Saturday, April 27, 2019

Keeping My Diabetes A Secret....

When I was diagnosed in 1945, I was not actually ashamed of my diabetes. I did not realize what was happening. I was six years old, and my family was in charge. Later on it was obvious that people we knew were totally oblivious, they had not heard of the disease. Our relatives, neighbors, my teachers, and my classmates in school could not understand what was involved. People would stare in disbelief when I tried to explain my diabetes. Of course, explaining was very difficult since neither I, my family, nor my doctors knew much about it. I could not explain the highs and lows, DKA, carbs, and the possible complications since I knew nothing about them for so many years. My doctors gave no information except that I should take a shot of insulin each morning, and not eat sugar. It seemed like a simple disease back then. I got tired of seeing the doubtful looks on people's faces, and I kept my diabetes a secret for a very long time. My mother went to my school on the first day of classes for seven years, and had private talks with my teachers. Those teachers had not heard of diabetes, but I think they believed her. To prevent low blood sugar, I was not permitted to participate in gym or on the playground. I felt like an outcast, and I was ignored by my classmates because I was so different. I became shy and withdrawn. That was the most complicated part of my diabetes during my early years.
In high school I was more mature, and I had less trouble with it, so I opened up with a few friends. I did not talk to my teachers, but I did not have lows during school hours. My blood sugar was high almost all the time, but I did not have any DKA, or did I? I don't think there was a way of measuring ketones at home, and there was no glucose meter for my first 40 years. In college I talked to some of my teachers, and they actually listened, somewhat. I had friends who were concerned, but they did not understand this mysterious disease very well. I didn't either, at that time.
When dating I did not tell my girlfriends about my diabetes. It was not necessary, and I was afraid that they would not want to date me if they knew. I did not have lows, so that was okay. My lows occurred during the night, at home, or when I had too much exercise. After college I told my dates about diabetes, and they were interested. They listened, and wanted to help! I married one of those young ladies, and she has been a tremendous help to me for almost 55 years!!! Anita has helped me through many lows, including several seizures. I think she has saved my life several times.There were glucose meters in the mid 1980s, and I finally knew my blood sugar numbers. I learned about carbs in the late 1980s, and started basal/bolus management in the mid 1990s. My A1c's dropped from a high of 12 into the high 5's over a period of several years. How I have managed to avoid serious diabetes related complications is a mystery to me. I was not taking good care of myself for 50 years, because I did not know what 'good care' was. Now I am taking very good care of myself. My using an insulin pump in 2007 has eliminated my needing any assistance with lows. I am also using a Dexcom CGM, which is very helpful.
I am not at all shy and withdrawn about my diabetes now. Maybe I am too open? I do not hold back because many online people tell me that I offer inspiration and hope for themselves, or their type 1 children. That is why I chose to be a speaker at the Friends For Life type 1 conference in 2015, in Orlando. I am scheduled to do that again this year on Wednesday, July 17.
My life with diabetes is an open book. I actually did write a book about my life with diabetes. It was published in 2010, and it describes my first 64 years with type 1. Here is the link:

Friday, April 12, 2019

Diabetic Seizures

Throughout my early years as a diabetic I had no major health problems, and I coasted along rather easily. I was always very skinny, maybe slightly underweight, until many years later. I had high urine sugar during the day, and usually at night. There were, however, some nights that I had very bad hypos. My bedroom door was always left open at night, and my room was immediately across the hall from my parent's room. Mother was keyed in to my thrashing about, and the moans I would make when having a hypo. She would jump out of bed, and grab a glass containing several tablespoons of sugar. She stopped at the bathroom, partially filled the glass with water, stirred the mixture with a spoon, and entered my room. Daddy raised my body, sat on the bed behind me, and held me while Mother slowly poured bits of the sugar water into my mouth. This usually worked very well, but occasionally my mouth was shut so tightly that she could not get any of the liquid into my mouth. Some of these hypos were very bad, and they became seizures. It took a long time to get me to the stage that they could get me to drink some of the sugar water. She would rub some of the liquid on my lips, and I would lick my lips. This gave me just enough sugar so I would start to relax, and then she could get me to swallow some of the sugar water. I would come out of these seizures, not remembering any part of what had happened. I would clinch my muscles while having a seizure, and there was much soreness for days afterwards. I ground my teeth together, and there was damage to those teeth that is still present today. I have read that some people have bitten off parts of their tongues during a seizure. I am glad that never happened to me. I was always so grateful that my parents took such good care of me at those times. Our family home back then was north of the city of Roanoke, Va. The nearest hospital was far away. An ambulance would have taken a very long time to reach us. That is why my parents needed to handle my seizures without additional help.

I have no idea how many of these seizures I had before I was an adult, but I know there were many of them. I attended local colleges, and lived at home during those years. I did not leave home until I was 23. My first full time job was teaching math at a college three hours from my home. I met a young lady named Anita there. She was a sophomore. Teachers were permitted to date students at that college back then. We dated during my first year of teaching. We were married in 1964 after only seven months of dating. Maybe that was too hasty, but it has worked perfectly. We have had a wonderful marriage for 54 years now. I had a few seizures after we were married. Maybe two per year. They were not as frequent as they were when I was still living at home. Mother had instructed Anita on how to care for me during a seizure. Anita handled my seizures perfectly. She remained calm, and used the sugar water treatment just like mother had done. I think it was in the mid 1980's that I had my last seizure. There was one that was very bad, and I was hospitalized. Anita had not been able to bring me out if that one. That was the only time that I was hospitalized with low blood sugar.

In 1980 I had my first A1c testing, and in the middle of that decade I had my first meter, Finally, I could measure my blood sugar at home. I learned about carbs and the effect on blood sugar, and my diabetes management improved. My seizures occurred during my first 40 years after diagnosis, before all this new knowledge, and having a meter. If we had a meter for testing, basal and bolus insulins, and carb counting during my earlier years, things would have been very different. There would have been less serious hypos, without the terrible lows that caused seizures.

I know that some of my Facebook friends have had seizures soon after diagnosis, while learning how to care for themselves. I have read about children having seizures, and their parents giving them the needed care. This results in trips to the ER on many occasions. I have joined several parents groups, and have read about the problems that occur with child care, with diabetes. I have been welcomed to those groups since I was diagnosed when I was 6, and have lived with type 1 for 73 years without any serious diabetes complications. When parents hear about my past, they realize how much better things are now. That gives them some calm, and peace of mind. It is still very difficult to manage a child's diabetes, especially soon after diagnosis. I am glad there is so much knowledge today, knowledge that was not available in the past. That knowledge, and the devices that are now available, makes diabetes management so much better.

There has been some speculation that seizures can cause brain damage. I have not had that problem. I had a college education, and became a math professor at the college level. I do not think seizures would cause brain damage, unless they were very severe. A seizure that resulted in a coma might cause brain damage.

Glucagon injections can be given at home in modern times. That is the best way to handle a seizure. You can get a prescription from your doctor for glucagon. This assumes that the seizures are due to diabetes, and very low blood sugar levels. Seizures can also be caused by other conditions such as epilepsy.

The following link from the Mayo Clinic gives very good information about seizures.

The next link gives a good presentation on diabetic seizures, and concludes with replies made by people who have seizures. You can add your own  case, or reply to the people who have posted there.

Tuesday, April 9, 2019

October, 2008....60+ Years Of Type 1 Diabetes

The American Diabetes Association was created in 1940, five years before my diagnosis. The ADA magazine, the Diabetes Forecast, began in 1948. In October, 2008 the magazine celebrated its 60'th anniversary. There was a search that year for people who had lived with type 1 diabetes for 60 years, or more. Eleven people were chosen, and I was one of them. The October issue had an article with stories and pictures for those individuals. A photographer came to my house in NY in August of that year. The pictures he took appear in the magazine. (See below.)
The most impressive individual in the article was William Rounds (1922-2010). William was diagnosed with diabetes in 1923, less than a year after he was born, and only 2 years after insulin was discovered. He was T1 for 87 years the year he died. He attended the Joslin Medalist meeting in Boston in 2009. I did not attend that year, but I wish I had. My first time attending the Medalist meetings was 2011, the year after William died. William's picture appeared on the cover of the Diabetes Forecast in the October, 2008 issue. (See below).
The link below shows the article with pictures and stories about the eleven individuals chosen for that issue. The stories appear in a jumbled arrangement, and mine appears on the left side of the page, starting with "Just don't eat sugar...".

For The Love Of Hypos

This is the Truth!!

Monday, April 1, 2019