T1D Seniors


(joe) #21

@JaniceD hi Janice

Afrezza is on the market… as far as I know it wasn’t ever pulled after approval.

Link to Afrezza

there are 20 some-odd Alzheimer drugs in Phase II and Phase III Clinical trials… I think they found something recently and that’s why most of Pharma jumped on the chance to have a product first-to-market.


(Janice) #22

Hi Joe, Afreeza was pulled a few years back when MANN KIND lost funding, then Sanofi invested a bunch but Sanofi didn’t live up to their agreement and Mann Kind lost funding again. I e-mailed Sanofi a few years back regarding their inability to advertise, their reply was that they thought word of mouth would be enough… This time when Sanofi pulled out they wanted their initial investment back but the courts said no. I did not realize Sanofi was in France and my English apparently doesn’t translate into French very well and their answer was strange. Your right I just spoke to my Pharmacist and she can get it, not local though, doesn’t know it’s point of origin, since they order through a wholesaler. I have never seen any advertisement here in the USA have you?.. What’s funny is I own Stock and it isn’t doing well at all, never has… Thanks for the info, I may have to go back since I am running out of places to stick a needle of cannula. Have a great day, bye jan


(Janice) #23

Hi Bill, I have been a type one for 64 years and I am very happy to keep my A1c at 7.5 but you realize we may be in the minority. Re: Alzheimer’s ant type 3 supposedly at least from the latest studies, the brain in unable to access the insulin in the brain I didn’t realize that the brain can produce Insulin, there is a wall or barrier that is preventing the Insulin in the brain to stabilize the sugar in the brain. The theory is that if you use an inter-nasal application of Insulin it will go directly to the brain and stabilize it’s glucose level. Your right regarding Hypoglycemic affecting fine motor skills, along with eye sight and other areas. If I keep my BS higher 140 ish I can avoid, all sorts of complication, Neuropathy for one my brain doesn’t need to steal glucose from my nerves to feed itself… If the College of Physicians get their way for raising the A1C for treating Type2 and possibly type ones to 8% I think it will be a lot better… I am very fortunate for not having any of the complications with Diabetes after 64+ years, back when I was diagnosed we didn’t have the guide lines out today. Strange thing though have you noticed that those of us from the dark ages don’t seem to have as many problems as those from a newer age, that is a whole other discussion. My A1c is 6.8 -7.1 Been as high as 10 The only place the Diabetes shows up in me is in my blood. And I still believe that Diabetes is part of a larger problem, we don’t know about, treat the symptoms, because if insulin was the only thing we were missing and that was replaced a lot of Diabetics would be in better shape, My Endo and other Md’s have had this discussion they think that this is a possibility since according to them there are so many Auto-immune diseases we don’t know about , and things that cannot be explained… Have a great day Bill and I am going back to the rest of the things on my list Bye jan


(Janice) #24

Dennis, nice to hear from you, The pancreas is resp. for so many things, and I think our bodies being as individual as they are and operate as fine as they can and when something like Diabetes shows up and you mix that with our individuality there going to be differences in each of our conditions and we need to find out how our bodies react, the guidelines are just that guidelines, we need to understand and treat our bodies accordingly, my Diabetes is probably different from yours. Have a great day. PS: did you have to cook urine and then match color to find out how effective you Insulin was? Bye JAN


(Bill) #25

Jan, most people from the “dark ages” who had T1D died a long time ago. Those of us “oldies” who are posting at 60+ years of T1D worked our tutus off to manage diabetes and stay alive. Some of us have benefitted from having had fewer associated syndromes. And others of us have had to wrestle several issues in addition to diabetes.

Re: Alzheimer’s and insulin - take what you hear/read with a grain of salt. All we know “for sure” is managing blood glucose has long-term benefits in various areas of our physiology. That’s about all we can be “universally” sure of at this point (IMHO).

Bill


(Janice) #26

Hi Bill thanks for the reply, I have RA, primary biliary cirrhosis, auto immune Hep. suffered the loss of children thanks to my husbands extensive exposure to Agent Orange and other things, most of them I inherited,(the liver disease) but as for complications from the diabetes, none… Even my amputation had nothing to do with the Diabetes, I consider myself lucky things could be so much worse, PS: I enjoy the group I’m with (the next step peer mentoring on Facebok) they keep my perspective in-line., besides they are just fun, no matter their conditions. Seriously handicap people have a different look at life, they appreciate what they have and don’t whine about what they don’t have, this group ranges in age from 12 to me (72), they are just fun Have a great day, and I am fortunate that my Dark Ages don’t show, yes that’s an old lady joke. Bye jan


(Dennis J. Dacey, PwD) #27

Ni Jan, I didn’t need to “cook” my urine with Benadine’s solution on a stove. Fortunately along about 1954 - 1955 Bayer began making Clinitest Tablets which generated the heat to “cook” the drops of urine and water in a test tube. Oh, I certainly produced mostly bright orange and red colors - +4 readings. I wasn’t a good boy following the starvation diet.


(Dennis J. Dacey, PwD) #28

You’ve got it @BillHavins and @JaniceD there aren’t many survivors from the “Dark Ages” especially those who are free of so called diabetes complications. I can directly link my retinopathy [diagnosed 1966 and LASER treatments beginning in 1967] to VERY poor diabetes management - I had gone years without a blood sugar test. And I can probably blame the narrowing of coronary arteries and hearing loss [anatomic neuropathy] on diabetes.
Considering that over 610.000 people die of ‘heart attack’ in the USA every year, only a small percentage have diabetes, I don’t consider my congestive heart failure to be a “diabetes complication”. Truth is, I’ve lived a very full, active and fulfilling [almost] 77 years and haven’t hesitated to do what I want and live those years MY way while now for the past 40 years learned to manage diabetes quite well. Probably “better late than never” but I now wish I had paid more attention during my first 20 years with diabetes.


(Janice) #29

Don’t beat yourself up about it, We all wish we had paid better attention, but I learned a lot and I don’t regret any of my decisions regarding the Diabetes, Just because we could have been more strict that is no guarantee that things would be different. Be Happy and enjoy life. I was headed for congestive (close call within 30 minutes) heart failure all because of my Insulin allergy, now I take meds to change my sensitivity to the insulin. Have a great day. PS: also had laser treatment b because of a hemorrhage , as of this year, still no diabetes in my eyes. Join the poor management club I also was not good, but I am ok. don’t know why some of us have been spared some of us haven’t . Have a great day, and enjoy what you have. Bye jan


(joe) #30

@JaniceD, hi Jan! thank you for the updated information I was positive it was still current! fascinating story with funding - but I suppose the truth can be stranger than fiction.

I don’t know the origin however, I know a lot about medicines sold in the united stated with active FDA licenses: if it is available through a US pharmacy then the factory where it was made was licensed to make it and sell it so, the company showed the quality necessary to maintain that license, and was under the supervision and inspection of the FDA. nothing is perfect but that is potentially safer than buying from a unlicensed source.

no I only knew Afrezza was on the market because the original (Exubera) interested me… the company I was working for at the time was trying to make an insulin “patch” (transdermal insulin) and the inhaled version would have kicked it’s behind. Transdermal never worked anyway but Exubera did get approved and subsequently failed. Then Afrezza was in clinicals and people shared that it did actually work - I was happy for an alternate but I lost interest and stopped following it.

Pharma, as a investment, has been flat for a long time. With the new biological medicines, there has been some growth, but my guess is you are better off with index funds :grinning:

good luck Jan!


(Janice) #31

Joe, loved the Exubera, the only thing that was funny is the inhaler reminded me of a Bong from the 60’s and I had the urge to Bling it. Never used a Bong but I grew up in the 60’s in Calif. so you see my frame of reference, I liked Exubera better that the Afreeza, Exubera was easier to dose . Have a great day. Bye jan PS: My Dexcom and Insulet stock aka Omni Pod, are doing great. Bought them back when.


(anita) #32

i have Type 1 diabetes for 56 years. it would be nice to speak to someone who also has it as long.

anita nerwen
riverdale, ny.


(Janice) #33

Hi Anita, I’ve had it 64+ years and there are others here who are long timers and I read somewhere that the longest living type 1 has had it 78 years, doing well. I personally think that us older ones are having less problems that the new ones on the block, possibly because I think we got a better education. I was taught how to manage my insulin without calling the doctor all the time for permission, and how to adjust if I wanted to indulge, I have not been admitted to the hospital in all 64 years for my diabetes, other things yes but never for my diabetes. My eyes , kidneys, etc are still clear no diabetes, and yes I run a higher A1C 7.5-8 the highest I’ve been is 10 don’t have any neuropathy either because I run a higher blood sugar, sounds off I know but it works… You’re not alone and glad you decided to join us. have a great day. Bye Jan PS I’m in Phoenix,Az


(anita) #34

I am so happy your replied to my e.mail. Firstly I am very hard on myself, i thought an 8 a1c was terrible. I have been saying maybe the a1c should be kept higher because I have been living for 56 years with diabetes and no complications. I also have never been admitted to the hospital for diabetes. I do have retinopathy for many years, and maybe35 years ago I went to the Joslin in Boston and entered a study for my eyes, to make this short, I was given alot of lazer in one eye. Now, I have been treated for Macular Degeneration, with alot of shots in my eye, which now my doctor claims that this problem is caused by all that lazor that I had. My way of thinking is that I could have been blind 35 years ago. I do not see in one eye, which is not terrible and my other eye is 20/20. I gave up driving last year because my peripheral vision in my good eye was not good. I do not know if you ever heard of the Medalist program run by the Joslin Clinic, but I went 5 years ago, and I just went to Boston last month. They use me
for research. They allow $500 per candidate. They have not had money for this, because Trump made cuts to the NIH. Now they have some funds.
It is also amazing to hear you say that you run a higher blood sugar, that sounds like me. I have been so much better with the CGM maching. I got it in October.
I can go on and on. I will leave some of my info for another time. I cannot tell you everything in one shot. (kidding)
Thanks for sharing
Anita Nerwen


(Dennis J. Dacey, PwD) #35

Hi Anita @anitanerwen, happy to meet you. Certainly, we can talk anytime, I enjoy sharing with you. You must be aware of the Joslin Medalist private facebook blog; there currently are more than 300 members sharing on there. I’m in Florida and meet monthly with a JDRF group sharing concerns and offering support - parents of young, newly diagnosed and a few old codgers like me.

I was diagnosed on July 4, 1957 and have lived a full, active life by trying to manage diabetes to fit into what I’ve wanted to do. My biggest “complication” is retinopathy which was diagnosed in 1966 by the medical director of Joslin - who referred me to an ophthalmologist “down the street” for a second opinion. That ophthalmologist, Lloyd M. Aiello [father of the current director of the eye institute, Lloyd Paul Aiello] confirmed the diagnosis and told me I’d be totally blond within two years. I volunteered to be a ‘guinea pig’ for him to try to see if LASER photocoagulation could control retinopathy; in 1967 I had my first 284 burns with a weapon grade [modified] LASER beam - the first thing the ophthalmologist told me last month when I visited her, “you can still drive”. The retinopathy study was the first of several studies for which I “offered my body”.


(anita) #36

Hi Dennis,

1967 was really early for laser. Glad it worked and I am also glad that you are driving. I miss my car. It has been 1 year that I am not driving.

very interesting. glad you got back to me. Lloyd Aiello was my doctor as well. I saw him back 5 years ago. I was just in the eye unit and I know that his son has taken over. The study I was in was called ETDRS (early treatment diabetic retinopathy study). That was in the 80’s. The doctor who started this study was Dr. Aiello and my eye doctos office Dr. Lawrence Yanuzzi.
I was also President of JDRF in West Hartford in the 80’s and when I moved to New York I got on the board of the New York chapter. I moved away from the city and I wanted to get involved again, it seems I cannot offer them much at this time. Old foggies like me do not bring in the money. I think it is their loss, because I can offer support to the newly diagnosed patients.

When in West Hartford I formed a support group, it was wonderful. You guys now will be my support.

Thanks for sharing

Anita Nerwen


(Dennis J. Dacey, PwD) #37

It is a small world Anita @anitanerwen, I began seeing Dr. Aiello when he was with the practice Beetham, aiello & Hill with an office at 64 Bay State Road in Kenmore Square; I was one in the first group to receive LASER and at that time had to be an “in hospital” patient because results were uncertain. At that time I was under the care of Dr. robert Bradley, medical director at joslin and the “eye unit” was Dr. Aiello, Miss Hollman and the photographer with the 35mm Kodak.
Times have changed - YES much progress. It is nice when the “new kids” examine my eyes and stand back and exclaim that now when they see the ‘shape’ of ruby burns ion my retina they are witnessing a bit of [ancient] history - stuff they had seen in books. I’ve had many, many laser treatments, both eyes, with several types of LASER with the most recent December 2016 which will need to be my last as there isn’t any more real estate.

Our son and his family are your next-door neighbors living in Simsbury. Yes Anita, we will be your support and with your experience and knowledge I suspect that you will be offering many pieces of sage advice - especially encouragement for the young, their parents and newly diagnosed.

Oh yes, Welcome to TypeOneNation on your second day here.


(Nancy) #38

Glad there is a group of golden age T1d posters. Dennis was kind enough to send a welcome after signing up. I was diagnosed at age 59. Now at 75, I am getting concerned about my capability to manage without a knowledgeable caregiver (husband minimal assistance). I am a stuudy particiant in testing of Medtronic 670G for 3 years. Only way to get cgm on medicare. I wanted to add info about medicare in a different post, but can’t find it. Every state has a state agency which assists eligible seniors with medicare choices. Most states call it “SHIP.” California calls it HICAP (health insurance counseling and advocacy program). As a volunteer for AARP and Senior Service Council, I have learned that medicare plans are neither national nor statewide. They are county-wide. What’s available in my county is not the same as neighboring county! Including premiums! Make sure you check out thoroughly. I suggest you do so with the assistance of a trusted, smart younger family member. I was advised that going into regular medicare wouldn’t work as insurance companies still have ability to reject for pre-existing conditions if you’ve been in medicare hmo. I hope someone knows more, I’d like to be contradicted.


(Dennis J. Dacey, PwD) #39

You’re welcome Nancy @NancyP, I try to send greetings when I see new members.
I really can’t answer completely your Medicare question - wish that I could, but as you say, plans differ not only by state but also by region within states. Why don’t you open a net Topic and let all of us contribute what we understand to be fact; you can begin a “New Topic” by clicking the “+” at the top right on your Forums page.
BTW, for about 18 months the Dexcom G5 CGM has been approved, and paid, by Medicare - the G6 which doesn’t need calibration is currently oending Medicare approval.


(tedquick) #40

Nancy, not quite sure if they can treat it as a pre-existing condition. The way I heard it this could ONLY happen if you were without ANY health insurance, including a different kind of Medicare plan, for more than 63 days before applying.

Ted Quick