People who have had t1d for over 60 years.
That’s a hard group to find but I’m sure they are out there c:
@maryw hi maryw,
@Dennis, @richardv, and @tedquick (to name a few) are all members of the elite “had diabetes for a really long time” group. Maybe they’ll see this and chime in. I have only had t1d for 39 year so it’ll be a bit before I can join this group.
Hope you are well and keep up the great work.
Actually, Joe, you don’t need to reach a certain diabetic age to join our group in Lakewood. We have some there with only a year or 2 diabetic experience. It’s more a matter of being a mature diabetic. Nobody will be turned aside for a non-existent “rule”.
Hi @maryw, just look around you here and you will see several persons posting who were diagnosed with diabetes more than 60 years ago… Yet, this TypeOneNation doesn’t restrict access based on length of time since diagnosis - one need not even have diabetes to register here.
just yesterday I was at the monthly JDRF “Cups of Hope” get-together and I was one of three people in the small group who have passed 60 years and a couple of months ago at the local JDRF Summit there were many attendees with 50 plus years including one of the principals on the program.
If you want to join a group exclusively for persons with long term diabetes, I suggest that you look into the Joslin Medalist’s Group; a couple of members have been awarded the 80+ year medals. The only requirement for membership is that one must have had diabetes for at least 50 years; currently there are 358 members participating on the blog.
October 1958 diagnosis type 1 diabetes so I’m close, have Alzheimers diagnosed 2 years ago, along with MS, been using a Medtronic pump since its release, I am lucky enough to have a very fine wife as a caretaker (married her twice) I look at the whole thing as a blessing as I am still here to see it, its all good, you all take care, its a lot of work, maybe I will check back in October on my 60th year type one
I’ve had T1D for 55 years. Almost there!
A senior in age — but a baby ( 10 yrs) as diabetic. Can I put in my 2 c? Its not as terrible as one may think ---- lots of good things happen that wouldn;t have if you were not diabetic. Keep positive, count your blessings. You’ve heard this one, I’m sure: << Get a chronic disease, take good care of it and you will live forever.>>
Diagnosed in Feb of 1954,at the age of 9, last feb was my 64 th anniversary. Died in recovery after ankle surgery in 2000 was sent back after being gone for 12 1/2 minutes( blood clot) had my leg amputated 3 months later, to stop pain. Came back with a list, I wasn’t coming back but the MAN upstairs said I was and gave me a list of things that needed to be changed, that’s what I am working on in addition to many other things Over a year ago I joined a group of people who are all in wheel chairs the name of the group is THE NEXT STEP-peer mentoring check us out on Facebook, who would have thought that at my age I would take up shooting and I had my 5th JuJitsu class last weekend. I am the only female amputee in the group but we have more fun and it is awe inspiring that all the people in this group are always up beat no complaining and a lot have plenty of reasons , my conditions are nothing in comparison to some of the people in our group. Check us out it is just a kick, no pun intended. Ha ve a great day everyone. Bye Jan
Hi Janice @JaniceD, my hat is off to you!
Yeah, the Guy Upstairs won’t let us in until we spread our love completely here on earth. Yes, you were diagnosed three years before I but i wasn’t diagnosed until my 16th birthday so I’ve got a few years on you. it sounds as if you have found the place where you are needed to encourage those even less fortunate than you - your personality is a commodity that is needed.
I too found a group. JDRF Cups of Hope where I can meet with others, especially parents and grandparents of newly diagnosed kids who think life is over for them and their child - yes, be a personal example that diabetes does not limit a person’s outlook on life.
Dennis, Thank You, My philosophy is to make the disease conform to me and not the other way around, so now my diabetes has agreed to compromise. Sounds strange I know but it works for me. My doctors want me to write a book explaining how I have made it this far, even though they know I modify the rules to suit me. FYI I have found out that if I keep a higher blood sugar above 130 I have no problems with neuropathy, my brain has all the fuel it needs and doesn’t need to steal it from my nerves, everyone is happy. Even my Vet uses this theory on animals with Diabetes, but never considered it for humans until I told her it works. There is a neurologist that has decided I am right and he has written a paper on it for anyone suffering with this problem no matter the cause. As I said before check out THE NEXT STEP peer mentoring on Facebook and you’ll see the trouble I get into, with help from others. Have a great day. jan
you have probably seen my advice on here in many posts urging PWD, especially the newly diagnosed, to not let diabetes limit or prevent growing to live a full, active and complete life. but manage their diabetes successfully to permit really living.
Of course to do this, one must understand more than just the very basics, one must understand her/his own body needs under a wide variety of circumstances [activities] and know the necessary amounts of insulin to deliver / or subtract for meal-time bolus as well as the rates of basal needed for various times of day.
Yes, it requires lots of study and observation but it can be done with a little [extra] effort. In the 1970’s before “carb counting” and “MDI” were common terms I was introduced to a doctor who guided me in this process - he later was one of the designers of the DCCT Study.
Here is some info for you, Alzheimers has been considered as type 3 diabetes, because the brain doesn’t get insulin as it’s needed. There is a study and the thought is that Insulin needs to be inter-nasal, goes directly to the brain. Mann Kind has been working on inhaled insulin, I used it years ago when it first came out, supposedly it will be back on the market. I e-mailed them and asked them specifically if they were or would work on inter-nasal insulin and I cited the study on Alzheimers, you might want to contact them, also look at the Alzheimers web site, I think they are planning on doing trials with this type of insulin. Not to be a Know-it-all but if your Alz. symptomology resembles low blood sugar Ie: shakes, eye sight problems, balance problems, speech problems, those are all signs of a low bloodsugar, I don’t know what your range is but the range being used now is extremely dangerous . I run above 140 so that I don’t have a “foggy” mind , or eye, balance, pain problem… I was diagnosed in 1954 at the age of 9. Have a great day Jan ( Our orig good range was 80-120 now it’s 66-99 way too low for most of the people I know.)
I’ll chime in, I’ve had it for 64 years last feb… Still hanging in and I wouldn’t know how to live if I wasn’t a diabetic. Have a great day, life. Bye jan
Hi @JaniceD, there currently is an inhaled insulin in use; one of the regular attendees at our JDRF Chapter has been using it with, what he reports are, good results. consult with your endo as to whether it may be good for you.
I fully agree with you about the advisability for maintaining a “higher” target range for BGL - especially for older people with long-term diabetes. “Target Ranges” that work well for me based on the algorithm in the MiniMed pump 'before meals 100 - 130" and ‘after meals 110 - 140’ yielding a weighted daily average of 117 mg/dl which is really too low for me. In the last five years two different endos have advised me to get my A1c up to 6.5.
The range you mention of 66 to 99 scares me. When the HbA1c scale was created, and still in use today, the lowest number was 5.0% which has an equivalent of 90 mg/dl. A large study, about 30+ years ago, in intensive diabetes management had to be modified part way through because of severe and permanent injury to some participants who maintained constant low BGL.
I am unaware of the inhaled insulin you mentioned I used the one by Pfizer years ago, even after they quit selling, I reached out to the pres. of Pfizer and he supplied me with 18 months, free, thought that was fantastic, then I used the one by Mann Kind. but I haven’t heard of the new one. Remember when the scale was 80-120? I found out that the scale of 66-99 came from UC. Davis and if I was a conspiracy theorist I would say that the RX co. wanted to sell more drugs, by lowering the scale more Diabetics were created. The funny thing, my Pump(Omni Pod) will not allow me to take any insulin if my BS is less that 80. My Endo has all her older patients maintain a higher blood sugar–140 and above depending on the person. I have always been higher even when I was cooking urine with Copper and Sulphur back in the dark ages an personally I think that may be part of the reason that I don’t have any complications. I realize everyone is different, and here is a funny part, regular people have a range in the 90’s but when a diabetic lives in that range, sometimes is dangerous I am beginning to wonder if Diabetes is really a symptom of an unknown auto immune disease, because if all it took to make diabetics normal was insulin, how come a lot of us can’t tolerate the 66-99 scale and insulin doesn’t fix the problem like you would expect if insulin was the only thing we were missing, just a thought… Also by maintaining a higher BS I don’t have to worry about Dawn Phenomenon , actually sometimes that’s the cause of a higher BS, bless our cave men ancestors, I understand why this Phenom. occurs. Blood sugar readings didn’t come into being until approx. 1985, I am sure the person that developed smell good room sprays must have been a type one and had to cook urine, that should only be done outside, just kidding. What do you think, I have realized after 64 years of having Diabetes, that the rules keep changing and we all have to find the way that is the best, what works for me may not work for someone else, all we as individuals can do is find what works for each of us, I use the rules as guidelines and not carved in stone. Have a great day, good talking to you, talk again. Bye Jan
Hi Jan, I like the way you express yourself - and of course your mantra of living life to the fullest and manage diabetes to fit in is much like mine. you and I would do much to inspire other PWD, and the caregivers of the newly diagnosed, at our monthly JDRF gatherings. So many parents of newly diagnosed kids think that their world has come to an end.
That “old scale of 80 - 120” may have been the most misused preaching by doctors; the proper use for the 80 - 120 was to do further testing for persons, not diagnosed with diabetes, if BS was either less than 80 or greater than 120, The 80 - 120 is not used to manage diabetes - for example an HbA1c = 6.0 means that the person’s average BG over the previous 90 days was 120 mg/dlm meaning that a PWD who most doctors say is doing great was above 120 50% of the time - an interesting bit of logic.
In response to your thoughts why someone without diabetes is OK with Bg in the 80’s and 90’s and we are not is because a pancreas, when working properly, does a lot more than produce insulin - it also produces the proteins that signal the liver to release stored glycogen that keeps BGL from dropping too low. Yeah, as our bodies get older - I’ve been T1 for only 60+ years - it is better to maintain higher BG; in the last two years two different endos have told me to try keeping my A1c no lower than 6.5.
If you find out the name of that inhaled insulin I would appreciate it if you would tell me. I used the one by Pfizer called Exubera, I contacted the President of Pfizer after it was pulled and he supplied me with 18 months worth , free. Then I used the Afreeza by Mann Kind, used that until it was pulled. Supposedly Afreeza is going to be reintroduced, don’t know when. I haven’t heard about any others unless you are talking about the inter nasal insulin being developed to treat Alzheimer’s and Dementia. Alzheimer’s is Type 3 diabetes because the brain does not have efficient access to insulin. Thank you, Jan PS: what does PWD stand for?
Interesting discussion above. A couple of comments. The idea that T1D is an autoimmune disorder spun out of the “panic” that ensued as the medical community began to wrestle with AIDS in the early 1980s. In 1983 I was on internship at a VA hospital when we admitted the first person ever discharged from the military with AIDS. What an experience that was. Our understanding of autoimmune disorders (still in its infancy, in my opinion) has led to consideration that T1D does not occur in isolation - it is often associated with hypothyroidism, gluten sensitivity/celiac disease, and other syndromes. These other syndromes often develop in the years after T1D is diagnosed, implying that T1D is the first expression of a more complex autoimmune disorder. (Take all this with a grain of salt - it is my “read” of the history I’ve witnessed and participated in.)
A second comment. The human brain is a funny critter. While doing my years of research for my doctoral dissertation I spent about 12 months going through the original literature on the effects of insulin therapy on the brain. Soon after ultralente insulin was developed many case reports appeared that documented brain injury (and death) secondary to hypoglycemia. The pattern of brain injury was similar from one report to the next.
Here’s my point to the above. Hypoglycemia affects the brain more profoundly/more obviously than other parts of the body. The brain of a person who does not have diabetes has a store of glycogen that is good for about 9 minutes. So, when blood glucose levels drop below about 60mg/dl the brain begins to “chew” on its glycogen and, after about 9 minutes) begins to “shut down” phylogenetically (i.e., sequentially “shutting down” higher-order areas of the brain) as it tries to keep “essential-to-life” areas operating. (This is not completely accurate but it is accurate enough for this discussion.) If the hypoglycemic condition is not quickly reversed five distinct areas of the brain are at risk of injury; with one exception they are the same areas that are affected by hypoxia (lack of oxygen). If I remember correctly (it’s been thirty years since I’ve had any reason to refresh my memory of this literature) the “different” area is one related to fine motor control.
I wrote the above to explain that I am perfectly happy to bump along with a HbA1c of 7.0 to 7.5. Having reviewed the literature in great detail I do everything I can to manage my diabetes while simultaneously trying to protect my brain. After 60+ years of wrestling this disorder I don’t have many brain cells left to spare.
There is so much more to the topics above. Maybe someday I’ll write them all down.