Is there a group for adults who are managing type 1 over 50 years?
Congratulations. However there aren’t too many people in your boat. There are some on this site though.
I’m at 34 years
One of our members has been a type 1 for 75yrs! Several of us have had diabetes for over 60 yrs and several for over 50 yrs.
Please let me know if you find a group for folks who have had it for over 50 yrs. I have been told that the Joslin medalists have a group, but I have never been very interested in getting a medal.
I at 67 years Type 1 DM (this is noted in 2021)
There are several 50+ members here, but not as a “group”. I believe Facebook has a 50+ only group.
I have 55+ years and found this group in 1990s trying to solve issues using early Medtronic Sof-sensors (cgm). Doesn’t really matter number of years, I found the newer/younger PWDs here were much more familiar with the newer tech, while my endo rarely mentioned newer things as they came out. I used NPH and Regular injections for many years because I was not aware of pump options.
I am getting my medal in about 10 months.
The only reason I want to get it is so I can wear it to endo appointments. And if the endo asks me a dumb question, I can say…
“I’m sorry, what did you say? I couldn’t hear you, my 50 year Joslin medal was jangling around and making too much noise.”
I’m also a newbie at only 49+ years of T1 and don’t care about medals to celebrate being old .… but @Eric2 has an excellent plan!
I seem to recall a previous version of the Tudiabetes discussion boards did indeed have a group for those who had T1 over 50 years. (Of course most of those years it would’ve been known as “Juvenile Diabetes”, not T1!) But that group - and a whole bunch of others - evaporated during one of the website transitions.
I’m a complete newbie, as I will be starting my 40th year this summer!
I would think that those of us who spent years urine testing, might have a few more problems than those who started out with the ability to test their blood. The newer insulins made such a big difference too. For some pumps were life savers. And we all love the ability to use a CGM.
I don’t know, maybe there wouldn’t be enough Interest in hearing about what complications people are or aren’t experiencing or how well they are doing now. I know of quite a few type 1’s whom I have outlived. Some died recently at about the age I am now, and some died as children when I was a child.
I am so happy for those who have been diagnosed much more recently who have a much better chance of leading long, heathy lives.
I didn’t have any serious complications until I had been a diabetic for 51 yrs, when I suddenly found that I needed two heart stents.
I consider neuropathy a very serious complication. I don’t have diabetic neuropathy, but I did recently get it from a statin. I am a member of a neuropathy group, many with diabetic neuropathy, and those people are suffering, some horribly. It might not kill them, but some have severe numbness, and pain and need help to walk.
I am 15 years behind you. I passed 34 years of type 1
When I was diagnosed we had blood glucose testing, but it was bulky and time consuming.
I kept my meter in my kitchen and tested once or twice a day.
First you needed a giant blood sample then you put on a strip, then you wiped dit off, then hit timer again, finally you put it in the machine to read.
You could use the strips manually to get ranges. Like 90-120 and 120-160.
So it wasn’t really much better than urine testing. Which they also expected me to do, but I never did.
I took care of my diabetes back then but not real well, I was always in the 7% range, on nph and regular insulin.
I had a few crashes that needed paramedics.
I never expected to live to 50 let alone 50 years w diabetes.
I think people diagnosed passed1990 have a better chance of no complications life.
I want to see someone hit 100 years since we just passed the 100 years since insulin was manufactured. It would be good motivation
Timothy, when I received my first huge glucose monitor, after 22 yrs of urine testing, I felt like I had received a huge gift. My diabetes care became so much better. I was able to reverse my beginning stages of retinopathy. Believe me, testing my blood even with that dinosaur of blood testing machines made a HUGE difference in my diabetes care, my complications and the length of my life.
Now having had type 1 for 62 yrs, I am still in fairly good shape.
Yes I’ve read your posts. You are a model diabetic.
You have been diabetic longer than I’ve been alive.
I think as we age we start seeing the finish line in the distance and want more
At diagnosis I gave up on idea of kids and retirement and old age.
Now I have a 16 year old kid and retirement is 10 years away. Now I’m hopeful I’ll see grand kids some day.
I’ve seen a lot of diabetics die in my life. No one really close, but it’s a constant reminder.
I sure wasn’t a model diabetic for the first 22 yrs. My first A1c after 22 yrs of urine testing was 10. I am very fortunate to be doing so well. I am making up for lost time.
The first A1C I had was in the teens! Several years later, my endo at that time said goal was to be in the 9s, while using NPH+Reg injections. This was just after DCCT Study results, which led to proof of less complications with lower A1Cs, and endos lowered A1C goals.
In a peer support group like this one, time with diabetes is important but curiosity and willingness to learn new things are also important contributors to diabetes wisdom.
I’ve lived with T1D for 37 years but I’ve learned more and became capable of much better glucose management in the last nine years than the first 28. I benefitted a bunch with my diagnosis not arriving until the age of 30.
Interacting here has helped me a lot. I can’t say that I’m complication-free but I think I’ve kept those complications to a minimum symptom level by maintaining near-normal glucose levels for the last nine years.
I wish as a whole that endos appreciated the depth of lived knowledge that diabetes has taught at least some of their patients.
Speaking for myself, I enjoy hearing from those who have had diabetes for longer than I have who are still alive and well. It gives me hope. I love it when Richard posts.
It certainly doesn’t mean that I don’t learn things, especially about technology, from those younger than I am.
I am interested in such a group. Please let me know if you pull one together. I have been type one since May 1957, 64 years next month.I would assume that everyone in such a group would have an informative discussion on the complications that come only with longevity.
Check out this group and study at Joslin.
I believe our member @richard157 is participating.
I’ve had type I 50 yrs, and met quite a few who have no more complications (or none) than anyone younger with more tools. I have to remind myself, people in other countries often have no such tools and they are able to live their lives successfully. I never look at the disadvantage of urine testing, no meters, etc. I just thought it was bothersome but not detrimental to my health.
@Kathlyn1, you can apply for the Joslin 50 year medal. You can read about it on the link provided by @MM1. I have the 75 year medal,
There is a Facebook group for Joslin medalists. Only medalists can join the group. The Joslin Diabetes Center has to be contacted before you can join the group. It is a private group where medalists can share stories and talk about complications. The “complications that come with longevity” are certainly discussed there.