Wisdom of folks who have had type 1 an extraordinarily long time

I would like to talk with folks who have had type 1 for over 60 yrs. There is Richard and Dr Bernstein and I used to know another person who had it for over 60 yrs but he recently died. I haven’t communicated with anyone else who is a very long timer. I would like to know what kind of complications they have had, what they eat, how high their A1c’s are, how variable their glucose readings are and how much exercise they get. I know that there are folks who have lived with diabetes for over 80 yrs, but I don’t know any of these people. I think it would be very interesting to talk with them.

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I’m in the 50+, not yet 60.

You may want to check Joslin site, there may be facebook groups, or attend the bi-yearly meeting they have.

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Thanks MM1. I will check for information there. I have never been interested in getting the award, but it would be a good place to meet other long term diabetics.

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Here is link to Joslin medal info.

https://www.joslin.org/medalist/program-background.html

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I’m 49 years in. Not a low carb person, just a balanced meal plan. You know getting a little of all food groups. Do I have reduce carb amounts, sure it’s all based on my blood sugar. But I have no problem sitting down to a big burger and fries or a couple slices of pizza. I have learned for many of this high carb high fat meals, it’s all about timing of insulin and what kind of extended % I use and for how long.
I ran A1c’s when they first became available in the low 8’s. As more knowledge entered into my treatment plan they started coming down. I am very happy in the 7ish range. Last year or so been in mind 6’s.
And happy to say no complications. Just had my yearly eye check and kidney check, all good. Hope to keep that track record going !

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If you can wait until June next year, I will hit 60 years with type 1.

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Sally I didn’t get heart stents until 10 yrs ago at 50 years in. Nothing, nada and then heart stents. I was shocked. My A1c was 4.7 at the time. Very glad you are doing well at 49 yrs. At 60 yrs in I have no other complications.

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Over 40 years here with very mild retinopathy (stable) and peripheral neuropathy (not so mild). Also had 2 trigger fingers–both fixed perfectly. A1’cs were awful for over a decade, but run 6.0 for a while now. That’s about it for diabetes related stuff. Cancer more likely to get me than my diabetes…I haven’t figured out a way to get out of this life alive. :slight_smile:

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Not me.
But I want to say I admire you all!
Kudos to everyone!

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Hello Marilyn (my sister’s name) and others. I am 73 yo and been diabetic for 65 years as of last April. Overall I would say things have gone pretty well for me. I have lived an otherwise pretty normal life Back in 1954, I (actually my mom) started with boiling syringes and needles. No blood testing, just a few drops of pee in a test tube with a pill which dissolved and came up different colors depending on the sugar level… Fortunately by the time I went away to college we had disposable syringes and pee’d on a small stick. Back in the 90’s my endo said I had good A1c for being on MDI. I developed diabetic retinoopathy in early 80’s. Fortunately I lived close to a retina specailist who could do lase treatment on my eyes. I had more laser treatment now and then for the next ten years until the doc said there was no more room to do my eyes. But I still have clse to 20/20 vision in my right eye and 20/40 in my left - which I had since before becoming diabetic. I do have some peripheral neuropathy but not serious. I had bypass surgery in 2005 and again doing fine. I still enjoy biking with my wife. Anmy where from 10-20 miles. I also work out regularly a the Y with weights and on machines. A1c is still in the 6’s. I have been on a pump for about 15 years now and relly love it I have been using a Dexcom cgm for about one year. The end of this year my 5yrs,. will be up on the pump and hope to go with a pump/cgm (Tandem?) If you have more questoins just let me know.

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Hi Broken, your experiences with diabetes as a child sound so much like mine. I was dx in 1959. Sounds like you are doing well. So glad that your vision is still quite good.

Good for you for getting a good amount of exercise. Are you following any kind of special diet since your bypass surgery? Did you have a history of heart disease in your family? I received two stents in 2010. My grandfather died of a heart attack when he was in his 60’s. I wish I knew if I should blame my need for stents on family history, my previously high LDL readings, hypothyroidism, severe stress, or the fact that I already had had diabetes for 50 yrs. Probably a combination of all these things. Since I had had no other complications of any kind, I still feel rather amazed that I needed stents.

I am just curious about how other long timers are doing. So glad that you are doing well. Thanks for answering my post.

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Marilyn, No history of heart disease in my family. I felt discomfort in my chest and went to the MD. He said it could be digestion related by started with my heart. Had a stress test and then went in for angiogram and possible stent. BUT, since blockages were in places they could not put stent I needed bypass surgery. All went well and I had quadruple bypass surgery. All went well. As I often say: I slept through it all. lol. Of course put on various meds including metoprolol, lisinopril, aspirin (4 x 81mg) and atorvastatin (20mg) . My cardio says my numbers all look good (cholesterol below 150) and I am active as I said. Only diet instructions are low fat. Nothing that restrictive. Oh, I did have a stent placed several years back in a very small artery which they did not have that small back in the beginning.

As I have written online before, my approach from the beginning has been - I do my diabetic thing (tests and shots) and then do what other kids/people do - obviously just restricting what I eat which has never been a big deal for me.

Ken

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I eat low fat too. Since I retired, my diabetes health has been more focused, and sometimes I think I am too focused on it. I get a lot of exercise. Can’t take statins cause they all cause side effects which make me miserable. Glad that you can take them. Sounds like you have lived well with diabetes, I usually figure it just is what it is and get on with life. Oh dear, my dear husband would probably laugh at my last statement.

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I am only 46 years old it’s impossible for me to have had it that long. I was diagnosed at 3. I cant imagine another decade or ten is going to change much. I have always had it. I think the best wisdom is keep that a1c as low as possible. I think you’ve done really well Marylin, you’ve kept your really low for along time. I guess the aim of the game is dying from something other than diabetes complications.

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Well, Dr Bernstein had very serious complications, and many, and he has reversed most of them over a period of 40 odd years of normalized blood sugars. There are a couple of things that he has never been able to revers - I believe his somewhat droopy eyelids are the result of prolonged elevated blood sugars, as are hairless calves. I ‘believe’ I am right about this and I am also sure that these symptoms are the result of complications with ‘real’ names, but I just can’t remember. :smile:

I love the concept of the pump, but in practice it was difficult to get good hba1c. It was hard to get under 6 on all 4 of mine. I went back to MDI to get my a1c down to 5%…

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Hi Marilyn,

I’m just at the 60 mark now, unless you count several more years where I very likely had diabetes and wasn’t aware. I’m also not sure I have type I because for perhaps the first year I took some oral meds. But they quickly stopped working and I went on insulin. I was originally diagnosed when I brought in a urine sample in an old, glass jelly jar. They asked me if I had cleaned it well and then I knew this was for real!

I believe the yellow Testape was available from the beginning. It wasn’t until 1976 that I got Richard Bernstein on the phone. In January of '77 I got my first “Eyetone” meter. Don’t recall when A1c results were available, but I hovered in the mid sevens much of the time since. For the past two years I have been on a very low carb diet and my latest reading from last week was 5.9 It’s been in the 5.9 to 6.1 range for these two years.

I have very few complications that I can relate directly to diabetes. I have some eye problems, but not diabetic retinopathy. The soles of my feet feel a bit “crinkly” when I wiggle my toes, but I can pass the whisker test for sensitivity. So if I have neuropathy, it’s pretty mild. I have some muscle stiffness locally around my hip, which I understand may be more common in diabetes.

I’m currently using the Freestyle Libre and that helps with control. I’m interested in the Eversense implantable sensor when it is approved by Medicare.

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Hi, send me a PM and l’ll be happy to correspond with you. I was diagnosed in May 1957. I’ve been at it 62 years.