VOICE OF THE DIABETIC
The Diabetes Action Network of the
National Federation of the Blind
A Support and Information Network
Volume 15, Number 1, Winter Edition 2000
VOICE OF THE DIABETIC, published quarterly, is the national news 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, 811 Cherry Street, Suite 309, Columbia, Missouri 65201-4892; Phone: (573) 875-8911; Fax: (573) 875-8902.
Find us on the World Wide Web at: http://www.nfb.org and follow the links for "diabetes."
Copyright 2000 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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INSIDE THIS ISSUE
TRANSPLANT PATIENTS SPEAK
CONSIDER DONATING A KIDNEY
ORGAN DONORS WANTED
ASK THE DOCTOR
by Wesley W. Wilson, MD
INVESTIGATORS RESEARCH GENETIC LINK TO DIABETIC KIDNEY COMPLICATIONS
KIDNEY FAILURE: PREVENTION, DIALYSIS, OR TRANSPLANTATION
by Ed Bryant
NEW INSULIN DELIVERY SYSTEM TESTED
DIALYSIS AT NATIONAL CONVENTION
by Ed Bryant
MORE ABOUT TEVETEN
ACE INHIBITORS: WHAT AND WHY
by Peter J. Nebergall, PhD
THE MENTAL DISCIPLINE OF THE MOVEMENT
by Marc Maurer
HELEN SPRIGGS: RUNNING AGAINST DIABETES
GLUCOWATCH MONITOR APPROVED
EYE STUDIES SEEK VOLUNTEERS
RECIPE CORNER
NATIONAL FEDERATION OF THE BLIND SCHOLARSHIP PROGRAM
COOKING WITH SUZI
by Suzi Castle
BOOK REVIEWS
by Marilyn Helton
WHAT CAN A HEALTH EDUCATOR DO FOR YOU?
by Alice Sariyildiz
WHAT YOU ALWAYS WANTED TO KNOW BUT DIDN'T KNOW WHERE TO ASK
(Resource Column)
FOOD FOR THOUGHT
TRANSPLANT PATIENTS SPEAK
Photo #1: portrait. Caption: Eivind Frost has had his kidney transplant 26 years.
Photo #2: portrait. Caption: Karen Mayry has had her kidney transplant 23 years.
Photo #3: portrait. Caption: Ken Carstens has had his kidney transplant 24 years.
Photo #4: portrait. Caption: Betty Walker has had her kidney transplant almost 22 years.
Photo #5 (located within article): portrait. Caption: Linda Bingham has had her dual transplant (kidney and pancreas) for 18 years.
FROM THE EDITOR: Kidney disease is a frequent complication of diabetes. Perhaps 40 % of all long-term diabetics will develop it, and approximately half of those may require either dialysis or kidney transplant to preserve life. I heartily endorse kidney transplantation--for the improved quality of life it brings. The following people also endorse it--and they should know, as they have lived with transplants for years.
Eivind Frost
Eivind Frost, of Great Falls, Montana, was diagnosed with diabetes in 1946, when he was 21 years old. Twenty five years later, the Mayo Clinic, checking him out for loss of energy, found he had a lot of protein in his urine. He was told his kidneys were failing. The doctor told him he'd need a kidney transplant in one or two years.
Eivind received his transplant (from a ten-year old child, he was told) on April 24, 1973, at University of Minnesota Hospital (now known as Fairview-University Medical Center) Transplant Clinic, in Minneapolis, Minnesota.
The transplant went well. "I did pretty well what they told me to do, and I got along well," Eivind reports. "The first day, they had me walking the halls. I was holding a pillow against my belly, and the IV connections were hooked up to me. I was supposed to be there 14 days, but they ran out of beds... They told me I could go home after 13 days. They said if my new kidney lasted three months, they would guarantee it to last five years--but it has lasted twenty-six years! My kidney is in great shape--and so am I!"
Ken Carstens
From Virginia, Minnesota, Ken Carstens was diagnosed with diabetes when he was ten years old. On September 11, 1975, he received a kidney transplant, at University of Minnesota Hospital in Minneapolis. As Ken has type-O negative blood, the odds on a good match from a cadaver were poor; it would have been long wait. Ken's sister donated one of her kidneys.
Ken was on dialysis about 3 months before the operation. "I had some bad times on dialysis," he says. "I started developing quite bad neuropathy in one hand, but after the transplant, it gradually went away... It has been 24 years now, and I'd make the same choices again."
Karen Mayry
From Rapid City, South Dakota, Karen was diagnosed with diabetes at age 11, while in the fifth grade. "When it became time for my transplant, my brother David Richard immediately said that he would donate a kidney to me, if our blood types matched at all, and of course they did, and we did," she says.
"I went in to the hospital weighing 143 lbs which was at least 25 lbs over my normal weight. And I had no clothes to wear at that point because everything I owned was too small. I came out of the hospital weighing 103 lbs, and still had no clothes to wear because everything was too big!
"On January 12, 1977, 23 years ago, I got my transplant at the University of Minnesota Hospital. And after the transplant, I loved it because I only needed like three hours of sleep, I was so hyped up. I just can't imagine somebody making the choice to not have the transplant when they have the option. If it were up to me and I lost this one and had to go for another one, I would take that opportunity as well."
Betty Walker
Betty Walker, from Jefferson City, Missouri, says, "In spite of the fact that I was diagnosed with diabetes at age five, my childhood was more or less "normal," but in January 1978, I was confronted with diabetic renal failure. When I went on hemodialysis, most of the time I felt very ill. I was so nauseated that I could not eat. My social life was nonexistent, and I no longer enjoyed any hobbies. I was so tired that most of the time between dialysis sessions I spent in bed. Life went on like that for about six and one-half months. When I decided to have a kidney transplant, I figured I had nothing to lose. Dialysis was always there to fall back on.
"On July 13, 1978, I was 'born again.' My mother, Fran Bator, gave me life when I was born and gave it to me again when she became my kidney donor. The transplant was done at Yale-New Haven Hospital. It should be called a 'transformation,' because that is what it was for me.
"In closing, I would just like to say: 'Never give up, and don't let anything get you down.'"
Lenny Ruygt
From Santa Rosa, California, Lenny Ruygt was three years old when she was diagnosed with diabetes. "I don't remember back that far," she says. "I developed kidney problems when I was about 16. And they found out it was due to a minor kidney problem, obviously at that point. Then I spent 10 or 11 years in a sort of continual downward spiral; I hit lots of plateaus, so it wasn't like a sudden plunge.
"In April of 1979, the plan was that they would get me ready for dialysis, probably within the next six months. And then in March 1980, on St. Patrick's Day, I received a transplant, from a living related donor, and my kidney is still working just fine--no rejection episodes whatsoever. My kidneys functioned from the time I got off the operating table. I have done real well--it will be twenty years in March."
Linda Bingham
Linda Bingham, from Cincinnati, Ohio, was diagnosed with diabetes in 1958, at the age of 10. About 25 years later, she started showing the symptoms of kidney failure. She chose transplantation. On December 10, 1981, Linda received a dual transplant (kidney and pancreas), at University of Cincinnati Hospital--and is now the world's longest-surviving dual transplant recipient.
"It has been 18 years," she says. "My outcome has been wonderful. I know it's a personal decision, but I didn't even give it a second thought. I said, all my life, that if I could get rid of my diabetes, I'd be OK. And I got rid of it. I've not had anything major happen to me since the transplant."
Linda feels very positive about transplantation: "If I were to lose this transplant, I would definitely go for another; I wouldn't hesitate. There's no guarantee it'll work out, but it's a chance you have to take. I view it as a miracle..."
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, 811 Cherry Street, Suite 309, Columbia, MO 65201; telephone: (573) 875-8911, fax: (573) 875-8902. NOTE: Please provide a phone number so we can reach you.
CONSIDER DONATING A KIDNEY
Who? Me? There might come a day when someone you care about needs a transplanted kidney--and you may be the person with a spare. Organ donation is not just for the dead--what about live donation? What does it mean for the donor?
Let's start with what it isn't. It doesn't cost you any money to give a loved one a kidney, or some of your bone marrow, or even part of your pancreas. Any charging of the donor, by doctor, hospital, or third party, violates Federal law. Any bills a donor gets come by mistake.
It doesn't impair you, or shorten your life, to share it with others, as you were born with two kidneys, and can do perfectly well with one. Giving part of your body to save a loved one's life will not make you a "cripple."
It isn't risky. People who'd be at risk from the surgery aren't accepted as donors. Live donors are healthy people. Donation surgery is safe for the donor.
And you're back on your feet pretty quickly. With the new surgery called laparoscopic nephrectomy, already in use at several transplant centers, the donor's incision (and operation scar) are smaller, there is less damage to the surrounding area (so you don't ache as much afterwards, or need so much pain medication), and you (the donor) get out of the hospital a lot faster (as little as two to four days).
Data show that patients who receive kidneys from living related donors do about 20% better than those who receive cadaveric donor kidneys from a stranger--and, Federal regulations allocating who gets what transplanted organ, and when, DO NOT APPLY to live donations. Patient, doctor, and donor decide who, when, and where--so there is no long wait.
To learn more about organ donation, contact: The Coalition on Donation, 1100 Boulders Parkway, Suite 500, Richmond, VA 23225; telephone: 1-800-355-7427; website: http://www.shareyourlife.org
ORGAN DONORS WANTED
Federal legislation directs the Secretary of the Treasury to place an organ donor card and pamphlet in every envelope containing an income tax refund check. Up to 70 million Americans receive such checks, so this should really help spread the message that organ donation saves lives.
Think about it. If something sudden were to happen to you, your posthumous gift could bring life and independence to several others. The wait is long for donated organs, and the current supply is about one fourth the demand. You can make a difference!
You don't have to wait for a refund check from Uncle Sam, to indicate your willingness to participate. Many states have a simple form on the back of their driver's license. That's a start.
But if you want to participate, make your intentions known--now! Tell your doctor. Tell your family members. Tell your lawyer, your priest, your rabbi, what you want to do! There is great need, and it would be sad if something happened to you, and donation could not proceed because they couldn't find your wallet. Your "next of kin" or authorized representative will have to sign a "document of consent" to allow posthumous organ donation--so it is critical these people know what you intended. Tell them!
Below are some questions you might have, and the answers:
1. Will it cost my estate anything?
Organ donation is free of charge. Any billing of donor, donor's family, or estate is illegal.
2. Will it delay the funeral?
No. The process is completed within hours of death.
3. Will it alter my appearance?
Not in any way. Any "viewing" can take place in the normal manner.
4. Can I change my mind?
You can alter or revoke this decision in the same manner as you can your Last Will.
5. Where can I learn more about this?
There are many sources, agencies, and websites. Start with your doctor. The Coalition on Donation, 1100 Boulders Parkway, Suite 500, Richmond, VA 23225; telephone: 1–800–355–7427; website: http://www.shareyourlife.org, has information and materials on all aspects of donation, both live and posthumous. Uncertain how to tell your family? They have advice for that too.
ASK THE DOCTOR
by Wesley W. Wilson, MD
Artwork: Medical caduceus
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 had diabetes for years now, and all that jabbing of my fingers (for the blood tests) is making them go numb. Is there another place I can use to get an adequate blood sample?
A: I have some concerns about your numb fingers. Are you sure it's from the testing? Persons with diabetes can develop problems with nerve function, that can cause numb fingers. Are all the fingers numb, or just the ones you use to take blood samples? Any numbness of the toes? Has your doctor evaluated this problem? A simple test of nerve function in the toes is the monofilament test, and that test can be carried out by patients themselves. Information about this test can be found in "Diabetes Forecast," or by calling the American Diabetes Association. Could this numbness be a manifestation of Carpal Tunnel Syndrome? It seems important to decide what is causing the numbness.
Despite my uncertainty as to the cause of your numb fingers, I also have concerns about using the fingers for testing. Certainly, I've seen persons who test a lot with rough, callused, and scarred fingers. Not only are there more sensory nerves in the fingers than in most other parts of the body, but the fingers are certainly more in contact with the environment than are most other parts of the body. As I am a physician frequently in contact with persons who may have infectious diseases, I have concerns about any penetration of the protective barrier the skin provides. Careful hand-washing and glove use can minimize exposure to infections such as hepatitis or HIV, but it has seemed prudent to further minimize exposure where possible.
I have used the area just above the knee for blood sampling for years. It is much less painful than the finger, and appears to be accurate. About five years ago, I decided to test that assumption.
I ran an experiment to see if blood tests from the knee area were as accurate as those taken from the finger. My experiment consisted of 40 blood sugar tests, done in triplicate. Each test consisted of a sample taken from the area just above the knee, another sample taken from a finger, and then, within ten minutes, a venous blood sample from which a plasma glucose was done in the Western Montana Clinic's clinical laboratory. I wished to compare the accuracy of the knee sample with that of the finger-stick sample, and I used the laboratory as the referent, a "gold standard." The results showed excellent agreement between the knee and finger, and both knee and finger compared closely with laboratory (venous blood) results. The area just above the knee is an accurate, painless site for blood sugar testing.
There are some problems with knee testing. Women seem to have more trouble than men getting an accurate sample. Skinny persons such as I am can get a fold of skin to squeeze it to milk a drop of blood to the surface easier than can persons whose skin is more tightly filled. Some meters do not allow the tester to invert the meter over the puncture site and touch the reaction pad to the drop of blood. I've had excellent results with the Precision QID and the AccuChek Advantage (using its Comfort Curve test strips).
As an inconvenience, there is sometimes the tendency for a bit of blood to ooze, after the test, and this may stain the knee of your trousers.
Blood sampling from above the knee can provide an accurate and painless alternative to finger-stick blood glucose monitoring.
INVESTIGATORS RESEARCH GENETIC LINK TO DIABETIC KIDNEY COMPLICATIONS
Scientists at the Joslin Diabetes Center in Boston are searching for genetic components that may make some people with type 1 diabetes more susceptible to kidney complications. Dr. Andrzej Krolewski and his team of investigators have over a decade of experience researching diabetic kidney disease (nephropathy), and in this time have found strong evidence that genetics plays a role in who will develop nephropathy and who will not.
Diabetic nephropathy affects about one-third of people with diabetes, and is caused by a combination of clinical factors (such as blood sugar control and high blood pressure) and inherited factors. Nephropathy often first manifests as protein spilled into the urine, and may progress to End-Stage Renal Disease, which must be treated by dialysis or kidney transplant. By identifying a genetic link, doctors hope to be able to more effectively treat and prevent nephropathy. Dr. Krolewski’s research project, titled the "Joslin Kidney Study," aims to locate such a link.
Dr. Krolewski’s group has made great progress in narrowing down regions of DNA where a gene or genes causing greater susceptibility to kidney complications might be found. This is due in part to the many advances in molecular technology over the past few years. However, Dr. Krolewski is quick to emphasize that the most important component of this project is the cooperation of patients with diabetes and their families, without whom the research could not continue.
"Each additional family who participates in the ‘Joslin Kidney Study’ increases the chances of finding genes responsible for diabetic nephropathy," states Dr. Krolewski. Working together with Dr. Mark Williams, a kidney specialist at the Joslin Clinic, Dr. Krolewski and his team are currently recruiting participants for the "Joslin Kidney Study."
"Joslin Kidney Study" recruiters are looking for people who were diagnosed with insulin-dependent diabetes diagnosed before age 31, who have a clinical diagnosis of kidney disease--including proteinuria, dialysis, or kidney transplant--and who have at least one other diabetic sibling with no kidney complications.
Distance is no object in the "Joslin Kidney Study," as people from all over the world may participate. The study protocol consists of one-time participation and involves a short interview regarding family history and health, blood pressure measurements, and a blood sample collection. In return, participants receive compensation for their time, and assurance that the confidentiality of all information will be protected.
For more information about the "Joslin Kidney Study," or to see if your family qualifies, please call Project Manager Kellie Anderson, toll-free, at (877) 264-2739 or via e-mail at [email protected]
KIDNEY FAILURE: PREVENTION, DIALYSIS, OR TRANSPLANTATION
by Ed Bryant
Photo: portrait. Caption: Ed Bryant
I have a special interest in renal failure, as I have had a kidney transplant for over 16 years, and I feel great. I know folks who've had transplants far longer than I have, and they're doing fine, too. I hope the following answers some questions.
Prevention Comes First
"I'm sorry, but your kidneys are beginning to fail..." If you hear those words, what do you do next? Knowing that nephropathy, kidney failure, is a frequent complication of diabetes, do you sit and wait to get worse, or do you act? What can YOU do to prevent, minimize, or slow kidney failure?
The Diabetes Control and Complications Trial (DCCT), a large, long–term, federally–funded study of the relationship between diabetes control and the onset of complications, in type 1 diabetics, found that there was a tight statistical link between quality of diabetes control and ramifications such as heart and blood vessel disease, diabetic eye disease, and diabetogenic kidney failure. The British UKPDS (United Kingdom Prospective Diabetes Study), a similar long-term look at type 2 diabetes, found the same pattern of results. We now know the tighter your control, the less chance you will experience complications. (Note the linkage is not absolute; you can do your best and still face these ramifications, though the statistical risk-reduction is clear.)
The DCCT's findings are not mysterious. High blood sugar causes diabetes complications; and the better job you do of keeping your blood glucose numbers down where they should be, the less your chance of developing conditions such as nephropathy. The importance of this cannot be overstated: Good self–management is the BEST way to cut the risk of experiencing diabetes complications.
There are other things you can do to cut the risk. Some of them come under the heading of "healthy lifestyle." First, don't smoke. Nicotine, the narcotic active ingredient in tobacco, is a vasoconstrictor, raising blood pressure, stiffening capillaries, and making it harder for the kidneys to filter wastes.
Urinary tract infections need prompt treatment, to limit the damage they can do to already strained kidneys. Tell your doctor promptly, if you think you have such an infection.
Excessive obesity both raises blood pressure and increases insulin resistance. Keeping your weight at or below your recommended level helps in general, and the resultant blood pressure drop is good for your kidneys.
You need to control your cholesterol, as too much of this fatty substance in your blood overworks (and can even clog up) your kidneys. Diet, exercise, and appropriate medications can lower your cholesterol levels.
Heart specialists have known for years that high levels of stress can be damaging. Excessive stress, driving up blood pressure, can harm the kidneys by raising fluid pressure, further straining already weakened filter networks. Stress reduction is part of a healthy lifestyle.
There is a lot of disagreement among doctors over the specifics of what will prevent kidney failure. So much is genetics; more may be environment, or other factors we are not yet aware of. Other than "keep your diabetes under the best possible control, and live a healthy lifestyle," we can offer little advice about prevention. The manual, "The Prevention and Treatment of Complications of Diabetes Mellitus," published 1991 by the Centers for Disease Control (and now available on the World Wide Web, at: http://www.cdc.gov/diabetes/pubs/pubs.htm), states: "At present, strategies for preventing diabetic nephropathy must be viewed as limited in their effectiveness, since the exact pathogenic factors responsible for this condition are unknown."
Once kidney disease is diagnosed, however, a great deal can be done to retard its progression, and sometimes interventions such as described above are sufficient to keep the need for dialysis or transplantation well at bay. Current statistics suggest up to four out of every ten diabetics may experience measurable kidney disease, though with considerations such as described in this article, many of these individuals should be able to avoid outright kidney failure, End Stage Renal Disease (ESRD).
If you do your best and still experience kidney failure, it is not time to despair. Whether you choose transplantation, or one of the forms of dialysis, the outlook is good and getting better all the time.
Testing Your Kidney
How is the severity of kidney disease measured? Several tests measure creatinine, a waste product from muscle mass. Although everyone produces creatinine, people whose kidneys are failing cannot properly excrete it. One test measures the amount of creatinine in the blood, and the other is "creatinine clearance," a 24–hour urine test. Normal "blood creatinine," for someone with healthy kidneys, is about 0.7 to 1.3. Government guidelines (April 1995) recommend dialysis when the blood creatinine rises to 6 or above (the number rises as you get worse). However, some diabetics will experience kidney failure before that point. There is much variation between individuals who have ESRD, and the actual range for "kidney failure" runs from 3 through 8--but at or above 6, Medicare will pay for dialysis.
"Creatinine clearance" is considered a more reliable test. In this 24-hour urine test, the numbers produced approximately indicate the percent of normal kidney function remaining to the individual (the number goes down as you get worse). The 1995 government guidelines (which relate to Medicare part B eligibility) state they will fund dialysis when the test produces a reading of 15 or less.
Two other tests measure protein spillage into the urine. These are the microalbumin test and the test for proteinurea. The protein albumin is not normally excreted into the urine, and its presence in the urine, in small amounts (microalbuminuria) or larger concentrations (proteinurea) can indicate kidney disease. While not considered absolute diagnostic evidence, a positive finding in either should be immediately followed by further testing, as these tests are very sensitive, and the microalbumin test can detect kidney disease long before the other tests–-allowing earlier medical intervention.
Options
Individuals experiencing impaired kidney function, but whose test results indicate that they do not yet need dialysis or transplantation, might benefit from two new therapies. The first is regular use of ACE (Angiotensin-Converting-Enzyme) Inhibitors, commonly used to control hypertension, high blood pressure. Now widely accepted, these ACE Inhibitors have been shown to significantly reduce further kidney degeneration. In FDA Clinicals, the ACE Inhibitor Captopril (trade name Capoten) was given to patients showing early signs of kidney damage. It reduced fluid pressure in the kidneys, and cut in half the rate of kidney failure in its test population. Doctors have since prescribed other ACE Inhibitors, with similar results. Note: A diabetic experiencing kidney failure, but whose blood pressure is not elevated, can still use ACE Inhibitors for keeping fluid pressure down in the kidneys. This therapy has been shown to significantly reduce strain on eyes and cardiovascular system as well. Talk to your nephrologist about the ACE Inhibitors.
A new class of similar drugs is the Angiotensin II Receptor Antagonists (or ARBs). Teveten, the first member of this class to gain FDA approval, "may be of benefit in preserving renal function in patients with progressive renal disease," researchers state.
Aminoguanidine (Pimagedine) is another possibility. Tests are still underway, but this drug appears to reduce the damage done to the kidneys by excess glucose in the blood (and may reduce retinopathy as well). Other options are certain to materialize, both for those with impaired kidney function and for those whose kidneys have failed.
End Stage Renal Disease
The damaged kidney may worsen to the point (as described in "Testing Your Kidney," above) where it can no longer carry out its blood-purifying function. Now dialysis or transplantation are necessary in order to preserve life. This is ESRD, end stage renal disease. What are your options then?
There are three. In hemodialysis, the patient's circulatory system is temporarily linked with a machine that performs the blood–cleansing functions of the human kidney. In peritoneal dialysis (CAPD or CCPD) a tube is inserted into the patient's peritoneal cavity, allowing urine and unneeded fluids to periodically drain from the body. The third option is kidney transplantation, in which a donated kidney is surgically implanted into the patient's body.
According to U.S. Renal Data System (USRDS) figures, more than 304,083 Americans have ESRD, and 221,596 of these kidney patients are undergoing dialysis at this time. In 1995, the last year for which Centers for Disease Control (CDC) figures are available, there were 27,851 new cases of ESRD among persons with diabetes, and 98,872 diabetics were undergoing dialysis or transplantation treatment that year. National Institutes of Health statistics show that 35.9% of all individuals facing dialysis are there because of diabetes, and about 40% of those commencing dialysis or seeking a transplant at this time are diabetic. Some remain on dialysis long–term; others make use of the process while awaiting a kidney transplant. As an aside, before 1970, few diabetic ESRD patients were dialyzed; they simply sickened and died. Those who did dialyze faced a high mortality rate. Medicine has come a long way since then, and the odds have improved with the options. Dialysis techniques have improved substantially since my personal experience with them.
Dialysis
Dialysis is not an "artificial kidney." A person undergoing hemodialysis must be hooked up to a machine three times a week, three to four hours per session. A normal vein cannot tolerate the 16–gauge needles that must be inserted into the arm during hemodialysis, so the doctor must surgically connect a vein in the wrist with an artery, forming a bulging fistula that will better accommodate the large needles needed for treatment.
Like the kidney, a hemodialysis machine is a filter. Where it uses tubes and chemicals, the kidney uses millions of microscopic blood vessels, fine enough to pass urine while retaining suspended proteins. Long–term high blood glucose can significantly damage the kidney's filters, leading to scarring, blockage, and diminished renal function. Diabetes is the leading cause of kidney disease. Long–term diabetics often have cardiovascular and blood pressure problems, and the added strain of hemodialysis, with its rise in blood pressure straining eyes and heart function, can be too much for some. The diabetic dialysis patient spends, on the average, 33% more time in the hospital than does the non–diabetic dialysis patient, according to 1999 USRDS figures.
Some patients choose CAPD (continuous ambulatory peritoneal dialysis) or its variant, CCPD (continuous cycling peritoneal dialysis), both of which can be carried out at home, without an assistant. Unlike hemodialysis, which uses a big machine to remove toxic impurities from the blood, peritoneal dialysis works inside the body, making use of the peritoneal membrane to retain a reservoir of dialysis solution, which is exchanged for fresh solution, via catheter, every four to eight hours. CAPD is carried out by the patient, who simply exchanges spent for fresh solution, every four to eight hours, at home, at work, or while travelling. CCPD, its variant, makes use of an automated cycler, which performs the exchanges while the patient is asleep. Although more complicated and machine–dependent, it does allow daytime freedom from exchanges, and may be the appropriate choice for some. Though the risk of infections is heightened (as it is with any permanent catheterization), these two processes have advantages, one being that insulin can be added to the dialysis solution, freeing the patient from the need to inject, and giving good blood sugar control.
Transplantation
Kidney transplantation is a logical alternative for many. It substantially improves a patient's quality of life. Although the transplant recipient must be on anti–rejection/ immunosuppressive therapy for life, with the inherent risk from otherwise nuisance infections, a transplant frees the patient from the many hours spent on hemodialysis procedures each week, or from the periodic "exchanges" and open catheter of CAPD, allowing a nearly normal lifestyle. For those ESRD patients who can handle the stresses of transplant surgery, the resulting gains in physical well–being add up to real improvement in quality of life and overall longevity.
"Fifty percent of all kidney transplantations taking place today are into diabetics," states Giacomo Basadonna, MD, PhD, a transplant surgeon at Yale University School of Medicine, in New Haven, Connecticut. He reports that success rates are identical with kidney transplants performed on non–diabetic ESRD patients. "Today," he advises, "average kidney survival, from a living donor, is greater than 15 years."
One of the areas where we are seeing rapid improvement is immunosuppressive medication. The traditional mix of immunosuppressants: cyclosporine, prednisone, imuran, is giving way to more targeted medications that may have fewer side effects. Cellcept, by Roche/Syntex, and Rapamycin (Rapamune), by Wyeth/Ayerst, have been approved by the FDA, and others are being tested. The risk of organ rejection is always present, but each new development increases the chances of success.
I and others knowledgeable in kidney transplantation advise you to pick the best transplant center possible. Once you have read their statistics, ask your prospective center the following questions. If they don't answer to your satisfaction, you should consider going to another center.
1. Do you have an information packet for prospective donors and recipients?
2. Can you put me in touch with someone who has had a transplant at your center?
3. What is your "graft survival" (success) rate?
4. Who will my transplant surgeon be? If a fellow or resident, will he/she be supervised by a practicing transplant surgeon?
5. How long have your current surgeons been doing kidney transplants? How many have they done? That your center has 35 years experience with kidney transplants is of little consequence if my surgeon has only done ten in his or her career.
6. What is the average post–operative stay in your hospital?
7. When I come for my transplant, or come back for follow–ups, will there be any affordable housing for me and/or my family? (Ronald McDonald House, or other lodging with discount rates...) or will I get stuck in a luxury hotel for $125 a night?
8. How often will I need to come back to the center for follow–ups? Can my nephrologist do the blood tests and send you the results?
9. Can you recommend a nephrologist in my area?
10. Do you have a toll–free number to call for after–transplant information?
11. What is your policy on people with insufficient health insurance? Will you work with an uninsured patient? What will it cost?
12. Are you prepared to satisfy my doubts? Will you show me the documents that answer my questions? Will you guarantee the price quoted?
Transplant Patients Speak:
The following individuals are the real experts. Collectively, they have more than 146 years experience living with a transplant! All of them would choose a transplant again. Although kidney transplantation is not for everyone, and sometimes it doesn't work, it should be given strong consideration.
Eivind Frost, from Montana, received a cadaver kidney on April 24, 1973, at University of Minnesota Hospital in Minneapolis (now Fairview–University Medical Center), and is doing fine. He tells us, "I've been feeling great for 26 years now."
Ken Carstens, from Minnesota, who received his kidney transplant at University of Minnesota Hospital in Minneapolis, on September 10, 1975, states, "It's been 24 years now, and I'd make the same choice again."
Karen Mayry, from South Dakota, received her kidney transplant at University of Minnesota Hospital in Minneapolis, on January 12, 1977. She declares, "I feel great!"
Betty Walker, from Missouri, received her transplant on July 13, 1978, at Yale–New Haven Hospital in Connecticut. In her words: "I was just existing on dialysis; and my transplant gave life back to me."
Lenny Ruygt, from California, received her kidney at Presbyterian Hospital (now Pacific Medical Center), in San Francisco, on St. Patrick's Day, March 17, 1980. She says: "On dialysis, I had no energy at all--I would sleep all but two hours of a day. After my transplant, I felt energized!"
Linda Bingham, from Ohio, who received a dual transplant (kidney and pancreas) at University Hospital in Cincinnati, Ohio, on December 10, 1981, says, "I feel great. I have been given a whole new life."
Ed Bryant, from Missouri, received his transplant on August 9, 1983, at University of Minnesota Hospital in Minneapolis. He says: "There is no comparison between life on dialysis, and how I've felt since my transplant."
Facts and Statistics
What is the success rate for kidney–transplant surgery? According to the "United States Renal Data System 1993 Annual Data Report," published by the National Institutes of Health, about 75% for a cadaver–donated kidney, better than 90% with a kidney donated by a living relative, with an overall success rate of better than 85%, better than 90% in some centers. UNOS data indicate the averages (based on graft survival, healthy kidney, five years after transplant) are improving. The National Institutes of Health reports that current "graft survival" (donated kidneys successfully functioning in the transplant recipient) rates are approximately the same, whether the recipient has diabetes or not.
What percentage of type I diabetics will face ESRD? Current statistics suggest between 20 and 25%, with many factors (genetic, ethnic, lifestyle) taken into account.
Must the ESRD patient be on dialysis before being considered for a transplant? NO! Although some behind–the–times nephrologists still believe so, Fairview–University Medical Center's Transplant Center, which pioneered diabetic kidney transplantation, recommends that once your physician has determined kidney failure is on the way, further delay could be harmful. The more time spent subjecting your body to the toxic excesses of kidney failure and the strains of dialysis, the greater the risk of serious complications like retinopathy and cardiovascular (heart) degeneration.
Your nephrologist should be able to tell you more about your options. For information about kidney transplantation, contact a reputable transplant center (there are more than 252 in the U.S. today), or the United Network for Organ Sharing, 1100 Boulders Park, Suite 500, Richmond, VA 23225; telephone: 1-800-243-6667; website: http://www.unos.org All UNOS information is available on the World Wide Web, but they will also send you pertinent information, by mail, on any three transplant centers you request, without charge.
For information or assistance with interpreting transplant center data, contact: Health Resources and Services Administration, Bureau of Health Resources Development, Division of Transplantation, Park Lawn Bldg., 5600 Fishers Lane, Room 7C-22, Rockville, MD 20857; telephone: (301) 443–7577; website: http://www.hrsa.gov/osp/dot
Renal failure is not a kiss of death. There are options, and at least one of them will be right for you. Keep your diabetes under good control, and your blood pressure down, to cut the risks--but if it happens (like it did to me), remember that with proper care you stand every chance of living just as long as you would have with healthy kidneys.
More Resources:
American Association of Kidney Patients, 100 South Ashley Drive, Suite 280, Tampa, FL 33602; telephone: 1–800–749–2257; website: http://www.aakp.org/aakpteam.html. Publishes the quarterly magazine "Renalife," with articles about dialysis and transplantation.
American Kidney Fund, 6110 Executive Boulevard, Suite 1010, Rockville, MD 20852; telephone: 1-800-638-8299. Offers financial aid ($200 limit), provides written and phone information on kidney diseases. website: http://www.kidneyfund.org
Diabetes Action Network, National Federation of the Blind, Renal Failure—Dialysis and Transplantation Support Committee, 811 Cherry Street, Suite 309, Columbia, MO 65201; telephone: (573) 875-8911. website: http://www.nfb.org/voice.htm. Offers information, encouragement, and support on a person–to–person basis for diabetics.
Fairview University Medical Center, Patient Education Department, 420 Delaware St. SE, Box 603, Minneapolis, MN 55455; telephone: (612) 273-3354. Offers "The Transplant Handbook," prepared for patients facing kidney transplantation. Available in standard print or audiocassette, cost: $12 (print) or $30 (6 tapes).
National Diabetes Information Clearinghouse, 1 Information Way, Bethesda, MD 20892; telephone: (301) 654-3327; website: http://www.niddk.nih.gov/health/ diabetes/diabetes.htm Provides free and low–cost publications on aspects of diabetes.
National Foundation for Transplants, 1102 Brookfield, Suite 202, Memphis, TN 38119; telephone: 1–800–489–3863; website: http://www.transplants.org. Advice and instruction on fund–raising to cover transplant costs on any organ.
National Kidney Foundation, Inc., 30 E. 33rd Street, New York, NY 10016; telephone: 1-800-622-9010; website; http://www.kidney.org. Provides services such as: doctor referrals, patient peer counseling, education, medication programs, transportation, and financial services.
National Kidney and Urologic Diseases Information Clearinghouse, 3 Information Way, Bethesda, MD 20892; telephone: (301) 654-4415. Provides free information booklets such as #KU–50: "End Stage Renal Disease, Choosing a Treatment That's Right for You," and #KU-134: "Eat Right to Feel Right on Hemodialysis." Two new publications will be "dictionaries," of urologic diseases, and of kidney diseases. Contact NKUDIC for availability information. All publications are downloadable from their website: http://www.niddk.nih.gov/health/kidney/nkudic.htm
National Transplant Assistance Fund, PO Box 258, Bryn Mawr, PA 19010; telephone: 1-800-642-8399; website: http://www.transplantfund.org Helps patients set up fundraising programs to cover transplantation costs on any organ; also offers small emergency grants.
The Patient Travel Service, Fresenius Medical Care, Two Ledgemont Place, 95 Hayden Ave., Lexington, MA 02420; telephone: 1-800-634-6254. Provides referrals and information for dialysis patients wishing to travel anywhere in the world, who need dialysis facilities. Also offers free brochure, "On the Road...Again," a how-to guide for arranging dialysis away from home.
PhRMA, Pharmaceutical Research and Manufacturers of America, Publications Department, 1100 15th Street NW, 9th Floor, Washington, DC 20005; telephone: (202) 835-3400; website: http://www.phrma.org. An industry association, PhRMA publishes a catalog of member companies offering free or low–cost drugs/medications for the indigent, available for download from their website.
Stadtlanders Pharmacy, 600 Penn Center Boulevard, Pittsburgh, PA 15235; telephone: 1-800-238-7828; website: http://www.stadtlanders.com Medication, delivery, and insurance billing; organ transplant recipients receive free express delivery of medication, anywhere in the U.S.A.
United States Renal Data Survey, USRDS Coordinating Center, 914 S. 8th Street, Suite D206, Minneapolis, MN 55404; telephone: (612) 347-7776; website: http://www.usrds.org
NEW INSULIN DELIVERY SYSTEM TESTED
Diabetics who need to take insulin (type 1s and some type 2s) have had to use either the insulin syringe (the insulin pen is a type of syringe) or the insulin pump, both invasive ways to project a measured dose of medication under the skin.
Because insulin is digestible, an "insulin pill" would not work. Inhaled insulin works (its effects are detectable in the bloodstream), but there are still problems moderating the dose. Now another alternative is being tested.
Remember the "Nicotine Patch?" It looked like a BandAid, and released a tiny amount of nicotine through the skin, as an aid to smoking cessation. Scientists have wondered if such transdermal delivery could work for insulin.
It does work--but it has some problems. The nature of diabetes requires steady, precise and predictable insulin delivery, to preserve euglycemia. Too much or too little insulin can quickly cause an emergency. Different people have different skin types, and a given person's skin can change, due to age, weather, level of physical activity, or state of health.
Noven Pharmaceuticals, of Miami, Florida, is one of the companies exploring this technique, the medicated insulin patch. Its president, Steven Sablotsky, commented, "Research continues... If this proves to be a new way of delivering insulin, commercialization would still be several years away."
DIALYSIS AT NATIONAL CONVENTION
by Ed Bryant
Artwork: NFB logo at end of article
During this year's annual convention of the National Federation of the Blind in Atlanta, Georgia (Sunday, July 2, through Saturday, 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 contact the desired location in the Atlanta area for instructions, well in advance. NOTE: The convention will take place at the Atlanta Marriott Marquis, 265 Peachtree Center, in downtown Atlanta.
Individuals will be responsible for, and must pay out of pocket, prior to each treatment, the approximately $30 not covered by Medicare, plus any additional physician's fees, and any charges for other medications.
DIALYSIS CENTERS SHOULD SET UP TRANSIENT DIALYSIS LOCATIONS AT LEAST TWO MONTHS IN ADVANCE. THIS HELPS ASSURE A LOCATION FOR ANYONE WANTING TO DIALYZE. There are many centers in the Atlanta area, but that area is quite large, so early reservation is strongly recommended, to avoid long taxi rides!
Here are some dialysis locations:
* DIALYSIS CLINIC INC.–WEST PEACHTREE, 820 West Peachtree Street NW, Atlanta, GA 30308; telephone: (404) 888-4520.
* GAMBRO HEALTHCARE, 699 Ponce De Leon Ave., Suite 19, Atlanta, GA 30308; telephone: (404) 872-7211.
* GAMBRO HEALTHCARE ATLANTA, 400 Decatur Street, Atlanta, GA 30312; telephone: (404) 577-9097.
* GAMBRO HEALTHCARE, 524 West Peachtree Street, Atlanta, GA 30308; telephone: (404) 249-1563.
PLEASE REMEMBER TO SCHEDULE DIALYSIS TREATMENTS EARLY, TO ENSURE SPACE. If scheduling assistance is needed, have your dialysis unit's social worker contact me: Diabetes Action Network President Ed Bryant; telephone: (573) 875-8911. See you in Atlanta!
MORE ABOUT TEVETEN
Researchers are always looking for new medications to do a better job of controlling diabetes and coping with its complications. Last issue, VOICE Vol. 14, No. 4, we reported about a European study, in which the Angiotensin II Receptor Antagonist medication Teveten (eprosartan mesylate), proven beneficial in reducing hypertension (high blood pressure), appeared, much like its cousins the ACE Inhibitors, to reduce the fluid pressure in the kidneys, and thus the rate and severity of diabetic renal disease.
This is big news. While the ACE Inhibitors definitely work, in some individuals they may produce a dry cough much like that from smoking, and Teveten does not. People who cannot take the ACE inhibitors should be able to use Teveten.
Although the study, presented at the 21st Congress of the European Society of Cardiology, was primarily concerned with the reduction of high blood pressure, its authors point out that more than 2.5 million Americans have both diabetes and hypertension, and that for these people, the risk of heart disease is four times higher. Study presenters also pointed out that an estimated 30%--75% of diabetic complications are linked to high blood pressure.
Remember that you can have microalbuminuria (small amounts of the protein albumin in the urine), a sign of early kidney disease, even without elevated blood pressure. Preliminary data on Teveten suggest it has beneficial effects on reducing urinary protein excretion in proteinuric patients, thus may be of benefit in preserving renal function, where progressive renal disease is present. The researchers, and Teveten's manufacturer, Unimed Pharmaceuticals, Inc., stress these renal findings are positive but preliminary.
If you have diabetes and kidney disease, or diabetes and hypertension, ask your doctor about Teveten. Approved by the Food and Drug Administration in 1997 for the treatment of hypertension, it is available now.
ACE INHIBITORS: WHAT AND WHY
by Peter J. Nebergall, PhD
A significant percentage of diabetics will develop measurable nephropathy, kidney disease. Statistics suggest up to half of these people may progress to ESRD, end stage renal disease. So are you doomed?
No. First remember statistics measure the past, not the future, and medicine is getting better all the time. The outlook is MUCH better today than it was 20, 10, or even five years ago. Second, we have new tools proven to slow, maybe even halt, the progression from kidney disease into kidney failure.
The Angiotensin-Converting Enzyme ("ACE") Inhibitors are not new; they have been used for some time as a treatment for hypertension, high blood pressure. And they work. Doctors noticed that, for diabetics, they work especially well.
In 1993, a major study proved ACE Inhibitor Captopril, a common blood pressure medication, significantly reduced diabetic kidney degeneration. Based on these findings, the U.S. Food and Drug Administration has recommended use of Captopril for patients with early signs of kidney damage.
Doctors now prescribe many ACE Inhibitors, Lisinopril, Accupril, Ramipril, and others, to reduce fluid pressure on damaged kidneys and slow the progression of diabetic kidney disease. While the relationship between high blood pressure and diabetogenic kidney damage is obvious (cut the pressure--cut the damage), the kidneys have "pressure" of their own, and some doctors are prescribing ACE Inhibitors, to cut the kidney's internal fluid pressure, even where the diabetic's blood pressure is not measurably elevated. Small doses of the medication appear effective against diabetic kidney disease even when the blood pressure is "normal."
Of course you and your doctor need to proceed with caution, if you choose that route. Not because the drug is dangerous ("There are no contraindications for Ramipril or any ACE Inhibitors, in general, for persons with diabetes," says Arturo Rolla, MD, of Harvard Medical School), but because too high a dose can lead to the woozy symptoms of low blood pressure.
New research suggests further benefits from the ACE Inhibitors. A major Canadian study of Ramipril (trade name Altace), not limited to diabetics, showed the drug reduced heart attacks by 20% and strokes by 31% (in a test population of individuals with high blood pressure), but it also showed a significant reduction in outbreak of type 2 diabetes (in the test population), compared with a control group of similar individuals not receiving the medication. This last finding was not expected, and will require further study.
But the message is clear: If you have diabetes, and are beginning to show signs of kidney disease (microalbuminuria), regular therapy with the ACE Inhibitors can cut the progression of kidney disease, reduce the risk of heart attack and stroke, and may reduce risk of neuropathy and retinopathy as well.
And that's good news for the new year.
THE MENTAL DISCIPLINE OF THE MOVEMENT
by Marc Maurer
Photo: portrait. Caption: Marc Maurer
Dr. Maurer, President of the National Federation of the Blind, gave the following keynote address at our NFB annual convention banquet, in Atlanta, Georgia, on July 5, 1999. This article appeared in the BRAILLE MONITOR, October 1999 edition, published by the National Federation of the Blind.
* * * * * * * * * *
William Shakespeare thought that knowing what to do was easy. It was the doing of it that was so hard. As he said, "If to do were as easy as to know what were good to do, chapels had been churches, and poor men's cottages princes' palaces."
However, there are others who have a totally different point of view. They believe that knowing what to do is the hard part. Remarkable achievement is attained (according to these scholars) by thought--by exercising the ability to distinguish between the significant and the mundane. As the American bacteriologist Hans Zinsser said, "The scientist takes off from the manifold observations of predecessors and shows his intelligence, if any, by his ability to discriminate between the important and the negligible, by selecting here and there the significant steppingstones that will lead across the difficulties to new understanding."
Just as it is for an individual, so it is for a culture, a nation, or an organization. Each of these must attempt to identify the steppingstones of progress. To the extent that they achieve this difficult task and are committed to implementing what they learn, growth and advancement occur. To the extent that they fail, there are stagnation, deterioration, and aimlessness.
In the late summer of 1998, Dr. Kenneth Jernigan, the most forceful leader of the blind of our generation, taught a seminar on leadership. Although this seminar was conducted less than two months before Dr. Jernigan's death from cancer, which he knew would soon overtake him, the seminar was upbeat and enthusiastic; it took its tone from the teacher. He said during the class that principles of behavior are important--indeed they may be the only things that matter. If we have the proper principles, all else will follow. If we do not possess these vital characteristics for action and thought, the progress we gain is accidental and cannot endure.
So what are the principles for us--for the National Federation of the Blind? What do we believe, and how do we conduct our business?
I met Dr. Jernigan in 1969. I was a student, and he was the President of the National Federation of the Blind and the director of the training program in which I had enrolled. He was unusual, brilliant, fascinating, and challenging. One of his unusual characteristics was that he always had an answer for everything. How could anybody know so much, I wondered. I wanted to find out if he really had all that knowledge or if he was just good at faking it. I had never before met anybody who could outthink me at everything, but he seemed to be able to do it. I began to make bets with him. I thought there must be something I know that he doesn't, and I wanted to find out what it was.
It will come as no surprise to those who are familiar with Dr. Jernigan that I lost the wagers. However, I learned an important lesson. Dr. Jernigan used his mind--always and rigorously. When two facts did not match, he noticed this phenomenon and wanted to know why. He worked until he discovered the reason. Not only did he use his mind, but he demanded that we do the same.
"Whether you like a conclusion or not," he told us, "observe the evidence, and go where your mind leads you. If your reaction to a conclusion makes you uneasy, hunt for facts you have overlooked. If you cannot identify any, accept the conclusion. If you cannot stand what you learn, do your best to change it, but don't reject it from emotionalism or a chuckle-headed imprecision of thought." Consequently, one of the fundamental principles of the Federation is to trust your own mind--have confidence in your capacity to think. Believe in what you know, and don't let others talk you out of it unless they can demonstrate that they know more about the subject than you do. Use your head; work hard; and go where your mind leads you.
Dr. Jernigan joined the Federation in 1949, and he became active at the national level in 1952. For almost half a century he gave to us freely of his intellect, his energy, and his spirit. His mind was a formidable weapon in the arsenal of the Federation. One of the factors that made this mind so extraordinary was that Dr. Jernigan used it to insist that we employ the same rigor in thinking that he demanded of himself. He showed us that we cannot rely on somebody else's thought. Not only is this undesirable, but it is completely unworkable.
Any group that wishes to achieve freedom--that intends to speak and act on its own behalf--must be prepared to imagine and articulate its own philosophy. If that group intends (as we most certainly do) to have a long-term impact on the broader society, it must write that philosophy into an understandable literature, which can be read and comprehended. The mental effort involved in imagining what might be written and committing the ideas to paper changes the people who do it. The process of thought and creation and the act of internalizing the ideas that result from this process force us to know what we think and to plan for the implementation of that thought. This kind of planning is not only helpful, it is a fundamental part of building civilization. The philosophy and literature tell others what they may expect from us, but they also tell us--the people who think and write them. This is an essential part of relying on our own intelligence.
Where has our intelligence led us? You know as well as I. There are those who believe that the blind have little competence and less sense, that our lives are necessarily filled with bitterness and despair, that we are immobile and sedentary, that we cannot aspire to the business world or the professions, that our educational opportunities are limited, that we cannot become leaders of government or society, that we will never be able to compose and present to the public a literary description of our talents and abilities which will be sufficiently lucid to capture the imagination (and that somebody else will have to interpret our lives for us), that any suggestion of having blind people teach other blind people how to travel with a cane is irresponsibly dangerous or positively immoral, and that the assertion of the right of the blind to equal status within society is not only a ridiculous dream but also a prescription for failure--failure calculated to cause immeasurable harm and psychological trauma. Do we in the National Federation of the Blind believe that this summation represents the truth? Are the blind immobile, incapable, and inarticulate? Will we let somebody else determine our own destiny, specify our future, or speak on our behalf?
The answer is obvious. We, the blind of the nation from all walks of life, from every state, and from every sector of the society, have gathered here tonight in our thousands. We would not be here if we did not intend to determine what our lives will be. We have the capacity to observe; we have the mental discipline to understand; and we will respond. We are the blind; we will speak and act for ourselves; and there is no force on earth that can prevent it!
Throughout almost all of recorded history the blind have been written off, and the literature about blindness has reflected this opinion. Even though there have been many dramatically successful blind people, the common culture has dismissed the successes as exceptions. All too many of the successful blind people (because it boosted their sense of self-importance) agreed with the popular mythology. They accepted the view that blind people are unproductive invalids, but that they (the successful ones) are different and special.
With the coming of the National Federation of the Blind, an altered and much more realistic perception of blindness has been developed. This perception is that blindness need not be a tragedy--though, if it is not properly understood, it can be. With training and opportunity blindness can be reduced to the level of a physical nuisance, and the blind can compete on terms of equality with the sighted. We, the blind, are people of capacity, who want to make contributions to our society. We are people that the members of the public will want to know. An increasing number of us are leaders in our own communities and a part of the social set. Nevertheless, the misunderstanding of blindness persists, and it is reprinted and reinforced both by the popular press and sometimes by uninformed blind people themselves.
In 1997, Stephen Kuusisto published his memoir, entitled "Planet of the Blind." In his book he discloses that his vision (until he reached the age of 39) measured 10 percent of what is regarded as normal. Kuusisto could not see, but his parents urgently insisted that he try, and he accepted their attitude about his blindness.
On December 23, 1997, the "New York Times" published a review of the "Planet of the Blind." The review reflects the tone of the book. It incorporates quotes and describes incidents contained in the text; but it also adds reflections of its own--reflections in keeping with the spirit of "Planet of the Blind." This, in part, is what it said:
* * * * * * * * * *
For almost four decades, the writer Stephen Kuusisto tried to hide the fact that he was legally blind. Though he could read only by holding a book an inch from his face, though he could see little more on the street than blurry colors and shapes, he tried for years to pass as a member of the sighted world. He careened around his neighborhood on a bike, insisted on piloting his family's powerboat, traveled alone to Europe, and learned to ski.
* * * * * * * * * *
[I interrupt the "Times" review to point out that the reviewer and the author of the book apparently agree that such activities are reckless and irresponsible for a blind person. However, properly managed, there is absolutely nothing wrong with a blind person's learning to ski, traveling alone, or riding a bicycle. And a number of us have had our hands on the steering mechanisms of powerboats. But back to the review.]
* * * * * * * * * *
In his luminous new memoir "Planet of the Blind," Kuusisto--who lost his sight as an infant, when he was placed in an overly oxygenated incubator that permanently damaged his retinas--tells the remarkable tale of how he feigned sight for so many years. He also tells us the affecting story of how he eventually came to terms with his condition and began a new life, at the age of 39, with a seeing-eye dog named Corky.
So [continues the "New York Times"] how did Kuusisto manage to negotiate the world for so many years without help, without even a white cane to help reconnoiter its terrain? Part of it was sheer recklessness, a determination to plunge ahead, regardless of cars and walls and stairs. And part of it was reliance on wit and acting skills.
* * * * * * * * * *
[I interrupt again to ask, what is there about dealing with cars and walls and stairs that is so reckless for a blind person? Of course, it is much easier to manage these things using a cane; but all of us have ridden in cars, walked on stairs, and traveled around walls without using one; and the language of the reviewer is a bit much. Let us suppose for a moment that Kuusisto wanted to avoid these objects--how could he do it? Should he live under the stars on a flat patch of prairie and never stray from the reservation? Is this what the "New York Times" recommends for the blind? But back to the review.]
* * * * * * * * * *
He pressed his nose to the television set and used magnifying glasses and huge, thick, telescopic spectacles to examine books, slowly deciphering their elusive words one by one by one.
"The ordinary effort of reading is for me a whole-body experience," he [Kuusisto] writes. "My neck, shoulders, and finally, my lower back contract with pain. The legally blind know what it is to be old: even before the third grade I am hunched and shaking with effort, always on the verge of tears, seeing by approximation, craving a solid sentence. Then the words dissolve or run like ants. Nevertheless, I find a lighted room inside my head, a place for self-affiliation. I am not blind, and not the target of pranks."
* * * * * * * * * *
[I interrupt to ask, who does he think he's kidding? Not the target of pranks? Not blind? Able to find a lighted room inside his head? We know better, and if he is honest about it, so does he. But there is a ring of truth about part of this description. How many of us have been forced to try to read what we could not see? How many of our teachers have told us that, if we were not lazy, we would be able to observe visually what they have displayed? How many of us have felt the pain of trying to be sighted when we were not? How many of us have been sold a bill of goods--have been told that Braille is slow and inefficient when it would have been much easier and faster than the print they were trying to force us to use? But back to the "New York Times."]
* * * * * * * * * *
Having been brought up by parents who were reluctant to acknowledge his disability, Kuusisto internalized their denial. He did not want to get a white cane. He did not want to ask for help. He did not want to be regarded as someone who was blind. And yet for all his efforts to appear independent, he says he was continually mocked as odd and clumsy and slow. Schoolmates called him "Mr. Magoo," and one professor cruelly told him he did not belong in graduate school.
* * * * * * * * * *
[The "Times" review concludes with this paragraph] Although Kuusisto's love of poetry can result in patches of overly self-conscious prose--[such as] "my ego crawls around blindness like a snail exploring a piece of broken glass"--he is a powerful writer with a musical ear for language and a gift for emotional candor. He has written a book that makes the reader understand the terrifying experience of blindness and that stands on its own as the lyrical memoir of a poet.
* * * * * * * * * *
This is what the "New York Times" printed two days before Christmas just a year and a half ago, and it makes one wonder whether the author of the review and the author of the book ever use their heads. Kuusisto is, by his own estimation and by the opinion of the "New York Times," a lyrical poet and a powerful writer. Nevertheless, he looks down on his own life and belittles himself because he is blind. Kuusisto tells us that he has been misunderstood and that this has caused hardship. If these are the measures of a lyrical memoir, each one of us in this room should have one. Kuusisto admits that his own misperception added to the misunderstanding, and we can certainly agree with his assessment. The question we ask is whether Kuusisto's present writing will help to solve the problems he has identified or cause more damage. If the review of the "New York Times" is any indicator, it would be better if he had not written. The impression left by the "Times" is that living as a blind person requires extraordinary courage and that blindness itself is a terrifying experience.
We need a literature which tells of our hopes and dreams--our abilities and contributions--and we would like Kuusisto to use his lyrical pen to help in its creation. But he must tell it like it is--not perpetuate ancient fears and add to misinformation. Whether he writes it or not, it will be written because we will insist that it be written. Indeed much of it we have already written. We have the capacity to observe; we have the mental discipline to understand; and we have the ability to write. Our literature speaks of freedom, and we will settle for nothing less. We are the blind; we will speak and act for ourselves; the literature will tell our story; and we will be heard. There is no force on earth that can prevent it!
A notion abroad in the land, which has been repeated in many different forms during the past few years, is that blind people differ from the sighted not only because we lack the capacity to see, but also because our brains function in a different way from the sighted. The argument goes like this: Seeing is an important function that demands a lot of effort from the brain. A portion of the cortex is devoted to managing visual images; blind people do not use this cortex for seeing. The visual cortex of the blind is reassigned to assist the brain with the functions of smelling, tasting, touching, and hearing. Thus (according to this argument), the blind have a sharper sense of hearing, a keener sense of taste, a more acute sense of smell, and a clearer sense of touch than the sighted.
An article entitled, "Blind People Compensate with Hearing," which appeared on October 5, 1998, in the "Register Citizen," a newspaper of Connecticut, says in part:
It might be true what they say about the blind having better hearing than people who can see. Blind people apparently compensate for their lost vision with greater ability to locate sounds than people with normal or partial vision, a Canadian study suggests. Neuropsychology researchers at the University
of Montreal found that, unlike people with normal vision, blind people could correctly pinpoint the source of sounds even with one ear deliberately blocked by the testers. "One important question left unanswered is whether blind people learn to use their hearing more efficiently or undergo some kind of physiological change," said William R. Wiener, chairman of blind rehabilitation at Western Michigan University. Wiener said other recent research suggests, "There may be some physiological changes that occur in the brain in the processing that make a blind person more efficient." Dr. Steven Parker, director of developmental and behavioral pediatrics at Boston Medical Center, said, "It is possible that part of the brain commonly used to process images gets recruited to process sound. But in the partially blind, those brain cells already are being used for sight, and they can't switch over."
That's what the article says, and I wonder if the researchers are willing to take the argument the whole way. Blind people are able to hear better, they say, because we have lost our sense of sight. What would happen to us if we had also lost our senses of taste, touch, and smell? Our hearing would be so acute that we would be able to hear the ordinary sound a mile away, and the whisper in the next room would be plainly audible. Imagine the advantages. The CIA would no longer need all of those listening devices; it could use us.
Or imagine the sense of touch. Some years ago the argument was made that blind people are better at kissing than the sighted because we are not distracted by extraneous visual images. However, William Wiener puts the matter on a different footing. We kiss better (it could be argued) because we have an enhanced sense of touch. Is the improvement noticeable only by the blind, or can the sighted enjoy it too? What about the deaf-blind? Is their sense of touch superior to that of those who are only blind? If they had lost the senses of smell and taste, the experience of kissing might be so keen as to put them into orbit.
Or consider another line of thought. Why is it that the researchers believe the reassignment of the cortex affects only the senses? Maybe the blind, who do not use their brains for seeing, employ this unused mental capacity for more intellectual pursuits. Maybe we use the brainpower to think; maybe we are smarter than the sighted.
Our experience shows us that such speculation is just that--speculation. We don't believe our loss of sight has altered our mental processes. I will admit that some of the blind people I have met possessed most unusual ideas, but their thinking was no more bizarre (and no less bizarre) than the mental gymnastics I have sometimes observed from the sighted--especially those with experiments to perform on the blind.
We say this to the experimenters. If you want to know what blind people are like, come to us--come to the convention of the National Federation of the Blind--come to us in our thousands. We will help you learn what blindness is--and of equal importance--what it is not. But keep in mind that we insist on equality in the Federation. If you insist on conducting experiments on us, we think it is only fair that we be able to conduct a few on you.
You may have thought that the negative stereotypes that were once so often associated with blindness are a thing of the past--that they existed at one time, but that nobody could possibly believe them today. Even if there remain a few unenlightened souls who think the blind are inferior and the techniques employed by the blind are second-rate, surely this attitude could not prevail in the highly-educated and well-informed circles of programs established to serve the blind.
On August 12, 1998, leaders of the Puerto Rico affiliate of the National Federation of the Blind appeared before a committee of the legislature to urge that a bill be adopted to secure the right of the blind to learn Braille. The head of the Puerto Rico Rehabilitation Administration, Dr. Jose Santana, the man responsible for directing programs in Puerto Rico, established to ensure that the blind learn what they need to know, gave testimony against the bill. He said that teaching Braille to a blind person with any residual vision whatsoever, no matter what skills or talents that person may possess, is anti-pedagogical, anti-democratic, and cruel. He said that becoming blind is a form of dying. He compared the teaching of Braille (if you can believe it) to having a healthy person, on the theory that the person will one day die, climb into a coffin. Such testimony boggles the mind.
Our experience is that Braille is a liberating skill, one that encourages independence and expands opportunity. Dr. Santana argues that achieving literacy for the blind is similar to seeking death. And they tell us that we have psychological problems. What are the psychological implications of Dr. Santana's argument? Does he believe that he is a whole person but that we who are blind are not? Does he believe that we are inferior and that he is superior? Does he believe that administrators of programs for the blind are put in place to look down upon the clients they are supposedly working to serve?
Dr. Santana would deprive us of our method of reading; he would insist that the blind be illiterate. He thinks we are already partly dead, but we will not let his lack of understanding help us into the grave. We will not let his psychological need for superiority govern our future.
We reject Dr. Santana's formulation and all of the psychological myths--the hidden insecurity and the unspoken fear--that are part of this ignorant misperception. We want freedom, and Braille is one of the elements that will help us get it. We will not let narrow-mindedness or bigotry on the part of administrators of programs for the blind keep us from it. Dr. Santana believes he speaks for the blind, but he cannot--and he never will speak for us. We will express our own views, and we will be heard. There is no force on earth that can stop us!
Although an increasing number of the members of the public have come to recognize the struggle of the blind to achieve first-class status in society and have joined with us in this effort, there are a few who still believe blindness signifies a complete lack of the ability to contribute. These unenlightened people think that we, the blind, are unable to earn anything and that whatever we have must have been given to us. They hold the view that the only contribution possible for the blind is to serve as the objects of somebody else's pity, and they want to feel pity for others because they gain a sense of superiority from doing so. They think that we who are blind want something for nothing. Unfortunately, some blind people help to support this negative and uninformed understanding.
On March 8, 1999, an article appeared in "Newsweek" Magazine, entitled "Navigating My Eerie Landscape," by Jim Bobryk, a blind person living in California. Bobryk's description of his own experience is a strange mixture. It demonstrates that his training in the skills of blindness has been minimal, that he has not come fully to accept or understand blindness, that his determination to carry on the activities of living is reasonably firm, and that he is looking for ways to exploit his blindness. Here, in part, is what Bobryk says:
* * * * * * * * * *
Now, as I stroll down the street, my right forefinger extends five feet in front of me, feeling the ground where my feet will walk.
* * * * * * * * * *
[I interrupt to point out that this is a catchy way of saying that Bobryk uses a cane. He is not a freak with a five-foot-long finger; he is blind with a cane in his hand. But back to the article.]
* * * * * * * * * *
Before, my right hand would have been on a steering wheel. I drove to work, found shortcuts in strange cities, picked up my two daughters after school. Those were the days when I ran my finger down a phone-book page and never dialed information. When I read novels and couldn't sleep until I had finished the last page. Those were the nights when I could point out a shooting star before it finished scraping across the dark sky; and when I could go to the movies, and it didn't matter if it was a foreign film or not.
But [Bobryk continues] all this changed about seven years ago. I had battled glaucoma for 20 years. Suddenly, without warning, my eyes had hemorrhaged. I now have no vision in my left eye and only slight vision in my right. A minefield of blind spots makes people and cars suddenly appear and vanish. My world has shapes but no features. Friends are mannequins in the fog until I recognize their voices. Printed words look like ants writhing on the page. Doorways are unlit mine shafts. This is not a place for the fainthearted.
* * * * * * * * * *
[I interrupt again to point out that Bobryk uses the language to ask for sympathy. Life was good before blindness, but now it is filled with minefields and unlit mineshafts, with no foreign films and no driving, with no books at night before bed, and no stars. Of course a doorway is not an unlit mineshaft, but the image of falling and danger is enhanced by such hyperbole. The message here is not complex. Bobryk says: give me pity; I am blind. But back to the article.]
* * * * * * * * * *
My cane is my navigator in this eerie landscape. Adults will step aside without comment when they see me coming. While I'm wielding my stick, strangers are often afraid to communicate with me. I don't take this personally--anymore. Certainly they can't be afraid that I'll lash out at them with my rod. (Take THAT, you hapless sighted person! Whack!) Still, [Bobryk says], I refuse to take a dim view of this.
* * * * * * * * * *
[Once again I interrupt to say that this part of the narrative is slightly more complicated. It indicates isolation, frustration, and anger. The white cane is a symbol of independence and a means of travel, but in Bobryk's hand it is (at least in his own mind) an instrument for separation from the public--not a means for participation in society. And it is also a potential weapon to be used against the undeserving. Nevertheless, he continues to use the cane because it gets him where he wants to go. However, he thinks of it as an element of an eerie world--one filled with loss, regret, and bitterness. The cane is not a valued part of an independent life; it is a necessary evil. But there is more in the article. Bobryk continues.]
* * * * * * * * * *
It's not like it's inconvenient for friends to help me get around. Hey, have disabled parking--will travel. Christmas shopping? Take me to the mall and I'll get us front-row parking. Late for the game? No problema. We'll be parking by the stadium entrance. And if some inconsiderate interloper tries to park in the blue zone without a permit, he'll either be running after a fleeing tow truck or paying a big fine.
So you see [Bobryk continues], I'm a good buddy to know. I just carry a cane, that's all. None of this is to make light of going blind. Being blind is dark and depressing. When you see me walking with my cane, you may think I'm lost as I ricochet down the street. But you'll find more things in life if you don't travel in a straight line.
* * * * * * * * * *
This is the description of blindness that appeared less than four months ago in "Newsweek" Magazine. Blind people can't walk in a straight line; we ricochet through the world. Ours is a dark and depressing existence. We take what we can get and have little or nothing to give in return, except a handicapped parking space close to the stadium entrance. Bobryk exploits his blindness, and he does it deliberately--extracting privileges from the public that are not necessary, on the false and destructive premise of pity. Then he complains about isolation and backlash.
"Newsweek" printed this story as one acceptable way of understanding blindness, but it is not acceptable to us. Blind people are not all angry, frustrated chiselers. We are not victims, and we refuse to act the part of beaten-down, sniveling whiners. A new literature about blindness is needed, and we, the organized blind, are setting the pattern of its formation. The "Newsweek" article represents the comprehension of a former day and is an illustration of the literature of a bygone era. Its appeal to emotionalism is thin and superficial. Unlike our literature, its pattern is so thoroughly recognizable that the text demands almost no thought at all.
In our literature we speak not of anger, but of a willingness to work; not of pity, but of self-reliance; not of exploitation, but of a shared commitment to join with others to build a better future. We have the capacity to think and the mental discipline to tell our own story. Our struggle for independence is real, and increasingly the insight of reporters is recognizing the drama. The previous image was wrong, and we are helping them replace it. We are the blind, and we will speak and act on our own behalf. There is no force on earth that can prevent it.
Much of the work of the National Federation of the Blind is done through correspondence. We write thousands of letters each year and distribute them to millions of people. We include with our letters literature about blindness, especially Kernel Books. Part of our mailing program is intended to educate the public, and part of it is designed to locate individuals who need our help. Of course we receive thousands of responses. Some of them are articulate and literary, but others are written in the simplicity and eloquence of need. Here are excerpts from one of these:
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I'm very much in need of assistance for my nine-year-old daughter Satoria; she was born blind. She had surgery on her eyes when she was one week old. And by the grace of God she can do a lot of things. When she were two years old, she would take books from the shelves and sit on the floor and try to read them. And I ran out of the room where she were, and I started crying my poor little heart out until I couldn't cry no more. And when she got ready for Head Start, she was going ahead of everybody in class. She has a visually impaired teacher comes in and out of her class, checking on her. But it is very hard for me. These people wants me to work while I have a child that can not see almost to cross the street. I be frightened that some one will call me and say, "Your daughter has got hit by a car," or anything. I'll tell you, this have me worrying, depressed, and nervous. They really don't understand. I am a single parent with no transportation in the city of New Orleans. But I'm glad this [letter] were sent through the mail--the first thing I've got. You know we gets a lot of junk mail. I want my kids to grow up right--feeling comfortable. Sometimes I really have it hard, and Satoria don't have a van to pick her up to go to the clinic or no trainers to help her just in case her sight leaves completely. I don't have enough of money to get her the help she needs. But I'm going to send what I can afford. But thanks to that man upstairs; He's still blessing me and my kids. I'm pleased to meet you and hope I hear from you in the future.
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Such is the letter from the mother of a blind nine-year-old child--a mother who has almost no resources, few contacts, little knowledge of the system, and no realistic appraisal of what to expect of her child. She cares deeply, and she is willing to give of the little that she has. However, she is worried about the future for her child, and she does not know what to do. She has received our message of hope and belief, and she has begun to wonder if the opportunities we describe can become a part of life for her daughter. Although she is not accustomed to writing, she has put words on paper and spoken from the heart. She needs money, but this mother is afraid to work because she believes she is needed constantly to watch over her child. This adds to the economic hardship of the family. Despite this hardship she is prepared to give to us from what she has because we offer an opportunity which exists nowhere else. I understand this feeling (as we in the Federation do), for I have children of my own, and a sacrifice to assist them is one way of believing in the goodness of tomorrow. We, in the Federation, must create opportunities for the children of today that never existed for us, and of course we will. Because Satoria's mother has written, her daughter will have an expanded future, for we will do what we can to help with that future.
In 1940 (almost six decades ago), the National Federation of the Blind was founded by Dr. Jacobus tenBroek and a handful of other stalwart people at Wilkes-Barre, Pennsylvania. Circumstances faced by the blind in those days were extremely poor, and prospects for the future were almost equally dismal. But Dr. tenBroek and those others knew that the only method for improving the future for the blind was to form a mechanism through which the blind themselves could take action to bring pressure on private and public programs for the blind, to challenge commonly held beliefs about blindness, to institute policy reforms respecting blind people, and to take other action to stimulate enhanced opportunity for the blind. That mechanism is our organization--the National Federation of the Blind.
Twelve years later, the founder of the Federation, Dr. Jacobus tenBroek, and the builder of the Federation, Dr. Kenneth Jernigan, met at a National Convention of the organization in Nashville, Tennessee, and formed a lifelong friendship. Dr. tenBroek continued to lead the movement until his death in 1968. He was more than a President; he was the charismatic leader and the magnetic orator. Dr. tenBroek loved the Federation, and his love was evident in his leadership. He also loved Dr. Jernigan, who became President of the organization at the time of Dr. tenBroek's death in 1968, and who served as the leader of the movement for the next 30 years.
Under Dr. Jernigan's leadership the Federation expanded to every corner of the nation, and the number of its activities increased exponentially. The aids and appliances program of the Federation was established; leadership training seminars were commenced; presidential releases on cassette were distributed; Christmas programs were recorded; public service announcements for television and radio were prepared; the National Center for the Blind was discovered, remodeled, and furnished; a number of magazines were founded including the VOICE OF THE DIABETIC and FUTURE REFLECTIONS, the magazine for parents and educators of blind children; training centers for the blind came into being in Louisiana, Colorado, and Minnesota; greater harmony than had ever existed in the past was fostered among agencies for the blind and organizations of the blind within the United States and beyond our borders; the staff of the Federation was hired, trained, and integrated into the fabric of the organization; the International Braille and Technology Center for the Blind was established; the Kernel Book series was initiated and the books themselves distributed to millions; the NEWSLINE(R) for the Blind network was invented and put into operation; the America's Jobline system was developed; and funding to support all of these programs and dozens of others was secured.
In his hands the Federation became a solidly harmonious and unified organization with purpose, drive, and force. A corps of leaders throughout the movement was trained at the local, the state, and the national levels in the mechanisms of the Federation and the techniques of its governance. Dr. Jernigan also loved the Federation, and his love was equally evident in his leadership.
Dr. tenBroek died more than thirty years ago, and Dr. Jernigan drew his last breath in the fall. But the spirit of these two magnificent leaders is with us still. It is present in the scholarships we grant, in the programs we pursue, and in the literature we publish. They have given us a method of thought and a habit of living; they have given us the inspiration to move forward with confidence in ourselves and in each other. They never failed to plan ahead, and we have learned from their example to do the same.
So what of tomorrow--what does the future portend for us? Will we be misunderstood and belittled by the press? Will the so-called scientific researchers (aided and abetted by some of the less well-informed agency officials) tell us that our minds operate differently from those of the sighted? Will certain administrators of programs for the blind declare that being blind is a form of dying and challenge our right to learn Braille? Will weak-spirited blind individuals seek something for nothing on the basis of pity and encourage the press to print, for public display, their lack of confidence as if it were news? Yes, all of this will occur and more. We will face misunderstanding of our talents and capacities, mischaracterization of our actions and beliefs, and misrepresentation of our purposes and objectives. Furthermore, we will not always have the resources to meet the immediate needs that will come our way. But will this cause within us, or within our movement, a crisis of confidence? Not a bit of it! We have set our objectives, and we will not waver until we have reached our goal.
Yes there will be problems aplenty. But we have the means for solving them. We have our own resources, and increasingly we have the goodwill and the understanding of others. Some members of the press misunderstand us, but many others don't. Some agency officials think us inferior, but many others have joined with us in the effort to bring acceptance for the blind into the public mind. Some researchers regard us as abnormal, but many others recognize us for what we are. Furthermore, we ourselves are, in ever greater numbers, being welcomed as members of the press, administrators of programs for the blind, and researchers within the scientific community. At one time we were alone, but today we have more colleagues and more friends than ever before in history. And, of the greatest importance, we have each other. We have the Federation in all its depth and strength--and who could ask for more?
In 1986, you elected me President of the Federation, giving to me the highest honor that anybody can bestow. I have done my best to take my standard as President from Dr. Jernigan, who (in his turn) took his standard from Dr. tenBroek. I have tried to lead our movement with understanding, good judgment, and firmness.
We, in the Federation have a shared bond of love and trust from me as President to you the members, and from you to me. As long as you want me to do so, I will do my best to continue to lead our movement. I will be willing to stand in the front lines and to take whatever comes without flinching or equivocating. I will give freely of my time, my energy, my imagination, my resources, and my commitment; and I will meet the problems we face head-on. I will not ask of you what I am not prepared to do myself. This is my obligation and my pledge.
You the members of the Federation also have an obligation to the movement and to me as President. I will expect you to give of your time, your energy, your imagination, and your resources. When the challenges come to us and the difficult times arise, I will ask you to support the movement and me--to give me your dedication and your commitment.
If we as a movement--if we, the great body of the Federation--are not prepared to give all that is good within us, our growth and progress will diminish or cease to be. But we will not hesitate or turn back. The stakes are too high and the cost too great to permit it. We have tasted freedom, and we can never again be satisfied with anything less than full independence for ourselves and those who come after us. Those who preceded us--Dr. Jacobus tenBroek, Dr. Kenneth Jernigan, and those thousands of others in the movement--have carried the banner, have sacrificed to gain opportunity for us, and have fought the battles so that we might comprehend what can and will be ours. They led and we followed; now it is our turn to lead. The spirit they kindled can never be extinguished because we will fan the flame--we will add fuel to the fire--and we, the members of the movement, will cause a great conflagration.
We are the blind of more than a single generation, of every segment of society, and of every part of the nation. We have the capacity to think and the mental discipline to reach conclusions that will alter the future for us all. We possess the confidence to bring those conclusions to reality. Nobody else can do it for us; we must do this for ourselves; and we will! Our future is bright with promise because it belongs to us, and there is no force on earth that can stop us. Come, and we will make it come true!
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NOTE: Copies of this article are available, free, in large print, Braille, or audiocassette, from the National Federation of the Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314; fax: (410) 685-5653; or downloadable from the NFB Website: http://www.nfb.org
HELEN SPRIGGS: RUNNING AGAINST DIABETES
Photo: portrait. Caption: Helen Spriggs
Artwork: NFB logo at end of article
Helen Spriggs, from London, England, has been a type 1, insulin dependent diabetic for 13 years. She also regularly competes in the marathon, the 26.2 mile foot race. How does she do this? More important--why?
"I had always been interested in the marathon," she says. "What a great, inspiring thing to watch people do that; the kind of passion people had about it; the whole atmosphere. At age 13 or 14 I thought there was no way a person with diabetes could ever do that. When you're first diagnosed...you feel you can't achieve the things other people can. Ten years later, I decided I want to do this, to prove to myself...that I can apply the skills and perseverance I've got from managing my diabetes to anything."
Helen's doctors were not initially supportive. "There is no way we can control your diabetes, I've not had another patient that's run a marathon, I have no experience with this..." they told her.
"It appeared they were very negative...rather than adopting a can-do attitude, kind of saying 'no, don't do it,' rather than 'we don't know, but we can work with you.' So that made me far more determined..."
"The first marathon I did was on April the 14th, 1997, which was also my 24th birthday," Helen explains, "so it just seemed like a good way to celebrate it. It was really just to prove to myself that I can control diabetes; that diabetes is not going to get control of me. Diabetes is not going to win this race--I am."
Helen points out that there is not a lot of information about diabetes and extended exercise. She had to evolve her own routines: different types and amounts of insulin, injection frequencies, when and what to eat on the way, and the right glucose monitor for testing while running.
Some details are easy: She uses a pen filled with quick-acting Humalog insulin, and Bayer's unique Glucometer Dex:
"I tested about eight times while I was actually running. With the Dex there is no need to actually stop (to do the test). Because it is pre-loaded with the strips (10 tests per load), and the way in which it gets the blood sample, the Dex just sucks the blood in, you can run and move about. This has been a huge improvement for me, and it's helped me reduce my time from previous runs."
While Helen runs, she carries fluids, glucose tablets, Gatorade energy drink, and fruit-flavored candies, and, because she can carry only so much in her pack, periodically stops at stands along the way for fluids. Many of these stands are operated by the International Diabetic Athletes Association (IDAA), and they even offer blood glucose testing--but Helen has her Dex.
Last November 7, Helen ran the New York City Marathon, along with about 30,000 other brave souls. She finished it in five hours, 37 minutes, and four seconds. Her average blood glucose, during the race, was about 100mg/Dl. Although she didn't win this race, she competed and finished without difficulty.
Try running a mile, or five miles. Then imagine running more than 26 miles, and you'll see that even without diabetes, running marathon races takes a very special degree of commitment and dedication. Why does Helen run?
"It's about me taking control, and managing it through the 26.2 miles. And, I think as well...if I can change just one person's outlook on diabetes, if I can make a difference to one person, make them sit up and listen, take control of their diabetes instead of their diabetes controlling them, then I've won the greatest race. It didn't matter that I didn't come first in the race, out of all the runners; to myself I came in first if I change one person's perception of diabetes. If I change one person's views by running it, that's a win--I've won."
When not in training for the next marathon (she has competed in six), Helen works as a counselor and fund-raiser, for the British Diabetes Association's Youth and Family Services Team. By serving as an example and role model for young people with diabetes, Helen Spriggs is indeed a winner!
GLUCOWATCH MONITOR APPROVED
On December 6, 1999, the U.S. Food and Drug Administration's Clinical Chemistry and Clinical Toxicology Devices Panel, part of the FDA's Medical Devices Advisory Committee, met for a final review of the Cygnus GlucoWatch Biographer. They voted to recommend approval of the machine for marketing in the United States.
Although final FDA approval, after this committee vote, is a formality, the age of trouble-free noninvasive glucose monitoring is not here just yet. What has been achieved?
The GlucoWatch reduces--it does not eliminate--the need for finger-stick blood glucose testing. It utilizes a consumable pad, the "sensor," which must be replaced every 12 hours. Each new pad requires "calibration," which requires a conventional finger-stick glucose monitoring test.
The GlucoWatch does indeed provide repeat monitoring--but up to once every 20 minutes--but it is not "continuous monitoring." What it does offer is a programmable low-glucose alarm, that will sound an alert if the wearer drops below a user-determined level, helping to avert hypos.
Final pricing is not set, but the company expects to charge about $250 for the hardware (which should last 3 to 5 years, they say), and $4 each for the sensor pads. As the GlucoWatch utilizes continuous low voltage electricity to work, you can expect to go through a lot of AAA batteries too.
The device avoids the need to draw blood for each reading by establishing a chemical coupling through the skin. It reads not blood glucose, but interstitial fluid glucose, roughly analogous to the "sweet" in your sweat. It works, but some 10% of test users reported minor skin irritation at the test site.
Does the GlucoWatch work? The FDA thinks so. Has it been tested on children? Not yet. Is it for everyone? No, it represents incremental improvement, and an expansion of our glucose testing options. Is it available for sale yet? No, but VOICE OF THE DIABETIC will tell you when it becomes commercially available.
EYE STUDIES SEEK VOLUNTEERS
Carolina Eye Associates, an eye physicians' group serving the Carolinas, east Tennessee, north Georgia, and tidewater Virginia, is participating in several trials of investigational treatments for diabetic eye complications. They are seeking volunteers, and you may qualify. Those accepted will receive free examinations and eye care for the duration of the study.
One study is of an investigational medication for non-surgical treatment of vitreous hemorrhage. As the majority of these cases follow proliferative diabetic retinopathy, this medication is of great interest.
The new medication, called Vitrase, is designed to help clear blood from the vitreous without vitrectomy surgery. They need volunteers, 18 years or older, who have recently experienced bleeding in the back of the eye.
Another study is of an investigational drug to treat diabetic macular edema. For this study, free pre-screenings are offered, with detailed eye examination--and the patient will be informed of the results, and appropriate physician reference provided. Those found eligible will be more fully informed about the study. For information about either of the above studies, call: 1-800-451-2752.
A number of sites in the U.S. are participating in the next study, of a new way to "seal" bleeding retinal capillaries without laser surgery. The condition is called "wet AMD," and the new treatment utilizes a combination of chemicals and focused light. This study, called "Photopoint" is seeking men and women over age 50, who have been diagnosed with wet AMD, and who have not had prior laser treatment. If you are interested in this study, please call: 1-800-451-2752, or (919) 781-2127.
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BLINDNESS BOOK AVAILABLE
The National Federation of the Blind has a resource for people who are newly blind, losing vision, or experiencing visual impairment. Packed with hints and tested advice, this book, IF BLINDNESS COMES, is available in large print, 2-track (music) or 4-track (NLS format) audiocassette, free of charge from: National Federation of the Blind Materials Center, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314. The Materials Center is open 12:30pm to 5pm Eastern Standard Time, weekdays.
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."
RECIPE CORNER
Artwork: Fruits and vegetables
Send your great food ideas to the editor. Your recipes will be evaluated by dietitians, and if necessary, adjusted to make them more diabetically appropriate. Then he gets to taste them...
This issue, all our recipes were provided by Linda Coffee and Emily Cale, authors of "The Diabetic Four Ingredient Cookbook," whose many recipes, fully analyzed for carb–counting and diabetic exchanges, really do contain only four ingredients each. Contact: Coffee & Cale, PO Box 2121, Kerrville, TX 78029; telephone: 1-800-757-0838.
Cottage Cheese -- Cucumber Spread
Ingredients:
1 cup cucumber (finely chopped)
1 cup small curd fat-free cottage cheese
dash pepper
minced chives
Instructions:
Mix cucumber, cottage cheese and pepper. Spread on low-fat whole wheat crackers, and garnish with minced chives.
(Serving size -- per teaspoon). Per serving: 4 calories; 0g fat; 0g saturated fat; 20mg sodium; 1g protein; 0g carbohydrate; 0mg cholesterol; 0g fiber. Exchanges: Free food up to 7 tsp. (8 tsp. = 1 very lean meat).
Homemade Fat-Free Tortilla Chips
Ingredients:
Corn tortillas
1/4 teaspoon cumin
1/4 teaspoon pepper
1/4 teaspoon salt
Instructions:
Cut a stack of tortillas into eight wedges each. Spread wedges in a single layer, on a baking sheet. Sprinkle with cumin, pepper, and salt (optional). Bake at 375 degrees for about 10 minutes, or until crisp and dry. Monitor chips; do not overbrown. Turn after five minutes. Store in air-tight container. When serving, freshen up in microwave about one minute. Let sit five minutes before serving, or they will be soft and chewy.
Serving size: 20 chips. Per serving: 140 calories; 2g fat; 157mg sodium; 4g protein; 29g carbohydrate; 0mg cholesterol; 0g fiber. Exchanges: 2 breads.
Mandarin Salad
Ingredients:
2 tomatoes (peeled and sliced)
2 cans (11 oz. each) mandarin oranges, drained
� cup onion (thinly sliced)
3 cups lettuce leaves (torn into bite-sized pieces)
Instructions:
Combine ingredients. Good served with Orange Juice dressing (recipe follows)
Per 3/4 cup serving: 56 calories; 0g total fat; 0g saturated fat; 12mg sodium; 1g protein; 14g carbohydrate; 0mg cholesterol; 1g fiber. Exchanges: � vegetable, � fruit.
Orange Juice Dressing
Ingredients:
1/4 cup orange juice
2 teaspoons red wine vinegar
1 tablespoon canola oil
2 teaspoons honey
Instructions:
Mix above ingredients and pour over mandarin salad.
Serving size: 2 tablespoons. Per serving: 33 calories; 2g fat; 0g saturated fat; 1mg sodium; 0g protein; 3g carbohydrate; 0mg cholesterol; 0g fiber. Exchanges: � fat.
Stuffed Bell Peppers
Ingredients:
4 bell peppers
1-1/2 pound lean ground beef
1 package Sloppy Joe seasoning mix
1 cup tomato sauce (no salt)
Instructions:
In nonstick skillet, brown meat. Drain off remaining fat from pan. Add Sloppy Joe mix and tomato sauce. Simmer for five minutes. Fill peppers with meat mixture and place in a baking pan. Pour 1/8-inch water in baking pan, around bell peppers. Cover with foil, and bake at 350 degrees for 25 minutes. Four servings.
Serving size: One pepper. Per serving: 339 calories; 14g fat; 5g saturated fat; 693mg sodium; 35g protein; 18g carbohydrate; 87mg cholesterol; 4g fiber. Exchanges: � starch, 2 vegetables, 4 � ounces lean meat.
Fat-Free Cherry Cobbler
Ingredients:
2 cans (16 oz.) water-packed sweet cherries (drained, reserve the juice).
� cup self–rising flour
1/4 cup sugar
2/3 cup skim milk
Instructions:
Place cherries, and 1/3 cup of the reserved juice, in a 9-inch square pan. In a medium bowl, mix together flour, sugar, and milk. Pour evenly over cherries. Bake uncovered at 350 degrees for 45 minutes. Makes 6 servings.
Serving size: 1/6 of cobbler. Per serving: 153 calories; 0g fat; 0g saturated fat; 138mg sodium; 3g protein; 37g carbohydrate; 0mg cholesterol; 2g fiber. Exchanges: � fruit, � starch.
NATIONAL FEDERATION OF THE BLIND SCHOLARSHIP PROGRAM
The National Federation of the Blind will award $128,000 in scholarships this year. Individual scholarship amounts range from $3,000 to $21,000, and the competition is open to any legally blind individual who will be a full-time, post-secondary student in Fall 2000.
All 30 scholarships are merit-based, and most are unrestricted. Entries will be judged on the criteria of academic excellence, financial need, and service to the community. The committee making the award decisions will be composed of blind citizens with distinguished academic and community backgrounds from across the country.
The scholarship winners will be presented their awards in July, at the 2000 convention of the National Federation of the Blind, in Atlanta, Georgia. The NFB will also pay all expenses of scholarship winners to attend the convention.
Each scholarship winner will also receive $1000 cash, and $1500 of software and scanner equipment, given by Dr. Raymond Kurzweil, in honor of Dr. Jernigan, former President of the NFB. This is in addition to the Federation's scholarship amounts.
The National Federation of the Blind is an organization dedicated to creating opportunity for all blind persons. With more than 50,000 members, it is the largest organization of blind citizens in existence, and it awards more scholarships to the blind than does any other group or organization. Recipients of Federation scholarships do not have to be members of the NFB.
Applications for the 2000 NFB Scholarship program must be received by March 31, 2000. Scholarship winners will be notified by June 1. We receive approximately 500 scholarship applications each year, so don't delay! Anyone interested may request as many application forms as needed from:
1. Mrs. Peggy Elliott, Chairman, National Federation of the Blind Scholarship Committee, 805 5th Avenue, Grinnell, IA 50112-1653; telephone: (515) 236-3366.
2. National Federation of the Blind Scholarship Committee, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314.
3. All NFB state officers.
4. Financial Aid Offices of educational institutions.
COOKING WITH SUZI
by Suzi Castle
It's time to start the New Year with a resolution to treat yourself better. Choose to eat healthier foods; make time for regular exercise. By setting realistic goals and making small, achievable changes in your lifestyle and diet, you can lose weight and improve your health. Start by eating less fat, sugar and salt. Include more fresh fruits and vegetables in your meals and snacks. Choose cooking methods, such as baking, steaming, barbecuing, roasting, stewing and broiling, that help remove fat. Select only the leanest fish, poultry and meat available. Substitute fat-free or low-fat milk, cheese, yogurt. sour cream and ice milk for regular dairy products. New, improved versions come out every day and are amazingly rich in taste.
Eating healthy doesn't mean that you have to sacrifice good flavor. Become a connoisseur of spices and herbs--they turn low-cal meals into fine cuisine. Use fresh lemon or lime juice, fat-free broth, herbs, spices and small amounts of wine, instead of relying on salt, sugar and fat for flavor. You can enjoy delicious and easy to prepare foods like Tandoori Chicken, and feel good about that New Year's resolution to improve your health.
Tandoori Chicken
Ingredients
3 pounds boneless, skinless chicken breasts
1 cup plain nonfat yogurt
1 teaspoon each: Morton Lite Salt mixture, pepper, paprika, dried ginger and curry powder
2 tablespoons lemon juice
2 teaspoon red food coloring, optional
3 cloves garlic, minced
Instructions
Mix all ingredients. Marinate chicken in refrigerator for eight hours or overnight. Remove chicken from marinade and place on aluminum foil-lined cookie sheet sprayed with nonstick spray. Bake in a preheated 425 degree oven for 35 minutes, or barbecue 5" from hot coals for 10 to 15 minutes, turning once. Serve with rice pilaf. Serves 9.
Per serving: 156 cal. (9% from fat); 20.6g protein; 1.62g fat (0.43g sat.); 1.78g carbohydrate; 302mg sodium; 76mg cholesterol; 0g fiber. Exchanges: 3 lean meat, 2 fat.
"Suzi Castle's Deliciously Healthy Favorite Foods Cookbook" is available now in most bookstores or by sending $18.90 ($14.95 + $3.95 S&H) to: Health Cookbooks, Dept. M, 3520 McCourry Street, Bakersfield, CA 93304.
WHAT CAN A HEALTH EDUCATOR DO FOR YOU?
by Alice Sariyildiz
Pick up any literature on self-management of diabetes and you are likely to find a list of professionals who are a part of your health care team. Your physician, endocrinologist, nurse, and dietitian are all mentioned. Sometimes a social worker will be included. However, two notable omissions are of clergy and health educators, and both of these professionals can be vital to your quality of life.
What is the background of a health educator?
Ideally, health educators have an advanced degree at the time they enter the profession. Those candidates seeking certification will have prepared at accredited universities, doing undergraduate and graduate work in health education, often with an emphasis in public health. After successfully completing written examination and review, health educators are licensed for 5 years, during which time they are required to complete 75 hours of continuing education. The National Commission on Health Education Credentialing (NCHEC) in Allentown, Pennsylvania, regulates entry into the profession, and award of the designation CHES, Certified Health Education Specialist.
Health Educators are assigned a certification number upon successful completion of a standardized test that measures seven designated areas of responsibility. The seven competencies are as follows: The assessing of individual and community needs for health education; the planning of effective health education programs; the implementing of health education programs; evaluating the effectiveness of health education programs; coordinating provision of health education services; acting as a resource person in health education; and communicating health and health education needs, concerns and resources.
The test is administered only to health educators who make successful application to the NCHEC. Their r�sum� must include graduation from an accredited university (graduate school preferred), with a specific minimum number of hours of course work in health education.
How are health educators prepared to teach health promotion and improvement in the quality of life?
While clinicians typically study the human body from a medical/treatment perspective, health educators learn about all of the influences that combine to create the whole person. They do not hold to a theory of one germ-one disease, but rather that heredity, environment and lifestyle all impact on the effects of one or several invaders. They come from the perspective that health problems are best prevented, rather than fixed after-the-fact.
Health education is a multi-disciplinary study. From anthropology, they study cultural diversity and environmental influences on health behaviors. From nursing, they consider the physical and emotional aspects of care. From ethics, they study how interventions must not be imposed upon people but rather desired by them. From social work, they learn about behavior theory and individual assessment. From medicine they analyze scientific research and translate it into practice. From business, they incorporate (pun intended!) organizational principles and outcomes orientation. They look for the biggest bang for the buck--the most efficient use of a wide range of resources. They don't have all the answers, but many answers can be found directly from the people they serve.
What can a health educator do for you?
I have been a health educator for two years now. I work for the Florida Department of Health, where we are proud to have a Health Education Division that includes nine team members.
In our local health department, we serve a diverse county of farm workers and retirees, of low-income families and other citizens and visitors. We work in partnership with hospitals, schools, The Lighthouse, and various community agencies in our efforts to protect the public's health. One of our most successful programs is a series of diabetes management classes provided under the American Diabetes Association guidelines. These classes are free, thanks to a block grant from the Federal government through the Centers for Disease Control.
As the Health Educator, I promote, organize, and teach a portion of the classes, while the Public Health Nutritionist and a Registered Pharmacist teach other specialized units of the curriculum. We served perhaps 100 people last year. Besides an average increase in knowledge of 30 points from pre- to post-test, some of our students achieved weight loss, tobacco cessation, and lower HbA1C results.
But the true test of our success is in the improved quality of life that came about from our intervention, voiced in comments such as these made on the class evaluations: "I learned more here than at my MD," "Just wish this wasn't the last class... Please start a support group so we can continue to meet with you." (And we did).
As health educators we don't just supply information. We study the needs of specific populations and target our health messages using specific behavior theories developed for health education. We create a supportive and caring environment where our students learn the skills they need to manage their health, and the confidence to do it. They learn to use all the members of their health team to their fullest advantage, including their health educators, to help prevent blindness and other complications of diabetes before they begin.
At present, because of time and economic constraints, physicians are not always able to provide education to their patients. However, most do recommend their patients with diabetes get additional education at least once a year. If you are fortunate enough to have your physician recommend that you go, please take his or her advice and learn all you can about preventing complications from diabetes and other chronic conditions that you may have. If you think you receive enough education at your doctor's office, then ask yourself these questions: Does my physician have sufficient knowledge and skills in the seven competencies? Does a nurse or someone else in the physician's office perform education according to these standards? Or, should I be looking elsewhere for these services?
If you'd like to learn more about health educators, contact the Society for Public Health Educators (SOPHE) at http://www.sophe.org or call (202) 408-9804, in Washington, D.C. You can also contact your local health department or a school of public health in your area. Here's wishing you success in a lifetime of learning and personal empowerment!
WHAT YOU ALWAYS WANTED TO KNOW BUT DIDN'T KNOW WHERE TO ASK
(Resource Column)
Artwork: Hand pulling a book from a shelf of books
Inclusion of materials in this publication is for information only and does not imply endorsement by the Diabetes Action Network of the NFB.
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 "The Diabetic 4 Ingredient Cookbook." There are over 200 recipes, in all food categories, with complete nutritional and exchange information, each one using four ingredients. The book costs $9.95 (+$2.95 shipping), from: Coffee and Cale, PO Box 2121, Kerrville, TX 78029; telephone: 1-800-757-0838.
LARGE PRINT BOOK CLUB
There are a lot of book clubs out there, catering to all manner of literary interests, but until now none has offered current bestsellers to visually impaired people who need their books in large print. You could get a book Brailled, or read on tape, eventually, but major publishers ignored readers with special visual needs. No longer. Doubleday Large Print works like other book clubs--but the books are in large print. There is no premium price, either--after your initial five books for $1, you pay normal publisher's price for a hardback, but your choices come in large print. Contact: Doubleday Large Print, 6550 East 30th Street, PO Box 6352, Indianapolis, IN 46206-6352; website: http://www.joinDLP.com
DIABETES SUPPLIES
Heritage Diabetic Supply is a personalized source for your diabetes needs (insulin included), offering reasonable prices and one-on-one service. Heritage handles Medicare and private insurance paperwork (no HMOs), and offers a free Glucometer Elite glucose monitor just for signing up! Contact: Heritage Diabetic Supply, PO Box 1270, Marion, NC 28752; telephone: 1-800-267-6509.
TALKING COMPUTERS
Henter–Joyce, Inc., maker of the "JAWS" series of computer screen readers, offers screen-to-speech software such as JAWS For WINDOWS (JFW), the new MAGic 6.1 screen magnifier, and tutorials on cassette for programs like Internet Explorer and Microsoft Word 8. They also offer Windows 95, 98, and NT compatibility, and as of August 31, 1999, there have been significant price cuts. Find out more at their website: http://www.hj.com, or contact them for information: Henter–Joyce, Inc., 11800 31st Court North, St. Petersburg, FL 33716; telephone: 1-800-336-5658; fax: (813) 803-8001; e-mail: [email protected]
DIABETIC SPECIALTY PRODUCTS
If you have diabetes, you may need alternatives to some commonly used items, like cough medicine (most are full of sugar!), or a good moisturizing skin cream, for the dry skin so many of us have, especially on our feet. Health Care Products offers all of the above.
DiabetiDerm skin moisturizer, available in cream and lotion, uses many natural ingredients, and is made without a petroleum base.
Diabetic Tussin is a line of cough syrups, formulated for diabetics without sugar, sodium, alcohol, fructose, sorbitol, codeine, or dye.
These items are available in most major drug and discount stores. For information, contact: Health Care Products, telephone: 1-800-899-3116; or at their website: http://www.diabeticproducts.com
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 at no further cost. For information, contact: American Diabetic Supply, Inc., 400 S. Atlantic Ave., Suite 108, Ormond Beach, FL 32176; telephone: 1-800-453-9033.
INSTA–GLUCOSE
If you have type 1 diabetes, you know low blood glucose can be a sneaky enemy. Diabetes medications are powerful but imprecise, and, if you misdose, if you miss a meal, if you are ill, or if you have unexpected, unscheduled exercise, you can find yourself going down. You need sugar, fast! You need to be carrying it with you, before trouble hits.
Many people carry sugar candy, or diabetic glucose tablets, but one practical alternative is Insta–Glucose, by ICN Pharmaceuticals. Insta–Glucose is stronger (one tube, one treatment, equals 24 grams of glucose), and it works faster than glucose tablets. It is easy to use, and very easy to carry. Be prepared! It is available at many pharmacies and discount chains. For information, contact: ICN Pharmaceuticals, ICN Plaza, 3300 Hyland Ave., Costa Mesa, CA 92626; telephone: 1-800-711-9486; website: http://www.instaglucose.com
NEEDLE-FREE INSULIN INJECTION
There is a way to inject insulin without a needle! The Vitajet 3 administers a fine jet of insulin through the skin without need for a needle. It works, and users report less discomfort. Try it yourself; 30-day money back guarantee. Contact: Bioject, Inc., 7620 SW Bridgeport Road, Portland, OR 97202; telephone: 1-800-848-2538; website: http://www.vitajet.com
DIABETES SUPPLIES
Preferred RX offers three ways to help you save on diabetes supplies and prescription drugs:
1. Insurance billing. They file the claim, handle the paperwork, and pay for delivery. No advance payment needed.
2. Medicare billing. Medicare pays for approved diabetic supplies (and now that list covers type 2 diabetics!). Preferred RX will handle the details, and pay for delivery.
3. Discount Prescription Club. No insurance? No prescription drug coverage? Preferred RX offers discounts at over 36,000 pharmacies nationwide.
Contact: Preferred RX, 34208 Aurora Road, Suite 132, Solon, OH 44139; telephone: 1-800-843-7038; website: http://www.preferredrx.com
DIABETIC FOODS
Until now, a proper diabetic diet was a "do it yourself" operation. You bought a good cookbook, and went to work. While there's no substitute for learning a good meal plan, there now is an alternative to preparing it. MenuDirect Corporation now offers Custom Cuisine, fully prepared foods, from snacks to entrees, approved by dietitians, with the nutritional balance you need--delivered frozen to your door. Take a break from "do it yourself!" Contact: Menu Direct Corporation, 865 Centennial Avenue, Piscataway, NJ 08854; telephone: 1-888-636-8123; website: http://www.c-cuisine.com
NEW TALKING BLOOD GLUCOSE MONITOR
Based on the proven Accu-Chek Advantage meter, the Roche Diagnostics Accu-Chek Voicemate provides the following: Clear, high-quality speech synthesis, talking the user through preparations, test procedures, and results, without the need for sighted assistance; an "insulin vial identifier" which reads Eli Lilly insulin vials and speaks their type, as a safety aid in tactile insulin mixing; a new, improved, "touchable" test strip--the Accu-Chek Comfort Curve (no more "hanging drop of blood" needed!); no meter cleaning required; and a tactile "code-key" system for programming test strip codes. The Voicemate is the most "blind-friendly" talking glucose monitor available today, and the only one whose regular operations require no sighted assistance at all.
The Voicemate comes with an adjustable over-the-shoulder carrying case, with meter, voice box, battery, adapter cord, 10 Comfort Curve strips, earphone, insulin check-vial, manual and quick-reference guide (in print), and instructions on audiocassette. The new meter (catalog # 2030802) can now be ordered through any pharmacy (suggested retail price $495-525). To do so, have your pharmacist contact Roche Diagnostics, 9115 Hague Road, Indianapolis, IN 46250; telephone: 1-800-428-5074. For direct purchase, and a price below $500, contact any of the following retailers: BeyondSight, Inc. Littleton, CO: 303-795-6455 ($498); Independent Living Aids, Inc. Plainview, NY ($495): 1-800-537-2118; or the National Federation of the Blind Materials Center Baltimore, MD ($475): (410) 659-9314.
SAVE YOUR SKIN
Lantiseptic is a line of skin care products of interest to diabetics. The line includes a cream and a skin protectant, both appropriate for the dry skin diabetics can face. The cream is especially appropriate for dry feet, and has been clinically tested as appropriate for diabetic foot care.
Both products come in tube or jar, and FREE SAMPLES ARE AVAILABLE. For information, or to obtain a free sample, contact: Summit Industries, Inc., PO Box 7329, Marietta, GA 30065; telephone: 1-800-241-6996. For a free sample, telephone: 1-800-347-2456.
READING MACHINE
There are many ways to cope with the problems loss of vision brings to reading. One is to use an optical reading machine like the Kurzweil 1000. With such a machine, you scan a printed page into computer memory, from where it is then read by a synthesized voice. Large print text is not necessary; you can read most any text.
Reading machines vary in accuracy, size of vocabulary, and quality of synthesized voice. Kurzweil has been a leading name in sound synthesis for over 20 years, and the L& H Kurzweil 1000, their newest product, is a superb instrument. To find out more about this reading machine, contact: Lernout and Hauspie Speech Products USA, Inc., Kurzweil Educational Systems Group, 52 Third Avenue, Burlington, MA 01803; telephone: 1-800-894-5374; e-mail: [email protected]; website: http://www.lhsl.com/kurzweil1000
DIABETES SUPPLIES AT WAL-MART
Most people don't have to look too hard to find a Wal-Mart. You may even get some of your diabetes supplies there. But it's time for another look! Wal-Mart now has a new line of house-brand diabetes care products, what they are calling the ReliOn family. This new ReliOn label is now on syringes, lancets, glucose tablets, skin cream, and alcohol swabs. Check them out at your nearest Wal-Mart.
DIABETES SUPPLIES
When you need it, you need it. When it's time to test, when it's time for medication, you need it already there. Diabetic Care Center will ship your diabetes supplies to your door, and they do the paperwork. No forms, no trips to the pharmacy. Medicare and most private insurance accepted. Call the Diabetic Care Center, telephone: 1-800-633-7167; website: http://www.diabeticare.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, it is available in sugar-free caplets. Contact: Abkit, Inc. New York, NY 10128; telephone: 1-800-226-6227; website: http://www.alphabetic.com
Dex-4 Glucose Tablets
From the Editor: Dex-4 glucose tablets, in lemon, raspberry, orange and grape flavors, are tasty, effective, and the tubes of 10 are easy to carry in a pocket or purse. They are also easy to open when you need them. I use Dex–4 myself. You can find them in pharmacies and supermarkets nationwide.
Each fruit-flavored, easy to chew glucose tablet contains four grams of fast-acting carbohydrate, with no fat, sodium, caffeine, or cholesterol, and only 17 calories. These value-priced tablets are available in tubes of 10 tablets or economy size bottles of 50.
For further information about Dex–4 or their many other diabetes care products, including Formulated for Fingers skin cream with tea tree oil, contact your pharmacist or Can-Am Care Corporation, Cimetra Industrial Park, Box 98, Chazy, NY 12921-0098; telephone: 1-800-461-7448.
FOOD FOR THOUGHT
Artwork: Dancing fruits and vegetables
We invite blurbs and tidbit articles for inclusion in this column. Materials received may be edited and used as space permits. Products and services included in this column are for information only and do not imply endorsement by the Diabetes Action Network of the NFB.
NEW DRUG CLINICAL TRIALS
People with hypertension (high blood pressure) or diabetic kidney disease are often prescribed Angiotensin Converting Enzyme ("ACE") Inhibitors, to help correct the condition. The ACE Inhibitors work, but doctors and drug companies are always looking for better ways to do the job. This may be one of them.
Novartis Pharmaceuticals announces multi-center trials of Lotrel, a combination therapy, for management of hypertension. Each tablet contains both the ACE Inhibitor Lotensin and the Calcium Channel Blocker Norvasc. The intention is to test whether a combination of these two proven medications will reduce high blood pressure more quickly than current monotherapies.
One study will test Lotrel's effectiveness against hypertension in the general population, and the other is specifically targeted toward black Americans with diabetes. If the studies determine that the new combination is both safe and consistently effective, approval from the U.S. Food and Drug Administration should be forthcoming.
COMPETITOR TO THE GLUCOWATCH
SpectRX Inc., who have been developing their own noninvasive blood glucose monitor, just announced that Abbott Labs is making another investment in their product. The SpecRX sampling technology is described as "capable of tracking rapidly rising levels of blood glucose--but the technique did not yet address the time delay for rapidly falling blood glucose levels, however."
As reported, the device looks like a wearable heart rate monitor, but it attaches around the abdomen. The sensor sends a signal to a beeper-like device. The SpectRX device is said to use ISF (Interstitial Fluid) micropore technology to give "...up to the minute glucose readings on a continuous basis."
Now that Cygnus, with its GlucoWatch, has broken the regulatory ground with the Food and Drug Administration, look for SpectRX and others to follow. We'll keep you posted!
1999 RAFFLE WINNERS
At the keynote banquet for the 1999 annual convention of the National Federation of the Blind, in Atlanta, Georgia, the winning ticket was drawn in the Diabetes Action Network raffle. Winning ticket holder was Kristy Dennis, of Chicago, Illinois.
Lots of people helped sell tickets, and the following folks each sold 50 or more. In descending order of tickets sold: John Stroot, of Clinton, IN; Jerry and Cathy Antone, from French Lick, IN; Eugene Payne, from Detroit, MI; Billie Weaver, of Springfield, MO; Gisela Distel, of Albany, NY; Ken Staley, from Chicago, IL; Karen Mayry, from Rapid City, SD; Walt Weber, from Mobridge, SD; Kerry Smith, from St. Louis, MO; Ed Bryant, of Columbia, MO; Barbara Hinkle, from Rapid City, SD; Sally York, from Castro Valley, CA; Kyle McHugh of Boston, MA; Betty Walker, of Jefferson City, MO; and Sandie Addy, from Prescott Valley, AZ. Truly a winning performance--See you next time!
HEAR YE, HEAR YE, A RAFFLE
The Diabetes Action Network of the National Federation of the Blind reaches out and provides support and information to thousands of people. Because it costs to operate this valuable network and to produce the VOICE OF THE DIABETIC, we must generate funds to help cover these expenses. Our Diabetes Action Network has elected to hold a raffle, which will be coordinated by our division treasurer, Bruce Peters.
THE GRAND PRIZE WILL BE $500! The winning ticket will be drawn, and the winner's name announced, on July 7, 2000, at the banquet held during the annual convention of the National Federation of the Blind.
Raffle tickets cost $1 each, or a book of six may be purchased for $5. Tickets may be purchased from state representatives of our Diabetes Action Network or by contacting the VOICE Editorial Office, 811 Cherry Street, Suite 309, Columbia, MO 65201; telephone: (573) 875-8911. Anyone interested in selling tickets should also contact the VOICE Editorial Office. Tickets are available now! Names of persons who sell 50 tickets or more will be announced in the VOICE.
Please make checks payable to the National Federation of the Blind. Money and sold raffle ticket stubs must be received at the VOICE office no later than June 10, 2000, or they can be personally delivered to Raffle Chairman Bruce Peters, at this year's NFB convention in Atlanta, Georgia. This raffle is open to anyone age 18 or older, and the holder of the lucky raffle ticket need not be present to win. Each ticket sold is a donation, helping keep our Diabetes Action Network moving forward.
NEW FLU DRUG
Every winter, millions are advised to "get their flu shot." Centers for Disease Control statistics suggest each year more Americans die from the flu than from crime, so the advice is worth noting. But some don't heed it, out of fear of needles, so researchers have been working to develop oral flu vaccines. Baylor College of Medicine, in Houston, Texas, recently participated in clinical tests of one, the drug oseltamivir.
They found the drug, which differs from the inhaled flu drug Relenza (zanamvir) in that it protects against both A and B strains, "74 percent effective in preventing symptomatic influenza in test volunteers..." and a good choice for people in high-risk groups (over 65, diabetes, kidney disease, AIDS) or people allergic to flu vaccine. "The rest of us," they warn, "should get that flu shot."
Oseltamvir has been approved by the Food and Drug Administration. Talk to your doctor.
FALSE CLAIMS: REAL PROBLEMS
Nobody likes to be sick, and sometimes people lose patience with the slow pace of medicine. There have always been "snake oil salesmen," selling us the answers we want to hear--and raking in a lot of our money. The Internet has allowed a lot more of them to crawl out of the woodwork, proclaiming their "miracle cures," "ancient ingredients," "scientific breakthroughs," "secret formulas," and "exclusive products."
The U.S. Federal Trade Commission is concerned, and has free literature to advise you how to tell the difference between the real and the unreal in medical claims. They offer the free pamphlet: "Fraudulent Health Claims: Don't be Fooled," and information about how to recognize common internet medical frauds. Copies of these and other publications are available free from: Federal Trade Commission, Consumer Response Center, 600 Pennsylvania Avenue, NW, Washington, DC, 20580; telephone: 1-877-382-4357; website: http://www.ftc.gov, and click on "consumer protection."
TEST YOUR FEET
If you have diabetes, you may develop peripheral neuropathy, a loss of nerve sensation, that most often begins in the feet. Doctors stress the need to find out early--so you can take action. They use a simple testing tool, called a monofilament, to quickly and painlessly tell if you have any numb areas in your feet or lower legs. You should have that test.
You can test your own feet. Because undetected neuropathy can sometimes lead to things like foot amputation, the government has sponsored the Lower Extremity Amputation Prevention, or LEAP, program. They will provide you with a free foot-testing kit and information on how to improve your foot care. Contact: LEAP Program, Bureau of Primary Health Care, Division of Programs for Special Populations, 4350 East West Highway, 9th Floor, Bethesda, MD 20814; telephone: 1-800-400-2742; website: http://www.bphc.hrsa.gov/leap
DIABETES VACCINE?
We all dream of a simple vaccine that might make diabetes as rare as the measles. It might well happen. We know that type 1 diabetes is caused by an autoimmune attack on the Beta cells of the pancreas--and now current research, detailed in the September 1999 issue of the journal "Nature Medicine," details the discovery of an antigen, a protein that stimulates the immune response that may cause the condition. Researchers know a lot about T-cells (the immune system's "attack force,") and think they just might be able, with a vaccine that targets the antigen under study, to divert their attack on the Beta cells, and prevent diabetes. They figure such a vaccine may be possible "within a decade."
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 267,115 Voice readers could benefit from your story.
For information and article submission guidelines, contact: VOICE OF THE DIABETIC, 811 Cherry Street, Suite 309, Columbia, MO 65201; telephone: (573) 875-8911.
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, 811 Cherry Street, Suite 309, Columbia, MO 65201; telephone: (573) 875-8911, fax: (573) 875-8902. NOTE: Please provide a phone number so we can reach you.
SUBSCRIPTION/DONATION FORM
The VOICE OF THE DIABETIC is a quarterly magazine published by the Diabetes Action Network of the National Federation of the Blind (NFB) for anyone interested in diabetes, especially diabetics who are blind or are losing vision. An outreach publication, it emphasizes good diabetes control, diet, and independence.
Donations are gladly accepted and appreciated. Contributions are not only tax deductible but are needed to keep the VOICE and the Diabetes Action Network moving forward to help people with all aspects of diabetes.
Members of the NFB Diabetes Action Network enjoy priority services and unique benefits such as a continuous free subscription to the VOICE, automatic access to committees covering all aspects of diabetes, free counseling concerning all facets of blindness and diabetes, as well as access to diabetics who have experienced complications.
The VOICE is free to any interested person upon request. Each subscription costs the Diabetes Action Network approximately $20 per year. To help defray publication expenses, members are invited, and nonmembers are encouraged, to cover the subscription cost.
To begin receiving the VOICE, please check one:
[ ] I would like to become a member of the NFB Diabetes Action Network and receive the VOICE OF THE DIABETIC. (Members are entitled to special benefits.)
[ ] I would like to receive the VOICE OF THE DIABETIC as a nonmember. (Nonmembers are encouraged to pay the institutional rate of $20/one year; $35/two years; $50/three years.)
Send the VOICE in (check one):
[ ] print [ ] cassette tape for the blind [ ] both
and physically handicapped
(recorded at slower-than-
standard speed of 15/16 IPS)
Optionally check this box:
[ ] I would like to make (or add) a tax-deductible
contribution of $__________ to the Diabetes Action
Network of the National Federation of the Blind.
PLEASE PRINT CLEARLY
Name:_____________________________________________________
Address:__________________________________________________
__________________________________________________
City:_______________________ State:______ Zip:__________
Telephone: ( )________________________
Send this form or a facsimile to:
Voice of the Diabetic
811 Cherry Street, Suite 309
Columbia, MO 65201
Telephone: (573) 875-8911
Fax: (573) 875-8902
Please make all checks payable to:
NATIONAL FEDERATION OF THE BLIND
END of VOICE OF THE DIABETIC, Volume 15, Number 1, Winter Edition 2000