Laura, when urine testing were you also really watching what you ate, so that you were in good control? Many doctors at that time did not emphasize tight control. My doctor said that if my urine turned blue once a day then I was fine. I did not think urine testing was detrimental at the time, because that is we all had to work with.
Luckily the tighter control I could achieve with blood testing reversed my retinopathy, but other damage couldn’t be reversed.
I hear my story over and over again. I am not familiar with how other people with diabetes is other countries, with only urine testing, have fared.
I think people either ended up with complications or didnt. No one the same. I have a friend who lived on NPH and regular for years, type I since 1948. Not very many issues, at least up to the last time I heard which was maybe ten yrs ago. I had another friend who lived to be 80 something, and died from Alzheimers. I have seen stories in online forums where doctors are telling kids they will lose limbs if they don’t have an extremely low A1C. I’ve heard conversations from people stating all type I will lose limbs and eyesight. Things can happen sure but I mean really???I have never seen any long time diabetics discussing complications. Rather they discuss their accomplishments. In the end, why analyze what did or didn’t happen? (Oh and in referring to other countries I’m saying they do not all have pumps, meters, CGM etc.) They still live ;-).
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This is the only diabetes site I have ever been active on. No, I take that back, I was active on the Bernstein site while I was low carbing.
I don’t understand, don’t many diabetics do better with lower Alc’s? Maybe we don’t actually know for sure.
I would dearly like to know how some diabetics escape having any side effects. I have heard that before. What is different about those type 1’s who escape complications and those who really work at avoiding complications but get them anyway? It must come down to more than good luck.
I tend to be a realist, so I am going to inquire about complications.
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Thank you, but I’ve lost interest in the Joslin medal because there are no records confirming I was diagnosed in 1957. I’ve researched and the rural doctor who diagnosed and treated me in by younger years died and his records were destroyed.
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Kathlyn1, a few years ago, I talked with someone at Joslin who told me that a friend and a relative, who knew me when I was diagnosed, would be enough for me to qualify for a medal. My doctor died decades ago and I never had any medical records.
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The hospital where I was diagnosed in 1965 burned down, with all records destroyed. My parents documented the date and details of my diagnosis. They specifically remembered the date because it coincided with a holiday and thankfully my Grandparents were visiting, caring for my siblings and allowing my parents to be with me. I was in hospital for 10 days, and my only treatment was a daily injection of lente. It was many years before a meal time dose was added.
So you can certainly still get medal if you want.
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I got the two Lilly medals with no proof, did not try for r tho.
I’m super sensitive to insulin. One unit can drop me 200 points. Never had a great A1C but, I have never been in the hospital, never needed assistance with lows and so far retinopathy and some neuropathy has been all I deal with. The podiatrist actually said my feet are worse from 25 yrs of ballet, than from diabetes. Gnarled yucky toes…lol. Blessings as you deal with this condition!
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52 years here come September. I am interested in such a group as well. Would we call it the “Not dead yet group” (facetious grin)? I go to Joslin, but the medalist thing, it seems like they wanted records from when you were first diagnosed. I called the hospital I was first diagnosed at, and got no response as to the whereabout of my medical record from September 1969. Probably the round file or the burn pile. I need to look at the requirements again!
@Kathlyn1, my doctors had also died when I applied for the 50 year medal. I was told that people who knew me when I was diagnosed could write letters telling what they remembered about that year. My sister and a cousin sent letters and they were accepted as proof. I received the 50 year medal. Joslin keeps the records and sends the 75 year medal later on without you having to reapply.
I wrote a blogpost many years ago about the Joslin Medalists. The original group of medalists were fairly unique and Joslin has been studying what has distinguished them from their peers who did not live as long or in as apparent good health. I am currently at 44 years with Type 1 and I am not “unique” because so many of us are living in relatively good health with and despite longterm T1 diabetes. One common characteristic of the original medalists is that they liked to dance!
I was able to enroll in the Joslin Medalist program about 10 years ago. My local hospital still had my 1976 hospitalization records on microfiche. I got a 25-year medal from Lilly but only a 25-year certificate from Joslin. Once again too many of us to warrant a 25-year medal! And isn’t that great!
In 2014 I wrote a blogpost sharing a letter that Tom Beatson of Phoenix wrote on his 72nd anniversary of Type 1 diabetes. He was an incredible guy whom I was lucky to know both in person and online. My blogpost shares a link to an interview that Tom and Richard Vaughn (still a member of this forum!) did with TuDiabetes in 2012. Tom passed away shortly before receiving his 75-year Joslin medal. To put it in perspective, Tom was diagnosed a year after Pearl Harbor.
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Here’s the link for the TuDiabetes interview with Richard Vaughn and Tom Beatson.
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Love all of you! Great responses! I don’t need a medal either, could care less…but love Marilyn6’s answer! I am one healthy, active Type 1, but becoming mentally irritated and frustrated with the robotic technology. Diabetes never, ever controlled my life and now it is. Type 1’s aren’t stupid! We know the game. I’ve been on the pump successfully for 25 years, but the latest and greatest inventions are controlling me. And Type 1’s hate to be controlled. Right?
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Thank you. There’s no one left to contact. I am 73, an only child, both parents and all relatives are deceased. Also I was not treated in a hospital. Just went to the MD every morning for a month or so for a fasting glucose test. Started out on 10 units of insulin and remained on that for years.
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It seems to me that you could tell the Joslin people about your situation, maybe write out the details of how your diabetes was diagnosed and still get the medal if you want it. Hard for me to believe that people are lying about living with this difficult disease just so they can receive a medal.
It makes me a little bit angry to think that I would have to prove that I have an illness that almost killed me. Maybe it is a good thing that the medal doesn’t interest me.
I do have a friend who has gone to Joslin a couple of times to give them blood, to help figure out why some folks with diabetes live so long. I would find that worthwhile.
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Just call the number on Joslin website and tell them the same. Its likely they will accept documentation from your current medical team, and trust your word on year/date diagnosed.
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I wonder why I didn’t get more complications, I was flying blind for 10 years. Barely tested back then. Wasn’t until I was off nph and on ultra Lente and regular taht I started getting control.
Then pump changed again and then cgm.
I’m not even sure if I have complications.
I have mild duputrens in my hands but so does my whole family and I’m the only diabetic.
I also had frozen shoulder, but don’t know if that’s diabetes or from a high school injury.
Otherwise my eyes are fine, kidneys are perfect. No heart disease to speak of. I have low ish blood pressure.
Cholesterol is creeping up but I’m taking a plant sterol which blows my mind. Cholest was 180, now it’s 92. LDL was 90 and now it’s 45. Doctor told me to half my dose.
My siblings had similar progression low cholesterol until mid 50s.
So it seems genetics play a big role. Maybe diet and tight control play a role.
I feel better when I’m in range. I love exercise.
So I’m hoping my early years didn’t hurt me too much.
34 years, and counting.
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Thanks for response, your definitely a success story!!
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It will be 58 years in 2 weeks for me since I was dx’d with T1. I attribute my minimal complications to daily exercising, although after 48 years of running I switched over to biking and weights, for better body fitness. One standout moment was when I received a personal letter from Medtronic stating that as a T-1 and at my age I shouldn’t be running in their Medtronic Marathon. I ran anyway.
I do have the Joslin 50 medal hanging in my office to remind me of what I’ve been through with T1 when my days/nights don’t follow logical BG corrections.
When I was dx’d my parents were told not to expect a long life for me. I’ll be 80 next year.
We all have our stories.
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It’s 62 years for me. Around 12 years ago, my endocrinologist asked if I was interested in a Joslin 50-year medal. I said that I didn’t have any great interest in a medal which would probably wind up in a drawer. When I looked into what the verification requirements were, I found that the diagnosing doctor was long gone, and the hospital that I was set up in was torn down long ago. I had no written verification, so, no medal.
But I think it’s much more important that I know of no noticeable complications from 62 years of type 1, at 78 years old, and feel fine today after playing a round of golf yesterday, walking and hauling a heavy golf bag. I will not furnish a score, only that I got a lot of practice!
If an ancient Type 1 group is established, I’ll join in.
Dave
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