Good Health After 72 Years of Type 1, How Is That Possible?
In one of the diabetes support groups I was asked if I attribute my good diabetes health in my early years to my sugar free diet. My doctor, when I was diagnosed in 1945, told my parents that I should not eat anything sweetened with sugar. That was the only advice I had to follow for many many years. I was scared of sugar, and I followed that rule very carefully. We thought that as long as I avoided sugar, I would be fine! There was no mentioning of possible diabetes complications. There was no stress during those years, just aggravation with the lows I would have when I exercised too much, and the occasional seizures I had while sleeping. My mother prepared wonderful desserts sweetened with saccharin. I did not feel that I was missing out on anything important. I did eat a lot of food that had fast acting carbs, but I did not know that carbs had anything to do with diabetes until 1988. I think that avoiding sugar did help, but all the bread, milk, cereals, fruit and those desserts mother prepared were causing very high urine sugar. Those foods did not contain actual sugar, so we thought they were okay for me.
I did not have a meter to measure blood sugar until the mid 1980's. That was 40 years of not knowing my BS (blood sugar) numbers. I felt very good, and was very healthy, with no diabetes complications. In 1970 I saw a diabetes specialist for the first time. I was given a blood sugar test when I arrived at his office building. They were able to do an in-office test on the blood sample without having any device like we have now. When I entered his office he told me my BS was very high. I was given a book on diabetes. The book showed that my life expectancy was not good, and that I might not live beyond my 40's. That was the first time that I was depressed, and actually scared of my diabetes. I was so healthy after 24 years of diabetes, and there was an estimated 10-20 years of life left for me? We had two boys at that time, one less than a year old, and the other 3 years old. I thought I might be leaving my young kids without a father, and my wife having to support them. I did not sleep much that night.
We moved from Virginia to New York that year, and I started teaching math at a community college. Life was great, and we loved New York. I had tossed the book on diabetes, and it was of very little concern to me then. I had no worries about dying in my 40's. Well, maybe a little, but I did not discuss it with my wife anymore. We were making mortgage payments on our home, and I thought we should have mortgage insurance. A local insurance company had me see a doctor for an examination. He was a very old, retired doctor who saw people who wanted insurance with that company. The doctor told me to pee on a test strip in the office bathroom. The strip was a very dark green, almost black. That indicated very high urine sugar. I had been using strips of that tape for many years at home, and the dark green color appeared very frequently. The doctor said he could not approve me for the mortgage insurance. That decision was made based on one urine test. Really? So ridiculous! The doctor followed me to my car, parked in front of the building. He told me about a former patient who had very good health with diabetes, and then the following year he had terrible kidney problems and died. The doctor said that blindness and kidney problems happened with that patient in that year. He told me that I should prepare my will ASAP. He knew I had a wife and kids, so I suppose he was actually giving me good advice. I told Anita about my day, and we did not let it bother us very much. The earlier experience with the previous doctor made coping with this situation much easier. The next day I visited the local office of Metropolitan Life insurance. They got word from my local doctor, and realized I was in good health, with no diabetes problems. My mortgage insurance was approved. Our mortgage was paid off in 1995, and I was still healthy, with no complications.
I have often wished that I had not seen the doctor in Virginia, and that Metropolitan was the only insurance company that I asked for mortgage insurance. Things would have been so much better!!
Now I am 78 years old, with 72 years of type 1. I have some neuropathy, and my neurologist says it is severe. I feel some numbness in my feet and legs, but very little pain. I do not need any medication, so I do not think it can be severe. A misdiagnosis? I take long walks and workout at a gym, with no problems. I do not consider my neuropathy to be a significant problem. I do not have any other diabetes complications. I am no longer depressed about my diabetes. I have a good outlook, and am very optimistic about my future.
So what has caused me to live so long, and have such good diabetes health? I do think good genes has a lot do with my good health. There are many long term type 1 people like me with good health. Some of them have lived 75-80 years with type 1. Most of the 1000 participants in the Joslin Medalist Study have been found to have good health after 50+ years with type 1. I participated in the study in 2009, and again in 2017 I attended a Joslin Medalist meeting in Boston in 2011. Dr. King, head of the Study, announced that many of us have a special inner protection that helps prevent problems with our eyes, kidneys and nervous system. He also said that our hearts are not protected in that way, and that we should be very careful with our hearts. I had a nuclear stress test two years ago, and my heart is in great shape. Will this last for many more years? Dr. King and his research team are still looking for the source(s) of that special protection that so many of us, and so many of you have. If the source is found, maybe it will provide some kind of treatment that will prolong the lives of young type 1 diabetics, and enable them to live long healthy lives.