This article is for all of you parents who have had your child diagnosed with Type 1 diabetes, and that your child can live a full life with the disease.

For as long as I can remember, diabetes has been always something I had to deal with whenever I made a decision. You see, I was diagnosed with the disease at thirteen months of age in 1953. My blood vessels were so small, they had to take blood samples from my neck to get enough blood for the blood sugar analysis.

At that time my parents did not have blood glucose monitors, insulin pumps or even plastic syringes. My mother had to wring out my diapers to get a urine sample to be placed in a testube. At that time, insulin had only been available for general use to treat diabetics for only 30 years (http://www.discoveryofinsulin.com/Experiments.htm) and protocols for infants with diabetes were extremely limited. It was known that once a patient was diagnosed with diabetes that their life expectancy was would be shortened considerably. This is still true today some 80 years after insulin’s discovery. The prognosis for a healthy and long life was not encouraging. My parents were told as they carried their 13-month-old son from Chattanooga’s Children’s Hospital that they would be returning quite frequently to the hospital and that they should not expect me to live past the age of 18. I am sure this comment remained in the back of my parents’ minds as I was growing up.

So what is a young couple going to tell their diabetic youngster about his hopes and aspirations as he grows up? As I began to read, my mother gave me books on diabetes, much of which I did not understand. There are several comic books, however, that did make an impact. They had stories of youngsters that had diabetes, but became great successes as adults. Most had been diagnosed as teenagers, but nonetheless, they were successful at what they had strived to do. For children with a handicap, whatever that might be, this gives hope to the child that he/she can achieve great things given the opportunity and determination to accomplish things that some might consider not attainable.

By the time I entered school in 1957, I knew I was different from other kids. When I went to birthday parties, everyone else would have cake and ice cream and I would have crackers and milk. On the first day of school each year my mother would visit the teacher and describe how I acted when my sugar was low. She gave the teacher a roll of Lifesavers to give me if acted strangely or said that my sugar was low. Luckily it was a small private school and most teachers knew our family. One day I just did not eat the toast my mom fixed me for breakfast. She walked to the school with the toast in her hand and got me out of my first grade class to eat it....I was so embarrassed!

Because I took one shot each day, my entire family was tied to the clock. You see, the insulin is released at a steady and predictable rate which requires food intake also at predictable times. I ate breakfast between 7 and 7:30, lunch between 11:30 to 12:30, supper between 5:00 and 6:00. Any variation caused trouble and possible insulin reaction. Every Saturday we would sterilize the glass syringe and steel needles. When I was nine my mother assigned the task of sterilizing the syringes to me. She knew I would have to take responsibility for my disease as early as possible. Sometimes she had to remind me. The one injection per day schedule continued until I began multiple injections at age 26. What this did was to relax the strict time requirement to eat at specified times every day. Injections would be taken before lunch and before supper whenever the meal time occurred. This provided considerable flexibility when planning meals and eating when invited to friend’s homes and going to outings where food was involved.

Many insulin reactions and some convulsions happened. An insulin reaction occurs when the blood sugar goes below the minimum your body needs to operate normally. You cannot think as quickly as normal. You have to ask people to repeat their questions to you because you cannot process the information and you cannot make even the easiest decisions. It is incredibly frustrating not to be able to make a decision. If you do not make the decision to eat something, you lose consciousness and can quickly go into convulsions. The next stag is a coma. We had no Glucagon which is a quick acting mixture injected into a patient to bring his/her blood sugar up to mitigate the impact of a convulsion. A number of times I would not wake up in the mornings due to low blood sugar. My mother would mix table sugar with water to get me to swallow it. This could be very difficult when my jaws locked and the taste of sugar water was not appealing. I would wake up from the convulsion in my pajamas with a stiff shirt from the dried spilled sugar water. The headaches and body soreness from the convulsions were severe. Coming out of the convulsions was also traumatic. I would lose my short term memory, asking anyone who talked to me what time it was or what day it was. Over the next four to six hours I would regain my short term memory and finally get back to normal. In elementary school, I really did not want others to know about my condition. I did not want to be different from the others. Elementary school, however, was a good time for me even though I had to watch my disease. I played basketball, football, ran track and did what just about everyone else did. I carried the Lifesavers myself and used them regularly to keep from passing out.

Going to the doctor was no treat. We went regularly to keep track of my disease. I had to write down what the levels of my urine sugars were. I would run four to six urine sugars a day. These were measured on a scale from negative (no sugar) to 4+. I did not understand the numerical meaning of the measure, but I did know that 4+ was very bad. If my list of blood sugars had a large number of 4+ readings, the doctor would ask me why I was not following the diet I was given by him. This was no boost for one’s esteem especially since none of my friends had to do this. It really seemed unfair. And on top of taking an injection every day, when I went to the doctor, they took blood from my arm which caused a great deal of pain. Maintenance of the disease was continual….even for a youngster. Eating was such a pleasurable experience for every one else I knew, but for me it was a case of “can I eat that?” and if so “how much can I eat”. Whenever I would visit a friend’s house their mom would always ask, “Steve, can you have some?” Regarding diet, my mother would tell what was allowed and what forbidden. It was early in my childhood in my mind I would hear her say "If you eat a cookie, you will surely die". Just like Adam with the tree of good and evil. I used this dire warning to refuse anything that I KNEW was bad for me to eat. You see, I knew people who had gone blind, lost their legs and had kidney diseases from not keeping control of their diabetes. I knew it could easily happen to me if I did not obey the rules for diabetics. “And don’t you dare cheat on your diet!” What a terrible thing for a child to carry. If you eat something that is not on your diet, you are a cheater and you will die. I had to follow my mother’s and doctor’s instructions to stay alive and well. This is quite a burden for a child, but it worked.

So what do you do as a teenager…..You forget about time, you when you are hungry, and you eat everything in the house, Right? Not if you are a diabetic. You are tied to the clock to take your insulin, you have to watch the foods you eat which does not include cakes, pies, candy, cokes, unlimited amounts of cookies, popcorn and pizza. These are the things my friends ate in the 1960’s. The restrictive timetable and volume of food had to be obeyed, or you go blind and you lose your legs……that is what the bottom line was. Technology had advanced to where I was using plastic syringes, test-tape for urine sugar analysis, but the needles still hurt. As long as I followed the rules, the doctors and my parents stayed happy and I felt pretty good.

My close friends knew I was a diabetic, and I told them what needed to be done if I looked glassy eyed at them or if I passed out while they were around. This had little or no effect on making and keeping friends. I would go spend the night at their house always keeping track of what I ate and asking their mom what the dish on the table was made of. I was losing my embarrassment of the disease.

While in high school there were only a couple of incidents where my diabetes got the upper hand of my activities. One instance was the dress rehearsal for the Junior Play. I was the lead and most of the dialogue revolved around my character. For some reason my blood sugar was low, and the energy to remember my lines was virtually non existent. I missed my prompts and I could not remember the lines. The faculty director was very nervous, because there was no understudy for the part. I thought I was just tired, and I was passed the point of connecting the low blood sugar and my inability to say my lines. One of my friends came to the conclusion that I was having an insulin reaction and that I needed some sugar as soon as possible. I can remember it as if it were yesterday. One of the school clubs was selling chocolate covered cherries in a box. It was the first chocolate covered cherry I had eaten, and the second and a third. Within an hour I was completely out of the reaction and was able to perform successfully in the play the following night.

As time progressed I got more adept at controlling the disease. With multiple injections, I had much more independence in doing different activities at different times without having adverse effects. I had only one severe insulin reaction in college, following a day of heavy exercise. My wife woke up and I was convulsing in the bed. She injected me with Glucagon and called an ambulance. The ambulance arrived in about 15 minutes as I was coming out of unconsciousness. The Emergency Technicians tried to put an IV into my hand. Even though I was not fully conscious, I could tell it hurt. My wife told them not to insert the IV because she had already injected the Glucagon, but to take me to the hospital instead. They did not listen and I threw both technicians across the room. She told me later that I would be proud how I handled myself against two fellows who were considerably larger than I. Recovery from the headache and muscle soreness took almost a week.

Having Type 1 diabetes requires continuous effort. Over my first 49 years of the disease I took over 75,000 injections, sometimes as many as six per day. Since 2001 I have been on an insulin pump which provides the ultimate in freedom because the insulin is delivered automatically to my system. I check my blood sugar at least four and sometimes as many as eight times a day. I still have slight reactions when my blood sugar gets low and the last time I had a severe reaction was in 1985, the day after we moved to a new house. All my reserves were used up, and I underestimated the amount of food needed to keep my blood sugar up. Continuous vigilance in getting exercise, monitoring the blood sugar levels and taking of insulin is the key. If you can establish a routine, it then becomes a lifestyle.

Yes, it has been a struggle, but there is a bright side to this story.
In 2003 I heard that the Joslin Diabetes Foundation awarded Half Century medals to individuals who have lived with Type 1 diabetes for over fifty years. I contacted Joslin and provided them with a tremendous amount of information about my diabetes history. In the fall of 2003 I made a trip to Joslin’s headquarters in Boston, Mass., and was awarded a Joslin Half Century medal. Over 2,400 medals have been awarded worldwide since 1972. Five hundred medalists are believed still to be living in the United States. Twenty one individuals have been awarded the 75-year medal.

But the story does not stop here. I was asked if I would like to participate in a study of people who have had diabetes for over 50 years and had very few diabetic complications. The purpose of the study is to document the presence of eye and kidney complications related to diabetes and to examine the DNA and substances in the blood and urine of people with diabetes for 50 years or more and to look at genes that may affect the chances of developing diabetes, diabetes related complications, cardiovascular disease and longevity. After filling out a 13-page questionnaire, a 240-question personality test, I traveled to Boston for some testing. They collected blood samples which will go to a national repository which will allow other scientists to analyze the samples to help them understand how to provide better treatment for diabetics. They also used Optical Coherence Tomography (which uses a laser beam) to measure the thickness of my retina and determine if I have diabetic retinopathy. (Diabetic retinopathy is the most common diabetic eye disease and a leading cause of blindness in American adults. It is caused by changes in the blood vessels of the retina. In some people with diabetic retinopathy, blood vessels may swell and leak fluid. In other people, abnormal new blood vessels grow on the surface of the retina. The retina is the light-sensitive tissue at the back of the eye. A healthy retina is necessary for good vision.)

A scientific paper was presented in June of this year at the American Diabetes Association 66th Annual Scientific Sessions in Washington, D.C. regarding the initial findings of this study. The researchers are finding that some of the medalists still have pre-insulin cells being produced by their pancreases. This could be a great breakthrough. Overall, the study opens new avenues for research and treatment of Type 1 diabetes. Dr. George King who is heading up the research says “The findings suggest that many patients, even after many years of diabetes, may still have some residual islet function. If a way can be found to stimulate islet growth, doctors could improve their patient’s diabetes and reduce insulin usage or better control blood glucose levels. If the islets could be returned to normal levels, the patients wouldn’t have to take insulin.” And for me, that would be the cure I have sought for as long as I can remember.

For more information on the study and its participants go to http://www.joslin.org/Action_Medalist.asp

Steve Meyer
smeyer@volkert.com

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Steve,

Thanks for sharing your story. I'm a parent of a child with diabetes. My son is now five-years-old, diagnosed in severe diabetic ketoacidosis (DKA) when he was 18 months old, undoubtedly, the worst day of my life. He's been on an insulin pump for almost three years, and now he doesn't miss a beat.

My heart goes out to you, and also to your parents for what they went through in an era of more limited understanding and medical resources.

Thanks also for all you do for the community in terms of diabetes awareness. You are very inspirational.

Carolyn Davidson
cdphd@comcast.net

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After Alive and Well was published I received an email from a reader who referred me to a web site where a mother had a terrible loss her son after trying to assist him with his
diabetes. (The site is at
http://forums.childrenwithdiabetes.com/showthread.php?t=347.)

And I was asked...."What do you tell that mother?" There is not much I could say. I feel terrible for her and feel sorry for her loss. I did not mean to minimize the effort
it takes to manage the disease, or that ALL children would be able have the desire I had to manage it.

But I would like to mention that we are a lot closer to a cure for Type 1 diabetes than we ever were when I grew up.

Then there was absolutely no hope. Today, because of stem cell research, there is a strong potential that a cure will eventually be found. For many it won't be soon enough.

For the last two years I have been actively involved in supporting researchers in the field of embryonic stem cell research. There is a web site called Stem Cell Information
that has over 6,000 articles posted on stem cell research and politics from around the United States and around the world. The URL is
http://tech.groups.yahoo.com/group/StemCellInformation/.

For those of you who would like to participate more actively in supporting stem cell research you can go to
www.stemcellaction.org or http://www.stempac.com/

Stephen Meyer
smeyer@volkert.com