"Experienced" T1Ds

I was diagnosed T1D in 1965 when I had just had my 14th birthday. Fifty-five years later I count myself as incredibly lucky that I still have relatively good health and am enjoying life. I’m curious to know how other long-termers like me are doing.

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Well hi @jdjim good to see you back here. I was diagnosed in the late 70s so you got a couple years on me but we have some truly extraordinary people here too. So I have a little over 40 years experience and I also have “reasonably good” health as well. Great to hear you are well and happy. Cheers!

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Hey there - I was diagnosed 2 years before you and am working on getting my Joslin medal/pin/badge - I can’t recall what I’m supposed to get but I’ve got something coming to me🤣! I’m waiting on a letter from my cousin who recalls when I was diagnosed.
Have you applied for yours?

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I have not applied for that, but I will look into it. I did get the 50 year diabetes journey necklace from Lilly a few years ago.

Hi @jdjim, too few members who use this site bother to complete the set-up and place a complete profile on-line for anyone to make a guess at the number of “long-termers” like yourself. Your public profile only shows a user log-in name “jdjim” and doesn’t even include a name by which we can address you.

My guess, to answer you query, is to say that there are well over 100 members on this site with greater than 50 years living with diabetes; several personally known to me. There is one regular poster here who recently received his Joslin 75-year Award.

Thanks for the heads-up about my profile, or lack thereof. I just updated it.

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I was diagnosed in 1945, when I was 6. Now I am 81 with type 1 for 75 years. I have peripheral neuropathy in my feet and legs, and autonomic neuropathy in my torso. They are annoying and my muscles are weak, but I think that may partially due to my age. I do not have significant pain. I use a pump and CGM, and I have good control. My eyes, kidneys and heart are in good shape. I have been very lucky!

There are many long term type 1 diabetics who have no serious complications. I know many of them in “The Joslin Medalists” group on Facebook. If you have the Joslin 50 year medal, you can join that group.

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I was diagnosed in December of 1960, so I’m coming up on 60 years (I’m 73). I’m in pretty good shape: no retinopathy, no neuropathy, no other diabetes-related 'opathies. My A1cs are generally in the mid-6s; I’d like to get those down a bit, but if I can’t, that’s still pretty good.
When I participated in a study at Joslin a few years ago, they were trying to figure out why a substantial number of us Medalists (folks who have received their medals for at least 50 years on insulin) can be so healthy. I don’t know any of the results from that study, but apparently some of us do pretty well after a long time with this crazy thing! I should contact the Joslin people and ask if they can send me anything on the study.
I remember when I was diagnosed at age 13, my father (who was a positive individual and wanted me to approach this new unknown thing as positively as possible) told that with the new technology and medicines that were being developed, I might actually be able to live until I was 50! Hey, Dad: I made it!

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Hi, I was diagnosed in the summer of 1964 at age 2 1/2. I also consider myself “one of the lucky ones” as I have no complications. I also have my 50 year medallion from Lilly, but I have not sent in my Joslin paperwork yet (I’ve been procrastinating on that one for several years now!).

Pam K
56+ yrs and counting!

As far as how we can be so healthy after so many years, in my case I credit genetics. I had a great aunt who lived to 112; my dad lived to 82 and would have lived longer had he not developed pulmonary fibrosis (don’t know why). My mother was 94 when she passed a few years ago and one of her sisters passed in her early 90s as well. Most of my other aunts and uncles lived to their mid 80s. Only one had diabetes and he was Type 2. I believe it’s in the genes.

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After having my eyes opened to the Joslin program, I started my application but I had no paperwork from my initial diagnosis back in 1965. I even called the hospital but was told no records are available after 10 years. I left a message with Joslin as to steps I can take but haven’t heard anything so far.
Jim

@jdjim, secondary evidence, such as a letter from a sibling, cousin, other person with whom you were close at the time of diagnosis has ben accepted.

I was diagnosed in 1963 so who knows where my records are. I sent an email to Joslin to see if my current physician could write a statement [which of course is based on the info I provided] in lieu of medical records, and they replied
Your doctor can write a statement or send medical records if they include a date of onset or age you were diagnosed written on them. Either will work.
A second option from the firm was to get recollections from people who remembered. One of my cousins did and I’m waiting on her to send me a letter. You only need one of those but since I was diagnosed in 1963 I thought it would be good to have two.
Good luck!

Good to know! Thanks, Dennis
Jim

I’ve had T1 x47-yrs. everything going very well as far as diabetes but def feel age type stuff even non-T1 feel. :grin:. Eyes perfect. Kidneys, feet, cardiac too. I exercise daily and eat very healthy. Insulin pens and finger sticks. Former dexcom user. Used pump years ago too. Stay strong!

Hi
It’s been while since I’ve joined in. I was diagnosed in May of 1971 just after my 16th birthday. I’ve done reasonably well and the new technology has sure made life easier than checking urine samples and praying that it didn’t come up orange. At that time one shot a day was all that was recommended. Who knew!.

When people ask me how long I was saying almost 50 years but they think I am saying 15 so I’m saying 49 and then I’ll switch to saying 51 :rofl:

I’m on a pump and have been for over 20 years. I’ve been treated for retinopathy with good success but it’s always in the back ground.
I’m a retired nurse and my life is busy helping taking care of my grandchildren, gardening and traveling (which my husband I and really miss right now).

Life with T1D is not always easy and the ups and downs can make you cranky, sad, mad, and t times complacent. Sometimes you just have to let it all out.

I think i will look into the Joslin longevity program. I live within the health care grouping in the Boston area from when I was diagnosed.

Take care everybody and wear those masks! Hopefully we can start booking trips instead for just planning and wishing.
Anne

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T1D summer 1963. Luckily diagnosed after spending X weeks losing weight, voraciously hungry & thirsty yet losing weight. Had to get a doctor’s complete physical for upcoming fall semester of high school soccer team sports. Bingo!

P.S. i have never really remembered what my blood glucose was – in fact, it’s unlikely my general practitioner family doctor even needed a BG test, when all I know is that I (all of us) used urine reagent tablets in tiny test tubes. After some seconds (30?) we compared the resultant color of the water-urine solution to a tiny unfolded paper color strip. The index number of the nearest color match was written on the blank log chart. Was it every day? Twice a day? Every other day?

And for this “invitation” to share our “origin stories” I think I’ll stop my recollections with that aspect of my “juvenile diabetes”.

Medtronic pumps since 1998, currently 670G in ‘dumb mode’. Dexcom G6. UPenn Rodebaugh endocrine practice :–)

Human Islet Cell Transplant 2002–2004 clinical trial participant (yes, beta cells failed gradually), unbelievably great experience!!

Minor peripheral neuropathy unchanged past 20+ years; no retinopathy or heart disease; CKD side effect from colorectal cancer treatments.

Co-creator with a dozen or two AOL private chat room diabetics we called “Camp Lobegone” (back then a very marvelous popular weekly really really RADIO program out of Minnesota Public Radio).

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hi @WBellJDRF Welcome to TypeOneNation!

RuthC Member with T1D
Reading the above entries gives me hope of many more years with Type 1. Diagnosed at age 26, with coma and blood sugar of 1739. Now 72 so 46 years T1. Lost my sight until sugars came down. Came in so dehydrated no veins could be found to start IV. Sight returned and no eye, heart or kidney damage at that time. Now CKD and gastroparesis but doing well and retina exam this week shows no damage.

Ruth, congratulations for overcoming such a rough start and doing things right for 46 years! I was diagnosed the day after my mom drove my sisters and I from Cincinnati to Gulfport, Mississippi. I vividly remember that car trip from hell! My thirst was unquenchable and I probably peed behind half the trees along the way because there just weren’t enough gas stations. My mom called my dad from pay phones with condition updates and I was hospitalized the day after we arrived on the gulf coast. 55 years later, I’m amazed how well I’ve done with T1D, even though I’ve not always done things right.

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