Thanks @jjett for the warning. My first experience with a CGM was similar, where the endos seem to love Medtronic, and then I found this forum. Everyone was telling me to use Dexcom, since it was so much better. Along the same lines, I once did a survey on this forum of what devices people used, and for most of us, experience was limited to one or two devices, so yes, I would research a broad range of opinions and other sources to get a good sense of what was worthwhile.
@rocksta - Yours was a different response than most, so it gave me pause, but it does raise issues that many struggle with. I have long been self-sufficient, and managed my diabetes by myself, but my spouse has been a great adjunct, helping me to improve my control and my diet. I have a spouse, plus we pay for long term care insurance, a necessity in this country. I would hate to become a burden to her, but I know we are there for each other.
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I wonder if those that aren’t yet old age (like middle aged or younger) if we should/could start an advocacy group for the elderly with type one with the end goal of having most elderly placed on AID systems for safety. It’s something that unskilled type ones could create and obviously in the end we would need lawyers, doctors etc but the whole mission to change laws, and the attitude of the public and medical profession could over time change outcomes for elderly type ones drastically. I could certainly see myself start something like this , clearly we need it, and to be honest I’ve lost sleep recently thinking about this because frankly it’s unacceptable and I’m horrified at what many of you have said here, and the ball needs to get rolling on having a lot changed for acceptable outcomes and care for the elderly type one population.
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Yes, I didn’t mention my watch, but using that with xDrip is huge for me as well, as are the high and low alarms I use to nudge me to jump on my sugar surfing surfboard.
The literature suggests any of the AID systems discussed in this thread when assigned at random - Tandem, Omnipod, CamAPS, Medtronic - can improve Time in Range 70-180 from about 65% to 75%, and A1c from 7.2 to 6.7, but none are significantly better than that (https://pmc.ncbi.nlm.nih.gov/articles/PMC12259683/). That is true for the open-source OpenAPS as well which didn’t quite reach 75% TIR (https://pubmed.ncbi.nlm.nih.gov/36069869/). I found it interesting that there is no clear winner, they all performed about the same in this head to head comparison. And depending on where you are starting from, these results can seem rather underwhelming.
On the other hand, it is clear from the responses here that all of these systems, as well as MDI, can achieve much higher time in range and A1c by careful monitoring and tuning in combination with careful diet and exercise. So which approach you prefer is really a very personal decision. As long as one uses a CGM fulltime, it seems all these AIMs as well as MDI can all be good choices to achieve as high a level of control as you desire.
Which gets me back to the question of management when elderly enough to be incapacitated. I do believe that any AIM system would be a reasonable choice at that point, and it is surely the case that these systems will continue to improve in that time. That is when I see a clear advantage of any AIM over MDI.
I am confident that the usage of one of these systems will become the standard of care for the infirm elderly. And frankly, I think that would be the time to relax and let whichever AIM system you have at that point take over. TIR will go down some and A1c will go up some because there will not be the same level of precise and personalized monitoring that everyone here seems dedicated to. But really, so what? I don’t see that as a failure, I see that as a success at living a long and full life.
By all means do your best to control your BG the best you can while you can, because it gives you a longer and healthier life. But when you can’t do that anymore, it is OK. You don’t win by dying with the lowest A1c any more than you win by dying with the most toys.
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I think that once in my 80’s I will not worry much about my A1c or my time in range which is about 90. Hopefully I will make it to 80.
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I too have a wonderful partner who has been with me for almost 60 yrs. He has followed my different diets and we would do any thing for each other. Our almost 40 year old son and his wife already do so much for us. Even if we end up in assisted living, our son will continue to make our meals. and will help me with insulin, and anything else we may need. I did it for my parents and we know that our son will do it for us. We are extremely fortunate.
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“You either love it because it takes all the controls out of your hands and does everything for you, or hate it for more or less the same reason.”
It seems to me as the tech gets more sophisticated, we lose more control every time there is a new pump or update. After 20 years of pumping, the last 12 or so on Omnipod, I was so glad to get rid of the pump…I am two years into MDI, and I can’t even tell you how much I DON’T miss having crap taped to me. (Yes I still have my G6 taped to me, but that’s insignificant by comparison). Now granted, the Omnipod 5 was a lesson in frustration, because it was basically playing to the lowest common denominator, of which I am not a member. I wanted to chuck it out the window, and that was even with using manual mode. Good riddance, and don’t let the door hit you…as they say.
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This thread is giving me a lot to think about, as I am at an age where retirement considerations loom large. I am going to explore how to maintain current level of care as I advance in age, with the idea that I may not be in complete control. My mother died from Alzheimer’s and my dad died eating breakfast with no signs of slowing down and completely independent. So I see my chances of ending up in a home about 50/50.
But having less control, while not inevitable, is very likely. With technology for care is ever increasing exponentially, I doubt best level diabetes care will ever be part of typical near end of life care. Maybe it doesn’t need to be, as long as my diabetes isn’t complicating my short term care.
I’ve always used forward tech in treating my diabetes. Not bleeding edge, but ahead of the norm, which is in and of itself is ill-defined. There was a time when MDI was bleeding edge. Now it’s a minimum level of care.
My older brother, dx-ed with T1 in his late 50, is recently retired and seems to getting adequate coverage for his t:slim G7 system with Medicaid.
I’ve been watching closed loop systems. Of the current commercially available systems, the Twiist is at the top of my list and may be my next step after the t:slim.
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I don’t believe that anyone who is unfamiliar with basic programming should consider AndroidAPS. That make strike some people as too harsh but the fact is that there is no gain over other, closed source, systems like the Insulet Omnipod O5 and that TidePool has a much better support system for open source systems.
That said @JamesIgoe has Python programming experience and AndroidAPS is written in Java, a broadly similar (indeed to my ancient mind befuddled by many computer languages) almost identical language. (I do much prefer Python.)
AndroidAPS is the bleeding edge and that’s about all anyone needs to know. Unless you go in and hack the code it is not possible to loop on any version less than 3.3 today; the above paper used 2.8. It forces “upgrades” at significant releases. There is no, “It’s not broke so don’t fix it” option. Everyone dogfoods.
I hate it but at this moment I wouldn’t use anything else.
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The mission to benefit elderly diabetics is grand yet so large as to make its enactment a lengthy, difficult and historical “moonshot.” Perhaps scaling this mission down some could help contribute to a more doable and human scale.
I’m reminded of the notable quote, “do what you can, with what you have, where you are.” This perhaps can suggest to many where they might contribute to moving this important ideal towards a better outcome. Incrementalism is a powerful force that can produce impressive results over time.
This idea seems to move you, @rocksta. You should give it some more thought, identify a small piece of a valuable goal, and then start to take some meaningful action.
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I’d avoid the use of the term “calorie”, it’s ambiguous by a factor of 1000 because sometimes a “calorie” is in fact 1000 calories. It depends on historical usage.
That said, and working backward, 350 cal or kcal (assuming the traditional and extremely confusing US usage) is 1500kJ which is about 60g of carbs or protein (30g of fat; fat catabolises to protein+carb).
The split matters a lot because carbs, whatever the marketing, are accumulated rapidly but protein takes several hours. Fats become a factor for those of us on lower carb diets but probably not for you (unless you are zapping the carbs close to 0, i.e. keto levels).
I’m assuming your carb intake is highly variable, depending on the meal, so I would guess that a CGM with a pump would help because there are two things that you can do very easily with that combo that are difficult otherwise:
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Over-bolus; if the carbs aren’t clear it is possible to say xxxx it and just bolus on the high side. Later you can cancel the basal (an AID should do this automatically) to recover from an error. Cancelling the basal on MDI is problematic…
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Over-basal. It’s always seemed to me that this is a common thing for MDI; we seem to use the basal to cover what is really ingested energy. Over-basal handles unknown protein very effectively because protein contributes very slowly to the insulin requirements. To some extent it handles fat too. With CGM+pump systems an over basal is harmless (well, if the alarms on the CGM are turned on, or you watch it
In case you didn’t notice I just said the same thing twice, two different ways; being able to can the basal is the heart of the benefit of a pump.
John Bowler
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That was very much my experience with the 670G. I was expecting more or less the same with Tandem C:IQ and was fairly gobsmacked to find it was a totally different approach that made it easy to adapt it to me rather than the other way around.
One of the under-appreciated factors behind the HAL9000 approach is that the medical profession wants it as much as the patient community does. The extent to which insulin therapy runs against the grain of everything they are trained to believe about patient care gets overlooked. Normally there’s a medicine for what the patient has, you figure out the correct dose for them, you send them away with a prescription. That’s a much more comfortable proposition than giving them this very powerful, potentially incapacitating or even deadly hormone they have to figure out their own dosage for and administer to themselves without supervision multiple times a day. I think this is part of the reason why there’s a strong bias toward misdiagnosing T1 as T2 in presenting adults. “Here’s a script for Metformin, now eat better, get more exercise, and we’ll see you in 6 months” is just a much easier scenario from their p.o.v. than the complications and vagaries of prescribing insulin. It’s just a lot more work and uncertainty for all concerned.
So the prospect of a black-box that figures all that out and takes care of it automatically puts that whole mess back in a container that is much more comfortable to them from a professional standpoint. And it would be great if it actually did work that way reliably for everyone. I was an early adopter of the 670G, first in my endo’s practice to try it, and we all awaited the results with bated breath. I was totally on board with the idea of it, but the experience fell far short. I had tighter control without it than with it.
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Sorry for such a delayed response. I use Dexcom G7 with Tandem Tslim pump, a closed loop system, and am generally very happy with it. There are times when I have to calibrate the Dexcom G7 a couple of times on the first day of insertion of a new sensor to get accurate readings.
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That’s something I took from @Terry4 , he calibrates every sensor and has a good protocol for doing so. The more accurate you can make your looping system the better the results so I always calibrate on a new sensor too (I’m using CamAPS for looping software).
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inevitable later senior years
I’m thinking back to the day I was diagnosed, the doc reassured me that I might live another 15-20 years if I took care of myself. As a result I never worried too much about retirement. But I’m now right around the corner from 50 years and everyone at work is asking me when I’ll retire!
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Indeed. I was diagnosed, mostly by myself then my mother (who’s gory books I had read to enable the diagnosis; she was a nurse). That was 1972. They never gave me a life expectancy; I worked that out myself too.
So I decided to retire as soon as I was able; when I got my pension, earliest age at the time 55. That didn’t work very well for me and I was getting fed up. I ended up in the US working for a well known company and realized that the pensions were completely meaningless. I’d earned enough money (boy, did that harm my health) so I stopped working in 2001, when I was 40.
I can’t complain. I had a disease that promised death, I never compromised and I stopped working for the man and have had 25 years under my own control. 10 more than I was aiming for; I count that a victory.
Now, maybe, I can have another 25 years more if I don’t manage to kill myself, and my dog doesn’t kill me and, of course, my wife doesn’t kill me; all you guys have to stand in line.
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I don’t cry for myself, more often tears for others’ pain, or in joy, but I remember watching medical programming on LifeTime TV - they used to have 6+ hours of educational video for doctors on Sunday morning - and one doctor mentioned that T1 diabetics used to have a life expectancy of 48 years. I bawled so hard, and I don’t think I cried harder in my life. Yes, it was speaking in the past tense, but it strongly, irrationally affected me.
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hi Terry, I also find the professionals are not too interested. They just wanna get me on an insulin pump and they have the famous quote high alive low dead as far as dynamic conditions. Which I do remember that I tolerate too much high but they just seem to wanna push the pumps and not help me manage with injections. I asked him the nurse practitioner which I’m going to the regular doctor tomorrow I hope, right away, she said all my type ones except about five or six on pumps. I said how many can manage their diabetes she said next to none scaring me more.
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I believe that knowledge of how insulin works, whether MDI or pump delivered, combined with sufficient personal motivation is what makes the difference.
Mindlessly pushing pumps onto their patients is a solitary tactic that just doesn’t work. Virta Health’s success demonstrate that a comprehensive approach including nutrition education, remote on-line coaching, and regular overall support proves effective.
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As recently as 15 years ago a published review of retinopathy rates in diabetics said that most T1’s develop retinopathy in a few years and nearly 100% have retinopathy inside of a decade. These stats are based on the “stone knives and bearskins” era before home bg testing and DCCT standards of control. Which I overlapped with.
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