VOICE OF THE DIABETIC

A Support and Information Network

The Diabetics Division of the

National Federation of the Blind

Volume 10, Number 1, Winter Edition 1995

Pancreas transplantation: Should blind diabetics be excluded?

 

by Francisco S. Escobar, III, M.D.

                Dr. Escobar, Senior Staff Surgeon Division of Transplantation Surgery at the Henry Ford Hospital, delivered this keynote address at the annual meeting of the Diabetics Division of the National Federation of the Blind held in Detroit, Michigan on July 3, 1994.

                    (This article appeared in _Voice of the Diabetic_, Volume 10, No. 1, Winter 1995, published by the Diabetics  Division of the National Federation of the Blind)Thank you, Mr. Bryant and the Diabetics Division of the National Federation of the Blind, for inviting me to speak at your Annual Convention.

     Standing at this podium today is certainly a privilege for me because one of my mentors, Dr. John Najarian, spoke to you a few years ago about pancreas transplantation.  Before 1980, transplant surgeons were reluctant to perform kidney transplants in diabetics because of the consensus opinion, at that time, that patient and graft survival was particularly poor in diabetics.  Through the efforts of Dr. Najarian and others, kidney transplantation is now the preferred treatment for all patients with end-stage renal disease (ESRD).  In 1994 diabetic recipients of kidney transplants have excellent patient and graft survival rates, similar to non-diabetic patients.

    At Henry Ford Hospital in Detroit, Dr. Mozes and I, along with many other health care professionals, are continuing in this tradition.  Since January 1968, more than 1000 kidney, 150 heart, 40 liver and 30 pancreas transplants have been performed.  For kidney transplants performed prior to 1992, we have one-year actuarial patient survival and kidney function rates of 93% and 82%, respectively.  Although our series of pancreas transplants since 1992 is relatively small, we have one-year actuarial patient survival and pancreas function rates of 85% and 80%, respectively.  Our priority in the Henry Ford Heath System is to provide cost-effective health care of the highest quality, strengthened by excellence in education and research.

     Almost a year ago, I saw a patient to discuss pancreas transplantation.  At that time, Sharon was an attractive, vibrant 27- year-old female who had diabetes for 24 years.  By 1988, she was legally blind and had renal failure.  In 1989 she had a cadaveric kidney transplant which was eventually lost to chronic rejection.  In 1991 she had a second kidney transplant receiving the organ from her father.  In 1993 she was physically active and lived independently.

She was also taking a course in medical transcription at the local community college.  She strongly desired to be insulin independent and was interested in pancreas transplantation.  Although she had no absolute medical contraindications for pancreas transplantation, her insurance company denied her request for coverage because she was blind.

     As I was preparing for this meeting, I read an article in your paper, Voice of the Diabetic, by Mr. Homer Page, who may be here today.  Mr. Page states,

          I believe...that blind persons are capable of living normal fulfilling lives.  In many ways society, through its ignorance and occasionally through its hostility, tries to prevent us from living the lives that we know are possible for us.  We know that   if we work together to create opportunities and to support one another, our chances to fulfill our lives will be greatly increased... Whether we are fighting discrimination, working with legislators, or taking on the media, we know that our work is of high quality.

I was encouraged by this creed.  Perhaps you, the Diabetics Division, would consider the question of whether blind patients should be excluded from pancreas transplantation.  Would you take up the charge, with the assistance of health care professionals, to help patients like Sharon?

     Before you answer, I would like to review five pertinent issues.

     (1) Kidney transplantation not only improves the quality of life for ESRD patients but is also cost effective relative to dialysis for the government and insurance carriers.

        (2) Like heart or liver transplantation, kidney transplantation is a life-saving procedure for diabetic patients on dialysis.

       (3) Like other medical therapies, e.g., total hip replacements, pancreas transplantation significantly improves the quality of life for patients.

     (4) Since pancreas transplantation is a complex procedure with significant morbidity, is this "surgical" treatment of diabetes worse than the secondary complications of the disease?

     (5) And finally, does pancreas transplantation halt, reduce or prevent the secondary complications of diabetes?

     As stated in the U.S. Renal Data System 1991 Annual Report, ESRD is a devastating medical, social and economic problem for patients and their families.  As many of you know, the initial diagnosis of the disease and the recognition of the need for continual therapy is likely to make the patient feel vulnerable, dependent and near death.

After dialysis is initiated, other problems become more prominent. Social adjustments to substantially elevated mortality risks, dependency, reduced quality of life, low likelihood of returning to work, and dramatic costs are all part of the problem.

    Although dialysis has dramatically improved the life expectancy of patients, ESRD is still a serious problem. According to the U.S. Renal Data System, overall mortality in dialysis patients is high relative to the general population. For dialysis patients, at age 40 years, life expectancy is estimated to be 8.8 years; while in the Štotal U.S. population, at age 40, life expectancy is over 37 years.   For dialysis patients, at age 59 years, life expectancy is estimated to be 4.2 years; while in the total U.S. population, life expectancy is over 20 years.  The mortality rates for colon cancer patients are similar to dialysis patients, while prostate cancer patients have a somewhat better survival rate than do dialysis patients.

     Many investigators have therefore focused on careful quantitative comparisons of life on dialysis or with transplantation.  One study by Dr. Roberta Simmons, conducted at the University of Minnesota in the early 1980s, showed that the quality of life of renal transplant recipients surpassed that of Continuous Ambulatory Peritoneal Dialysis (CAPD) or hemodialysis patients.  Among males, only 19% of hemodialysis patients and 35% of CAPD patients were at work or school full-time compared with 64% of transplant patients.  In addition, transplant patients had significantly higher scores regarding their physical, emotional and social well-being.  As Dr. Simmons stated,

"Quality of life remains an ethical issue in transplantation because of the high cost of this technology and the inevitable decisions which will need to be made concerning resource allocation."

     In a recent _Newsweek_ poll, 74% agreed that health care reform will lead to rationing, in which some forms of medical care will not be covered by basic insurance because they are too costly, too much of a long shot or not essential.  Organ transplantation is often criticized as too costly, given other health care needs such as pre-natal care and childhood immunizations.  Dr. Roger Evans of the Mayo Clinic has recently reviewed this issue in an article entitled, "Organ Transplantation and the Inevitable Debate as to What Constitutes a Basic Health Care Benefit."  In 1992 an estimated $3.2 billion or 0.4% of the total U.S. health care expenditures was spent on organ transplant recipients.  However, transplant expenditures are rather modest when compared with treating AIDS patients, i.e., over 10 billion dollars.  While the five-year patient survival for AIDS is 0%, the estimated annual expenditure per patient at five years is $38,300.   As Dr. Evans states, "Devoid of health care benefits, dead people are inexpensive to maintain."  The five-year patient survival for dialysis and kidney transplantation is 34% and 77%, respectively and the annual per patient costs of dialysis and transplantation (without the initial procedure costs) are $33,165 and $6,900.  If one includes the initial procedure costs of transplantation (which are estimated to be $82,908 for the first year), the aggregate costs of renal transplantation become less than dialysis during the third post-transplant year.

Relative to AIDS, dialysis, and cancer, the costs and benefits of kidney transplantation are more favorable.

     Now that I have established that kidney transplantation improves the quality of life for ESRD patients and is cost effective relative to dialysis, I would like to address my second statement:

          Like heart or liver transplantation, kidney transplantation is a life-saving procedure for diabetic patients on dialysis.

     Generally, most health care professionals, even within the transplant community, place heart and liver transplantation on a higher plane than kidney or pancreas transplantation because the former are "life-saving" while the latter are "life-improving" organs.

Patients waiting for heart and liver transplants, unfortunately, do not have alternative "life-sustaining," non-surgical therapies such as dialysis for renal failure and exogenous insulin for diabetes mellitus.  As you would expect, the United Network for Organ Sharing reported in 1993 that 12.2% of patients died waiting for a heart transplant, 7.9% died waiting for a liver, 3.8% died waiting for a kidney, and 1.0% died waiting for a pancreas.  Patients, who are accepted to wait for kidney and pancreas transplants, are highly selected; i.e., patients with serious comorbid conditions and high surgical risks are not accepted on the transplant waiting lists.

     Dr. Friedrich Port and others recently studied the survival probabilities for dialysis patients versus cadaveric renal transplant recipients in Michigan.  The long-term risk of dying was slightly reduced (by approximately 10%) when patients with glomerulonephritis were transplanted.  On the other hand, the long-term risk was greatly reduced (by approximately 85%) when patients with diabetes received a kidney transplant.  For diabetic patients on dialysis, kidney transplantation can be a life-saving procedure.

     Although we all agree that diabetic patients like Sharon should receive a kidney transplant, whether she should receive a pancreas transplant is debated by most insurance carriers.  As Anne Nettles from the University of Minnesota has written,

          In one very unusual situation, a patient's husband was forced to resign from his job to care for his wife, who suffered bouts of unconsciousness from hypoglycemia lethargy from hyperglycemia.

     [A] major reason for pancreas transplantation is the patient's often irrepressible desire for a cure.  This desire [was]...reflected in this...quote [from a patient]:  "A few months without diabetes was worth the surgery, the cost, the rejection, and [even] the loss of the pancreas transplant."

     Clinical experiences from many centers now suggest that pancreas transplantation can substantially improve the quality of life for diabetics.  Zehrer and Gross have reported that with a functioning graft, 68% of the patients expressed overall satisfaction with their life, 78% could care for themselves, and 89% felt healthier since their transplant.  Patients specifically cited the benefits of pancreas transplantation as freedom from insulin injections, freedom from insulin reactions, freedom from a specialized diet and more hope for the future.

                If this is true of sighted patients, would pancreas transplantation be even more beneficial for blind diabetics?  As this audience knows well, because of visual and physical impairments, self-care activities are particularly difficult for blind diabetics unless techniques and equipment can be individually modified.  Even then, adequate glucose control is difficult.  Furthermore, the visually impaired have significant levels of depression, poor self-esteem and decreased psychological well-being.  [Editor's Note:  The National Federation of the Blind has thousands of members and most have no problem with self-care activities.  With proper training and opportunity, the blind can do what they want and be involved in the mainstream.  The old myths about the blind being depressed and having more psychological problems than their sighted peers still exist.

Blindness is not synonymous with inability.]

     Although there are no specific studies regarding these issues for blind recipients of pancreas transplants, the blind diabetic would probably benefit from a pancreas transplant _the most, not the least_, compared with sighted diabetics.

                If this is the case, then why would an insurance carrier deny Sharon's request for a pancreas transplant?  In this era, health care reform, managed care and managed competition have forced health care professionals to adopt more conservative and cost-efficient practices. Unlike renal transplantation, we do not have sufficient data to compare the costs of pancreas transplantation and the consequent savings from normoglycemia with the costs of routine diabetic care and the subsequent complications of hyperglycemia.  However, the debate about pancreas transplantation has focused mainly on the control of diabetic complications rather than on quality of life.  There are many other medical therapies and procedures, such as total hip replacements, which are done mainly for quality of life.

     Total hip replacement (THR) is a good example of an expensive, highly technical, elective procedure with increasing utilization.  As reported by Friedman and Elixhauser, THR is one of the most costly procedures, contributing between $1 billion and $2 billion of Medicare expenses in 1987. Unlike pancreas transplantation, hip replacements are routinely covered, almost without question, by insurance carriers.  Hip replacements have been typically performed on patients greater than 55 years old to reduce pain and functional limitation associated with arthritis.  Wilkund and others have shown that after hip replacements, patients had significant improvement regarding pain, energy, sleep, and social isolation.  Like pancreas transplantation, hip replacement clearly improves a patient's quality of life.  Other studies, however, have found only a small improvement in mobility or economic benefits because two-thirds of the patients are greater than 65 years old and are not employed.  Sheppard and others reported that patients greater than 80 years old had a hospital mortality of 4%, a hospital morbidity of 77% and a five-year patient survival rate of 50%.  Do total hip replacements constitute heroic care for the elderly?  Since most of these patients were able to maintain independent living, many believe that hip replacement is cost-effective compared to maintaining a non-independent patient in a nursing home.  Isn't pancreas transplantation similar to hip replacement?  If so, why don't all insurance carriers cover pancreas transplants for the blind?

                In general, the debate focuses on the risks of pancreas transplantation procedure and immunosuppression versus the control of retinopathy and neuropathy.  Since pancreas transplantation is a complex procedure with significant morbidity, is this "surgical" treatment worse than the secondary complications of the disease?

                With advances in organ transplantation and fewer restrictions on patient selection, an ever-increasing number of patients are becoming candidates for transplantation.  From December 1966 to January 1994,

5,540 pancreas transplants were reported to the International Pancreas Transplant Registry.  Of these, a total of 3,662 pancreas transplants were performed in 88 U.S. centers.  In 1993, 765 patients (or 21% of the entire 28-year experience) received pancreas transplants.  As of April 1994, 1,156 patients were waiting for a pancreas transplant.  As reported by the United Network for Organ Sharing, the overall recipient actuarial survival rates at one and three years are now 91% and 84% respectively.  Overall pancreas graft function rates at one and three years are 72% and 62%.  Simultaneous pancreas-kidney transplants from cadaveric donors have the best pancreas function rates of 76% at one year and 68% at three years.  For these transplants, the one-year pancreas function rate continues to improve each year, being 70% in 1987 and 81% in 1992.  A successful pancreas transplant is the only therapy currently available that will produce a sustained, normoglycemic, insulin-independent state.

                As with any surgery, pancreas transplantation does have risks. Normoglycemia has its price.  Alan Cheung and others at the University of Minnesota have shown that acute morbidity of simultaneous pancreas-kidney transplantation is higher than cadaveric kidney transplantation for type I diabetics.  Complications, more common in pancreas recipients, were wound problems, urologic problems, rejection episodes and infections.  Patient survival and kidney function are, however, not affected by the addition of a pancreas in patients less than 45 years old.

                Most patients do not want pancreas transplants primarily to slow the course of renal failure.  They place more importance on metabolic control.  They want freedom from personal, social and dietary restrictions.  As one patient said during a discussion of risk factors, "My doctor says my risk of dying is 50% from cardiac disease...  So what difference is it to me if my pancreas transplant is risky?"

                 For years diabetes experts have emphasized normal blood sugars thinking that this will prevent, postpone or even reverse the long-term complications of diabetes.  As the authors of the Diabetes Control and Complications Trial (DCCT) have stated, "Although the daily management of (diabetes) is burdensome and the specter of metabolic decompensation ever-present, long-term complications... have caused the most morbidity and mortality since the introduction of insulin therapy."  As you know, diabetics are 35 times more likely to be blind, 17 times more likely to have renal failure, five times more likely to have an amputation, and twice as likely to develop heart disease than the general population.  This diabetes trial compared conventional therapy, consisting of one or two daily insulin injections guided by daily self-monitored blood sugars, with an intensive therapy regimen, consisting of three or more daily insulin injections guided by four-times-a-day blood sugar measurements.  While intensive therapy was able to lower mean blood sugar from 231 to 155 mg/dl, the glycosylated hemoglobin, a measure of blood sugar control, still remained elevated 40% above the normal limit.  Of all currently available treatments for diabetes, only pancreas transplantation will restore normal blood sugars and normal glycosylated hemoglobin. Furthermore, the intensive regimen resulted in a three-times greater risk of severe hypoglycemia.

                Did the intensive regimen, the "best" known medical therapy, affect the secondary complications of diabetes?  The intensive therapy slowed, but did not halt, the progression of retinopathy and nephropathy.

                I now come to the last issue I would like to discuss tonight.  How does pancreas transplantation compare with an intensive insulin regimen?  Does pancreas transplantation halt, reduce or prevent the secondary complications of diabetes?  First, several studies are consistent with the hypothesis that the recurrence of diabetic nephropathy is prevented by a successful pancreas transplant.  Second, Secchi and others from Milan studied the effects of kidney transplantation alone and pancreas-kidney transplantation on diabetic neuropathy.  Peripheral nerve function was improved in both groups during the first year, which may reflect nerve recovery from uremia. At two years, however, only the pancreas group continued to improve.

From this and other studies, normoglycemia appears to have a beneficial effect on neuropathy.  Third, correction of uremia by kidney transplant alone, however, has been reported to slow the progression of early diabetic retinopathy in some recipients.  In a study from Munich, visual acuity after simultaneous pancreas-kidney transplantation improved by at least one line (on an eye chart) in 56% of patients, remained stable in 32% and deteriorated in 12%. Advanced retinopathy is probably not altered by pancreas transplantation.

     As one of my mentors, Dr. Sutherland, has written, "Ideally, pancreas transplantation should be applied early in order to favorably influence the course of secondary complications."

     Pancreas transplantation should be performed in patients with secondary complications of diabetes that are, or are progressing to a stage, more serious than risks of surgery or the side effects of immunosuppression.  Patients will benefit.  They will report an improved quality of life with greater personal, social and dietary freedom than while they were on exogenous insulin.  With this in mind, should blind diabetics be excluded from pancreas transplantation?  As Jane Bryant of _Newsweek_ has stated,

           When it comes to their health, Americans with insurance won’t accept limitations lying down...  When doctors decline to operate or insurers refuse to pay, patients are going to court for a second opinion...  The most visible issue is the bone marrow transplant for women with advanced breast cancer (estimated costs of $60,000-150,000).

     According to Robert Griss, Director of the Center on Disability and Health in Washington D.C, "Any decision not to treat is [however] illegal [now] under the 1990 Americans with Disabilities Act if treatment is withheld because of patient's presumed low quality of life."  And that includes blind diabetics.

                So follow your creed which Mr. Page eloquently stated in the _Voice of the Diabetic_.  Fight discrimination, work with legislators, and take on the media to help blind patients like Sharon improve their quality of life with a pancreas transplant.  Thank you. 

[Photo: Francisco S. Escobar III, M.D.] ■

I've got what?

by Bob O'Dea

     I thought it was the flu.  I had never had the flu before and, aside from an occasional cold, I had never been sick before.  Though I had read about this type of lingering, annoying illness, I was not overly concerned with the occasional nausea, sudden weight loss, and general fatigue.  From what I had heard, everyone loses weight and feels weak when he/she has the flu.  I had read somewhere to drink plenty of fluids when ill with the flu.  So I did.  With an extraordinary liquid intake, urinating every hour or so seemed to be a natural, normal response.  Having to pee virtually all of the time was a little inconvenient, especially during movies or on long car trips, but it seemed a healthy way to flush those nasty viral toxins out of my system.

                My flu continued far longer than I thought any flu was supposed to last.  I wondered briefly if I might have a problem.  Unfortunately, my extensive powers of rationalization overcame personal misgivings about my slowly deteriorating condition.  I told myself that I was just driving myself too hard.  With school, work, karate, and countless extracurricular activities, I simply hadn't the time to properly care for my health.  Yet, I continued to lose weight and had begun to feel worse by the minute.  Somehow, I was still able to convince myself that I would be fine in a week or two.  Surely it would take more than a pesky little bug to bring this martial arts instructor down.  After all, it was only the flu, right?

     Wrong.  During a brief but exciting ambulance ride to the hospital, I began to suspect that my trouble might indeed be somewhat more serious than the flu.  My suspicions were confirmed when an emergency room intern asked who my endocrinologist was.

     "My endocrine-WHAT-o-gist?" I asked.

     "Your diabetes specialist," he answered.  It didn't take me too long to conclude that this doctor thought I had diabetes.

     "You must have the wrong room, Doc," I told him.  "I'm the guy who passed out from the flu, or pneumonia, or something."   Making a futile attempt at denial, I was reasonably sure he wasn't in the wrong room.  Our conversation didn't last much longer because I suddenly had the irresistible urge to pass out.  Advanced ketoacidosis certainly has a way of making a person very sleepy.

     After a week of meager portions of inedible food, chronic boredom, and countless unpleasant tests, I was judged fit enough to return to the world.  At 140 pounds, my 6' 1" frame was sixty pounds lighter.  I was a newly diagnosed type I diabetic without a clue about how to begin my new lifestyle.

     A few weeks after my release from the hospital, I learned about an annoying little side effect called "peripheral neuropathy."  During a diabetes education class, I began to experience an odd little tingle in my feet and lower legs.  That's strange, I thought.  Oh, it's probably nothing.  In my hospital bed two days later, I realized I was wrong--again.

                The pain was immediate, excruciating, and sadistically unrelenting.  It no longer mattered that I was unable to walk because I was nearly always strung out on one of a variety of pain killer cocktails which doctors had whipped up to try to ease my suffering. Nothing worked.  My only option, other than measures too drastic to consider, was to endure a torturous existence, try to control my blood sugar and hope normal glucose levels would lessen the devastating effects of this premature complication.  My condition was said to be the most unusual and severe case of neuropathy which had ever been witnessed by my particular group of medical professionals.  Lucky me, I made the record books.

                For a while, I was a test case getting poked, pricked, prodded, and probed by some of the best.  The prescription was always the same: either take more mind-numbing drugs and shut up, or maintain tight control and hope that normal blood sugar levels would make the pain go away.  Against the better judgment of my doctors, I decided not to stay high on drugs for perhaps the rest of my life.  The powerful chemicals in the pain killers offered little relief and had many unpleasant side-effects.  This was definitely not the way I wanted to live.

                For the past year, I have worked very hard to keep this disease in its place.  By staying in the close-to-normal range, I have begun to experience a noticeable reversal in the debilitating effects of the neuropathy.  Last year at this time, my wife had to roll her unemployed husband around in a wheelchair.  This year, I took the day off from a new job and we walked--well, most of the time--in the "Walktoberfest."  I still have a long way to go before I consider myself well, but I will recover.  The black depression which once occupied my every waking thought fades from memory more each day. Self-pity has been replaced with self-defense.  I know that having diabetes is not my fault, but it is my responsibility.  Rather than making us lesser people, as I initially thought, the disease forces us to become exceptional.  We are managing to maintain a normal lifestyle against odds that many would consider insurmountable.    

                                                Diabetes and people

                I've met who have diabetes have inspired me and have taught me an invaluable lesson:  there can be no compromise, no surrender, ever.  Diabetes may have weakened my body, but it has strengthened my will.  I realize now that I am directly responsible for maintaining my health and extending my existence.  It is only through constant vigil that we who have diabetes are able to feel well, be well, and live well.

                All things considered, I would much rather not have diabetes and its related "challenges."  It's a nuisance and it makes me live my life a little differently than I had before.  Aside from a little inconvenience, pain, and the occasional complication, it's really not such a bad way to live.  As a witty, wonderful diabetes educator in the Providence Hospital in Southfield, Michigan taught me, living with diabetes sure beats the alternative.  I plan to live with it for a long, long time.  ■

A positive approach

by Frances Royal

     My name is Frances Royal, and I have been a diabetic for 35 years.  When I was initially diagnosed, diabetes education was very primitive and very limited.  Diabetes education and research have come a long way.  I am gladdened to see so many positive approaches to diabetes management and the hope of living a life with fewer complications, particularly for type I diabetics.

     When my diabetes was diagnosed, life expectancy was not very promising.  The instructions I received were "not to eat sweets" and "take my daily injections."  And even that was a difficult task. Nutritional knowledge was not as sophisticated as it is today, and the variety of foods for diabetics (i.e. sugar free, fat free, high fiber foods) we know now was not available.  Injections were with a glass syringe that had to be sterilized by boiling--a highly unpleasant, time-consuming chore!

     Diabetes management has come a long way, and so have I.  I gave birth to my only child 25 years ago and was fortunate to have avoided complications during pregnancy.  My son Michael is now a third -year medical student and needless to say I am filled with joy and in several ways.  I suffer from hypertension, I have had a kidney transplant, I have serious neuropathy in my feet and my bladder (I have to catheterize myself daily), and I have no vision in my left eye and low vision in my right eye.

     But the best thing that happened to me was receiving my kidney. It has proven to be truly the gift of new life for me.  I love feeling healthy and energetic again. I would encourage anyone who is in need of a transplant and is having doubts, to reach out and talk with someone in your community who has been through what you are going through now.  You are not alone in your anxiety, fears, and doubts.  I spent several hours with a transplant social worker, transplant coordinators, and my doctor, who helped me make the right decision.

     I love to tell the story of the day I received the long-awaited phone call from the transplant coordinator, Donna.  She phoned on Friday, May 10, 1991 to ask me to come in for a blood test because there was a possible donor for me.  I had already undergone a complete workup, including blood typing and tissue matching.  The lab said the testing would not be complete until late that night.  I didn't hear any more that night, and the next morning I was surprised that I had slept so well.  I phoned Donna, but she said she didn't think it was going to be a match, and for me to proceed with my plans for that day. It was the Saturday before Mother's Day.  We were headed out the door when the phone rang--it was Donna!  She said that the person ahead of me on the list couldn't be located; that it wasn't a perfect match and because of my blood type I could wait another year to be called--but that the kidney was mine if I wanted it.  You bet I did!  My sister drove me to the hospital and by 1:10 pm I was on my way to surgery. The operation went well, but it took the kidney two weeks to kick in, though it has been working perfectly since then.  My creatinine is about .9 to 1.0.  I am eternally grateful to my donor's family--that they made the choice to donate at a time when they were so sad and hurting. They gave the ultimate gift of new life to me.

     I am very blessed to have been born into this family.  They, along with my very loving, kind, and gentle husband, have given me enormous amounts of support and strength.  I had a marvelous role model in my younger sister Rosa, who was deaf and blind and had a transplanted kidney for eight years of her life until she died of a brain aneurysm in February 1992, just short of her 40th birthday.  Born deaf, she became blind from diabetes.  She lived life fully and energetically, serving as president of the Texas Deaf-Blind Association.  Everyone who met her was inspired by her spirit and enthusiasm for life.  She celebrated her blindness and transplant as special gifts of life.

     I come from a family riddled with diabetes.  Three older brothers and a sister have type II, and two of my brothers have started taking insulin injections.  One sister has just won a battle with breast cancer.  She had a single mastectomy and six months of chemotherapy.  Her spirit has been a strong influence in my life and in my battle, but most of all, in my acceptance of diabetes.

     My other sisters encourage me often.  They are there for me in so many ways.  One of them presented the idea to the other members of the family to buy me a computer so as to make life better for me now that

I have returned to school.  My family responded generously.  Sometimes when finances are not going well, my sisters are there for me.

     My husband is also a type II diabetic on insulin.  Seven years ago he underwent a successful triple heart bypass.  Recently he suffered a minor heart problem and blood clots in his leg.  He is on medication for both and is back to full time employment.  I am hoping I will be able to contribute to our household financially by May of '94, when I will receive my Associate Degree in Human Services.

     After my transplant, I went to the New Mexico Commission for the

Blind, where I was seen by Gladys, a wonderful rehabilitation counselor.  She worked with me to help me decide what I should do next.  I wanted to learn a career where I could be of service to my community.  In our research we found that the University of New Mexico offered a two-year program in Human Services.  I attended our local community college to get credit for my basic courses.  Then I applied to the degree program and was admitted.  In the program we do three semesters of field placement in various agencies in the city, providing practical experience in the field.  All this has been possible since I received my new kidney.

     My transplant has indeed proven to be the gift of new life for me.

     (Editor's Note:  The Diabetics Division of the National

Federation of the Blind has a Renal Failure, Dialysis, and Transplantation Committee.  Anyone wanting information should contact us.)  ■

Pregnancy and diabetes

by Donna Jornsay, R.N., C.D.E.

                Women who are pregnant can sometimes develop diabetes during their pregnancy.  This type of diabetes is known as gestational diabetes.  To learn more about this condition, The Monitor (published by Life Scan, Inc.) asked Donna Jornsay, who has insulin dependent diabetes, is the mother of two daughters, and the coordinator of Diabetes and Pregnancy Program at the North Shore University Hospital, a part of the Cornell, Medical Center.  Jornsay has published many articles on Diabetes and pregnancy and has worked closely with the American Diabetes Association.

                Q: What is gestational diabetes?

                A: Gestational Diabetes is diabetes that occurs during pregnancy, and usually develops somewhere between 24 to 28 week (six to seven months), typically lasting only as long as the pregnancy does.  The onset of gestational diabetes is not related to the behavior of the mother during pregnancy.  It is caused by hormonal changes due to the development of the placenta.  There are no symptoms, so the only way a woman would know if she has developed gestational diabetes is if she is screened by her doctor.

                Q: Who is most likely to develop gestational Diabetes?

                A:  Women who are overweight at the time of conception are most at risk for developing gestational diabetes.  By overweight, we mean someone who more than 120 percent of her desirable bodyweight.  Although desirable body weight is a determination by individuals, the medical profession measure desirable body weight using a 5-foot tall woman at 100 pounds as a baseline and adding 5 pounds per inch of height.  For Example, a woman who stands 5-foot, 6 inches tall would have a desirable body weight of 130 pounds.  But again, this may very from individual to individual.  Gestational diabetes is more common in older women, defined as women who are 35 or over at the time of conception.  Also at risk are women who have a family history of diabetes.

                Q: How does gestational diabetes affect the pregnancy?

                A: If a woman develops gestational diabetes, and her blood glucose levels are not well-controlled, she is likely to have a larger than normal baby.  A big baby makes delivery harder, and a caesarian section is sometimes required.  There is also a possibility that she may experience preterm labor.  But the good news is that even though scientists agree there is a genetic component to diabetes, having gestational diabetes does not necessarily mean that the baby will have or get diabetes.

                Q: What should a mother with gestational diabetes do post-partum?

                A: six weeks after the mother has delivered her baby, she should have a two hour, 75 gram oral glucose tolerance test to confirm that her blood glucose level has returned to normal.  Approximately 90 percent of women with gestational diabetes will have normal blood glucose levels, eight percent will have impaired glucose tolerance, and tow percent will develop type II diabetes, non-insulin dependent diabetes.  Women with impaired glucose tolerance (meaning blood glucose levels that are not normal, but not considered at the point of diabetes yet) and those with type II diabetes should visit an endocrinologist to receive special advice on diet, exercise, and medication.  These women should also have their fasting glucose checked annually.  It is important for women to know their blood glucose levels because if a woman develops diabetes between pregnancies and does not take the steps to control it, she runs the risk of having a baby with birth defects.

                If a mother does develop diabetes between pregnancies, she should normalize her blood glucose before conceiving.  In order to have normal blood glucose, the mother must test her blood glucose regularly and maintain almost normal control over her diet.  If she does these things and follows the advice of her doctors, mothers with diabetes have a 95 percent chance of having a healthy baby.  The key here, as in most situations involving diabetes, is normal blood glucose control through self blood glucose monitoring.

(Note: This article appeared in The Monitor, Volume 3 No. 3 published by Life Scan Inc.) ■

Let the wing of the butterfly flap

An Address Delivered by MARC MAURER
President, National Federation of the Blind
at the Banquet of the Annual Convention
Detroit, Michigan, July 6, 1994

Events in the universe have traditionally been classified as cosmos or chaos--cosmos for order and chaos for disorder. But within the last twenty years this division within the realm of science has become indistinct. A new discipline seeks to explain what appeared in the past to be random events by attempting to identify patterns in chaos. The significance of this study was dramatized by the meteorologist and mathematician Edward Lorenz, who asked in his 1979 address to the American Association for the Advancement of Science: "Does the Flap of a Butterfly's Wings in Brazil Set Off a Tornado In Texas?"

In the scientific study of chaos events are divided into two categories: those which are repeated precisely and those which (even though they sometimes appear to be repetitious) are never duplicated. Exactly repeated events (known as periodic occurrences) are understandable and predictable. Nonperiodic events may be strikingly similar, but they never entirely reproduce the circumstances of a former time. Therefore, they are unstable and unpredictable.

The Lorenz thesis is that a nonperiodic system is unstable at every point. Consequently, a small change in one part of it may be magnified through repetition so that, several cycles later, it becomes prodigious. The hope of the scientists studying chaos is that, if the overall pattern can be understood and if the controlling elements of a scientific process can be identified, unstable chains of events can be manipulated. The possibility emerges of bringing order out of chaos.

But what does all of this have to do with the blind? Do the principles involved in the scientific study of chaos have application to us? Is there a pattern to be recognized--and if so, what does it tell us? Do we as blind people exist within a structure that is nonperiodic and hence unstable at every point? Does this mean that there is the possibility of altering our circumstances--not only when the time is right, but at any time that we can find the strength, the will, and the resources?

If we were foolish and imperceptive enough to accept the beliefs about blindness that once were universally held, our history would be brief and our story soon told. Here it is in a nutshell: Our patterns of action and interaction are almost nonexistent. They are unremarkable--flat--so entirely repetitious and dull as to be dismissed without the slightest stir of interest. The cycle for the blind (we have heard it through the centuries) is periodic, stable, predictable. According to this theory, we who are blind come into being and live our lives without making substantial contributions, either to society or ourselves. Well, perhaps one contribution. Since we require more support than others, there will be a lightening of the burden for the rest of humanity when we leave this "vale of tears." If you think I exaggerate or overdramatize, I ask you to remember that the Greeks and the Romans exposed their blind children on the hillsides to die, and so did many others.

Yes, that was the theory. And in some quarters that is still the theory. But don't you believe it! It's a lie! That theory is not our theory. That understanding of blindness is not our understanding--and those who think that way cannot comprehend either the effort and sacrifice of our past, the struggle and transition of our present, or the hope and dream of our future. Chaos theory tells us that tiny alterations (even the flapping of the butterfly's wing) may produce dramatic effects--and at least for us, that is true.

We can prove it by what happened in Wilkes-Barre , Pennsylvania, on November 16, 1940. The wing of the butterfly flapped, and tornadoes were produced, not only in Texas but all over this country and the world. Just a handful of blind men and women met that day to form the National Federation of the Blind. Their leader was our first President, Dr. Jacobus tenBroek, a young blind professor and brilliant Constitutional scholar. Only a handful. Only the writing of a constitution and the exchange of a pledge of joint action and mutual support. Yet for the blind the repercussions changed the world. The wing of the butterfly flapped.

Although in 1940 some schools for the blind had been in existence for over a hundred years and although a number of agencies and institutions had been operating for decades, conditions for the blind remained bleak. Blind people were not regarded by the public as capable of independence, and often the professional educators who worked with the blind on a daily basis felt the same way, believing that we could be no more than wards.

One of the early pioneers in work with the blind was Dr. Samuel Gridley Howe, who served as the first superintendent of the Perkins School for the Blind and who went counter to the general trend. An educator of real understanding and discernment, Dr. Howe believed that blind men and women could perform satisfactorily in the ordinary workplace along with their sighted neighbors. Such progressive perceptions were not shared by most other educators in the field.

A biography of Edward Ellis Allen, written by his wife and coincidentally published in that pivotal year of 1940, describes the work of one of Dr. Howe's successors, for Allen was a superintendent at Perkins. Mr. Allen divided blind students into two categories: the blind and the semi-sighted. According to Allen, only some blind people are bright enough for education, and even those learn at a reduced pace. The semi-sighted are in danger of psychological damage if they study with the blind, and blind people are completely helpless unless assisted by those who are assigned to instruct them. Here are excerpts from Mr. Allen's biography. It is worthy of note that much of the content of the book consists of direct quotes from his own writing and that the book was approved by him:

When I entered upon my responsible duties [he says], I did so, having resolved to add my best strength to ameliorate the condition of the blind--to thin the ranks of the pitiable blind by transference of as large a number as possible to the ranks of those who command the respect of everybody.

I interrupt the narrative to ask: Is the implied sweeping generalization believable? If we have not had the advantage of instruction by an educator of the blind, are we, as blind people, unable to command respect? Without the ministrations of a professional like Allen to ameliorate our condition, do we remain pitiable? But there are other pronouncements from this 1940 publication:

It has been said [continues Allen] that more than any other class the blind are in the hands of their educators. If this is true, how vast are our responsibilities. The task before us is greater in that we have not only to instill into the blind a belief in themselves, we must also bring it about that the seeing believe in them too. The dependence of the blind upon us, their helplessness--this it is that gives the work its absorbing interest.

I pause to reflect that if those who would teach us believe that we are interesting because they think of us as dependent and helpless, may we be saved from such teaching and such teachers. But this is not all from the Allen biography:

One of the early and late problems [in schools for the blind, the book says,] was their children who saw too little to be taught in the public schools but too much to be in a school for the blind, where they were misfits. They would not become finger-readers; the retarded pace of the blind children caused these others to slow down to meet it, or they spent their superfluous energies in teasing and hectoring the children who saw less.

Such children [says Allen] had previously either given up school or had gone off to institutions for the blind, where, because of being misfits, they commonly became poor students and psychologically more blind than seeing. Their change to an atmosphere of appeal to the eye [in the semi-sighted classes where blind children with a little remaining vision were taught to read print] was of untold benefit, establishing in them a new morale.

This summation of the prospects for the blind was just as much a lie and just as repugnant to thinking blind people in 1940 as it is today. Our morale does not depend on sight. When we are children, we do not slow down the so-called semi-sighted (or, for that matter, the fully sighted) because we read Braille. We are not completely dependent or helpless, and we do not need caretakers to interpret our potential to the public so that we may gain respectability. The Allen description contains a failure of understanding--one which is simple to express but vast in its implications. Allen's conception of the blind is that we cannot speak and act for ourselves--that there is a fundamental difference between those of us who are blind and those who are sighted--that a guiding hand will always be necessary to the lives of the blind--that equality between those who are blind and those who are not can never be achieved--and that the semi- sighted are stuck somewhere between in gradations of inferiority and helplessness, depending on how much or how little sight they have.

At the same time that these shop-worn opinions were being prepared for dissemination to the public, the National Federation of the Blind was being formed. The Federation (whose thousands of members are gathered here tonight, more than half a century later) serves today, as it did in 1940, as tangible refutation of this misguided portrayal of who we are and what we can do. The recent shift in emphasis in work with the blind, both for administrators of agencies and for educators in residential and public schools, is nothing short of dramatic. Increasingly the mood is one of cooperation, interaction, and mutual responsibility between programs for the blind and organizations of blind consumers.

We have every reason to hope that the day will soon be at hand when those of us who are blind can have first-class citizenship as a matter of right, and have it without the qualms which members of emerging minorities often feel as to whether they are worthy or entitled--not whether they are competent or able to contribute, but whether they are worthy or entitled. And while we are on the subject of worthiness and entitlement, we seem (thank God) to be almost approaching a time when we can be accepted as first-class citizens and equal participants in society without the constant necessity of hitting professionals in the blindness field over the head with their own misguided books and meaningless studies to deter them from trying to hold us in custody. We want to live in peace and cooperation. We have absolutely no desire for custody and control over the lives of others, and we absolutely won't permit others to have custody and control over us.

The Allen postulate is that there can be no true independence for the blind, but the daily experience of the least among us proves that this is not so. There was a time when the overwhelming majority of administrators and professionals in programs for the blind thought we were their inferiors--and behaved accordingly. But that time is rapidly coming to an end. With increasing frequency those in the field of work with the blind are joining with us on the road to freedom. Our founder and first president, Dr. Jacobus tenBroek, charted the course in 1940. In his twenty-fifth anniversary banquet address in the nation's capital in 1965, he set forth the basic tenets of our movement as clearly as they have ever been put:

Until the advent of the National Federation of the Blind [he said], the blind people of America were taken care of but not represented, protected but not emancipated, seen but rarely heard.... We who are blind knew in 1940 that if we wished to be free, if we meant to gain those inestimable privileges of participation for which we had so long yearned, then we must organize for purposes of self- expression and collective action, then we must concert to engage in a noble struggle.

That is what Dr. TenBroek said about the reason for the existence of this organization. If we wanted freedom, he said, we would have to organize. We would have to struggle, and it would be a noble struggle. He was right. We did. We still do. It is. And we intend to keep doing. We intend to keep doing until we get equal opportunity and full participation. Hear what I am saying. We are not asking for extra privilege or special status but only for the right to be ourselves, to be fairly judged as we really are, to fail or succeed on our own merit. That is why the National Federation of the Blind was formed. That is why it continues to exist. That is what we want, and that is what we will have.

As I have already said, blindness has been regarded as a settled, periodic, repetitive matter for most of recorded history, without a stir or the flap of a butterfly's wing. Those who lack the capacity to see, the theory has always gone, are unable to compete. With the recent advent of institutionalized concern for the blind and civil rights legislation, the language has changed, but many of the beliefs have not.

Nondiscrimination legislation dictates that public entities and many private companies must have a handicapped coordinator. Those designated to be handicapped coordinators have become (usually without benefit of training or experience) experts in disability--self-proclaimed experts, it is true, but accepted as experts notwithstanding.

In the spring of 1994, materials were distributed to city bus drivers in Boise, Idaho, to assist them in being properly sensitive to the needs of blind passengers. In a volume entitled "Passenger Assistance Techniques: A Training Manual for Vehicle Operators of Systems Transporting the Elderly and Handicapped," drivers are taught that blind people are different. The book says:  Since vision is an important part of balance, and due to a lack of visual warning or abrupt movements, many visually impaired passengers prefer to sit in seats against the vehicle wall or in seats that have arm rests.  That's what the Boise bus company says. I would have hoped that the notion that sight is required for balance had been put to rest decades ago. But here it is again--one of the fundamental characteristics of blindness, according to the experts down at the bus company. Using these false assumptions about the nature of blindness as a starting point, bus company officials have prepared an appendix which lists the rules for leading the blind. Here is a sample of it:

1. Never take hold of a person using a white cane without first telling him who you are and what you plan to do.

That is what the rule says, but think how much is not said but implied. After you have told the passenger who you are and what you plan to do, go right ahead. Take hold. Then do it. It isn't really necessary to determine whether the blind person wants you to do it or not. You are the driver. Besides, the passenger is blind. That means you're in charge. If the passenger objects to this kind of treatment, this only demonstrates that blind people are touchy and irritable, not to mention needing to sit in seats with an armrest and against the vehicle wall. It's really your duty to make the blind person do what you want. Rule number two is like rule number one. Here it is:

2. Never take hold of or move a person's white cane until you have told him exactly what you are doing and why.

Again, how much is implied but never stated! After you have explained what you are doing and why, feel free to take whatever action you please. Blind passengers shouldn't have a choice in these things. They are passengers, and you are the driver. Their behavior is your responsibility--and besides, they need to sit in a seat with an armrest and against the vehicle wall.

If you don't like rules number one and two, think about rule number four. It begins sensibly enough, but after the good beginning, it comes to a wretched end. This is what it says:

4. Always stay one-half pace ahead of the person you are leading. Remember, if you forget to tell him the direction of movement, the one-half pace will allow him to follow the movement of your body. If the person being led is staying beside you, he may well fall if you forget to tell him the direction of movement.

Do you suppose the tendency of blind people to fall is connected with the instability and lack of balance created by absence of sight? One of the oldest, most outworn, and used-up lies about the blind is that we fall a lot--falling down stairs, falling off buses, falling off the wagon, or falling in love. Do we who are blind fall more frequently than the sighted? But how often has this been used as a reason for requiring our acquiescence to irrational demands that we participate in special programs for the handicapped and that we keep out unless we are (as they put it) accommodated? We who are blind, the rules tell us, need to ride in seats with armrests or next to the vehicle wall.

The tone of this group of rules for bus drivers in Boise, Idaho, is perhaps most succinctly set in rule nine, which says:

9. Make sure that the stop command becomes automatic. You may not have time for explanations in a real emergency.

The brevity of this rule does not hide its ugly significance. The blind passenger is under the control of the driver. It is expected that the passenger will be obedient to the commands of the driver and that the response will be automatic and unquestioning.

The irony of this publication is that it was created in response to the legal obligation to accommodate the handicapped. Although the booklet doesn't say so directly, its obvious presumption is that touching, pulling, propelling, or otherwise manhandling the blind passenger is acceptable behavior. In the name of being helpful, drivers are instructed to adopt a pattern of obnoxious officiousness. This behavior and thinking are not new, of course. They are simply the old, discredited custodialism, decked out in the new regalia of ADA and hiding behind the jargon of present-day bureaucracy and synthetic expressions of concern for the weak and disadvantaged. This is an example of the uninformed instructing the uninterested regarding the unfortunate. If we who are blind are in as bad a condition as that, you have to wonder how we got out of the house and found the bus stop in the first place. Let the wing of the butterfly flap. Oh, yes, let it flap! In fact, we will help it flap. No! We will do more than that! We will see that it does flap!

There are many odd theories about blindness. One of the better known is that those who become blind are granted compensatory powers. Everybody knows, for example, that we who are blind are good at music. After all, when the Lord removes one of your senses, according to the legend, he takes out the grindstone and sharpens up the others. Blind people have more acute senses of smell, touch, and hearing than the sighted-- right?

You may have thought that all of this talk about the special powers you possess was simply a matter of ignorance in bygone ages. Well, think again! We are now in the process of confirming that ancient foolishness with so-called scientific research. I wonder if we will ever know how much damage has been done to the blind by somebody making an application--to get a grant, to do research, to get a Ph.D., to get a good salary, to feel a sense of power, to make another application, to do more research!

A letter from the National Institutes of Health indicates that the federal government thinks there might be compensations for the loss of sight. Here in part is what it says:

In a collaborative effort between several laboratories at the National Institutes of Health, we are planning to explore the possible existence of "Compensatory Plasticity" in the blind. There is sporadic evidence for the fact that blind humans can compensate for their loss of vision by improving their remaining senses, but objective studies have been rare, and some studies even claim the contrary, namely that vision loss, especially when it happens early in life, actually impairs the development of other sensory modalities.

From behavioral and neurobiological studies on cats with early visual deprivation that some of us have undertaken recently [the letter continues], we are very optimistic that compensatory plasticity does exist in the mammalian brain, and we would like to explore this concept now in blind human subjects with modern quantitative techniques. Positron emission tomography (PET), for instance, has proven invaluable for monitoring neural activity in the living brain by measuring changes of local blood flow during mental tasks. It is a non-invasive, completely harmless technique, which we would like to apply to blind volunteers while they are listening to auditory stimuli presented to them via speakers or headphones. We hope to see an increase in brain activation in formerly visual as well as multisensory areas.

In our opinion [continues the letter], the importance of this planned research for the blind community cannot be overestimated. Not only would the objective proof of compensatory brain plasticity give the blind and their families a better outlook for their future, but it seems that more effective use of this compensatory plasticity should be possible, which would allow the design of sensory aids or prostheses better tailored to the brain structures and functions that have improved in this process.

Among blind subjects we are interested in those who have been blind from birth as well as those who have become blind later in life. These individuals should be essentially healthy and as free as possible of insults to the brain, other than blindness.

We would be extremely grateful to you and your colleagues if you could draw the attention of interested persons with total blindness to our planned research.

That is what the letter says. Believe me! I did not make it up. It is from the National Institutes of Health, a part of the government of the United States. Compensatory plasticity in the brains of blind people--that is what they want to study. When we are deprived of the sense of sight (holds the theory), the nerve impulses that might have come to the brain from the eye are redistributed to the other senses--touch, taste, smell, and hearing. If so, those of us who are blind are able to taste more keenly, smell more distinctly, feel more perceptively, and hear more acutely than others.

Think, for example, of the sense of touch. If our ability to feel is really intensified, a spanking for a blind child would hurt more than it does for a sighted child. Then, there is the intimacy of a kiss. Do we get more out of it than the sighted? I do not know how you feel about this proposition, but I suspect there might be those who would be willing to volunteer for the experiment.

Despite the scientific jargon, despite the studies on cats, despite the implementation of techniques using positron emission tomography, what a ridiculous bunch of nonsense! We are not freaks, and the so-called scientists who would treat us that way can learn something about us without the necessity of another scientific study and another federal grant. Blindness has not changed our mental powers. Not at all. We the members of the organized blind movement have learned to think, and one result of that thinking is that we are not willing to permit the ignorant theories and ignorant superstitions of a former time to be sanctified in the scientific literature by people wanting government grants to carry on so-called research. Blind people are not abnormal, and we will not let the experts tell us that we are. We have the strength, the will, and the resources to make our future what we want it to be. The wing of the butterfly has flapped.

In the medical laboratories and the offices of the city bus company, a thorough understanding of blindness is not to be expected. In the field of work with the blind, however, a more exacting standard should be demanded. The educators who write about the blind should have the background, the experience, and the knowledge to recognize the new reality. Unfortunately the assumptions in the literature of the 1990's sometimes resemble those of an earlier era.

In 1993 an educational text was published entitled The Art and Science of Teaching Orientation and Mobility to Persons with Visual Impairments. This book by Dr. William H. Jacobson, a professor of rehabilitation of the blind at the University of Arkansas at Little Rock, was ostensibly written to encourage the teaching of cane travel skills to the blind. However, an examination of the contents does not inspire confidence.

In Chapter Five there is a section entitled "Turns and reversing direction." It is not exactly what you would call a long section--ponderous, maybe, but not long. It contains seven sentences and three pictures. I discovered, to my astonishment, that the subject matter is how to turn around. Not how to move around the block or walk around the room or get around the teacher or go around the world but how to turn around. The text of this section is hard to follow without reference to the pictures. These show two people in an elevator. In the first photograph their backs are to the reader; in the second they are facing each other with their sides to the reader; and in the third they are facing forward. In other words, they turned around. As you hear these instructions, ask yourself if you are capable of this complicated maneuver. Here are the sentences:

When the instructor and student pivot around each other in turning and reversing directions, the cane is held in the not-in-use manner. To reverse directions using the about- face procedure, the two turn to face each other. The student places the cane in the hand that is holding on to the instructor. He places the cane vertically to the ground and flat against the instructor's arm, with the cane between the palm (or thumb) and the guiding arm. The student finds the instructor's free arm with the freed hand of the "cane" arm. He lets go of the original arm and grasps the cane in the not-in-use position. As he grasps the instructor's new guiding arm in the basic sighted guide position, they turn to face in the opposite direction (see Figures 5.1-5.3).

As you ponder Professor Jacobson's words, think back a little. Do you remember kindergarten and that little song "Do the Hokey pokey"? That's the one in which "You put your right foot in, and take your right foot out. Put your right foot in, and shake it all about. Do the hokey pokey, and turn yourself around. That's what it's all about." Did Professor Jacobson miss kindergarten, or is he under the mistaken impression that the blind did? Do we really need a college text to instruct those who will teach us to travel with a cane the intricacies of turning around?

The professor's writing would be amusing if it were not so destructive. The fact that such bizarre material can seriously be distributed is an indication of the extent of the misperceptions of blindness that still exist. The underlying assumptions of the work of Dr. Jacobson are completely without foundation. They are false--a distortion--a part of the burden of our past. We possess the ability to think and speak and act for ourselves. We know about our capacity to build and our powers of comprehension. A growing number of the professionals in work with the blind also know. Let Professor Jacobson turn from the pattern of yesterday and gain a new perspective. Let him learn about the flap of the butterfly's wing.

Although blindness can, with proper training and opportunity, be reduced to the level of a physical nuisance, it does not always happen that way. Sometimes the misunderstandings about blindness are permitted to survive, and those who become blind receive little stimulation, no encouragement, and virtually no training. When this occurs, the life of the blind person is wasted, and there is sorrow indeed.

About a year ago I received a letter from a mother in Philadelphia. Although it is brief, this letter describes a dramatic and soul-searching problem--one which demands our attention---one which raises questions that must be answered. The letter says:

Enclosed is my check for the most enjoyable book, Making Hay. I also have a blind son. He has been living in the blind residence since my husband died six months ago. I sent him there, as I am getting up in years and can no longer take care of him. The home might close, and there is no other place in Philadelphia for the blind. I wrote dozens of letters and made many phone calls, but no one responded--no one cares for the blind. I wrote to United States Senator Arlen Specter in Washington, D.C., and no reply from him either. If you have any suggestions as to where we can get funds to remain open--it would be appreciated.

Most sincerely,

As we have so often said, blindness need not be a tragedy, but in this case it is--or, more precisely, the false assumptions which have ruined this man's life are. When our state president visited the home for the blind, he learned the details. This mother cared for her blind son until he was almost forty years old. Then she moved him to a home for the blind because she was no longer able to give him the attention he needed. This blind man, a resident of the home for the blind, sings for his church, but he has no other regular interaction with society outside the home. There has been no training, no opportunity for productive employment, no encouragement to be a part of the broader society, and no prospect for taking initiative and planning his own future. But this is not the worst of it. This blind man's very wish for independence is gone. The spirit that might have sought self-sufficiency and freedom has been killed, stamped out forever.

What went wrong? What action can now be taken to correct the problem? How many other blind people are there who face the same isolation and loneliness of an unproductive, segregated existence? How many blind people are being urged to be satisfied with protection and care instead of self-sufficiency, risk, and freedom? How many of us have (without even knowing we did it) accepted less from ourselves than we might have achieved for the sake of a little peace? But our pattern is not unalterable. We have been told that our lives are predictable, and in the past this has often been true. The pattern of care and custody is being replaced by one of initiative and hope--and we the blind are making it happen. Although there may be some individuals who have given up, we have not. In the homes for the blind, in the hamlets and towns throughout the nation, on the farms or in the cities, there are opportunities to be had, and we will bring them into being. Tiny alterations can create tremendous results, and we shall not rest until the pattern is shifted. Let the power of the butterfly's wing be felt.

As I was contemplating the gathering of the organized blind movement in this convention of the National Federation of the Blind, I was reminded of an incident which occurred on a Thanksgiving day in the early 1970's. Dr. Jacobus tenBroek is the innovator and founder of the National Federation of the Blind. Dr. Kenneth Jernigan is the tireless builder of our movement and resourceful teacher of the blind, who in the early 1950's met Dr. tenBroek for the first time and began a period of intensive work and study that has never abated despite the death of Dr. tenBroek in 1968. The message of Dr. TenBroek, that the blind could engage in a noble struggle to win the rights of full participation and first-class citizenship, struck a responsive chord in the mind and heart of the philosopher and teacher, Dr. Kenneth Jernigan. He carried that message to every corner of the nation and began a process of building the National Federation of the Blind and of teaching blind people, which has altered the course of our history for all time. Dr. Jernigan encouraged us, challenged us, taught us--and the range of his instruction was broad enough to include matters as diverse as how to cut wood, how to structure a sentence, how to barbecue a steak, how to believe in ourselves, how to speak in our own best interests, and how to jump rope. Tiny alterations in a system can lead to changes that are beyond imagining.

A number of us had gathered for a meeting of the Federation that Thanksgiving day, and we had enjoyed one of those bountiful dinners. Late in the afternoon a few of us were talking about the participation of blind people in gym class. Some among us had believed that jumping rope could not be done without sight. Dr. Jernigan showed us otherwise. Rope jumping can be done alone, but it is more intricate, more complex, and more satisfying when done in tandem. One, two, three, or four at a time we jumped rope. Four at a time takes timing, precision, and cooperation. If it is to be done successfully, there must be similarity of purpose and coordinated effort. Jumping rope is a simple thing unless the person doing the jumping starts with the belief that it can't be done.

As it is with jumping rope, so it is with cooking a steak, sawing a tree, gaining independence, changing a society, revolutionizing thought, or causing the butterfly's wing to flap. Dr. Jernigan taught us to believe in our own abilities, and with that belief came the power to act. With something as simple as jumping a rope, he emphasized the importance of working together. It was true in 1940; it was true in 1970; and it is just as true today. If we want to alter the pattern, we must work with each other to reinforce each repetition in the cycle. Dr. tenBroek created the mechanism; Dr. Jernigan taught us to use it. What comes next is our responsibility.

And the prospect we face is bright. Look about you! We live in a wonderful time of unparalleled hope and opportunity. Federation centers are scattered throughout the nation, turning out competent graduates. We are getting more and more jobs in both government and private employment. An increasing number of professionals in the blindness field are coming to the new understanding and marching with us to freedom. And as important as anything else (maybe more important because more encompassing) is the positive shift in public attitude. All of this has not happened by accident. We have caused it to happen--through our Kernel Books, which blanket the land; through our television and radio announcements; through our daily example in workplace and home; and through our routines of daily living. We have made it happen, and we are accelerating the process exponentially.

As we come together tonight in our thousands from every part of the nation, we must try to identify those elements that make the pattern for us what it is. We cannot erase the past, the universal belief of a former time (which is even accepted sometimes today) that we who are blind are helpless and inferior. That incorrect assessment (that chain of mental slavery) is a part of our heritage. We should not hate it. Rather, we should cherish it, understand it, and learn from it. Let us hug it to our breasts and remember the countless thousands of blind men and women who were destroyed by it. It will be one of our most powerful teachers and motivators as we come fully to appreciate our own worth and strive for the recognition and acceptance that must and will be ours. In the theory of chaos we are told that a nonperiodic system is unstable at every point--that tiny alterations can produce dramatic effects. But of course an unstable system can be influenced for good or ill. We must seek those elements which will bring creative and positive change, and we must minimize the influence of everything else.

Although many of the writings regarding blindness (such as the ones from the Boise bus company, the National Institutes of Health, and the professor of rehabilitation at the University of Arkansas) are negative, dreary, and false, they are no longer unchallenged in shaping the pattern. The sentiments contained in these writings have been repeated almost without alteration for centuries. But no more! A new course has been taken--and we are not now dealing with the mere flap of the butterfly's wing. That occurred in 1940. It has been amplified and re-amplified through repetition until there are now tornadoes, not only in Texas but throughout the world.

We are altering the course of our history--not only when the time is right but as the need arises. The future is not a matter of prediction but decision--our decision. We have the example of our founder, Dr. TenBroek, and our leader, Dr. Jernigan. With growing momentum we are building upon what we in the Federation have already accomplished. Each of us must contribute our energy, and the combined effort has already become the strongest force that the field of work with the blind has ever known. The wing of the butterfly has flapped. But more than that, we have made it flap. The winds of change that are blowing will sweep away the old ideas, and we who are blind will gain our freedom. This is our promise--to ourselves and to the blind of coming generations! This is the commitment that was made at the time we first came to organize. This is the commitment we reaffirm today. We always keep our word. Our future is in our own hands. Let us go together to meet it!

[Photo: Mark Maurer]  ■

by Wesley W. Wilson, M.D.

   Q:   As a diabetic, is it all right for me to occasionally enjoy alcoholic beverages?

     A:   Your question, like many that deal with diabetes involves several aspects regarding the care of individuals with diabetes. I took the liberty of asking Carla Cox, R.D., a registered dietitian at the Western Montana Clinic, to help with the answer.  Carla' answer is included as the first part of my response as follows:  An occasional alcoholic beverage is acceptable for most individuals with diabetes. Consider these three main points:

     1) Alcohol does affect blood sugars.  Rather than raising them, it actually enhances the action of insulin and can result in lower blood sugars.  Symptoms of excess alcohol intake are similar to low blood sugar symptoms which may result in delay in treating low blood sugars resulting in an insulin reaction.

     2) At seven calories per gram, alcohol can quickly add unwanted calories with no nutritional benefit.  If you are trying to control your weight, you must consider the additional caloric intake.  For example, a five ounce glass of white table wine contains 100 calories and a 12-ounce can of beer has 130 calories.

     3)   Alcohol is contraindicated with many prescription drugs. If you are taking medications besides your insulin, check with your physician or pharmacist about drug and alcohol interactions.

     My attempt to answer your question deals more with life style effects that can occur with even modest alcohol use.  Alcohol before or during a meal does tend to increase appetite and does tend to reduce inhibitions, so that previous careful attention to details in your diet may be decreased.  We tend to feel more relaxed after alcohol and perhaps the most troublesome problem tends to occur when a cocktail is taken at a party.  In that situation it seems particularly difficult to avoid the high fat, high calorie chip dip or other snacks that are usually readily available at social occasions. Indiscriminant snacking on such food can lead to elevated blood sugars for many hours after the party.

     Some evidence indicates that alcohol can cause injury to nerve fibers.  Reason for concern is that old question of compounding the injurious effects of diabetes on nerves with added nerve damage from alcohol.  Another "double whammy" is the fact that both diabetes and alcohol tend to increase triglycerides, part of the lipoprotein complex, which may have some implication for the accelerated vascular disease seen in folks with diabetes.

     All in all, despite evidence that a small amount of red wine may reduce heart attacks, alcohol must be used cautiously by any individual with diabetes.  ■

Bobby Smith

Crossroad Challengers Director

Fort Worth, TX

November 18, 1994

     I have been a diabetic for 23 years, and I have been receiving the Voice for over a year now.  I feel the Voice is very informative for diabetics.

     I have started a ministry in my church for diabetics, visually impaired, and physically challenged people.  We had a State Association meeting in Arlington, Texas, November 15 and 16, where I passed out copies of the Voice.  The response was very good!  I have requested more copies to send with information to people in Texas.  I hope they will enjoy the Voice as much as I have.

Thank you,

Bobby Smith

                               *  *  *

A.N. Malpani, M.D.

Medical Director

The Community Health Research Programme

Ashish, Tardeo, Bombay

August 10, 1994

     Thank you so much for sending us copies of your superb educational materials so promptly in response to our recent request or materials for our reference library.  We appreciate your attention and are very grateful for your kind and generous gesture in gifting these to us!  We try to provide the best care possible for our patients.  One of our priorities is patient education, since well informed patients take better care of their own health.  However, educational materials are either too expensive or simply unavailable, which is why your help is so valuable.  We look forward to receiving you newsletter, Voice of the Diabetic, so we can remain updated about your activities.

     I thank you once again on behalf of all our patients.  We look forward to utilizing your reference materials and to making good use of your help and guidance, in order to improve the care and services we provide to our patients.

May God bless you!

Thanking you for your kindness,

Dr. A.N. Malpani

                               *  *  *

Rebecca H. Stalcup

Kerryville, TX

August 23, 1994

Ed Bryant, Editor

Diabetics Division

National Federation of the Blind

     What a wonderful thing you people are doing for us diabetics! I'm so anxious to get on your mailing list.  I've been taking insulin for almost 54 years.  As I'm sure you know, it has only been in the last few years we have been able to get any information to help us cope with the disease.  I am looking forward to the magazine and Thank You!

Sincerely,

Rebecca H. Stalcup

                               *  *  *

Erma Mae Taylor

N. Hollywood, CA

September 8, 1994

      Recently I received a cassette of Voice of the Diabetic from the Braille Institute in Los Angeles.

     After 30 years of insulin use, I learned more from this issue than I have ever learned or been told.  My cassette broke so I am asking for a copy (in print) for the insulin charts.  Also, if possible, a copy of the cassette to keep and a subscription to receive quarterly copies.

     Enclosed is a check for $20.00 for membership.  I thank you for helping all the people with blindness.  Keep up the "good work." Looking forward to receiving future copies.

Yours truly,

Erma Mae Taylor

                               *  *  *

Jean Gannaway

Jacksonville, AR

September 17, 1994

     It was with great delight and interest that I picked up your paper to read while at our Little Rock A.F.B. Hospital getting my blood checked.

     I am a diabetic and have never really understood--WHY ME?! Your paper gave me a little insight into the reasons and also if I neglect to accept this health problem, the consequences that I could have.

Thank You!!

     I realize now when diagnosed with diabetes, I must pay attention to my diet, exercise, and proper monitoring of medication.

     I see where you will send me a subscription for free.  This I appreciate if you would kindly do so.  As soon as I can, rest assured, I will send you a contribution for your excellent paper.

Thanking you,

Jean Gannaway   ■

Skiing is for everyone

by Debra Frank, M.S., M.S.

     Debra Frank holds a Master of Science degree in exercise and physiology and Master of Science degree in recreation therapy.  An active member of the NASJA (North American Ski Journalist Association), she is the committee chairperson for disabled skiing. She is also a member of the Medical Advisory Board for the

Nassau/Suffolk, New York, JDFI (Juvenile Diabetes Foundation International).  During the last fifteen years, she has competed in endurance triathlons, marathons and fitness competitions as a member of the IDAA (International Diabetics Athlete Association).  As a professional specializing in wellness, she educates others on the benefits of improved health through fitness and recreation.  Through her teaching and writing she encounters real stories which motivate her in all aspects of her work.

     For the affect Elizabeth's life and Stacey's death have had on my life, this article is dedicated to Elizabeth Siebel and Stacey Goodman.

     Over the past two decades thousands of people with disabilities have taken the ultimate challenge.  Venturing onto an unknown mountain, strapping long, awkward boards onto their feet, sitting in specialized apparatus, putting on layers of insulated, water-resistant clothing, and battling inclement weather systems may seem like a nightmare to some folks.  However, for millions around the world, skiing is an adventure and the basis for exciting experience which people of all abilities and disabilities can enjoy.  Whether trail blazing in the back bowls of Vail, Colorado, cruising down the sun-streaked mountain peaks of Lake Tahoe, Nevada, carving long giant slalom turns on the packed powder trails at Killington, Vermont, or riding the bumps on the slopes of Hunter Mountain, New York, the fun and thrill of skiing plus the personal challenge of all these elements have no equal, especially to those who are hooked.

     The PSIA (Professional Ski Instructors of America) and NHS (National Handicapped Sports) have been teaching adaptive skiing all over the country for more than a decade.  Because the ADA (Americans with Disabilities Act) is playing an integral part in public programming, most recreational organizations are opening their doors to more than 42 million Americans with disabilities.  Over 14 million Americans have one form of diabetes or another and many of us have some disease-related complications.  Skiing is popular among blind diabetics.  Many programs are set up around the country that cater to the needs of blind skiers.  Some of the best blind, diabetic, skiing athletes in the world have blossomed in these programs.  For example, Brian Lowe from Granite Bay, California and Thaddeus Neumann of Rockville, Maryland both learned to ski after becoming blind.  Neither shows any fear while bounding down the mountain listening to directional commands of his instructor/guide.

     Having shared invigorating skiing outings with both Brian and Thaddeus, I feel confident saying that they both ski to the "extreme," but with control.  The expression of freedom on their aces motivates me to further challenge myself.

      Physiologically, skiing is a terrific form of non-impact cardiovascular conditioning.  Any diabetic who is responsible about his/her blood glucose level is careful to carry the necessary nutritional supplements to use when spending time on the lift chair, in a lesson, or while seriously enjoying the sport of skiing.  In this manner the skiing diabetic can have a safe, fun, and regulated day. It's wise to remember that insulin requirements may be reduced due to the increased aerobic activity. As an athlete and a diabetic, I find skiing to be one of the most rewarding parts of my life and I plan on skiing well into my golden years. 

     Call the following organizations for more information.  NHS:

(301) 217-0960; PSIA Adaptive Skiing programs around the country:

(518) 452-6095; IDAA:  (602) 433-2113.  See and hear you all on the slopes soon!!  ■

 

Insulin vials: An update

by Ed Bryant

     In the last two editions of the Voice, Volume 9, No. 3 and Volume 9, No. 4, I reviewed the ongoing process of convincing the insulin industry and the FDA to incorporate tactile cues in insulin vial packaging. For several years, the Diabetics Division of the National Federation of the Blind has been actively lobbying the Food and Drug Administration to modify its regulations regarding insulin packaging and permit tactile cues to be incorporated into insulin vial configuration. Although for many months the "official response" has varied between stalling and silence, highly placed people are beginning to take notice!

     At this time, almost all insulin sold in the United States comes in U-100 vials.  These vials are identical to the touch and the only way to distinguish type or source of contents is to read the label.  As current packaging severely restricts independent self-management by blind diabetics and places them at risk of serious hypoglycemia and death, it is necessary to change it. With today's regimen of increased insulin injections, chances of dosing error are multiplied for all diabetics, blind and sighted.

     There have been a number of developments in the last six months. The last Voice carried the July 1994 letter I received from Solomon Sober, MD, of the FDA. (He is Director of the Division of Metabolism and Endocrine Drug Studies HFD-510, Center for Drug Evaluation and Research.)  At that time, Dr. Sobel told me the climate at FDA had changed and that policymakers were ready to consider the needs of blind diabetics.  They were ready to consult with the National Federation of the Blind in developing future policies.  As president of our Diabetics Division, I haven't heard a thing in over six months from Dr. Sobel or policymakers.

     Eli Lilly and Novo Nordisk are the two producers of all insulins sold on the U.S. market.  In April of 1994 I wrote to the chief executives of both corporations explaining the need to change insulin vial configurations.  (The letter was included in "Insulin vial

configurations:  Movement toward solution" published in the Voice Volume 9, No 3.)

     Executives of Eli Lilly and Company responded promptly.  Mr. Michael Querry, Diabetes Care Planning Associate, and I met at an arranged meeting during the 1994 Annual Sessions of the American Diabetes Association held last June in New Orleans.  Larry Ellingson, Lilly's Executive Director of Global Diabetes Care Planning, communicated last May about the adoption of worldwide guidelines for insulin packaging.  Last November, Robert Porter of Lilly's Market Research Division telephoned to set up a meeting with me in Columbia, Missouri, to discuss vial shapes, tactile markings, and to show me samples of such markings.

     On December 14, 1994 I met with representatives from Eli Lilly.  The meeting was fruitful.  Lilly's representatives indicated they wanted to work with our organization in resolving the insulin vial problem.  Our discussion focused on concerns the blind have in identifying insulin(s) and we talked about possible solutions.  I was shown prototypes of vial holders.  Insulin bottles would sit in holders of different shapes and colors.  We all concluded that these holders were not ideal because the actual vial wouldn't contain tactile cues. However, the Lilly Company is to be complimented for getting the ball rolling and presenting its prototypes.  The company is now working on other ideas.  I eagerly await developments.

     Novo Nordisk has been slower to respond.  Last August Jim Smart, Senior Vice President of Marketing, telephoned saying that he and Novo Nordisk's Medical Director wanted to meet with me "to discuss the services they offer."  (Note:  Contact was made after they received the last Voice, Vol. 9 No. 4, with its update on our project.)  As of press time, a meeting is scheduled for January in Columbia.

     While all this was going on, support was growing within the diabetes community.  In Voice Vol. 9, No. 3, I requested insulin-dependent diabetics and diabetes professionals who had input on his matter to make their thoughts known to Dr. David Kessler, Commissioner of the FDA.  Writers were also requested to send a copy to me at the Voice office.  Samples of the many letters received follow.

Diabetes Resource Center, Inc.

Louisville, KY

October 26, 1994

Dr. David A. Kessler, Commissioner

Food and Drug Administration

Rockville, MD

Dear Dr. Kessler:

     As a nurse practitioner primarily engaged in the care of people with diabetes, I routinely encounter patients who are visually impaired.  Those who are both visually impaired and insulin-dependent have several roadblocks to overcome in order to be independent in self-care.

     It seems that the industry has tackled some issues, like drawing up an accurate dose of insulin, by developing devices such as the Count-a-Dose and Loadmatic.  However, we still have problems with identifying how much insulin is left in the vials and which vial holds the rapid acting insulin (R) and which one is the intermediate insulin (NPH).  As educators and rehabilitation counselors to these patients, we must rely on our creativity to help each patient overcome his/her barriers.

     But this problem of “which insulin is which” has always troubled us.  It really would be a marvelous thing if we could prevail upon the insulin manufacturers to make the vials a different shape or even maybe just the tops of the vials could have some tactile marker which could identify the insulin as R or N.  This indeed would enable our patients to be independent in care, would prevent misidentification of the insulin and prevent medication error with its horrible end results, costly hospitalizations, and risk of death due to taking the wrong kind of insulin.

     Thank you for your kind consideration of this matter and for your help in advancing this issue with the drug manufacturers.

Sincerely yours,

Liz Grabowski, MSN, CDE, RN, CS, ARNP

Diabetes Clinical Nurse Specialist

                         *    *    *    *    *

Diabetes Treatment Center

Wesley Long Community Hospital

Greensboro, NC

December 2, 1994

Dr. David A. Kessler, Commissioner

Food and Drug Administration

Rockville, MD

Dear Dr. Kessler:

     We are writing to encourage your support and consideration for proposals made by the National Federation of the Blind to work with your organization and insulin manufacturers regarding the way insulin is packaged. The needs of those with diabetes who are blind and visually impaired should be addressed.

     We urge your immediate attention to this matter.

Sincerely yours,

Elaine Button, RN

Patti Hunsucker, RN

Kelli Baker, RN

Donna Riley, RD

                        *    *    *    *   

Janet Meirelles, RN, CDE

Lake Oswego, OR

November 3, 1994

Dr. David A. Kessler, Commissioner

Food and Drug Administration

Rockville, MD

Dear Dr. Kessler:

     My blind diabetic patients need your help.  At present, the only way to tell if a vial of insulin has regular, intermediate, or some other type of insulin, is to “read” the label. Clearly, this is impossible for someone who can't see.  My patients try to identify their vials with masking tape tabs or other temporary measures, but what happens if the tape or rubber band comes off?  Mistakenly taking a dose of regular insulin instead of the usually larger intermediate dosage can be serious or even fatal.

     The alternative, up to now, has been to have a sighted helper draw up “every” dose of insulin!  This results in a permanent loss of independence in an area where competence is possible. Reducing the expensive need for regular visits to a public health nurse or other helper would be an added advantage to the taxpayer.

     The solution is some type of permanent marking on insulin vials:  Perhaps one raised dot for NPH, two for regular, etc.  This would be simple, effective, and inexpensive.  Plastics have raised numbers for recycling--surely we can do this for the health of blind diabetics.

     Please use your influence to require drug companies to mark insulin vials with some permanent tactile identification.

     Thank you very much.

Sincerely yours,

Janet Meirelles, RN, BSN, CHES

Certified Diabetes Educator

                         *    *    *    *    *

National Federation of the Blind of South Dakota

Rapid City, SD

November 7, 1994

Dr. David A. Kessler, Commissioner

Food and Drug Administration

Rockville, MD

Dear Dr. Kessler:

     I write on behalf of thousands of diabetics who have lost vision and find that we cannot distinguish one bottle of insulin from another.  It seems to me that this is an issue that ought to concern you to the point of action.

    I first learned of my diabetes when I was a child of eleven--over forty years ago.  At that time there were fewer types of insulin and most of us took only one injection per day.  With advanced theories regarding better control of blood sugars, our regimen has changed and many of us use more than one type of insulin plus use several daily injections.  Thus, we are living longer despite complications.

     So what is the problem, you may ask?  Just this--without some way to identify the type of insulin in a given bottle, one can easily get the wrong type and die.  I have taken the wrong type of insulin despite my best efforts at marking them in order to prevent such an event. Both blind and sighted individuals have experienced mistaking one bottle for the other.  Why, since at one time different types of insulin came in different shaped vials, have we had to contend with this unsafe practice?  It is my understanding that the manufacturing companies are willing to make a change but the Food and Drug Administration is dragging its feet.  Why?  The health and welfare of the citizens of our nation ought to be of utmost concern.  Would it not seem logical to initiate and support a change that would enhance the lives of all diabetics?

     Blind individuals live independently, administer their own medications, pay taxes, and are active in their communities.  No longer are we "taken care of" by others in society.  There is no longer a need for that antiquated practice.  With proper training in the skills of blindness, diabetics are quite capable of effectively managing their disease.  A change in the shape and marking of insulin vials would enhance this ability.  I urge you to take action today.

Sincerely,

Karen S. Mayry, President

National Federation of the Blind of South Dakota

P.S.  Did you know that following a kidney transplant, the University of Minnesota will not dismiss blind patients until they can effectively set up their medications--thus, not expecting "someone else" to take care of them?  After all one ought to be responsible for one's health care.  The University of Minnesota believes it to be true.

                         *    *    *    *    *

      Matters are coming to a head.  More and more people are coming to understand that all diabetics, blind and sighted, have the right to independent self-management of their condition.  Our Diabetics Division will continue to press the FDA and the insulin industry to adopt tactile indicators in insulin vial packaging.  “WE NEED YOUR SUPPORT!”  Please join us, and make your views known to:  Dr. David Kessler, Commissioner, Food and Drug Administration, 5600 Fishers Lane, Rockville, MD 20857, and please send a copy to me at the Voice office.  Voice of the Diabetic will keep readers updated. 

 

[Picture: Ed Bryant] ■

Recipe corner

Warm Salads

By Marla C. Solomon, RD, CHE

Marla Solomon is a diabetes staff specialist at the Diabetes Treatment Center of America at Mercy Hospital and Medical Center in Chicago, Illinois.

                On the days when you crave a hot meal- but still want to keep your time in the kitchen to a minimum- try a warm summer salad. 

                During warm weather months, warm salads offer a contrast in temperature to the other components of a summertime meal – and are just as enjoyable throughout the rest of the year.

                Warm salads can be delightfully quick and easy to prepare.  While warm salads require some cooking, they don’t require the chilling time many that many cold salads do. 

                Like their chilly counterparts, warm salads can be served, as a side dish or main course, and can include a variety of healthy ingredients.

                Here are some good-sense tips to help you include warm salads as apart of your meal plan. 

·         Keep the portions sizes of the foods you include in your salad with in the limits of your diabetes meal plan. 

·         Limit your use of fats which can come in the form of butter, mayonnaise, sour cream, creamy dressings, seeds or nuts.

·         Substitute healthy versions of “heartier” ingredients whenever possible—use lean meat, low fat dairy products, low sodium sauces, instead of the regular version.

·         Choose low fat varieties of cheese when ever possible, or use regular versions sparingly.  Many warm salad recipes include cheese as a main ingredient, either as a bass or as a topping.  You can take advantage of the wonderful taste and texture of cheese can offer, but don’t overload--a sprinkle of low fat cheese over the top of a salad should be enough to suite your taste. 

·         Fill up on low calorie, free vegetables such as lettuce, cucumbers and onions.  Fortunately many warm salads feature vegetables that counted as free exchanges on your meal plan.

·         For warm fruit salads, substitute canned fruit for fresh fruit when not in season.  Just be careful to select varieties of canned fruit that is packed in its own juice, or rinse fruit that is packed in syrup (which can be quite high in sugar).  Try adding low fat, unsweetened (or artificially sweetened) yogurt to a fruit salad to add moisture and bring out the flavor of the fruit.

·         For warm meat, vegetable or pasta salads perk up the flavor with a low fat oil-and-vinegar or a sprinkle of lemon juice.

·         Use spices and seasonings to add a wealth of flavor to any warm salad--without adding calories or fat.  Consider adding cumin or chili powder to an oil-and-vinegar dressing for Mexican appeal; a pinch of dill to a yogurt dressing for a Mediterranean touch.

·         Use flavored vinegars to add an unusual touch to an otherwise “ordinary” warm salad.  Your local gourmet supermarket should have a large variety of flavored vinegars you can choose from.  Remember, however, that any seasonings or dressings you add should enhance, not overpower the flavor of a warm salad.

Here are some recipes you might want to try—during the summer or any time of year.

Warm salad recipes

                This recipe is adapted from The Joy of Cooking, by Irma Rombauer and Marion Rombauer Becker. Published by Bobbs-Merrill Co., Inc., New York, 1975.

German Hot Potato Salad

6 medium potatoes (unpeeled)

2 tablespoons vegetable oil

¼ cup chopped onion

¼ cup chopped celery

1 chopped dill pickle

¼ cup water or stock

½ cup vinegar’1/2 teaspoon sugar’1/2 teaspoon salt

1/8 teaspoon paprika

¼ teaspoon dried mustard

Chopped parsley or chives (optional)

                Cook potatoes in a covered saucepan until tender.   Peel slice while hot.

                Heat oil in a skillet.  Sauté onion and celery until golden brown.  Add chopped pickle.

                In a separate sauce pan, heat water or stock, vinegar, sugar, salt, paprika and mustard until boiling.  Transfer mixture to skillet and add potatoes, stir gently.  Serve hot.  Garnish with chopped parsley or chives if desired.

Yield: 6 Servings (2/3 cup each);

Exchanges: 1 ½ starch/bread, ½ fat;

Calories:  130; Fat: 3 gm; Protein: 3 gm; Carbohydrate: 25 gm; Sodium:  54 gm; Cholesterol: 0.

                This recipe is adapted from Better Home and Gardens/ The Dieter’s Cookbook.  Published by Meredith Corporation, Des Moines Iowa, 1982.

Tijuana Taco Salad

1 pound lean ground turkey

¼ cup chopped onion

1 can (7 ½ Ounces) tomatoes (Undrained), cut up

2 teaspoons chili powder

¼ teaspoon garlic powder

¼ teaspoon salt

1/8 teaspoon ground cumin

1/8 teaspoon pepper

1 large head lettuce

3 medium tomatoes, cut into wedges

¾ cup (3 ounces) shredded Cheddar Cheese

                Brown Ground turkey and onion in skillet; drain.   Stir in undrained tomatoes, chili powder, garlic powder, salt, cumin and pepper.  Bring to a boil, then reduce heat and simmer until liquid evaporates, stirring occasionally.

                Line six individual salad bowls with large lettuce leaves.

                Tear remainder of lettuce into bite size pieces and divide among salad bowls

.                             Spoon turkey mixture onto lettuce.

                              Arrange tomato wedges over turkey.  Sprinkle with shredded cheese and serve.

                Yield: 6 Servings; Exchange: 3 ½ lean meat, 1 starch/bread; Calories:  296; Fat: 16 gm; Protein: 30 gm; Carbohydrate:  11 gm; Sodium:  315 mg; Cholesterol: 90 mg.

                This recipe is adapted from “Pantry Panache,” by Jean Kressy.  Published by Cooking Light magazine, January-February 1994 issue page 72. 

Couscous Salad With Shrimp

2 cups water

1 cup couscous (uncooked)

1 ½ cups cherry tomato halves

½ cup finely chopped fresh parsley

2 cans (4 ¼ ounces each) medium shrimp in water drained

¼ cup plus 1 tablespoon fresh lemon juice

3 table spoon olive oil

½ teaspoon grated lemon rind

½ teaspoon pepper

¼ teaspoon salt

                Bring water to boil in a large saucepan.  Stir in couscous.  Remove from heat and let stand, uncovered for five minutes.

                Fluff with a fork.  Uncover and let cool for 10 minutes.

                Combine cooked couscous, cherry tomato halves, parsley and shrimp in a large bowl; toss gently.

                Heat lemon juice and next four ingredients in a small saucepan, stirring with a wire whisk.  Add to couscous mixture and toss to coat.

Yield: 4 servings (1 ½ cups each); Exchanges: 3 starch/bread, 1 medium fat meat, 1 fat; Calories: 336; Fat: 11gm, Protein: 17 gm; Carbohydrate: 42 gm; Sodium: 229 mg; Cholesterol:  74 mg

Cold Salad Recipes

                The following recipes are from Dr. Anderson’s High Fiber Prevention Plan, by James W. Anderson, MD.  Published by the University of Kentucky Press, 1994.

Apple-Citrus Salad

4 red delicious apples, cored and sliced lengthwise (unpeeled)

4 medium grapefruit, peeled and sectioned

4 medium oranges, peeled and sectioned

1 cup unsweetened orange juice

¼ cup flaked coconut

                Combine first four ingredients: cover and chill up to eight hours.  Sprinkle with coconut just before serving.

Yield: 12 servings (1/2 cup each); Exchanges: 2 fruit; Calories: 88; Fat: Less than 1 gm; Protein: 1 gm; Carbohydrate:  21 gm; Sodium:  1 mg; Cholesterol:  0.

Fiesta Salad

 2 medium sweet red peppers

1 can (8 ounces) green beans, drained

1 can (10 ½ ounces) white beans drained

1 can (10 ½ ounces) kidney beans drained

1 small red onion, sliced thin

1 table spoon olive oil

2 tablespoons lemon juice

¼ teaspoon black pepper

2 tablespoons minced parsley

Cut red peppers in half and remove seeds.  Place on a broiling pan and flatten.  Broil six inches below heat for eight minutes, or until charred.  Allow to cool, then peel and cut into ½ inch slices.

                In a large bowl, combine olive oil, lemon juice, black pepper, and parsley.  Pour mixture over beans and mix gently.  Cover and chill for two hours.

Yield:  8 servings (1/2 cup each); Exchanges: 2 vegetable; Calories: 110; Fat: 2 gm; Protein: 6 gm; Carbohydrate:  17 gm; Sodium:  196 mg; Cholesterol:  0.

Minted Green Bean Salad

¼ cup plain, low fat yogurt

1 tablespoon chopped fresh mint

1 ½ teaspoons lime juice

1 packet Sweet N’ Low sugar substitute

1 small garlic clove, minced

Dash white pepper

1 can (16 ounces) green beans, drained, OR 2 cups cooked green beans

6 cherry tomatoes, cut into quarters

2 scallions, minced

                In a small bowl, combine yogurt, mint, lime juice, sugar substitute, garlic and pepper; stir until blended

                In a salad bowl, combine green beans, tomatoes, scallions and yogurt mixture; toss to coat.  Chill/

Yield: 2 servings (1 cup each); Exchanges: 3 vegetable; Calories: 84; Fat: Less than 1 gm; Protein: 4 gm; Carbohydrate:  217 gm; Sodium:  598 mg; Cholesterol:  3 mg.

Creamy Potato-Vegetable Salad

6 cups sliced, cooked potatoes

½ cup cooked peas, chilled

1 cup broccoli flowerets

¾ thinly sliced carrots

½ cup celery

½ medium onion

1 bottle (8 ounces) creamy reduced calorie buttermilk dressing

1/8 teaspoon black pepper

Lettuce leaves

                Combine potatoes, peas, broccoli, carrots, celery, and onion in a large bowl.

                Add buttermilk dressing and mix.  Sprinkle with pepper and chill.

                Serve in salad bowl with lettuce leaves.

Yield: 8 servings (1 cup each); Exchanges: 1 starch/bread, 1 fat; Calories: 90; Fat: 2 gm; Protein: 2 gm; Carbohydrate:  16 gm; Sodium:  397 mg; Cholesterol:  8 mg. 

(Note: Reprinted with permission of Diabetes in the News, published by Miles Inc., Diagnostics Division.) ■

 

What you always wanted to know but didn’t know where to ask

 (Resource List)

Inclusion of materials in this publication is for information only and does not imply endorsement by the Diabetics Division of the NFB

New Cough Syrups for Diabetics

                Diabetics have always had to be concerned about how the ingredients in cough, cold, and allergy remedies would affect their diabetes.  Now a new product called Diabetic- Tussin^TM takes the worry away.  Developed especially for diabetics and others who must maintain a sugar, sodium, alcohol, fructose, sorbitol dyes, and decongestants.  Available over the counter, it comes in four different formulas as an expectorant (Diabetic-Tussin^TM) as a cough suppressant with an expectorant (Diabetic-Tussin^TM ),for allergy relief (Diabetic-Tussin Allergy Relief^TM), and as a cough suppressant/expectorant for juvenile diabetics (Children’s Diabetic-Tussin^TM).  Sold at pharmacies, these remedies are manufactured by Health Care Products, a Division of Hi-Tech Pharamcal Company, 369 Bayview Ave,. Amityville, New York, 11701. 

Foot Cream

                Steuart Laboratories of Harmony, Minnesota has developed a foot cream which combines the natural antiseptic Melaleuca Oil, and other natural oils, in a vanishing cream base.  The Cream can be used on slow healing sores and for itching, dry, cracked skin on the feet and legs.  Reports state that the cream penetrates rapidly and leaves no greasy film.  A two-ounce jar costs $9.25 plus $2.50 shipping.  To order, contact Steuart Labs, P.O. Box 297, Harmony, MN 55939; telephone: (507)-886-2661.

Free

                “Let the Wings of the Butterfly Flap,” an article in this Issue of the Voice , was presented by President Marc Maurer as the keynote address during the 1994 annual convention of the National Federation of the Blind.  It is available in print, in Braille, or on 15/16 IPS audiocassette.  For a free copy, contact National Federation of the Blind, Materials Center, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314. 

Insulin Measuring Device

                The Count-A-Dose^TM   is a syringe filing device designed especially for diabetics who are blind or are losing vision so that they may independently and accurately draw up their own insulin.  It fills in one-unit increments and uses the B-D 50 unit (1/2 cc) syringe.  As each unit of insulin is drawn, the device makes a distinct click which can be heard and felt.  The device holds one or two bottles of U-100 insulin for easy mixing.  Print directions and an instructional cassette tape are included.  The Count-A-Dose^TM costs $49.95 and may be ordered from Jordan Medical Enterprises at 800-541-1193. 

New Blood Collector

                Developed for diabetics with unsteady hands and those who are blind or losing vision, the New Smart Dot^TM Blood Collector-Dropper places the droplet for an accurate reading from Lifescan’s One Touch II or One Touch^TM  Basic Meter.  With a 30-day money back guarantee, it costs $10.95 plus $3.50 shipping and handling.  Visa, MasterCharge, Discover and AMEX are accepted.  To order SmartDot^TM 2655 West Central Ave., Toledo, Ohio 43606 telephone: 800-984-1137.

New Cookbook for Diabetics

     Are you tired of boring diabetic fare which might as well be fungus, instead of food, on your plate?  Do you feel you can't enjoy social gatherings and life's celebrations because your life revolves around dietary restrictions? If you are frustrated and feel deprived, you need wholesome food for mind and soul found in a refreshing, unique book titled The Diabetic's Innovative Cookbook. Written by Joseph Juliano, M.D., an endocrinologist with diabetes, and Dianne Young, a professional chef, this uplifting, newly published book is a lot more than a cookbook. Along with 145 new "breakthrough" recipes which Chef Young calls "food for the new millennium," Dr. Juliano demonstrates how the diabetic can participate in cocktail and birthday parties as well as other social occasions. He states that planning and using strategy will allow the diabetic to "attend the party and enjoy it as much or even more than others." In addition to techniques on dining out and enjoying late-night snacks, Juliano has included much information in chapters on sweeteners, fiber, fruits, and the role of family and friends in the life of the diabetic.

                Emphasizing a positive approach to the diabetic diet, this collaborative effort of chef Dianne Young and Dr. Joseph Juliano establishes a new standard in the realm of literature for diabetics. Published in 1994 by Henry Holt and Company, the hardcover book costs $25.00. The Diabetic's Innovative Cookbook is an excellent guide and cookbook for both the newly diagnosed and experienced diabetic.  ■

          

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 Diabetics Division of the NFB

New Drug Research

     We've been asked to announce: A researcher at The Johns Hopkins Medical Institutions, Baltimore, Maryland, is recruiting people to test a drug that may help those with adult onset diabetes avoid the extreme rise and fall in blood sugar and insulin levels that often occur after meals.  The drug slows digestion of carbohydrates in the small intestine so that they enter the bloodstream gradually, rather than all at once, says Adrian Dobs, M.D., associate professor of medicine.

                African-American diabetics who are over 30 years old and who are not taking insulin are eligible for the study.  "Diabetes is more prevalent among African-Americans than among whites, and they also

have more complications," says Dobs.  "This drug could help prevent those side effects, with no major complications."

                Diabetics have difficulty converting carbohydrates--sugars and starches--into energy.  Maintaining stable blood sugar and insulin levels can protect diabetics from such complications as heart disease, vision loss, gangrene and kidney disease, she says.

Hear ye, hear ye, a raffle

The Diabetics Division 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 Diabetics Division has elected to hold a raffle.

THE GRAND PRIZE WILL BE $500!  The winning ticket will be drawn, and the winner's name announced, on July 6, 1995, at the banquet held during the annual convention of the National Federation of the Blind.

Raffle tickets cost one dollar each, or a book of six may be purchased for $5.  Tickets may be purchased from state representatives of our Diabetics Division, or by contacting the Voice Editorial Office, 811 Cherry Street Suite 3309, Columbia, MO 65203; 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 mailed to the Voice office no later than June 16, 1995, or they can be personally delivered to John Yark, Raffle Ticket Chair, at this year's NFB convention in Chicago, Illinois.  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 Diabetics Division moving forward.

Braille MS-DOS 6.2 Guide

     We have been asked to announce:  DOS 6.2 Quick Reference, Que's guide to MS-DOS, is now available in Braille.  The guide answers the most-asked questions, explains frequently used commands, options, features, and provides instant access to both the syntax and use of most MS-DOS commands.  Along with short cuts, tips, and an index, the guide contains alphabetical task-oriented command listings.  Three Braille volumes cost $9.95 (same as the print edition).  To order, contact National Braille Press, 88 St. Stephen Street, Boston, MA

02115; telephone:  (617) 266-6160.

Insulin Shortages

     The following information from Novo Nordisk Pharmaceuticals alerts Voice readers regarding the company's insulin shortages.  In response, Eli Lilly and Company has announced its ability to serve patients whose normal brands have been discontinued.         

               Novo Nordisk Pharmaceuticals is discontinuing all of its animal-derived insulin except its purified pork insulin.  Because ninety percent of the company's customers use human insulin, Novo Nordisk plans to focus its efforts on human insulin production to better meet the needs of the greatest number of patients.  As a result, many

patients will have to change either their species or brand.  Animal source insulin still remains available from Eli Lilly and Company. However, patients should [1]make changes in insulin cautiously, and only under medical supervision.[1]

                The following table summarizes the Standard Insulin that is being discontinued and recommended alternatives (alternative insulins in bold print are those most similar to the discontinued insulin):

[1]Standard Insulin         Run-Out Date        Alternative

(being discontinued)

Standard Regular         November 1994       Novolin R 

NDC 0169-3512-15                                      Regular Iletin I

Standard NPH             December 1994       Novolin N

NDC 0169-3522-15                                     NPH Iletin I  

Standard Lente           January 1995             Humulin L

NDC 0169-3528-15                                     Lente Iletin I

     Although Novo Nordisk will continue to manufacture purified pork insulin, a temporary backorder may occur.  While supplies of Purified Regular and Purified NPH were generally available at press time, Purified Lente was backordered.         

    Novo Nordisk expects to have a full supply of human insulins early this year.  However, it has faced intermittent shortages and anticipates unavailability of some products.  At press time, all human insulin 10 ml vials were generally available except Novolin L and Velosulin. Human insulin 1.5 ml cartridges Novolin N PenFill and

Novolin 70/30 PenFill were also backordered.

     For complete information on current product availability, please call Novo Nordisk at 1-800-727-6500.  

                Eli Lilly and Company, in response to Novo Nordisk's supply concerns, has increased its production and inventories of all currently marketed insulins.  The company wishes to assure patients that it has more than adequate stock to cover the insulin needs of the entire U.S. market without interrupting its normal international shipments.

  Lilly Customer Services is prepared to respond to any questions

you may have.  Please call 1-800-545-5979 for more information.

Diabetes, Complications, Options

     The Diabetics Division of the National Federation of the Blind has a pamphlet titled "Diabetes, Complications, Options," which explains our outreach programs.  Full of essential information, it reaches out to anyone concerned with diabetes and its ramifications.

      Unlimited free copies are available to all interested parties.  The pamphlet is great for libraries, pharmacies, physicians' offices, seminars, hospitals and so on.  "Diabetes, Complications, Options" may ordered from:  National Federation of the Blind, Materials Center,

1800 Johnson Street, Baltimore, MD 21230; telephone:  (410) 659-9314.

Voice distributors needed

     Since the Voice is now offered free, our Diabetics Division 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, 1800 Johnson Street, Baltimore, MD 21230  (888) 581-4741.

NFB Scholarship

The National Federation of the Blind will award $71,500 in scholarships this year.  Individual scholarship amounts range from $2,000 to $10,000, and the competition is open to any legally‑blind individual who will be a full‑time, post‑secondary student in fall 1995.

All 26 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 at the 1995 convention of the National Federation of the Blind, in Chicago, Illinois.  The NFB will also pay all expenses of scholarship winners to attend the convention.

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 1995 NFB Scholarship program must be received by March 31, 1995.  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, 814 4th Avenue, Ste 200, 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 affiliate presidents.

4.   Financial Aid Offices of educational institutions.  ■