VOICE OF THE DIABETIC

A Support and Information Network

The Diabetics Division of the

National Federation of the Blind

Volume 9, Number 4, Fall Edition 1994

 

KEEPING THE SUN IN MY LIFE

by Cristina Cequiel

     As an Argentinean member of the Diabetics Division of the National Federation of the Blind, I am happy to contribute my writing, some of which has appeared in our magazine published by the Association for the Patients with Renal Chronic Disease in Argentina (A.D.E.R.C.A.).  I hope my story will encourage others to ACCEPT their diabetes and to find THE SUN inside themselves in spite of the problems the disease brings.
     My diabetes was discovered when I was eleven years old.  In the following years, I experienced many of the complications associated with being an insulin-dependent, juvenile-onset diabetic.  I am blind in one eye and the vision in the other is severely impaired.  I have experienced kidney failure and have had transplant surgery twice.  Though my first kidney transplant failed, the second surgery (kidney and pancreas) was partially successful.  My new pancreas is functioning well, but I have had to resume dialysis, twice a week, two hours a session.          
    In an article published in A.D.E.R.C.A.'s magazine, I addressed two questions.  The first question:  Do I have problems?  The second question:  Am I a victim?  I offer my experiences, thoughts, and some of my philosophy and insights, in the following expansion of the excerpt from that article.
    DO I HAVE PROBLEMS?  Prior to transplant surgery, I was well acquainted with many complications inherent in diabetes, such as infection, loss of sight, etc.  I endured the limitations. 
However, with my new pancreas, I am no longer diabetic.  Do I still have problems?  Yes.  For example, because I must take antirejection medications, I have infections which to others would be mere nuisances.  As the body considers transplanted organs as intruders, these drugs are necessary so that my body will not reject the functioning donated organs.  However, those same antirejection treatments diminish my own natural defenses and leave me open to more infection.   And, my failing transplanted kidney means that sometime soon I shall need another.  Yes, I am continuing to experience problems directly attributable to having HAD diabetes.
     AM I A VICTIM?  When my diabetes was first diagnosed, I was eleven years old.  It was then, when I was talking to God, that I told myself that I was not going to make people feel sorry for me.  I didn't want anyone to talk about me saying, "Poor little girl."  I didn't want pity.  I wanted to be admired as a total person.
   I didn't experience diabetic complications until the age of 23, when my urinary tract infections began.  I was a fairly well-controlled young diabetic, who did not seek pity or attention for my disease.
     Among the many things that I ought to have settled in my head during those early years was an order of priorities, the first priority being ACCEPTANCE OF MY DISEASE.  What did accepting my disease entail?  Did it mean I had to accept that I was ill?  Did it mean that I had to continue following a diet?  Did it mean I had to add medications, now that I was taking more small pills to control the urinary infections?  Did it mean that I would have to make my own laboratory and clinic checks as well as make small changes in my insulin and/or diet?  Yes, all this; but all this was not news to a juvenile-onset diabetic.  I had looked after my disease well enough since diagnosis.  Yes, it was all this; but it was also much more, so much more.
     Shortly after a bout with typhoid fever at age 23, my kidney disease presented me with another physical disorder, the first since the earlier urinary tract infections.  About the same time, I began to experience another complication of diabetes.  That complication involved my vision.  The side effects, in time, would worsen and become more in number.
     My symptoms indicated that I had to take better care of myself, and that I had to strictly obey doctor's orders, etc., etc.  But, the "etc." was so great, so difficult, and so heavy that I began to wonder if it were possible to know peace in my spirit.  In my philosophy of life, the mind needs to know, when there is a problem, whether the problem will endure for a day, a month, or for life.  To make it clear in your mind, just say, "Okay problem, come with me.  Let's walk together."  Don't fight the problem.  Tell yourself that you are going to be friends with it.  In other words, accept the fact that you have a problem.
     Accepting what life has handed to me and getting on with life in spite of difficulties have enabled me to transcend a number of medical misadventures.  Compared to the USA, the Argentine medical establishment is primitive.  The doctors may know what is going on, but they don't tell the patient.  Their medical mistakes have damaged my health.  My family and friends have already raised $62,000 of the $75,000 needed to send me to America for a new kidney.  American doctors are so much better!  They tell you what is going on, and they taught me to educate myself.
     What is important is not a catalog of miseries, but an understanding of the journey.  How does the spirit attain peace when we are traveling the "Kidney Way?"  What more would be asked of me? During the early years, when my diabetes was a small, manageable problem, it occurred to me that I could lose my spirit to the disease. I admitted to my family, friends and to myself that even though my diabetes was small, it was possible to let the diabetes defeat me as a person, to give into the temptation to self-pity.  I would NOT become "poor Cris."  I made up my mind that I would deal with complications the best I could, when they appeared.  Yes, I would learn to cope with my diabetes.  After all, there was nothing that I could do to rid myself of it.  Only at that time did I truly ACCEPT my disease.
     When I was 24, I lost the remaining vision in my right eye.  The macula was burned by a negligent doctor who had applied the laser to my eye.  Didn't I already have enough problems to deal with? And now this.
    Now, I had to deal with blindness.  I had lost sight in one eye; I was angry.  I said to myself, "No, Cris, this is not the way to face the problem.  A complaining and defeating attitude will not be helpful to you."  I asked myself, "Where are your fighting spirit, your courage, and your maturity?  Where is the dignity to know how to accept with equanimity the blows of destiny in life?  No, Cris, your diabetes, kidney disease, and blindness are not the cause of your anger.  What makes you angry is the undignified way you are making yourself feel.  You feel like a victim, like a loser."  All the anger, crying and fighting within made me believe I WAS NOT GOING TO WIN.
     Coping with diabetes and its complications can be difficult.  Many times I wanted to rebel.  For a few moments I accepted being a victim.  Then I remembered the Lord will work with me.  All can be overcome.  In living and dying, it is important to avoid what I call "negative functions," such as self-pity and accepting a victim's role. Those beliefs allow the disease to defeat the spirit within us.  They block out the sun in our minds and prevent us from being happy and enjoying life.  Such attitudes make us slaves of diabetes.  Negative functions can leave us feeling a victim to all that surrounds us; playing the role of the victim is a self-defeating, vicious circle.  We have to escape!
    To overcome feeling like a victim and to escape from this self-defeating, victimizing, vicious circle, I said to myself, "Cris, it's in your hands and in your free will to make the needed changes.  First, accept the fact that you are now blind and that the blindness is part of the diabetes which accompanies your life.  You learned how to cope with diabetes as a child.  Now, you must accept the disease and live with it.  Accept this most recent complication as part of your disease, and get on with the rest of your life.  Then, you can see the positive aspects, the sun, in your life."
     It was repetition that made this thought take root in my mind.  I suggested to myself that I change by accepting this new complication in my life.  This attitude allowed me to accept my disease with all of its problems.  Yes, I admit that acceptance of my blindness was another struggle in my life; but there are always problems, and you just have to learn to accept whatever comes up and go from there.  No, I am not a victim.  I know the Lord will work with me.  Because I have accepted my disease and its complications, I am a winner. ■

 

INSULIN VIALS: THE LATEST UPDATE

by Ed Bryant

In the last edition of the Voice, Volume 9, No. 3, my article "Insulin vial configurations: Movement toward solution" covered our efforts to get nonvisual identification included in insulin packaging. At that time, an FDA official was showing resistance. I responded with the letter below.

Dear Mr. Short:
     Attached is a copy of my letter to the insulin manufacturers.
This is the item I promised to fax to you.
     I appreciate your calls to my office on June 21 and 22, regarding proposed regulations for insulin vial coloring.  The attached letter details my objections to such an approach.  It is apparent that the blind were totally excluded from the planning process, because of the antiquated and insupportable notion that blind diabetics are incapable of self-management.  Your perception that "someone who was totally blind would have someone else taking care of medication for them" is totally vitiated by thousands of blind diabetics, myself included, who have been successfully self-managing our diabetes for decades.  ALL WE ASK is the means by which we can distinguish between insulins without sight.  This would aid our safety and reduce dosage errors.  We have everything else under control.
     The time when disabled people were chained to the bed is long since over.  Blindness is not synonymous with inability!  Such discrimination against the disabled led to passage of the Americans with Disabilities Act in 1990.
   Because the FDA clearly did not do their homework in this matter, I asked you to consider reopening the fact-finding process, but was told "the decision had been made."  Such truculence would not be unexpected from the insulin industry, who of course have a vested interest in doing the least, but why is it true that the most untenable positions are the most vigorously defended?
     Many manufacturers and vendors offer "adaptive" products for accurate non-sighted drawing and mixing of insulins.  As discussed, I am mailing to you a copy of the "Resource List of Aids and Appliances", and a Voice of the Diabetic, both published by the Diabetics Division of the National Federation of the Blind.
     Your response would be appreciated.

Most Sincerely,

Ed Bryant, President
Diabetics Division
National Federation of the Blind
      
     On July 13, I received the following document. (The writer is Mr. Short's superior officer):
Department of Health and Human Services
Public Health Service
Food and Drug Administration
Rockville MD

July 11, 1994

Mr. Ed Bryant
President, Diabetics Division
National Federation of the Blind
Columbia, MO

Dear Mr. Bryant.
     This is in response to your letter of June 6, 1994, addressed to Dr. David Kessler, regarding your concern that the interests of the blind have not been considered in insulin labeling and bottle design in order to facilitate identification by blind people.  Because this division handles issues relating to insulins, your letter has been forwarded to us for reply. 
     During telephone conversations on June 21 and 22, 1994, between yourself and Mr. John Short of this Division, Mr. Short explained to you the efforts of the FDA to make insulin packaging more uniform and distinctive.  Mr. Short described our plan to publish in the Federal Register a Notice of Proposed Rulemaking which would suggest:
1) colors for specific dosage forms of all insulins (animal and human) and 2) the use of distinctive symbols to identify the source of the insulin, i.e., small silhouettes of a pig, cow, pig/cow, or human for pork, beef, pork/beef, and rDNA/semi-synthetic sources, respectively. He also said that publication of such a document would allow all interested parties to be part of the rulemaking procedure by expressing their special interests, and then the FDA would evaluate all the comments and respond to them in aggregate and come to a final conclusion as to container label and carton format.
     During your conversation with Mr. Short, you indicated that you were pleased with our initiative, but none of the changes to be proposed in the rulemaking procedure would help blind persons readily distinguish between their fast, intermediate- and slow-acting insulins.   You suggested that he look into some of your recommendations for accommodating the blind diabetic in your previous communications to Dr. David Kessler and Mr. Howard Spungen at FDA. Mr. Short promised that we would look into them to see if any might be included in the proposed rulemaking.  Subsequent to your conversations with Mr. Short and in response to your letter dated June 22, 1994, we have decided to hold meetings with interested organizations, including the National Federation of the Blind, and the insulin manufacturers to determine what can be done to assist blind diabetics.  We hope the resulting recommendations in this regard can be included in the proposed rulemaking. 
     As for the international meeting you refer to in your letter, FDA was not involved in the development of that meeting.  It was organized by the International Diabetes Federation as a satellite meeting on June 11, l994, during the American Diabetes Association annual meeting in New Orleans.  FDA learned indirectly that color coding of insulins would be discussed at the satellite meeting and offered to present (and was accepted) the proposed scheme conveyed to you by Mr. Short.  Please contact the International Diabetes Association for further information concerning that meeting.
    
Thank you for your interest in this very important subject.

Sincerely Yours

Solomon Sobel, MD
Director
Division of Metabolism and
Endocrine Drug Studies (HFD-510)
Center for Drug Evaluation and Research

     Not long after, I received this much appreciated letter of support: 
American Diabetes Association, Missouri Affiliate
Columbia MO
July 27, 1994

Dr. David A Kessler
Commissioner
Food and Drug Administration
Rockville, MD

Dear Dr. Kessler:

     The Missouri Affiliate of the American Diabetes Association would strongly urge your support and consideration for proposals made by the National Federation of the Blind to work with your organization and insulin manufacturers concerning packaging of insulin.  The Missouri Affiliate shares the concern of the Diabetics Division of the National Federation of the Blind. 
  There has been little progress in this area, and consumers have not been part of the solution process.  The ten year long Diabetes Control and Complications Trial (DCCT) proved that metabolic control matters.  It is clear that the problem of insulin vial misidentification by blind and visually impaired people with diabetes deserves serious attention and positive action.  We would appreciate your immediate attention to this matter. 

Sincerely,

Sanford J. Spitzer, Chairman
Robert A. Sweet, MD, President
Harold D. Samorian, Jr., Executive Director
cc:  Ed Bryant, President
      Diabetics Division, National Federation of the Blind
     John H. Graham, IV, Chief Executive Officer
     American Diabetes Association
     Larry Ellingson, Executive Director
     Global Diabetes Care Planning
     Eli Lilly and Company

     The above letters represent at least a partial victory for the National Federation of the Blind and for blind diabetics everywhere.  A Federal bureaucrat had decided that the interests of the blind were unworthy of consideration, and, after pressure from our Diabetics Division, he was overruled.   Members of a major medical association placed themselves on record as supporting our position. 

     We will go to the meeting Dr. Sobel describes.  There we will make our case for tactile markings on insulin vials.  We will remind the industry and the bureaucrats that thousands of blind diabetics have been successfully self-managing for a long, long time.   When there are further developments, they will appear in Voice of the Diabetic.■   

[Photo/Caption: Ed Bryant]

SCHLERAL SHELLS

From the Editor:  In Voice, Vol. 6, No. 4, Certified Ocularist John Hadlock explained the process of making a scleral shell.  This article is adapted from his earlier text. 
 
    As a consequence of sight loss, my eyeballs shrank, making it impossible for me to open my eyelids.  Because people in social situations are more at ease talking with someone whose eyes are open, head up, looking directly at the speaker, I find the shells helpful.  Scleral shells make the eye appear almost normal, a benefit to anyone who recognizes the importance of "direct eye contact" in work or social situations, where it has come to symbolize "paying attention."  Thus they help foster positive attitudes both for and about persons who are blind.     Not everyone can use scleral shells.  Some individuals are irritated by the prostheses, others' shape requirements cannot be accommodated.  Where the old "stock shells" (a few set shapes, and you go with the one closest) looked false and fitted poorly, today's custom-fitted prostheses can fool the sighted.  Prices for custom-made scleral shells run from approximately $900 to $1700 apiece, and the shells can last for decades. 
     I obtained my first set of scleral shells about fifteen years ago. Recently, when changes in my face caused my eyelids to close again, I obtained a new, freshly-fitted pair.  Unfortunately, some insurance companies will not reimburse the cost of scleral shells, considering them "cosmetic."
     Many people who have lost sight in one or both eyes, and whose eyes (one or both) have thus become abnormal-appearing, have found piece of mind with scleral shells.  Our prostheses are custom made for each individual, not the "stock eyes" of past generations.
     In the late 1940s, advances in plastics revolutionized the field of ocular prosthetics. By use of the "modified impression method," ocularists are able to design and fabricate prostheses that look and fit like natural, living eyes.
     Every client has individual needs and preferences.  A good ocularist offers several types of ocular prostheses.  For those who have lost an entire eye (globe), there is a prosthesis that fits comfortably to the shape of the socket.  For those whose globes are intact, we custom make a scleral shell prosthesis, a thin ocular prosthesis that fits entirely over the patient's own globe.  In addition to presenting the appearance of a natural eye, the scleral shell serves to hold the eyelids open.
           Before beginning the process of making a scleral shell, we thoroughly examine the eye to make sure it is free of infection, and is ready to be fitted.  Meticulous attention is given to the manner in which each prosthesis fits.  First, an impression of the eye and surrounding area is taken, using alginate, a material prepared from a type of seaweed.  In about 45 seconds the alginate stiffens to the consistency of hardboiled egg whites.  After removal from over the globe, the impression is invested--that is, a two-piece mold is made with dental stone, a material much like plaster of Paris.  After the dental stone has hardened and the impression is removed, molten wax is poured into the mold and allowed to cool and harden.  Upon removal from the mold, this wax piece constitutes a pattern, a "master," from which the scleral shell will be fitted to the globe.  At this stage, the shape can easily be changed to improve the appearance and comfort for the wearer.  Often, the scleral shell is so thin that the pattern must have a base of Plexiglas, with wax then added as needed to achieve a proper fit.
     During the fitting of the prosthesis, we attempt to provide the proper direction of gaze, proper vertical and horizontal iris positions, the desired prominence to the artificial eye, and the proper eyelid opening (palpebral fissure).  This part of the fitting procedure usually takes about three to five hours.
      The finished wax pattern is then invested again, creating a new mold in which the actual shell, of white acrylic, is processed under heat and pressure.
          To present the appearance of living tissue, the actual coloring of the prosthetic eye is done with the greatest care.  The goal is to duplicate the appearance of healthy eyes.  "Veins" (fine fibers of red cotton thread) are painstakingly placed on the surface of the prosthesis in such a manner as to duplicate living veining patterns. The entire painting process usually takes three or four hours.
     In all, the patient is with us for several hours over a period of two days, and returns a third day to pick up the finished prosthesis and to learn the proper method of caring for it.
     I have provided scleral shell prostheses for many diabetic patients.  They indicate that their prostheses make a definite difference in their lives.  They feel better about their appearance, and find that they can more easily converse with others, knowing that their eyes appear basically normal. ■

[Photo/Caption: Mildred (Barry) Friedman]

DIABETIC DIRECTIONS

by Mildred (Barry) Friedman

For a long time I've been mentioning the DCCT.  Results have just been released, "Oh Great!"  You say, "But what are you talking about?"
DCCT stands for Diabetes Control and Complications Trial, a huge experiment designed to show conclusively that high blood sugar is the cause of major complications of diabetes -- retinopathy or eye disease, nephropathy or kidney disease, and neuropathy or nerve disease.  Over 1300 type I (insulin-dependent) diabetics who attended 29 healthcare centers in American and Canada, took part.  The organizers felt that after 10 years, enough data had been collected to stop the experiment one year early so that all diabetics could benefit from the findings.
Half of the participating patients cared for their disease in their old-fashioned way. That is, they took insulin once or twice a day and measured blood sugar once a day. The other half, the experimental house, tried for tight control of their blood sugar levels by either taking insulin three or more times a day, or by using an insulin pump which administers a constant flow of insulin and dispenses larger amounts at meal times or when needed.  This group tested blood sugar levels a minimum of four times a day. The goal of tight controls to keep blood sugar levels between 80 and 140 mg/dl except for a period of time after meals when the food is being digested.
With tight control, retinopathy was reduced or slowed in 70% of patients -- only 50% were referred to an eye surgeon for treatment and treated. Neuropathy showed a 60% decrease. There is however, a side effect. People trying for tight control are three times more likely (than those with the usual control) to have hypoglycemia -- that's low blood sugar and can be quite dangerous. They also may experience periods of unconsciousness, probably due to very low blood glucose.
Those are the facts. What follows are my opinions. I speak only for myself. Please remember, I am a type I diabetic.
My intention is not to pooh-pooh an important study. Results of the DCCT certainly show that good blood sugar control is a significant factor in reducing the number of type I diabetics who will suffer the major and costly complications of their disease. The purpose is to look at the findings without rose-colored glasses.
Note should be taken that a cross-section of patients with insulin dependent diabetes was not used. Patients whose blood glucose was difficult to control were not included.  I will accept the decision to not incorporate noncompliant patients because they would not follow instructions, making data from them unreliable.
Reported results certainly point to the conclusion that high blood sugar is implicated as a significant factor in causing the three complications (eye, kidney, and nerve disease) which are thought to be caused by pathology of minor blood vessels. A large shadow of doubt spreads itself over the figure.  Still significant are the 30, 40, and 50% of diabetics who will have these complications. That's a lot of people. 
Complications are expensive: dialysis or kidney transplants cost thousands of dollars. But tight control isn't cheap either. Look only at the price for monitoring blood sugar. Each strip is about 50 cents.  When the test is done for times a day the total is two dollars. Unmentioned is the tab for insulin, needles, alcohol swabs, and lancet.  There is also a cost and time in interference with the activities of daily life. As I sit and write at my computer, I am always aware that I must stop, not necessarily in a good point in my work, but when the clock tells me to do a blood sugar.
O. K. Money isn't the only important factor. Can the goal be realized? Can the diabetics maintain euglycemia (normal blood sugar levels)? I can't and I'm a fairly compliant patient. When I'd have three or four days of good control I walk around smiling. I've done it. But then there are the times when I'm way low or way high with no explanation that I can find. That's the nature of the disease. If it were possible to predict what the blood sugar level is, I wouldn't have to test for it.  Diabetes is not a logical disease.
Now let me get to the reason why the DCCT results are the subject of this column.
The Lancet, a distinguished British medical Journal, reported the study and its May 22, 1993 edition. The New York Times published an article interpreting it on May 23, 1993. One of the people they correctly interviewed was Dr. J. Schuyler, a well-known authority in the field and past president of the American Diabetes Association. His credentials are impeccable.  Noting the increase in hypoglycemic episodes, even to loss of consciousness, he asserts that patients would choose these to impaired vision, and end-stage renal disease, and the pain and daily discomforts of neuropathy.
Dr. Schuyler has probably never been unconscious on the floor for 12 hours. I have. I've also had a kidney transplant, vision loss (no--I'm not blind but there are big problems), and the neuropathy keeps me in pain a good percentage of the time and seriously affects my digestive tract.  That episode on the floor still scares me silly. Not only were 12 hours lost to me, but days afterwards when I wasn't functioning. The trip to the hospital doesn't exist in my memory. The people who came to rescue me have told me they did, but you sure can't prove it by my recollections. They don't exist. Result: when I think there is a possibility of "going out" again I eat a lot, making good blood sugar control impossible. I also choose to try for blood sugar values not in recommended 80 -140 mg/dl range but a 150-180 mg/dl spread.
Which would I choose -- complications or extreme hypoglycemia?  Hard decision. Selecting the better of the two "bads" is difficult.  At this point in I would select the possibility of complications. Others may, and should, choose the right path for themselves. Tight control is obviously good and certainly, if the diabetic selects a path aiming at less than perfect control, the outcome will be more beneficial than no control.
I wonder, if tight control were begun when the diagnosis of diabetes is made, or even before, when appropriate circulating antibody levels indicate a strong possibility of developing symptomatic diabetes and blood sugar amounts become higher than normal -- I wonder if the rate of reduction of complications might not approach 100%?  If the cause of minor vessel complications is high blood sugar, type II (Non-Insulin Dependent Diabetes Mellitus) must also be brought under good control. Extending my argument for early good control, the problem of knowing when type II diabetes begins (not to be 7-12 years before diagnosis) arises.  Frequent screening of populations believed liable to become diabetic -- Native Americans, Hispanics, etc. -- should find type II's at the start of their disease and maybe avoid these complications which they share with type I's
I wish the findings of the DCCT were more conclusive--90% chance of no complications --but they aren't, and diabetics must live with what the numbers really are.

 © 1993 Mildred Friedman ■

NUTRITIONAL APPROACHES TO MANAGING IDDM IN CHILDREN

by Vivien Morris, M.S., R.D. Pediatric Dietitian, Boston City Hospital

Children first experience food in a very nurturing environment. Parents lovingly provide foods to infants in anticipation of their child's appropriate growth.  They also introduce foods in accordance with the social and cultural life of the family.  The diagnosis of diabetes (and resulting need to modify the child's dietary habits and lifestyle) is therefore stressful.  However, most of the dietary modifications recommended to patients with diabetes are the same components of a healthy diet appropriate for all members of the family:  consume enough calories to support appropriate growth, eat regular meals with healthy snacks between meals, decrease fat, increase complex carbohydrates (including fiber-rich foods), decrease excess protein, and avoid high sugar/empty calorie foods.
   
How Much Food Is Enough?
     Compared to adults, children need to eat much more food per pound of body weight.  Children are both growing and expending large amounts of energy in active play.  An appropriate diabetic diet for a child should not cause the child to complain of hunger, or of being "stuffed".  The starting point for determining the appropriate calorie level would be the recommended daily allowances.  (See table) Determination of the typical caloric intake of the child, using 24 hour recalls and food intake records as well as weight history, should be used to modify the calorie goals.

Timing Meals
     Generally, children require mixed insulin injections (intermediate and fast acting) two times per day.  The fast acting insulin begins to work in 30 minutes and peaks in two to four hours; the intermediate starts to work in one to two hours and peaks at six to ten hours.  Thus, typically breakfast is eaten 30 minutes after the morning injection; a snack is eaten about three hours later; lunch is eaten at mid-day; a snack is eaten in mid-afternoon; dinner is eaten in late afternoon (30 minutes after the second insulin injection); and a snack is consumed at bedtime.
     Keeping small children on a tight meal schedule is rarely easy, and the problem becomes increasingly difficult as children reach adolescence.  However, failing to synchronize meals and snacks with the peaks of insulin activity can lead to hypoglycemia.  Hypoglycemic episodes can be mild to severe, with symptoms ranging from weakness, shakiness and increased hunger to coma and convulsions.  Long term side effects of poor glucose control include: heart disease, pyelonephrosis (Editor's Note:  End Stage Renal Disease), neurological damage, and blindness.
    
Snacks
     All children need snacks.  The stomachs of children are too small to hold adequate quantities of food on just two to three meals per day.  Children with diabetes must have snacks timed for their insulin action, or they will face hypoglycemic episodes.  So the question for all parents is, "what constitutes a good snack?"  A typical snack might include a serving of starchy food and a fruit (perhaps three graham squares and a small (apple), or a protein food, two starchy foods and a fruit (such as a plain McDonald's hamburger and an orange).

Decreasing Fat
     Children with diabetes are at risk for developing heart disease later in life.  A realistic goal for children with diabetes is 30-35% of calories from fat.  Very young children less than two years old need adequate saturated fat in the diet to support the growth of nerve and brain cells.  So for children aged one year to two years old who have been weaned from breast milk and formula, use of skim milk and low fat milk is discouraged.
     For adults to decrease their risk of heart disease, it is recommended that fat in the diet be limited to 30% or less of calories, with about 10% of that being saturated fats (such as butter, meat fat, coconut oil), 10% being mono-unsaturated fat (like olive oil), and 10% being polyunsaturated fat (such as corn oil, safflower oil, or canola oil).  Cholesterol should be limited to 300mg per day. Common ways to cut down on fat in the diet are to decrease fried foods, high fat meats, dairy products made from whole milk, high fat pastries, and candies.
 
Increase Complex Carbohydrates
     Children naturally like many complex carbohydrate foods, including:  breads, rice, potatoes, pasta, cereals, fruits, peas, beans and many other vegetables.  The goal is to increase such foods in children's diets to 55% to 60% of calories.  This can be done by offering these foods throughout the day, in forms children enjoy. Fresh steamed broccoli "trees", carrot sticks, orange wedges, baked sweet potatoes, pasta topped with mozzarella cheese, popcorn (hot air popped) and zucchini bread are just a few healthy kid pleasers high in complex carbohydrates.  Fiber has been shown to lower the absorption of glucose by the body, and soluble fiber, as found in some beans and oatbran, has been shown to decrease cholesterol levels.  However, excessive fiber in a child's diet may cause feelings of fullness which interfere with eating adequate quantities of other needed foods, and may cause flatulence.  The goal for children is to offer a large selection of complex carbohydrates, including some containing fiber.

Decrease Excess Protein
     Most Americans eat too much protein.  In addition to wasting valuable natural resources, excessive protein intake can be harmful to the body. Diabetics who consume high amounts of protein are at risk of developing renal disease (diabetic nephropathy) and retinopathy. (Alternatively, recent studies have linked nephropathy and retinopathy to poor glucose control, rather than to protein metabolism.)  The good news is that for those with mild renal impairment, damage can be reversed by lowering intake of protein.  For children with diabetes, protein should provide 12% to 17% of total calories.  Protein in the diet can be decreased, with high acceptance by children, by substituting pasta or bean dishes for meats several times per week.
  
Limit High Sugar/Empty Calorie Foods
     Do "children" and "candy" go together?  Do teenagers naturally crave "junk foods"?  Children with diabetes are first of all children, subject to the same pressures from commercial media and peers that their friends face.  However, for their health's sake, they must eat a healthy diet, with limited amounts of sugary sweets and high fat foods.  Our current knowledge of how much certain foods raise blood sugar levels (the Glycemic Index of Foods) has provided new flexibility in the diets of children whose diabetes is well controlled.  Some high sugar foods like ice cream, cake, and candy may be included in the diet in small quantities, especially if included in a mixed meal or if consumed before extra physical activity.  After eating sweets, it is a good idea to monitor blood glucose, to evaluate the effects of sugar consumption.
     The craving for sugar can be answered safely by use of alternative sweeteners in moderate amounts.  Fructose, fruit sugar, is absorbed more slowly than is table sugar (sucrose) and may not significantly raise blood sugar levels in children with well-controlled diabetes.  Commonly used non-nutritive sweeteners include sorbitol, aspartame (marketed as NutraSweet and Equal), saccharin and acesulfame potassium (marketed as Sunnette and Sweet-One).
 
Make Eating Fun
     Despite the limitations on diet just described, children will eat a good diet if it tastes good, is presented with enthusiasm, and if the foods fit into their family and community social life.  Hundreds of varieties of fresh fruits and vegetables can easily be prepared and presented.   Many familiar grain-based and starchy foods can continue to be offered, with the recipes modified as needed to decrease fat and sugar.  The same is true for the other food groups.  Families should contact nutritionists and dietitians for assistance with meal plans, recipe modifications, or any childhood feeding issue.  Families and professionals, working together, can help make eating fun for the child with diabetes.
 (Source:  Recommended Dietary Allowances, 10th edition, 1989, National Academy of Sciences.)
                    
References
J.E. Connell & D. Thomas-Doberson.  "Nutritional Management of
Children and Adolescents with Insulin-Dependent Diabetes Mellitus: A
Review by the Diabetes Care and Education Practice Group".  JADA 1991
91(12): 1556-1563.

P. Chase et al.  "Glucose Control and Retinal and Renal
Complications of Insulin Dependent Diabetes".  JAMA  1989  261:1155.

L. Ling and J. Mosiman.  "Diabetes" in Handbook of Pediatric
Nutrition.  Edited by P. Queen and C. Lang.  Aspen Publishers,
Gaithersburg, MD  1993. ■

[Photo/Caption: Kenneth Jernigan]

 

THE NATURE OF INDEPENDENCE

by Kenneth Jernigan

From the Editor: Dr. Kenneth Jernigan, President Emeritus of the National Federation of the Blind, delivered the following address at the Annual Convention of the National Federation of the Blind in Dallas, Texas, on Tuesday, July 6, 1993.  Dr. Jernigan’s address provides excellent information on a potentially difficult subject.  This presentation first appeared in the September-October 1993 issue of the Braille Monitor, published by the National Federation of the Blind.
Shortly after last year's convention, I received a number of letters from students at the Louisiana Center for the Blind. It was clear that the letters were written as the result of discussions held at the Center and that, although the apparent topic was independent mobility, the real issue was independence in general, and how blind persons should live and behave. I want to share those letters with you, then tell you how I answered them, and finally say a few things about what I think independence really is. The letters are all dated July 23, 1992. Here is a composite of them:
Dear Dr. Jernigan:
I am a sophomore in high school. Right now, I am in a teenage program that the Louisiana Center for the Blind is sponsoring. It is the STEP program. That means Summer Training and Employment Project. We are allowed to get jobs and make money as well as have classes.
A few weeks ago I attended the national convention. I really enjoyed all your speeches and everything. People noticed that you and Mr. Maurer walked sighted guide sometimes, [I interrupt to call your attention to the almost code-word use of the term "sighted guide." Not "walking with a sighted guide" or "walking with a sighted person" or "holding the arm of a sighted person," but "walking sighted guide." This makes it clear that the concept of "sighted guide" has been the topic of considerable conversation. But back to the letter.] and we thought you all would never walk sighted guide, because you all are so highly involved in the NFB. I never thought sighted guide was OK until then. So why did you all use sighted guide? I know there are many reasons why this might be. We discussed this in one of our talk times and came up with one reason this might be. We know that you all have to be at meetings all the time, and it would be faster if you would use sighted guide. [I interrupt again to call your attention to the use in the following sentences of the depersonalized "it." Now, back to the letter.] I am sure you don't use it so much that you lose your cane travel skills. I am not trying to say this is wrong. I was just wondering why you do this. Someone brought up that if we, as the people being trained at the moment, were caught using sighted guide, they would fuss at us. And I realize that you are not the one in training, so it is not wrong. We couldn't use sighted guide, because we might want to use it more than the cane if we use too much of it.
Yours truly,
____________________
Dear Dr. Jernigan:
During this past convention in North Carolina some of us noticed that you did not walk with a cane. I do not understand this at all. I can understand that you have to be in many places in a short amount of time at the conventions, and that might be the reason you went sighted guide. But I also know that when you came for a tour of the Center, you also went sighted guide. We do not understand this.
We all have our own theories as to why you went sighted guide, but we want to get the correct answer straight from the horse's mouth.
Your fellow Federationist,
____________________
That's a very clear-cut letter, and I am pleased to be called that end of the horse. Here is the last one:
Dear Dr. Jernigan:
This year I came to Charlotte to attend my third national convention of the NFB. I am currently a student at the Louisiana Center for the Blind in the STEP program for blind teenagers. This program stresses cane use, Braille literacy, employment readiness, and self-confidence based on achievement. While at the convention I heard from a friend that you were never actually seen using your cane. I discussed this with a group of friends, and it was decided that you most likely had many places to go and had to get to them quickly. This made sense, and the question seemed settled. Then one of the groups remembered you using sighted guide during a tour you took of the Center while passing through Ruston on the way to the Dallas convention in 1990. This was such a hectic situation, and the question was no longer settled because the only alternative travel technique anyone noticed you using was sighted guide.
I do not mean this letter to imply any disrespect towards you, the Federation, or its many achievements. If the Federation had not pushed so hard for independence for the blind, I would have no grounds on which to write this letter. It is because of my own personal convictions about independence that I ask why the figurehead of the NFB is not himself using the alternative techniques that his student, Joanne Wilson, has been teaching for nearly ten years in Ruston.
I would prefer to end the letter on a positive note. I realize that you are responsible for the training I am currently receiving, and I am grateful for it. I am not implying that you have no cane skills, because I do not honestly know.
Sincerely,
____________________
These are straightforward letters, seriously written. They raise fundamental questions, questions that deserve a reasoned answer. Here is the expanded substance of what I wrote:
Baltimore, Maryland
July 29, 1992
Under date of July 23, 1992, the three of you wrote to ask me why I didn't travel alone with a cane during the national convention in Charlotte and why on a visit to the Louisiana Center in 1990 I took a sighted person's arm instead of walking alone with a cane. I appreciate your letters and will tell you why I do what I do.
In the first place let us assume that I didn't have any cane travel skills at all. This might be comparable to the situation of a parent who had no education but dreamed of an education for his or her child. That parent might preach the value of education and might work to send the child to high school and then to college. The parent might, though personally uneducated, feel tremendous satisfaction at the learning and accomplishment which his or her effort had made possible. In such circumstances what attitude should the child have toward the parent? The child might be critical of the parent for his or her poor grammar and lack of education and might even be ashamed to associate with the parent--or the child might feel gratitude for the sacrifice and the work that had made the education possible.
This is not an apt analogy since I have perfectly good cane skills, but it has elements of truth about it. When I was a child, there were no orientation centers or mobility training. The only canes available were the short heavy wooden type, and we youngsters associated carrying a cane with begging, shuffling along, and being helpless.
It was not until I finished college and had taught for four years in Tennessee that I first carried a cane. It was made of wood and had a crook handle. I might also say that it was longer than most of those in vogue at the time, forty inches. I started using it in 1953, just before going to California to work at the newly established state orientation center for the blind. The Center had been in operation for only a few months and had enrolled only four or five students by the time of my arrival.
In those days the California Center was using 42- inch aluminum canes. They were a tremendous improvement over the 40-inch wooden cane I had been carrying, and I immediately adopted the new model. Even so, it seemed that something better was needed. I worked with the person who had been employed as the travel teacher, and we experimented with different techniques and canes.
In the mid-1950's the solid fiberglass cane was developed. It was first made by a blind man in Kansas, but we at the California center popularized it and brought it into general use. We also worked to improve the tip. Our students received intensive training, those with any sight using blindfolds (or, as we called them, sleep shades), and our students and graduates were identifiable in any group of blind persons because of their competence and ease in travel. Since they had enjoyed the benefit of our study and experimentation, as well as intensive instruction and the time to practice, many of them probably became better travelers than I--and I felt pride and satisfaction in the fact. We were advancing on the road to freedom and independence.
In 1958 I went to Iowa as director of the state commission for the blind, and I carried with me the experience and knowledge I had acquired in California plus a 48-inch fiberglass cane and a head full of new ideas and hopes for the future. I hired a young sighted man who had no experience at all with blindness and spent several days giving him preliminary instruction in mobility, using blind techniques. First I had him follow me all over Des Moines, watching me use the cane while crossing streets and going to various places. Then, he put on sleep shades, and I worked with him to learn basic skills. Next I sent him to California for three or four weeks to gain further experience and to compare what I had taught him with what the California Center was doing. Finally he came back to Des Moines, and I spent several more weeks working with him until (though sighted) he could (under blindfold) go anywhere he wanted safely and comfortably using a cane.
During all of that time I worked with him on attitudes, for unless one believes that he or she is capable of independence as a blind person, independence in travel (as in other areas) is not truly achievable. This travel instructor's name is Jim Witte, and he developed into one of the best I have ever known.
Iowa students rapidly became the envy of the nation. You could single them out in any group because of their bearing, their confidence, and their skill in travel. As had been the case in California, some of them undoubtedly traveled better than I, and I felt a deep sense of fulfillment in the fact. Joanne Wilson (the director of your own Louisiana Center) was one of those students, and I am sure she has told you how it was at the Iowa Center--how students were treated, what was expected of them, the relationship between staff and students, our dreams for the future, and how we set about accomplishing those dreams. Arlene Hill (one of your teachers) was also an Iowa student. Both Joanne and Arlene are living examples of what we taught and how it worked. So are President Maurer, Mrs. Maurer, Peggy Pinder, Ramona Walhof, Jim Gashel, Jim Omvig, and at least fifty others in this audience.
It was in Iowa that we developed the hollow fiberglass cane. It was an improvement over the solid cane, lighter and more flexible. We also gradually began to use longer and longer canes. They enabled us to walk faster without diminishing either safety or grace. As I have already told you, I started with a 40- inch wooden cane. Then I went to 42-inch aluminum--and after that to solid fiberglass, then to hollow fiberglass, and (three or four years ago) to hollow carbon fiber. As to length, I went from 40 inches to 42, then to 45, 48, 49, 51, 53, 55, and 57. At present I use a 59-inch cane. It seems about right to me for my height and speed of travel. Will I ever use a still longer cane? I don't know--but at this stage I don't think so. Obviously there comes a time when a longer cane is a disadvantage instead of a help.
I've told you all of this so that you may understand something of my background and approach to independence in travel and independence in general. The doctors who established the medical schools a hundred years ago were (with notable exceptions) not generally as competent and skilled as the doctors they trained, for they did not have the benefit of the kind of concentrated teaching they themselves were providing. Obviously they could not stand on their own shoulders. Through their students they extended their dreams into the future, building possibilities that they themselves had not known and could never hope to realize.
So it is with me in relation to you. You are the third generation of our mobility trainees, having the benefit of what I have learned and also of what Joanne and the other Iowa graduates have learned. Unless you make advances over what we have done, you will, in a very real sense, fail to keep faith with those who have gone before you and those who will follow. In this context I would expect and hope that some of you will become better travelers (and, perhaps, better philosophers and teachers) than I, and if you do, I will take joy in it.
Having said all of this, let me come back to my own travel skills. During the 1950's I traveled completely alone on a constant basis throughout this entire country, going to almost every state and dealing with almost every kind of environment--urban area, city bus, taxi, complicated street crossing, rural setting, hired private car, country road, and almost anything else you can imagine. During late December and early January of 1956 and 1957, for example, I traveled alone to fourteen states in eleven days, writing testimony for the NFB's Right to Organize bill. It was no big deal, and not something I thought about very much. It was simply a job that had to be done, and the travel was incidental and taken for granted. I have taught travel instructors and have developed new techniques and canes. I travel whenever and wherever I want to go in the most convenient way to get there--and sometimes that means alone, using a cane.
Once when I was in Iowa, students observed that I walked to a barber shop one day with another staff member, and they raised with me some of the same questions you have raised. That afternoon in our business class (you may call it by some other name-- philosophy or something else) I dealt with the matter. I told the students some of the things I have told you, and then I went on to say something like this:
"Although what I have told you should mean that even if I couldn't travel with much skill at all I might still not merit your criticism, we don't need to leave it at that. Follow me. We are going to take a walk through downtown traffic--and see that you keep up."
I took the lead, and we walked for eight or ten blocks at a fast clip. When we got back to the classroom, I didn't need to tell them what kind of travel skills I had. They knew.
Then, we talked about why I had walked to the barber shop with another staff member. In that particular instance I had matters to discuss, and I felt I couldn't afford the luxury of doing nothing while going for a haircut. As a matter of fact, in those days I often made a practice of taking my secretary with me to the barber shop and dictating letters while getting my hair cut. Of course, I could have made a point of walking alone each time just to make a visible demonstration of my independence, but somehow I think that such insecurity might have made the opposite point and would certainly have been counterproductive.
In the Iowa days I was not only director of the state Commission for the Blind but also first vice president and then president of the National Federation of the Blind. Both were full-time jobs, requiring me to use to best advantage every waking minute.
I was up before 6:00 to go to the gym with the men students; I wrote over a hundred letters a week; I entertained legislators and other civic leaders an average of two or three nights a week to gain support for our program; I traveled throughout the state to make speeches; and I spent long hours working individually with students. Besides that, I handled the administrative details of the Commission and the NFB on a daily basis. At the same time I was doing organizing in other states and dealing with problems brought to me by Federationists throughout the country.
In that context it would have been a bad use of my time (and both Federationists and Iowa students and staff would have thought so) for me to spend much of my day walking down the street to make a visible show of my independent travel skills. I traveled alone when I needed to, and I gave demonstrations to students, legislators, and others when I needed to do that--but I never did either to convince myself or to establish in my own mind the fact of my capacity or independence. It didn't seem necessary.
So what about the NFB convention in Charlotte? I was in charge of convention organization and arrangements, and there were a thousand details to handle. There were four hotels and a convention center, each with its own staff and each requiring separate handling and a myriad of decisions. Sometimes I had not only one but two or three people with me as I went from place to place, talking about what had to be done and sending this person here and that person yonder.
Even so, I might (you may say) have refused to take the arm of one of the persons with me and used my cane to walk alone. But for what reason? When a blind person is walking through a crowd or down a street with somebody else and trying to carry on a meaningful conversation, it is easier to take the other person's arm. This is true even if you are the best traveler in the world and even if both of you are blind.
In fact, I contend that there are times when refusing to take an arm that is offered may constitute the very opposite of independence. If, for instance, you are a blind person accompanying a sighted person through a busy restaurant closely packed with tables and chairs, do you create a better image of independence by trying to get through the maze alone, with the sighted person going in front and constantly calling back, "This way! This way!" or by simply taking the sighted person's arm and going to the table? What is better about following a voice than following an arm? From what I have said, I presume it is clear which method I favor. Of course, if no arm is conveniently available, you should be prepared to use another method, regardless of how crowded the restaurant or how labyrinthine the path. In either case you should do it without losing your cool. But I'll tell you what alternative is not acceptable in such circumstance-- pretending that you don't want anything to eat and not going at all. That's not acceptable.
But back to the convention. When you are trying to get through crowds quickly to go from meeting to meeting, and possibly also trying to find different people in those crowds in a hurry, the efficiency of sighted assistance multiplies. Incidentally, even if I were sighted and doing the things I do at national conventions, I would want two or three persons with me--to look for people in crowds, to send for this and that, and to talk and advise with.
As an example, consider what happened at last year's convention with respect to Secretary of Education Lamar Alexander. He has normal eyesight and is in every other way, so far as I know, able-bodied and energetic. I am sure that he can drive a car and walk vigorously. Yet, he sent an assistant to Charlotte a day in advance of his arrival. The assistant scouted out the convention and then went to the airport to meet the Secretary. The assistant drove the car from the airport to the convention, accompanied the Secretary into the meeting hall, went with him to the platform, met him at the edge of the platform when he finished speaking, and drove him back to the airport. If the Secretary had been blind, I wonder if somebody would have said, "Just look! He's not independent. He has to have a sighted person with him at all times, accompanying him everywhere he goes and driving his car."
Since I am not a student trying to learn to travel independently or to establish within my own mind that I can compete on terms of equality with others, and since I can and do travel by myself when that is most convenient, I feel no particular obligation to make a demonstration when it is more efficient to do otherwise. If I were a student, I should and would behave differently. As an example, I think a student should always use a rigid (not a collapsible) cane. But I generally use one that is collapsible. Why? Students often are uncomfortable with canes, and if they are allowed to use those that fold or telescope, they may tend to hide or conceal them because they think (even if subconsciously) that it will make them look less conspicuous. I have carried a cane for so long that I would feel naked without it, and I always carry one whether I am with somebody or not. Because they were so rickety, I refused to carry a collapsible cane until we developed the telescoping carbon fiber model. I pull it to such a tight fit that it doesn't collapse as I use it, and I almost never collapse it unless I'm in close quarters. Again, it is a convenience, and my sense of independence is not so brittle that I think I have to carry the rigid cane to prove to myself or others that I am not ashamed to be seen with it or uncomfortable about blindness.
When I was teaching orientation classes in California and Iowa, I often said to those in attendance that students at a center tend to go through three stages: fear and insecurity, rebellious independence, and normal independence--FI, RI, and NI. During fear and insecurity one tends to be ultracautious and afraid of everything, even if at times putting on a good front. During rebellious independence one tends to be overly touchy, resenting anybody who attempts to offer him or her any kind of assistance at all, even when the assistance is appropriate and needed. In the rebellious independence stage one is likely to be a pain in the neck, both to himself or herself and others--but this is a necessary step on the road from fear and insecurity to normal independence. Unfortunately some people never get beyond it.
Hopefully one will eventually arrive at the stage of normal independence, with relatively little need constantly to prove either to oneself or others that one is capable of independence and first-class citizenship. This means maturity in dealing with condescending treatment and it also means flexibility in accepting or rejecting offers of assistance, kindness, or generosity. Sometimes such things should be graciously or silently taken, sometimes endured, and sometimes rejected out of hand--but the reason should never be because you doubt your own worth, have inner feelings of insecurity, or wonder whether you are inferior because of blindness.
Normal independence also means not rationalizing your fear or inability by saying that you are just doing what is convenient and efficient and that you don't feel the need to prove something when in reality you are just covering up the fact that you are as helpless as a baby--and it means not going so far the other way and being so touchy about your so-called independence that nobody can stand to be around you. It means getting to the place where you are comfortable enough with yourself and secure enough with your own inner feelings that you don't have to spend much time bothering about the matter one way or another. It means reducing blindness to the level of a mere inconvenience and making it just one more of your everyday characteristics--a characteristic with which you must deal just as you do with how strong you are, how old you are, how smart you are, how personable you are, and how much money you have. These are the goals, and probably none of us ever achieves all of them all of the time. Nevertheless, we are making tremendous progress--and we are farther along the road now than we have ever been.
I am pleased that you wrote me, and I am especially pleased that you are able to receive training at the Louisiana Center. It is grounded in Federation philosophy, and it is one of the best. You are getting the chance while you are young to learn what blindness is really like, and what it isn't like. You have the opportunity to profit from the collective experience of all of us--the things we tried that didn't work, and those that did. On the foundation of love and organizational structure which we have established, you can make for yourselves better opportunities than we have ever known--and I pray that you will. The future is in the hands of your generation, and I hope you will dream and work and build wisely and well.
Sincerely,
Kenneth Jernigan
____________________
That is what I wrote, and there have been a number of subsequent developments. One person, hearing these letters, said, "I can see your point, but don't you think you should try to be a role model?"
To which I replied, "I thought that was what I was doing." Then, there was the letter I got about a month ago from a person who attended a seminar at the National Center for the Blind last Christmas. She said in part:
The discussion about the letter from the students at the Louisiana Center for the Blind has stuck with me and helped me in two ways. I no longer feel the deep embarrassment I had been experiencing about being unable to read Braille and having less-than-perfect travel skills. I remain painfully aware that I could be much more efficient than I am, particularly if I could read and write Braille, but I no longer feel that I am less worthy because of the lack. And, by the way, I hope to take care of my deficiencies in that area soon.
The discussion also helped me better to appreciate and respect my dad, who was blinded by an on-the-job accident when he was 26. After he became blind, he went to law school, and I have always admired his relatively quick adjustment to blindness. On the other hand, I have always felt somewhat embarrassed that when traveling he uses a sighted guide the majority of the time. (For instance, I was horrified and disbelieving when I heard my dad flew to Alaska by himself to go fishing without his guide dog or a white cane!) He has a guide dog but only used him when he was going to work. I have never seen him use a white cane although I have just learned that he used one while in his office at work. However, the seminar discussion helped me to understand that everyone's situation differs and that the opportunities available are not uniform. My dad has accomplished a lot: He was an administrative law judge until he retired last month; he is an avid fisherman; and he is as pro-Braille as anybody I have ever met.
That is what the seminarian wrote me, and her letter makes a point. It is simply this: We absolutely must not become so rigid and dogmatic about the means and precise details of achieving independence that we make ourselves and everybody else around us miserable. Down that road lies bigotry, as well as the loss of any real independence or true normality.
Usually when I go to bed at night, I read myself to sleep with a recorded book. A few months ago somebody took me to task for this. The person said something to this effect: "You should not read recorded books. You should use Braille. After all, the Federation advocates Braille literacy, and if you use tapes and talking books, you decrease the circulation of Braille from the libraries, and you also set a bad example. What kind of statement are you making? What kind of image are you creating? You have an obligation to serve as a role model."
I didn't argue with the person. It wouldn't have done any good. Yes, I use Braille; and as you know, I find it helpful. More than that. My life would be poorer without it. But Braille is a means. It is a vehicle, not an article of faith. I am conscious of the fact that I have an obligation to be a role model, and I do the best I can to meet the requirement. But the kind of role model I want to be (for anybody who cares to see me that way) is that of a competent, well-balanced human being, not a caricature. The fact that I don't want to die of thirst doesn't mean that I want to drown.
What is independence? I would define it this way. With respect to reading, it means getting the information you want with a minimum amount of inconvenience and expense. For me that means Braille, but it also means using live readers, recordings, and (despite my limited competence in that area) a certain amount of work with computers. For somebody else the combination may be different, but any active blind person who lacks skill in Braille will be limited--not necessarily unable to compete but definitely limited.
As to travel, independence is the ability to go where you want when you want without inconvenience to yourself or others. Probably none of us (blind or sighted) ever fully achieves that goal all of the time--and almost all of us achieve at least some of it some of the time. Usually we are on a continuum.
If I could not travel by myself without discomfort or great expense, there are times when it would be a real problem. What about the trip I made to Kansas City in May of this year to meet with local Federationists and speak at a JOB seminar? My wife had other things to do, and it would have been inconvenient to take somebody else. I went alone. Did I have any assistance during the trip? Yes. At times--when it was convenient for me and not inconvenient to others.
What about the time last month when I was called for jury duty? It would have been very difficult for a guide to have accompanied me to the jury box or the jury room--so, of course, I went by myself. Does that mean that nobody showed me where the jury box was or gave other assistance? No. It means that I went where I needed to go without inconvenience to me or those around me. That is what I call independence.
Just as with the sighted, there are times when you as a blind person want privacy--want to go somewhere (to see a boyfriend or girlfriend, for instance) without being accompanied by your daily associates, want to buy a present for a friend or a loved one, or just feel like following a whim. In such cases a dog or a cane is helpful. On the other hand, there are times when the assistance of a sighted person is extremely beneficial. Taken by itself, the use or lack of use of a sighted guide has very little, if anything at all, to do with real independence. In fact, the whole notion of independence (not just in mobility but also in everything else) involves the concept of doing what you want when you want, and doing it without paying such a heavy price (either monetarily or otherwise) that the thing is hardly worth having once you get it or do it.
In conclusion, I say to each member of this organization: Hold your head high in the joy of accomplishment and the pride of independence--but not because of dog or cane or human arm, and not because of your ability to read Braille or use a computer. These are the trappings of independence, not the substance of it. They should be learned, and used when needed--but they should be regarded only as means, not ends. Our independence comes from within. A slave can have keen eyesight, excellent mobility, and superb reading skills--and still be a slave. We are achieving freedom and independence in the only way that really counts--in rising self-respect, growing self-confidence, and the will and the ability to make choices. Above all, independence means choices, and the power to make those choices stick. We are getting that power, and we intend to have more of it. That is why we have organized. That is why we have the National Federation of the Blind. We know where we are going, and we know how to get there. Let anybody who doubts it put us to the test. My brothers and my sisters, the future is ours! Let us meet it with joy; let us meet it with hope; and (most important of all) let us meet it together!   ■

[Photo/Caption: Sherry Lagassé]

I NEVER WALK ALONE

by Sherry Lagassé

        I was a normal child, the oldest of three.  My two brothers and I played, rode motorcycles, and enjoyed carnivals.  Growing up in Florida, we were always outside, mostly playing in the water.  Then at the age of 11, I started losing weight, drinking lots of water, and just not feeling well.  My dad thought I had the flu.  Soon I was really sick and the doctors didn't know what was wrong with me. Finally they did a blood test, diagnosed diabetes, and into the hospital I went. That was the start of 25 years of shots, blood tests, watching my exercise, my food and my general health.
     When I was 25, my eyes started bothering me.  I went to see my optometrist, who suggested glasses.  I got them.  But working as a waitress and going to school I just didn't like them, so I got contacts.  All along, the optometrist kept saying my eyes would get better.  Well, they didn't, and the next thing I knew I couldn't see the colors of the traffic lights, and I was driving with the flow of traffic.  So I called my dad, who lived in St. Augustine, where there is a deaf and blind school.  The school recommended that I go to the Bascom Palmer Eye Institute in Miami, Florida.
     I went immediately, and they saw me right away.  They did laser photocoagulation on my eyes, but very little vision returned.  They said my retinas had become detached.  They did a vitrectomy surgery, and I got back light and dark perception and hand movement vision. That was great, since I had no vision before.  Dr. Blankenship told me that diabetes had caused the small blood vessels in my eyes to break and bleed, pulling on the retina and detaching it.  He warned me the surgery would have limited results.
     I was depressed and not ready to accept all of this, but I got Independent Living to teach me how to take care of myself and the house and laundry, just everyday things.  The more I did, the better I felt, and I gained back a lot of my self-confidence.  But I could not get around on my own.
     People who can see just do not realize how frightening it can be to walk with them.  So I decided to get mobility training with a cane.  But some sighted people do not realize that we are just people. They, especially children, do not understand the blind and the use of a cane.  The kids can be so cruel, putting books in front of you, pulling branches down to hit your face and walking behind you to scare you.  Walking with a cane alone has been very frightening for me.
     I'd always thought I'd like to get a guide dog, but everyone told me how long it would take to get into a school.  So I just kept it in the back of my mind.  Meanwhile I worked with my cane.  I didn't like using it, at all; people were very reluctant to speak to me.  People acted very shy when I walked by with a cane. They got really quiet when I came up to them.
    Luckily I moved to a town in Maryland, where I came to find out, my father had a friend who was a member of the Silver Run Union Mills Lions Club, a small club but very willing and able to help.  My father spoke with this friend and things started to happen.  Before I knew it the Lions had called me and asked if I was interested in a guide dog. Of course my answer was yes!  The next surprise was a ticket in the mail to Rochester, Michigan for Christmas.  The date of the airline ticket was for February of 1985, to the Leader Dog School for the Blind.  I could not believe it--what a Christmas present!  I couldn't wait.
    I arrived at the school scared but very excited.  There were about 20 people there for class, some all the way from Madrid, Spain. We were all nervous, scared, overjoyed to be there. On the third day my dog arrived, February 13, my Valentine dog.  It was a boy, named Blue, a 75-pound golden retriever.  Excited and bouncy, he had no idea who I was but it didn't matter, he and I were going to be a team. He was so big I was surprised that he was not a Saint Bernard.
     The next day we started working.  It was scary but my trainer was right behind us so nothing could go wrong.  It was slow at first, but it got better; and then, while we were walking one day, all of a sudden a car came screeching out of a bank parking lot.  My trainer and I were talking and didn't notice, but all of a sudden Blue just stopped with his head blocking my left leg.  I reached down to touch his head and the car came right in front of us, down a driveway, squealing and speeding.  Ever since that day I have had no trouble believing that Blue would do anything for me.
     For the next 28 days Blue and I were inseparable.  He slept in my room, right beside my bed.  We walked every chance we could, just to get to know each other.  I fed him every night at the same time, took him outside at the same time, to the same spot to go to the bathroom, and brushed him; but most of all I loved him.  The end of the training came and it was time to go home.  I was scared and excited about going home, but I was going to be independent.  We hopped on the plane with Blue at my feet and off we went.
   About a year after I got Blue I started getting sick and losing weight.  I couldn't eat in the mornings, and I didn't have any energy. Blue learned to slow down when we were walking.  Through a test I found out it was my kidneys--they were failing.  Before I knew it I was hospitalized and started on dialysis.  For that year Blue and I didn't do much walking, just to the dialysis center three times a week.  I kept getting worse and finally went into a coma.  The doctors decided that I needed a kidney transplant right away.  So my family was tested and my youngest brother was the best match, but he had a heart murmur.  They had to do a test on him to make sure he would survive the surgery.  They got him stable and the next thing I knew he and I were on our way to the operating room.  It went great.  They told me when I woke up that his kidney was peeing on the table as they put it in me!  No problems with the kidney, just with regaining my strength.  Blue was not allowed to stay with me but he visited.  I was in the hospital for a month but Blue was great, he didn't forget a thing. When I got home Blue walked very slowly with me until I regained my strength.
     Now Blue's 10th birthday is just around the corner and we are still walking and doing everything together.  Now that I have developed bad neuropathy in my feet, Blue has slowed down for me.  He has been there for me through lots of ailments and although he is starting to slow down too, we are still a team.  We depend on each other, and just knowing that gives me strength.
    We are back in St. Augustine with family now and we have done lots of traveling together.  Now we are learning the town.  We are meeting lots of people and all are very interested in Blue.  We talk to everyone who asks about the training and the school.  We even go to schools to tell the children about guide dogs.  We especially tell everyone how wonderful the Lions Clubs are.  Even if you don't need a guide dog you could raise a puppy for the school.  Blue has kept me going when I didn't think I could go on.
     I am 37 and doing better.  I've gone from five shots a day to an insulin pump.  The pump I use is audible and the only thing I have to have someone else do is to fill the cartridge with insulin (which can be done once a month for me since the cartridge holds 315 units).  My Disetronic H-Tron V100 pump fits in my pocket and no one ever knows it's there.  I can program the pump in seconds and know that I got the right dose.  I wear it in the same spot for 48 hours then I change the tubing, needle, and injection site.  The pump is waterproof so it goes in the shower and the pool with me.  It is continuously dripping insulin every three minutes so it's almost like a real pancreas.  It still takes a lot of effort and blood tests to monitor it.

I hope by telling you my story I can help someone else.  Keep in touch with your health care person and be aware about your condition, and by all means keep your chin up.  Things could be worse. ■

 

by Wesley W. Wilson, M.D.

  

NOTE:  If you have any questions for "Ask the Doctor," please send them to the Voice editorial office. The only questions Dr. Wilson will be able to answer are the ones used in this column.
           
Wesley Wilson, M.D. is an Internal Medicine practitioner at the Western Montana Clinic in Missoula, Montana.  Dr. Wilson was diagnosed with type I diabetes in 1956, during his second year of medical school.

     Q:  I am a diabetic and I smoke -- is this bad for me?  How does this affect my heart, kidneys and eyes?

     A:  Persons with diabetes understand that they have increased risk for the development of blood vessel-related diseases. Blood vessel diseases, also called vascular diseases, can be divided into two broad groups:
Macrovascular disease affects large blood vessels and can reduce blood flow to organs such as the brain, heart and legs.  With diseases of the large blood vessels there is an associated increased likelihood of stroke when blood flow to the brain is reduced, heart attack when the heart loses blood supply, pain in the legs on walking or even amputation when blood flow to the legs is limited. 
Microvascular disease reduces blood flow through tiny blood vessels and particularly seems to affect the kidneys and the eyes. Microvascular disease has been the hallmark of diabetic complications leading to the greatly increased risk of kidney disease and eye disease in persons with diabetes.
     Macrovascular disease is increased by a number of so-called risk factors, including male gender, increased cholesterol, decreased high density lipoprotein (HDL), high blood pressure, diabetes, genetics (a family tendency for vascular disease), and cigarette smoking.  Each risk factor adds to the other risk factors that increase the likelihood of large blood vessel disease. Individuals are unable to control some risk factors such as male gender, and may be only able to partly control some other risk factors such as diabetes, increased cholesterol or low high density lipoprotein.  For these reasons, it seems important to try to limit the controllable risks as much as possible to reduce blood vessel disease. Smoking is a risk factor of major proportions for macrovascular disease. Smokers have greatly increased risk for heart attack. To couple the risk associated with smoking with the risk associated with diabetes seems to argue that a logical approach would be to attempt to avoid cigarettes.
     The effect of smoking on microvascular disease is harder to evaluate. There is evidence that diabetic smokers have somewhat earlier and more rapidly progressive eye and kidney disease than diabetics who do not smoke.  Diabetes control seems to have a much greater effect on prevention or slowing of kidney or eye disease than avoidance of smoking.
     The Diabetes Control and Complication Trial (DCCT) showed that over a reasonably short period of time (6 1/2 years) intensively treated diabetics were able to achieve a hemoglobin A1c (which is a measure of degree of diabetic control) near 7% as compared with the conventionally treated group that had values of hemoglobin A1c of about 9%.  The aim in the DCCT was to try to achieve a value of about 6%, so a moderate reduction in hemoglobin A1c was achieved with intensive treatment.  The intensively treated group with about a 7% hemoglobin A1c had a reduction in eye, kidney and nerve conduction problems from 35-70%. In the DCCT groups only about 18% of the intensively and conventionally treated individuals were cigarette smokers, and I believe there was little difference in microvascular disease in the smokers and nonsmokers.  The effect of smoking however, is usually manifest after many years of cigarette use.  The longer the exposure to the tobacco products, the greater the risk of vascular disease.
     As in all aspects of medicine and particularly in diabetes management, the decision as to the amount of work spent trying to control diabetes, the amount of effort spent trying to control risk factors and the overall commitment to a healthy lifestyle is decided by the individual rather than by a physician.
     I personally feel that an informed patient with diabetes is best able to make decisions and, of course, I would strongly recommend careful attention to healthy lifestyle, including regular exercise, careful attention to diet, frequent blood sugar testing, a low cholesterol, a high HDL and trying to achieve a hemoglobin A1c as close to 6 1/2 -7% as can be safely accomplished. Cigarette smoking is a major risk factor and should be avoided.  ■

 

 

Debbie Foulds
Diabetes Educator
Colorado Springs, CO

August 2, 1994

Mr. Bryant, Editor
Voice of the Diabetic                                                                                                                                                                                 
Columbia, MO  

Dear Mr. Bryant,
     As a 20-year veteran of the nursing profession, eight of which have been directly associated with diabetes, it was with pleasure that I discovered your Summer Edition of Voice.  The information was informative, relieved many of my anxieties toward vision impairment and gave me a direction in which to go if needed.  Your magazine is a wonderful light in the eyes and ears of many.

Thank you,
Debbie Foulds

. . .

Jan Kline, M.A., R.N.
East Meadow, NY

August 9, 1994

Voice of the Diabetic
Columbia, MO

     I am the Nurse-Patient Educator in the Center of Primary Care at Nassau County Medical Center.  The program I work in is funded by a New York State grant.  Consequently, we have no funds available to subscribe to your newspaper.
            Much of my time is spent with our patients who have diabetes. Your newspaper would be a wonderful resource for them.  Would you please make 100 available to us each quarter?  Your consideration is appreciated.

Sincerely yours,
Jan Kline, M.A., R.N.

. . .

Stephen L. Williamson
Silver Springs, FL

June 29, 1994

Mr. Ed Bryant, Editor
Voice of the Diabetic
Columbia, MO

Dear Mr. Ed Bryant,
            My name is Stephen L. Williamson.  I am blind and am a newly diagnosed diabetic.  I was really excited when I was given a copy of Voice of the Diabetic and was telling people about it.  Doctors of several diabetic patients didn't know about your publication and are very interested to see some copies.  If it is possible I would like to get 12 copies (print) and distribute them in this area so as to spread the word of your publication as it has been a great informational resource for me. 

Thank you,
Stephen L. Williamson

. . .
Patte Tough
Enfield, CT

August 4, 1994

Ed Bryant, Editor
Voice of the Diabetic
Columbia, MO

Dear Mr. Bryant:

     Thank you for adding our name to your mailing list.  We enjoy reading Voice of the Diabetic and find that it contains information of value not only to people who have diabetes but also to people who have a disability.
     We are a non-profit, volunteer-supported program sponsored by and housed at Asnuntuck Community-Technical College in Enfield, CT.  Our program provides information and services in the area of resource information, community education, advocacy and supportive help to persons with disabilities.
     We would like to help "spread the word" about diabetes.  Please send us fifty copies of the Voice each quarter so that we can have issues available to offer to students at the college.  If we need more than fifty, we will contact you.
            Thank you for the opportunity to help.  We look forward to receiving future issues of the Voice.

Sincerely,
Patte Tough

. . .

Mary Nothstine
Mocksville, NC

July 22, 1994

Ed Bryant, Editor
Voice of the Diabetic             
Columbia, MO

Dear Ed,
     Thanks for the Voice of the Diabetic.  Don't know what my group and I would do without it.
 I appreciate you so much and all you are doing to help others.  I would like 60 copies to place in our local hospital and doctors' offices.  They are so needed here.  Again, thanks Ed.  We love you and appreciate you and your good work.

Mary Nothstine
 
. . .

Randy H. Farb
Louisville, KY

August 18, 1994

Mr. Ed Bryant, Editor
Voice of the Diabetic
Columbia, MO

Dear Mr. Bryant:
   Thank you for your letter of August 1, 1994. We enjoy receiving the Voice of the Diabetic.  It has been very helpful to our medical program.  Therefore, please add our institution to your membership roster.

Sincerely,
Randy H. Farb
 
. . .

Christine S. Ehlers
Monroe, CT

July 15, 1994

Ed Bryant, Editor
Voice of the Diabetic
Columbia, MO

Dear Mr. Bryant:
    Age-onset diabetes runs in my husband's family, and when his 83-year-old mother started to have complications, we were lost as to what to do and how to help her cope.  Fortunately, just about that time I got a call from the Connecticut Federation of the Blind during their fund drive.  Unlike most fund drives, they asked if I knew anyone they might be able to help and listed some of their services (the actual donation seemed to be secondary -- to be of service seemed to be the caller's first priority).When I mentioned Mom's problem coping with her failing eyesight and the fact that she was having a difficult time with needles, they told me about your division.  I received the newsletter several times and passed it around the family.  In addition, any time I've had any phone contact with any of your members, they couldn't have been nicer and more helpful and understanding.  It was great to know that we were not alone.
     Enclosed is a small contribution for the Diabetics Division.
 Thanks for all your help this past year.  We really appreciate it. National Federation of the Blind will certainly be on our list of charities we support.

Very truly yours,
Christine S. Ehlers   ■                                                                                                           
 

Fighting the Cold War

by Virginia Peragallo-Dittko, R.N., M.A., C.D.E.
           
Virginia Peragallo-Dittko, R.N., M.A., C.D.E., is a diabetes nurse specialist and is program director of the diabetes education Center at Winthrop - University Hospital in many eight Mineola, New York

Although Rita’s doctor has just given her a positive report on her health, she sighs as she thinks about the colds and flu she associates with winter and how they can wreak havoc on her diabetes. "Every Thursday," she tells her doctor, "I watch my three grandchildren. Today, I am taking them to the pediatrician because one has ear infection and the eldest is coughing.  Every winter, I catch cold from them last year, I couldn't shake a head cold for three weeks, and I couldn't get my blood sugar below 200."                        
Rita’s concerns are valid. For people with diabetes, having a cold or flu can create many problems, including elevated blood glucose levels. But if you are armed with an understanding of how your body fights off illness and if you know to do to match your body's response, you'll be able to win the Cold War.

First Things First
The first rule for battling any illness is to continue taking your insulin or oral medicine even if you don't feel like eating. Many people think that if they can't tolerate their normal amount of food when they're sick, they should also decrease, or even omit, their dose of insulin or oral medicine.  In fact, depending on the severity of the infection, you may need even more than usual.
When you're sick, fever and dehydration, infection, and stress caused the body's production of counterregulatory hormones (cortisol, glucagon, epinephrine, and growth hormone) to rise. This increases the liver's production of glucose. In most people with diabetes, the body can't increase the supply of insulin to match this increased level of blood glucose.
In people with type I (insulin-dependent) diabetes, this increased blood glucose level, when combined with the decrease in the level, and can cause your body to burn fat for energy. This results in the increase of ketones, a toxic by - product of fat metabolism. NFT Jones in the blood leads to ketoacidosis, which may require hospitalization.  And the continuing to take insulin or diabetes pills, regardless of the amount you eat when you're sick, will help prevent the onset of ketoacidosis.

Keeping Score
The second one battling illnesses monitoring blood glucose and you're in ketones regularly. Should test your blood glue post (or urine glucose) before every meal and at bedtime when you are sick.Monitoring every four hours while you're awake is a good idea if you lost your appetite or if your blood glucose is rising. By closely monitoring your blood glucose-and recording your readings-you can quickly see the pattern shifts upward. In fact, an expendable change in your blood glucose is sometimes the first indication of an impending infection.
If you have type I (insulin-dependent) diabetes, test your urine for ketones every 4 to 6 hours when you are sick, especially if your blood sugar is consistently a 240 mg/dl or if you experience nausea.

Bringing in Reinforcements
With any illness, it's important to drink plenty of fluids. By keeping yourself hybrid, you can minimize congestion and listened as the creation of a head cold. If you are urinating more frequently because your blood glucose is elevated, need to replenish your body's fluids. Remember, too, that staying well hydrated will help you avoid the loss of fluids that result from vomiting and diarrhea, which is severe and left and Hatch could require intravenous replacement.
Loss of fluid in the body creates an additional release of counterregulatory hormones it also turns off the body safety valves -- the kidneys. Even people with poorly controlled diabetes will clear because through their kidneys -- if they remain well hydrated. When they become dehydrated, this doesn't occur in blood glucose levels rise. For this reason, it's a good idea to drink 8 ounces of sugar -3 foods every hour while awake.

Replacing the Ammunition
One of most confusing sick-day guidelines is what to do if you can't tolerate solid food.In this case you should choose small portions of high calorie (including sweetened) foods and liquids such as ginger ale and sweetened ice pops to provide the calories you need to fight fever or infection. Try to replace 50 gram of carbohydrate every 1-2 hours. If you are nauseated or can't tolerate larger amounts of fluid you can set ½ cup of apple juice, ½- ¾ cup of regular soda or 1 cup of Gatorade every 1-2 hours. The chart shown here lists other food options.
If you don't use exchange-based meal plan, try to replace 50 grams of carbohydrate every 3-4 hours if you can eat solid food but do not have your usual appetite, choose foods that your grandmother might suggest--chicken soup, tea and toast, pastina, and so forth you may have a favorite home remedy that works for you.

Planning Ahead
One of the greatest barriers to managing diabetes during an illness is that you are often too sick to follow the guide to prevent trouble, tell a friend or family member about sick day guidelines -- before you get sick.  It's important that they know the reasons behind the rules, so they don't make a wrong decision.  Consider the family member who knows how important it is for you to avoid skipping meals and naturally hesitates to give you insulin or oral medication when you need it most because you are unable to eat. Or imagine a neighbor who agrees to purchase a gelatin and Popsicles for you, but returned cheerfully with only sugar-free products. Telling them now will avoid problems when it's important.
You won't feel like running to the store if you're sick, so stock a sick day cupboard. Sugar-free and regular soda, gelatin, and puddings can be stored easily. If these foods are available, you are more likely to eat and to keep yourself hydrated.
Cold and flu viruses are extremely contagious. Because people continue to go to work, shop, and so forth despite a cold, the virus spreads rapidly.  If you know that you are at high risk for developing colds because you are exposed to young children--as Rita is--or if you feel run down, try an ounce of prevention. Colds are largely spread by touching an infected person or contaminated objects, such as doorknobs and telephones, then touching your eyes, nose, or other mucous membranes. So wash your hands frequently, watch your blood glucose, follow a healthy meal plan, and rest at the first sign of infection.
Is it a Cold or Flu?
The cold and flu are both viral infections, but it's easy to confuse their symptoms.
A runny, stuffy nose is the hallmark of a cold, and a high fever is rare. A cold is often accompanied by a sore throat, cough, mild achiness, and fatigue. In contrast, the flu is characterized by high fever with severe aches and pains, headaches, and the fatigue. You can also have cold symptoms with the flu, although a cough can become severe. Contrary to what many people believe, nausea, vomiting, and abdominal pain are not flu symptoms -- they can indicate ketoacidosis.
Call your doctor
Self - management does not mean solo - management. When a sore throat begins, many people reach for leftover antibiotics prescribed for the last infection. Antibiotics are used to treat bacterial infections, not viral infections, and should be prescribed by a doctor for use only with a specific illness.  The guidelines in this article apply to mild, short - term illnesses only. If you experience any of the following symptoms, you may have serious problems and should call a doctor without

Over-the-Counter Relief
Every year, cough-and-cold formulas are promoted and sold by the millions. They can’t cure the common cold, but they do alleviate the symptoms. Deciphering which kinds are best for what symptoms, however, can be confusing.
Decongestants include a warning for people of hypertension and diabetes. They are chemically similar to adrenaline (a counterregulatory hormone) can stimulate the liver to release glucose. They can also increase the heart rate and raise the blood pressure people hypertension. And for people with diabetes, decongestants can complicate blood glucose management.
For treating coughs, antitussive medicine is usually combined with decongestants, antihistamines, and expectorants in an alcohol-containing liquid.  However, a large number of sugar-free, alcohol-free cough liquids and cough drops are available over the counter. Note that prescription cough syrup may not be sugar-free or alcohol free.
Fevers are usually treated with aspirin, acetaminophen (Tylenol, Anacin-3), or ibuprofen (Motrin, Nuprin, Advil), which also alleviate the headaches and muscle aches of the flu. Aspirin is not recommended for children because the possibility that they could develop Reye's syndrome, a potentially fatal condition.  The use of any analgesic should be discussed with your doctor because of the possibility of interaction with any medication or illnesses (heart disease, kidney disease). The address is associated with antihistamine can be dangerous when driving or operating even household gadgets or machinery.  Antihistamines can also be dangerous if combined with alcohol or other drugs.
There are two approaches to the use of cold remedies in people with diabetes. One suggests that the effects of some prescription medications, the stress of being sick, and the increase in blood glucose over -- counter products can complicate blood glucose management.  With this approach, the use of sugar-free cold grimace is encouraged.
The other approach suggests that if blood glucose is being monitored more frequently, person with diabetes can take over it - the - counter cold remedies and adjust their doses of insulin or oral medicine to counteract whatever effect they may have on blood glucose.
With either approach, your pharmacist can tell you if a particular product will raise your blood glucose or your blood pressure. Rely on your healthcare professional to advise you of the safest approach for managing your diabetes during an illness. For one person the use of a decongestant can mean the difference between a restful night sleep and a night of tossing and turning. For someone else, the same decongestant may lead to dangerously elevated blood glucose levels.
Agreed, you aren't alone in your phone release of infection, but by thinking ahead in knowing the facts you can be better prepared to fight the Cold War.
(Note: reprinted with permission of Diabetes Self-Management.) ■

A daughter's story
Many people have known the agony of watching a family member waste away from an incurable disease such as cancer.  Many times all even the doctors can do is try to make the sufferer comfortable. Everyone tries to help.  The family draws together in this time of pain.      
What happens when it is one of your own stricken, and you are blind?  When your own family hasn't learned that blindness is not synonymous with inability?  We know education is critical, and stories like the following remind us why.            Olivia Ostergaard, Treasurer of the National Federation of the Blind of California Diabetics Chapter, lived through such a situation.  Although she had been living independently for years, her own family, believing that "a blind person couldn't handle it anyway," would not allow her to help care for her diabetic mother, whose cancer had become terminal.
There is no good reason to bar any capable person from caring for a stricken loved one.  In a time of such agony, the expression of ancient prejudices about the blind compounds the pain. "Imagine not being allowed to cook a simple soup, because someone was afraid you'd burn it!  Imagine total strangers invading your territory, when you should be able to take charge of the situation..." says Ostergaard.      
When Olivia's younger (sighted) brother was given power of attorney over their mother's affairs, Olivia felt left out and abandoned.  As she states:"When we went with mother to the doctor, my brother asked if she was terminal.  The doctor denied it, and ordered more tests.  I privately protested, because my brother wasn't seeing what I was seeing.  He was still living in his fantasy that our mother was going to be all right.  I knew better.  I knew just by the way she was acting.  Her thinking wasn't clear, sometimes.  My brother wouldn't listen to me.  I was his blind sister, "who didn't know anything".
Four months later Olivia and her brother lost their mother to terminal cancer.  Their agony needs no reinforcement here--but a simple point needs making: Blind folks can handle adversity!  In such a situation, the burden can be eased by allowing ALL family members to carry their share of it. Knowledge is power. ■

If you or a friend would like to remember the Diabetics Division of the National Federation of the Blind in your will, you can do so by employing the following language:
          “I give, devise, and bequeath unto Diabetics Division of the National Federation of the Blind, 1800 Johnson Street, Baltimore, MD 21230, a District of Columbia nonprofit corporation, the sum of                     (or “               percent of my net estate”) to be used for its worthy purposes on behalf of blind persons.”

 

 

Recipe corner

 Send your great ideas to the editor.  He is the official taste tester and needs recipes to test his taster.
 LifeScan Inc. sent the following two recipes to members of the American Association of Diabetes Educators as diabetes-safe dishes. These delicious recipes provide key ingredients for successful diabetes management.

Fish Taco
1/2 cup nonfat milk
3/4 cup seasoned bread crumbs
8 oz. firm fish fillets (red snapper, sea bass, etc.) nonstick vegetable spray
8 corn tortillas
1 cup shredded cabbage
1 tomato, sliced                                                                                                          
Tartar sauce, or salsa and fresh cilantro (optional)

 Pour milk into one shallow pan and bread crumbs into another.  Gently coat fish by dipping first into milk, then into crumbs.  Be sure that the fish is completely coated.  Place fillets on a baking sheet that has been coated with nonstick spray and bake in a preheated 350-degree oven for 10 minutes or until fish is done.  Warm the corn tortillas in the oven and place the fillets, cabbage and tomato slices on top.  Serve with tartar sauce or salsa and fresh cilantro, if desired.

 Yield: 8 servings
 Per serving (1 taco):118 calories, 9 g protein, 2 g fat. 17 g carbohydrate, 1.7 g fiber, 11 mg cholesterol, 104 mg sodium, 260 mg potassium     Diabetic Exchanges: 1 starch/bread, 1 lean meat                                                                                                                   
Black Beans
 2 tsp. vegetable oil                                                                                                    
1 bay leaf
1 large onion, chopped
1/4 tsp. Pepper
2 cloves garlic, minced
1 tsp. white vinegar
1 green pepper, chopped
1 orange, unpeeled and halved
1 tomato, chopped
2 stalks celery, chopped
1 cup dried black beans
4 oz. lean ham or 8 oz. ham hocks (optional)
 3 cups chicken stock or water
 Heat oil in a large pot.  Sauté onion, garlic, green pepper and tomato until soft.  Add beans, stock, bay leaf and pepper.  Bring to a boil, then reduce heat.  Simmer for 2 minutes and remove from stove.  Let sit, covered, for 1 hour.  Add vinegar, orange halves and celery and cook 2 to 3 more hours until beans are tender.  Remove orange and bay leaf.  To thicken bean mixture, remove about 1/2 cup, mash, and return to pot.  For additional flavor, add lean ham or ham hocks.
 Yield: 6 servings, 4 1/2 cups (without ham)                                                             Per serving (3/4 cup):241 calories, 9 g protein, 10 g fat, 29 g carbohydrate, 10.3 g fiber, 0 mg cholesterol, 28 mg sodium, 694 mg potassium Diabetic Exchange: 2 starch/bread                                                                                                                                                        The following two marinades feature Butter Buds, flavor enhancers without the extra fat and cholesterol.  Marinades or more concentrated mixtures of spices, called rubs, can provide a refreshing alternative to heavy sauces. To receive a complete set of seven free marinades and rubs recipe cards while supplies last, call the Butter Buds Hotline toll-free at 1-800-231-1123.
 
Yogurt Tandoori Marinade
1-1/2 cups low-fat plain yogurt
1/4 cup chopped fresh cilantro
2 tbsp. chopped fresh mint
1 tbsp. chopped canned green chilies
1 tbsp. Butter Buds Sprinkles
2 tsp. lime juice
1/2 tsp. granulated sugar
1/4 tsp. curry powder

In a medium bowl, combine all ingredients until well blended.
Marinade can be refrigerated for up to 2 days before using.
Serving Suggestions: Use to marinate poultry or lamb before grilling or barbecuing.
 Variations: Reduce amount of yogurt to 1 cup and add 1/2 cup light mayonnaise to make marinade into a dip for fresh vegetables.
 Tips: Since dried herbs are stronger in flavor than fresh herbs, you can use less in recipes.  Fresh herbs can easily be stored in the freezer.  Simply rinse the herbs in cold water and freeze in a resealable plastic freezer bag.

 Yield: 2 cups (32 tbsp.), enough marinade for 2 lbs. of poultry or lamb
 Per serving (1 tbsp.): 8 calories, 1 g protein, < 1 g fat,
1 g carbohydrate, 1 mg cholesterol,
20 mg sodium
Diabetic Exchange: free exchange
 
Oriental Marinade
1/3 cup low-sodium teriyaki sauce
1/4 cup low-sodium chicken broth
1 tbsp., plus 1 tsp. Butter Buds Mix
3 tbsp. peanut oil
2 tbsp. rice wine vinegar
1 tbsp. honey
1 tbsp. minced scallions
1 tbsp. fresh lime juice
1 tbsp. grated ginger root
 In a small saucepan, bring teriyaki sauce and broth to a boil;
Stir in Butter Buds.  Remove from heat and stir until blended.  Add remaining ingredients; stir to combine.  Serving Suggestions: Use to marinate meat or poultry.  Marinade can be refrigerated up to 1 week before using.
Variations: Marinade can also be used as a stir fry sauce.  If a thicker sauce is desired, add 1-2 tsp. cornstarch to marinade during heating.

Tips: Adding cornstarch to a hot liquid produces a thicker sauce than when cornstarch is added to a cold liquid and brought to a boil to thicken.  A cornstarch-thickened sauce must always come to a boil for thickening to occur.

 Yield: 1 cup (16 tbsp.), enough marinade for 1 1/2 to 2 lbs. of meat or poultry

Per serving (1 tbsp.): 35 calories, < 1 g protein, 3 g fat,
3 g carbohydrate, 0 mg cholesterol, 230 mg sodium Diabetic Exchange: 1/2 fat exchange.  ■

 

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.

 

HOW TO READ YOUR LUNCH

The Nutrition Facts” box enables you to tally quickly how much of your daily nutrient requirements will be met by eating a food.  Here’s what to consider:
 
 “Serving sizes” are now more consistent among similar foods and closer to the real amount people tend to eat.  All information that follows is based on amounts.  If you eat more or less adjust calories and nutrients.   

      “Calories from fat” will help you get no more than 30 percent of your daily calories from fat, as is currently recommended for good health.

For More Information
            To order copies of the AARP publications listed below, write AARP Fulfillment, EE0673, P.O. Box 22796, Long Beach, Calif. 90801-5796.Be sure to include stock numbers with your request:

• “Eating for Your Health” is a guide to food for special diets and includes recipes and shopping tips; no. D12164
• “Using the New Food Label to Choose Healthier Foods,” a joint project between AARP and the FDA is a large-type brochure; no. D12164

One Size Does Not Fit All The FDA hopes the new nutritional labels will consumers be more healthful diets. Your doctor or a nutritionist   can help you develop some guidelines based on your individual health needs and personal tastes. But here are some things to keep in mind as you do that: Most of the information on the new food labels is based on a 2000 - calorie - per - day diet, that may not be ideal for you. The National Academy of Sciences recommends a 1900-calorie-per-day diet for moderately active women over age 50, and a 2300-calorie-per-day diet for moderately active men over 50. Studies frequently show older people are deficient in the essential vitamins and minerals, putting them at risk for the disease that results from malnutrition. Some may simply be eating too much protein and fat and not enough cereals, vegetables and fruits. Others who live alone may have trouble shopping and cooking or may lose interest in eating because they have no one to share their meals with. Still others can get the nutrients they need because of dietary restriction or dental problems. And some have medical conditions or take prescriptions that prevent their bodies from absorbing enough nutrients. These people need to plan to avoid "empty" calories and ensure sufficient nutrients. Older people, in general, maybe more of some nutrients than younger people. For instance, the 2000-calorie-per-day diet on new labels allows for 1,000 milligrams of calcium.  However, the national Osteoporosis Foundation recommends 1,500 milligrams for post-menopausal women not on estrogen replacement therapy (ERT) and 1,000 to 1,200 for women on ERT. (Note: © 1994 AARP Bulletin.  Reprinted with Permission) ■

 

 

          

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

[Photo/Caption: Dolores Olson]

Spotlight

Dolores Olson was Secretary of our Diabetics Division in 1987/88.Now 74, she has had type I diabetes since 1932, for 62 years (Note: insulin was first discovered in 1921).She has been taking one shot a day for many years, and has never experienced complications!  Though she is finally showing slight retinopathy and neuropathy, she still has 20-20 vision with glasses.            
            How does she do it?  Dolores monitors her blood sugars five or six times a day, and takes an extra shot of Regular insulin if the numbers get too high.  She tests so often because she is "hypoglycemia-unaware", and has many reactions.  She adjusts her diet according to the test results.  Until 1986, she tested by urinalysis, with a blood test every three months--and she boiled her syringes!
Asked for "words of wisdom", for us less-experienced diabetics, she stated: "Don't get discouraged, and maintain good blood glucose control--I can’t help but feel that it pays off in the long run.  You can't let it get you down.  You two people (Ed Bryant and Karen Mayry), and a lot of the others in the organization, are certain marvelous examples of what you can do with determination."
 So is she.  Although diabetes causes many complications, and all are at risk, many people never experience any ramifications.  With her careful self-management and upbeat attitude, Dolores Olson shows us how much is humanly possible.  Dolores, we salute you!

For Sale

We have been asked to announce Mary Kay Cottingham, who not long ago received a pancreas transplant, finds she doesn’t need to test her blood glucose as often.  She has an oversupply of test strips for her LifeScan One Touch II, and is offering them for sale.  Her LifeScan factory test strips will sell for $25 a box and her First Choice Test Strips (for the One Touch II) will sell for $15.
            For more information, contact Mary Kay at (713) 789-6947.
 

Health and Medical Information

 Information about nearly any health or medical concern you can think of--from aging, AIDS, and Ayurvedic medicine through uterine fibroids and vitamins--is to be had at the Plaintree Health Resource Center in San Francisco.The library's collection includes current health information in the form of professional medical literature, popular health publications, and alternative therapy resources.  The collection also includes directories for locating support groups, health practitioners, and health organizations, as well as health-related audio tapes and video tapes for listening and viewing.
 Plaintree's collection is available at no charge to individuals who want to do their own research (staff is always there to give assistance).Those who can't come in may ask for information packets to be mailed to them.  The fee for this service ranges from $20 to $100, depending on the size and nature of the packet requested.
 Plaintree Health Resource Center is located at the California Pacific Medical Center, 2040 Webster Street, San Francisco, CA 94115; telephone:(415) 923-3680.
 (Note: Reprinted from Disability Issues, June 1994, published by the Information Center, in Boston)
 
For Sale

Heavy Duty Wheel chair, like new.  Price $500.Contact Ruth Crafton, 5340 Milburn Road, St. Louis, MO 63129.

 

New Software

 We have been asked to announce: Blazie Engineering now offers the WINDOWS MASTER software package, which, when used with any voice synthesizer, allows blind and visually impaired computer users access to all the popular "Windows" applications enjoyed by sighted users.  WINDOWS MASTER also interfaces perfectly with Blazie's own Braille `n Speak and Braille Lite.
 For more information on this product, or to receive their free catalog, contact: Bryan Blazie, Blazie Engineering, 105 E. Jarrettsville Road, Forest Hill, MD 21050; telephone :(410) 893-9333.

 

Correction

            In the last issue of the Voice in the article titled “What type of diabetes do you have?”, part of a sentence was left out.  The sentence part of section #5, “Gestational Diabetes” should have read: “A woman with untreated gestational diabetes is at increased risk for having a large baby, or one with birth defects.”

 

Dangers of Eating Raw Shellfish

        We have been asked to announce:  The Food and Drug Administration wants to inform people with certain disease conditions to avoid eating raw or undercooked molluscan shellfish.  Bacteria called Vibrio Vulnificus exist naturally in marine water shellfish and can cause life threatening infection to certain susceptible people. Diabetics are among the population groups that are particularly vulnerable to the bacteria.
 The bacterial infection, primarily associated with eating raw oysters, can also occur from the consumption of mussels, clams and scallops.  When these shellfish are fully cooked, the bacteria are killed and no longer pose a health risk.
Free brochures about the proper purchasing, handling, storing and cooking of seafood are available from the FDA.  To request single copies of the brochure, or for more information, call the toll-free Seafood Hotline from noon to 4 p.m. Eastern time:1-800-FDA-4010 or (202) 205-4314 within Washington, D.C.

 

Project Services

 We have been asked to announce: Blind and vision-impaired residents of New Jersey are invited to make use of the Adjustment to Vision Loss Project, New Jersey Self-Help Clearinghouse. The project assists and coordinates vision-loss self-help groups throughout New Jersey.  The following project services are available statewide:
*Help in finding any existing group near you
*Assistance in starting a group if none exists nearby
 *Consultation with existing groups
 *Information about self-help groups and other resources
 The project also provides consultation and education to health professionals who serve visually impaired people.  It offers a telephone hotline, referrals, written and audio-visual reference materials, and in-service training.  For more information, call 1-800-367-6274 (inside New Jersey), or (201) 625-9565 (outside New Jersey).
 
Talking Watch

            We have been asked to announce: Daco International offers a new Talking Wrist Watch. Setting of time and alarm is simple, and the controls are large, easy to operate without sight. The voice is clear and unmistakable.
 The watch is priced at $12.95, with no shipping or handling charges.  For further information, or to order, contact: Daco International, #9 Barlett Street, Suite 202, Quincy, MA 02169; telephone:(617) 770-3988.

 
FootglovesGlove Sox

            We have been asked to announce: As an aid in diabetic foot care, Allerderm Laboratories offers Footgloves , soft cotton sox with individual toe compartments.  Made of breathable, lightweight, seamless cotton, Footgloves reduce friction between the toes, aid healing of fissures, toe web infections, and other irritations, and help prevent injury to diabetic feet.(Editor's Note:  I tried out a pair, found them interesting and comfortable.  We diabetics need to do everything we can to help our feet!)
 Footgloves  are available in sizes small, medium/large, and extra-large.  Price is $15 for a package of three pair, $2.50 shipping per order.  For more information, or to order, contact: Allerderm Laboratories, Inc., PO Box 2070, Petaluma, CA 94953-2070; telephone: 1-800-365-6868.
 
For Sale

Perkins Large-Cell Brailler, excellent Condition. $500.00 includes shipping.  Only used several weeks.  Reason for selling: neuropathy.  Contact Jonell Standefer; telephone: (505) 274-6402.

 

Gobble! Gobble!

            At the start of the holiday season, when you’re just getting ready to prepare those special turkey hot line is ready to help.  During the months of November and December you can call toll-free 1-800-323-4848 and get tips on turkey preparation and serving. ■