Long term Diabetes Experience

Hello All:

I hope everyone is doing well. I haven’t been on here in awhile and tend to pop my head in and gain some support when my anxiety gets the best of me. :slightly_frowning_face:

Can I just hear some experience from those who have had type one for decades, how they are feeling cognitively, physically etc.? If you don’t mind sharing, how old are you, how many years have you had it etc? I have this new found fear that I won’t be able to take care of myself when I get older and it terrifies me. Thank you all so much for the support.


I’m approaching my 6th decade with diabetes and I’m 62. Doing okay - I have arthritis from living in a home on a terrace also since 1963. I had cataract surgery on my right eye in June but had to wait on the left one - healing is taking longer, which is not unusual in diabetics: while my vision is noticeably brighter following the surgery, when reading there were portions of the page that were not clear. I saw a retina specialist and the drops he gave me are working so I plan to have my left eye done soon. Most of what I’m feeling now is the effect of age rather than diabetes.


Welcome back Michelle @Mlp1124, and I believe that I can feel your concern as you age. Keep in mind that all of us, not just diabetes related, have your concerns somewhere in our thoughts as we got a little older. In my way of coping, I believe in keeping a more positive attitude helps - an “I can do this” sort of mindset. Staying as active as possible both in mind and body.

I’ve had diabetes since age 15 and now I’m 81. During that time period, I’ve had several health issues some probably related to diabetes and others genetic including being diagnosed with with retinopathy in 1966, cancer, probable congestive heart condition, broken bones, etc. I worked for over 50 years, a few times receiving “best attendance” award, retiring after reaching age 70 and then volunteering as a math tutor at a nearby college. I get out and walk every day about 5 miles and volunteer on “work parties” and on a farm - no more heavy lifting now.

Will I be able to care for myself? Well, the short-term is looking good but I’m not sure for how long. My eyesight is diminishing - again. For diabetes management I changed to the best iAIDs to help manage witch posts display in large type on my phone and now my only duties counting carbs and keying data - while selecting to best Profile for the days intended activity; making sure there aren’t air bubbles in a cartridge is concerning. But, this appears to be working; my TIR using the standard AGP graph is greater than 90% for 90 day periods with HbA1c in the middle 5% range.


I’m a junior here with only 40 years experience with T1, but I had big concerns with my cognitive abilities about 10 years ago and I thought diabetes might be contributing. I told my endo, and I had a blood work up and some additional tests done. In my case I was D and B12 deficient. The B12 deficiency can cause both mental and physical problems because a deficiency will cause nerve damage. I went to Walgreens, bought D and B complex on sale, and fixed it. It took 6 months to feel better. Now to tell the truth I am also getting old and there’s no fix for that but for what it’s worth, please talk to your doctor and follow up! I hope you are ok! :shamrock:


Hi Dorie:

Thanks for the response. I am glad surgery seemed to have made things a bit better but sorry the recovery was a bit longer than expected. I tend to worry about now being able to care for myself as I age. I watched a movie on Netflix too, Still Alice, that was super unproductive to my fears.


Thank you Dennis. I always said I wanted to be the oldest living women with type one diabetes and I hope that is the case but I get scared a lot. I have young children and I just worry about my future and what it may look like. Silly, I know as we can’t predict the future but sometimes the reality of this chronic disease is like a newfound slap in the face. I am happy to hear you are 81 and still walking and being active. Things like that are always really nice to hear so thank you and good job! I do not use a pump, I am too vain right now and too personal. Almost everyone who knows me doesn’t even know I have type one. I wear the Dexcom and manually inject. I also have the inpen which helps with my dosing etc.

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Hey Joe:

40 years is a huge accomplishment! Funny you brought up vitamin deficiencies because I tend to have low vitamin D which I have now started to retake my supplement again. I am glad you are feeling better. I am okay, just watched a movie that got me thinking about long term things and I am a worrier to begin with. Need to work on that as it is not helpful at all.

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That was an excellent movie. Lisa Genova - who wrote the story - is a neuroscientist and has written several novels Abbott life with different disorders of the brain. Left Neglected was particularly fascinating to me but - like the heart philosopher Sophia Petrillo - I digress.
I try to keep in mind that many or most complications can be managed if they happen at all - that was not always the case. And hopefully seeing our doctor on a regular basis means anything starting up can be addressed early. We have some control. Alice, sadly, did not.

Ah I guess you watched it as well. So sad.

Hi Michelle,

I’m happy to share! I am 60 years young and have been T1D for 58 years, plus a few months. I feel great! I have no complications, other than Hypo Unawareness, but my CGM is a tremendous help with that. I love going for walks and riding my bicycle and swimming. I am still working and plan to for many years to come. Also, my mother is in her 90’s and has had T1D for over 25 years. She is also doing great with no complications. She lives on her own and cooks her meals. She has someone come in once a week to help with the cleaning as she can’t bend down to clean the corners in her home. My hope, is that I can live as long, and be as healthy as she is!

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That is SO amazing to hear and so uplifting and exactly what I needed to hear. I know everyone is different but I hope I can have a comparable experience to your mother! Thank you for sharing.

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Hello Michelle,

I’m 65 and have lived with T1 for 48 years now.

I am still working - mainframe computers for a big bank - which keeps the mind juices flowing. For kicks, I’m teaching myself how to write apps for phones. I know; the geek might be taking over.

Health complications? Nothing serious at all. I do have a teeny bit of eye damage, both from a near-death hypo back in the early 80’s and now from typical diabetes related wear and tear. But no extra concerns required, just awareness.

As I live in Australia and CGM’s were recently provided to T1’s for a nominal cost of $38 per month, I recently got a Dexcom G6. It is life changing and shows me just what a dramatic roller coaster I’ve been riding for decades. It also explains the occasional waking up in hospital; but hopefully that’s a thing of the past now.

To answer your main concern, I have no dramas about getting older. Crucial to that in my always humble opinion is regular exercise. I used to walk ultra marathons, but now I just do a walk twice-a-day of 2 or 3 miles. I believe the regular exercise is crucial for anyone to stay healthy, diabetes or not.

You are wise to consider your long term health, but so long as you keep your body moving and your brain active, there’s no reason why you can’t still be here as long as your old school friends. Secretly I think we will outlast them, because we actually take note of our health, whereas they don’t have to.

Alex (of OZ)


Welcome! I’m closing in on 49-yrs, complication free. I understand your logical fear as aging gets everyone. As a single woman, I can certainly relate to anyone’s fears of what happens when/if.

This community is great. Reach out. Meet up with those in your area. Optimism is contagious.

Feel free to reach out directly if I can assist!



Hello. I am 57 and will have been Type 1 for 50 years in March. I don’t think I have any diabetes complications. I was born with an aortic stenosis and have my left ventricle replaced in 2007. Recovery went well. Almost great but I got a migraine the day after I got home and that slowed my recovery down almost a week. I learned I have had three strokes in 2018 when I had one at work and went in. I have no side effects from them. I was lucky again. When I was diagnosed, the next 3 years I was in the hospital once a year, due to being in a coma. My parents heard me moaning and couldn’t wake me up. Long before CGMs and insulin pumps. My eyes seem to have just normal changes due to age, but are still very good. I exercise almost daily, riding a bike, year round in MN. I also swim laps in a pool in the cooler months. I heard years ago, if you can get past 15 years without a diabetic complication, you are likely to do well. I don’t know if that is true, but I believe it, cause it has been true for me so far. I haven’t always been the best diabetic, but I have always tried and now that testing is no longer a chemistry set, I do test frequently. I am more concerned with normal getting old issues and taking care of myself. Michelle, have you said how long you have been diabetic and your age? It is amazing and energizing to see people living so long with Type 1. CONGRATS!!

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Glad I could help! :slight_smile:

@Cgrover don’t forget, if you wish to you can apply for your Joslin medal for meeting the 50 year mark.

Hi, Michelle, I’m similar to @wadawabbit - female, 65 in my case but T1D since late 1963 (to be fair, somehow my crappy rural doctor didn’t know enough to get me immediate care, so my first shot came in January 1964, even though I was already looking excessively thin and half-dead in the Christmas photos - nothing like the rest of the family).

At 61 I had better success than @wadawabbit with the cataract surgery, but no credit goes to the surgeon who was congratulating himself while I was only half-anesthetized and hanging on his every word, on how he was setting new speed records for cataract surgery. OMG. But healing proceeded right on schedule despite the race. I only got it done at 61, though, because I’d met my out-of-pocket and everything for the rest of the year was “free”.

The worst of my retinopathy was 1993-1996, but the science and treatment has come so far since then! Wowee. And I take better care of myself, although back then I was still walking 5 to 12 miles most days.

I resisted getting a pump until the tremors in my thumbs made trying to give shots kind of hairy, but the tremors come from something else entirely, so very likely not your worry.

What I do have is some neuropathy - but only at the stage where my left foot might drag a tiny bit after 15 to 20 minutes of boring walking on a track when my mind wanders, and sometimes I have trouble telling without looking quite where my feet are in relation to each other , despite 4 years now of PT for that. But that’s after a fall, no relation to diabetes, backwards down a flight of stairs and landing on my head. That pretty much ruined me for proprioception, but again, nothing to do with diabetes.

I did have a fall that was half-blameable on BG, last December, where my spine went straight perpendicular down which is the surest way to break a lumbar vertabra, even though I don’t have osteoporosis. Yet. It was 6 AM and dark, and I was stumbling.

Stage 1 kidney disease, which I call Stage 1/2 because I had one bad test, in 2017, which couldn’t be reproduced 2 months later or ever since.

Lessee… Really my worse problems stem from my other chronic illness, because of which I have very off-kilter electrolytes, and lack of balance, and I have discovered that the metabolism of blood pressure meds, low sodium & chloride, and diabetes can cause WHOPPING DKAs at dawn, only starting a year ago - I can have medium ketones even before my BG even reaches 220 within 30 minutes of it having been 110. So I wouldn’t worry about that for you unless you wind up on a non-diabetes med that significantly skews your electrolytes.

Otherwise… my cholesterol is off compared to everyone else so I can’t counsel you on that (high HDL, pretty low LDL and triglycerides). But taking care of myself? Doing OK so far, after living alone for uhhhhh, well, decades.

Really, I’d say, if you’re worried, just eat properly and get all the exercise that I hate so much. :smiley: And keep learning. Learn anything. Just keep taking your gray cells for an intellectual jog, and I don’t mean Sudoku.

For what it’s worth, cognitively, despite a long record of concussions (since I was 12 and fell 25 feet onto my back in the forest, gulp), I spend my free time studying and practicing genetic genealogy, tracing the actual family connections through segments of chromosomes and learning which individual genes are in specific segments that might concern me. Blame the DNA test that said we were not who we thought we were. I also take wild rides exploring medical genres down to infinitesimal detail, sometimes. I find it far more interesting than the software programming job that brought in an income, but in any case, at 65 I’m not just sitting in a rocker staring at the TV. Cognition doesn’t need to be your worst problem.

But of course, I’m not you, either.

I do read a bunch of memory-loss fiction, though. If fear of loss of cognitive ability is a worry and Still Alice was a problem, don’t read The Memory Book (Lara Avery) (about a teenager) or Elizabeth is Missing (Emma Healey). Those are the two that affected me the most. But you could get involved in genetic genealogy and see what not just your immediate family’s but your cousins and more distant relatives’ histories are with dementia, and which chromosome segments and then even genes those people share… Just sayin’. :slight_smile: I’m not helping, am I? Sorry!

Hey, @Cgrover, I heard it was after 20 years rather than 15, but I only heard that in 1975 when I was already 12 years with T1D.

FWIW, @Mlp1124, in the same visit to Joslin where I heard that, one of the other patients was an 80-year-old woman in pretty admirable shape - in 1978! - who had been one of the earliest patients ever put on insulin. She was there for a 50-year anniversary check-up - and daily game of tennis with her doctor, which he made sure we all saw them going out for, tennis racquets over their shoulders while we all sat around idle.

Hi there, I’m new to this site but thought I’d weigh in here. I’m 53 and have been a Type 1 diabetic for 35 years. I had cataract surgery in both eyes in July and see well now. I have osteoarthritis in my shoulder. I take a buttload of meds to prevent complications and am doing well so far. I could do a bit better with diet and exercise I admit. My question for those who were diagnosed 30+ years ago, do you feel like there should be diabetes education to update us all on all the changes and new things that at least I wasn’t aware of because they didn’t teach it in 1987? I learn new things every time I visit my Endocrinologist and feel dumb…

Yes, good advice. I live my life and honestly do my best to forget I have a chronic health condition but when I get anxious I just get flooded with the feelings of unfairness and fear that I won’t get to live as long as I should because of this disease. Even just typing that makes me queasy but I guess we do the best we can.