelvin Talk-a-Therm is a fully interactive talking household thermostat -- it talks to you (tells you the settings, so you don't have to strain to see them) and it has speech recognition capacity -- you can talk to it; adjusting it with your voice. Just introduced, the Kelvin was developed by a company named Action Talking Products, a joint venture between the National Federation of the Blind and Independent Living Aids.
The fully programmable Talk-a-Therm can be preset (by voice or button controls) for specific times and specific days. Every button and function speaks, making it easy to program without sight. Once the Kelvin has been programmed, temperature can be adjusted by voice commands, via built-in speech recognition. Only marginally bigger than a conventional thermostat, it measures 5.25 by 5.25 inches, 1.25 inches deep, and can be installed by any competent professional. The Kelvin Talk-a-Therm (cost: $130) is available from: Materials Center, National Federation of the Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314; website: www.nfb.org or from: Independent Living Aids (ILA), P.O. Box 9022, Hicksville, NY 11802; telephone: 1-800-537-2118; website: www.independentliving.com.
New Hypoglycemia Alarm
Diabetes brings with it the risk of hypoglycemia, low blood sugar. Some of us need some help. What many of us need is an alarm, a device to warn us we're going low, when we cannot tell for ourselves. There is now such a device -- FDA approved.
Diabetes Sentry Products, from Bellingham, Washington, offers the Sleep Sentry, a wrist watch-sized device that sounds an audible warning whenever the wearer's blood sugar drops too low. Not a blood glucose monitor, this noninvasive device meters changes in body temperature and sweat consistent with hypoglycemia, and sounds a warning in time for you to take action. Completely noninvasive and continuous, the Sleep Sentry costs $399, shipping included, and may be ordered from: Diabetes Sentry Products Inc., 1200 Dupont St., Suite #1D, Bellingham, WA 98225; telephone: 1-866-270-5675; website: www.diabetessentry.com
Nutrition Supplement
Your insulin or oral diabetes medications are only part of your diabetes self-management. Although food supplements do not replace your medications, and the U.S. Food and Drug Administration has not evaluated their efficacy to prevent or treat any disease, a healthy diet is important, and research is continuing on the role specific supplements may play in controlling diabetes. AlphaBetic Multi-Vitamin Supplement is a food supplement formulated for the special needs of diabetics. A blend of vitamins, antioxidants, and minerals, is available in sugar-free caplets. Contact: Abkit, Inc., 61 Broadway, New York, NY 10006; telephone: 1-800-226-6227; website: http://www.alphabetic.com
Easy Diabetic Cookbook
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, PO Box 2121, Kerrville, TX 78029; telephone: 1-800-757-0838; www.fouringredientcookbook.com
Full Service Diabetes Supplier
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 on line: www.diabeticsupply.com or call: 1-800-819-8738.
Newsline for the Blind
The National Federation of the Blind's NEWSLINE is an electronic publication of major daily newspapers, specifically tailored for blind and visually-impaired readers. 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: Newsline Network, National Federation of the Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone: 1-888-882-1629.
America's Jobline
Blind job-seekers have traditionally been at a disadvantage, as few job vacancies have been widely posted in accessible format. In response, the National Federation of the Blind has developed technology to access and search computer database files with a standard touch-tone telephone -- and now anyone can access a million or more current job listings, free of charge, by telephone. To access America's Jobline, simply dial: 1-800-414-5748. America's Jobline is instantly available, 24 hours a day, providing all job announcements in a high-quality synthesized speech format. The system provides callers the ability to search America's Job Bank (sponsored/administered by the U.S. Department of Labor and state workforce-development agencies), allows job seekers to create and store in the system personal job-search profiles (electronic resumes) for use in quickly locating vacancies for which they are qualified; and allows users the option to retrieve, if they wish, only the new and relevant job listings posted since the last call, or all previously saved announcements. To try Jobline yourself, call: 1-800-414-5748. NOTE: Not all states currently subscribe to Jobline; the list changes frequently -- contact the NFB (410-659-9314, in Baltimore) if the above 800# does not work in your area.
To learn more about America's Jobline, contact: National Federation of the Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314; website: www.nfb.org
Famous Name
In 1924, ten years before Walt Disney drew his famous cartoon, Donald Duck was born, in Mallaig, in the Highlands of Scotland. The boy went on to become a doctor, and never once thought to change his name -- as it didn't cause much trouble.
"I did send a patient to hospital in Edinburgh, once," he said, "And they asked him who was his primary care physician? He told them: 'Donald Duck.' 'Right,' they said, 'And we'll be sending you to the psychiatrist!'"
Banquet Address
Last year, at our National Federation of the Blind annual convention in Atlanta, Georgia, NFB president Dr. Marc Maurer gave the Banquet Address, titled "The Assimilation of Crisis." This address is available, free of charge, in large print and audiocassette, or downloadable (in "RealAudio" format), from the NFB Website: www.nfb.org. This speech, and others by President Maurer (and much more!), are available from the National Federation of the Blind Materials Center, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314, open 8:00 to 5 pm. EST, weekdays.
Diabetes Literature from NFB National Center
The National Federation of the Blind maintains an extensive literature collection, with free materials on many subjects, including diabetes, available in a variety of formats. The diabetes articles are available, in large print or on 4-track audiocassette, in a single volume titled: Diabetes Action Network Articles, or singly, in large print. 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 Edition. In Braille, price is $10; on tape, $2.
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 e-mail: [email protected] The Materials Center is open 8:00 am to 5 pm, EST, weekdays.
Diabetes Supplies
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 with 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.
Hold The Fries, Please
"Fast food" is better known as junk food for good reason. Eating the stuff, however convenient, you can't keep to any diet but the "see-food" one popularized by Garfield the cat. Forget the burgers for a moment; did you know a small order of fries has 30 grams of carb in it? How many carbs did you say were in your meal plan -- for the whole day?
If you must eat fast food, remember you can get the nutritional information for it. Websites like www.mcdonalds.com have the nutrition information posted, and other fast food outlets either have the same information on their websites, on a poster on the wall, or in a handout they'll give you. Just ask them.
SugarTrac Update
From the Editor: Last issue, VOICE Vol. 20, No. 1, I updated you about the progress of the new SugarTrac non-invasive glucose monitor. The manufacturer, LifeTrac, from Fort Myers, Florida, is seeking official approval, from the Food and Drug Administration, and expects to receive it shortly.
Richard Peters, inventor of the meter, is still upbeat about his product's prospects. LifeTrac has been working with Harvard Medical School to complete the administrative requirements. Internal problems have delayed final action, but the SugarTrak is still on track.
We need a practical, inexpensive, easy-to-use, talking, non-invasive, blood glucose monitor, and the SugarTrac, given any luck at all, should be that meter. I'll be waiting, and as soon as I know something more, I'll let VOICE readers know the specifics. For information, contact LifeTrac, Fort Myers, Florida; telephone: 1-877-768-6978; website: www.sugartrac.net
Adaptive Computing Equipment
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
Diabetic Supplies On Line
Pharmacist Bryan Luna, Rph, offers diabetes supplies, including glucose monitors, on line 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.
Mental Sharpness
Most of us have a good idea of what a low blood sugar reaction can do to our cognition -- our ability to do something like take a test. How many of you "hit the donuts" a bit, before an exam, so you can keep from going low? Lots. Is it better to be "too high," when you have to do something intellectual? Maybe not. Diabetes Care magazine, for January 2005, reported diabetics who ran high showed a statistically significant short-term decline in verbal and mathematical skills, while their sugars were elevated. We all knew it's smart to keep your blood sugars in the normal range -- and this proves it.
Did You Use Vioxx?
Some individuals who used the pain medication Vioxx experienced complications from the drug. If you used this medication, or were a caregiver for someone who did, you might want to find out more about your legal options. Contact: Dean Spurlock, Attorney, 5601 Bridge Street, Fort Worth, TX 76112; telephone: 1-800-700-1075.
Do You Need The Voice on Audiocassette?
If you are at least "legally blind" (ask your health care team, if you're not sure), you are eligible for The National Library Service for the Blind and Physically Handicapped (NLS), part of the U.S. Library of Congress. The NLS provides a free library service of recorded books and magazines to persons unable to use standard print materials because of visual or physical limitations. This service is available to eligible residents of the United States and to American citizens living abroad.
If you qualify for membership, you qualify for the free loan of the special tape player needed to play these cassettes(they WON'T WORK in your stereo or your Walkman -- they'll sound like Martians arguing) -- and you can keep it as long as you're using it. If the tape player needs repair, send it back; they'll fix or replace it for free.
Full details about eligibility requirements, a list of available equipment, and the addresses of cooperating libraries may be obtained by contacting the Reference Section, National Library Service for the Blind and Physically Handicapped, Library of Congress, Washington, DC 20542; telephone: 1-800-424-8567.
Board Members
The Diabetes Action Network of the National Federation of the Blind.
PRESIDENT: Paul Price
Valley Center, CA
FIRST VICE-PRESIDENT: Lois Williams
Huntsville, AL
SECOND VICE-PRESIDENT: Sandie Addy
Prescott Valley, AZ
TREASURER: Joy Stigile
Reseda, CA
SECRETARY: Joyce Kane
Stratford, CT
BOARD-MEMBER: Ed Bryant
Columbia, MO
BOARD-MEMBER: Josie Armantrout
Bemidji, MN
BOARD-MEMBER: Bruce Peters
Akron, OH
Elections Coming Up
At this year's national convention, in Louisville, Kentucky, elections will be held to fill our Diabetes Action Network divisional board positions. These are one-year terms, running from July 1, 2005 to June 30, 2006. Positions to be filled are: President, First Vice-President, Second Vice-President, Secretary, Treasurer, and three Board Members. If you are interested in a board position, or know someone who you think would do a good job, then contact Diabetes Action Network President Paul Price, 13946 Woods Valley Road, Valley Center, CA 92082; telephone: (760) 749-2044; e-mail: [email protected]. Yes, hard work and dedication are prerequisites for board positions -- but one must lead by good example.
Correction
Last issue, VOICE Volume 20, No. 1, we published "New Treatment For Diabetic Foot Ulcers," by Dr. Stephen A. Brigido, about a product called GraftJacket. In that story, some of the contact information supplied to us was incorrect. The correct telephone number for Dr. Brigido is: (570) 420-8080.
Medical Equipment and Supplies
Specialty Shoes and Diabetic Supplies, Inc., from Beaumont, Texas, is a one-stop supplier for your diabetes needs. They stock blood glucose meters, strips, lancets, vacuum erection devices (for diabetic impotence) other diabetes care items, and, of course, specialty pedorthic footwear. They accept Medicare, Medicaid, Blue Cross, Blue Shield, and private insurance. Contact them at: SSDS, 229 Dowlen Road, Suite 15A, Beaumont, TX 77706; telephone: 1-877-817-7737; e-mail: [email protected]
Healthy Cookbooks
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
Diabetic Socks
We have been asked to announce: Diabetes often brings trouble with the feet. Blisters, sores, and abcesses are a risk. A diabetic needs proper, well-fitted footgear, and seamless socks of proper size, ideally made of an acrylic material that will wick moisture away from the feet. Jobst SensiFoot Diabetic Socks are made in five sizes, and designed to help keep your feet safe and healthy. Contact: BSN-Jobst, Inc., 5825 Carnegie Blvd., Charlotte, NC 28209; telephone: 1-800-537-1063; website: www.jobst.com
Have a P&J
We have been asked to announce: All peanut butter is not created equal. Read the label; some best-selling brands are full of added sugar. Choose a healthy peanut butter, like Peanut Butter & Co. Three of their products: Smooth, crunchy, and hot (yes! peanut butter with red peppers!), feature reduced sugars. They all taste old-fashioned great. So get some "light" (low-calorie) bread, some sugar-free jelly, and this peanut butter, and enjoy. Contact: Peanut Butter & Co., Brooklyn, NY 11222; telephone: 1-866-456-8372; website: www.ilovepeanutbutter.com
Diabetic Products
Health Care Products makes many over-the-counter medications and supplements for diabetics, including Multi-Betic Vitamins and DiabetiSweet sugar-free sweetener. 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
New E-mail Diabetes List
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 e-mail, by sending a message to: [email protected] and putting "subscribe" in the subject line.
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 recorded for the Blind in NLS format) on a conventional music-speed tape player will fail, yielding only incomprehensible "chipmunk sounds."
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.
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 342,049 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.
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DO YOU WANT TO CONTINUE RECEIVING THE VOICE?
VOICE OF THE DIABETIC, your free diabetes magazine, is published four times a year by the Diabetes Action Network of the National Federation of the Blind. If you want to start receiving it, please fill in the blanks below, and return it to us, by mail or fax. Also, you may contact us directly, and tell us, by e-mail ([email protected]), by phone: (573) 875-8911, or by fax: (573) 875-8902.
If you already receive VOICE OF THE DIABETIC, we need you to verify your address. It costs us a lot of money, when we send copies to the wrong address, or to someone who can no longer use them -- and since we don't charge for the magazine, we really need your help. Let us know where you are -- and whether you'd like to step up to membership in the Diabetes Action Network. It's free, and it opens a lot of doors. So TELL US!
[ ] PUT ME ON THE MAILING LIST. [ ] YES! KEEP 'EM COMING.
[ ] Make me a MEMBER of the Diabetes Action Network
[ ] I want my copies in STANDARD PRINT
[ ] I want my copies on 4-track audiocassette tape for the Blind (Requires "talking book" tape player available from NLS: 1-800-424-8567).
[ ] Send me BOTH tape and print
[ ] Send me EXTRA copies of the VOICE to distribute in my community. I can use _________ extra copies each issue, to help spread the word.
[ ] I want to donate $_______ to the National Federation of the Blind, to help pay for VOICE OF THE DIABETIC. Each subscription costs us $20 a year. Your support, any amount, is appreciated.
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The U.S. Post Office requires we ask all of you to verify your zip code. Do we have it right? Please tell us!
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RETURN THIS DOCUMENT TO: VOICE OF THE DIABETIC, 1412 I-70 Drive SW, Suite C, Columbia, MO 65203; telephone: (573) 875-8911; fax: (573) 875-8902; e-mail: [email protected]; website: www.nfb.org/voice.htm
V20#2
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