@Terry4 - a stroke survivor

All good wishes to you @Terry4, the Yoda of t1.

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I hope you are recovering well, I am very sorry to hear that.

A close friend had a stroke about 2 years ago, he had undiagnosed afib, had a pacemaker and he has had a great recovery. My father did not though, what was left of him after covid was made worse by a stroke that never should have happened.

The hospital that infected him with covid and eventually murdered him, also took him off anticoagulant and never should have and he was not put back on. Then they left him in the er having a stroke for 15 hours with no cat scan. He died about 2 months later with more gross negligence.

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Your diverging stories seem common in stroke outcomes. I’m thankful that my experience gives more hope!

First day home alone yet with great support from my daughter. Tomorrow, 5/29, marks one full month since my stroke.

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That is great! hope you continue to recover well.

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Sending well wishes, @Terry4! Your words have helped me learn and acclimate to this disease. Hope you’re getting the support you need about this latest challenge.

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Not minimizing the contributions of anyone else, but I’ve appreciated @Terry4’s comments more than I’ve appreciated anyone else. His contributions are likely immeasurable, guiding so many people to better, healthier lives.

I can’t help much, but did offer him assistance in any way that I can, at best limited to information research and tech help.

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Good evening, received message from Terry4 about 4 days ago, and gave him my best advice to deal with Stroke and Diabetes. from response he has been doing well. I will keep him in my prayers, if anyone wants more info on dealing with Diabetes And Stroke. I’m here too help

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My keyboarding skills are slowly returning. I’ve learned that editing voice generated narrative is much different than editing text. My brain works with straight text much better.

Longer pieces interest me but I will wait for a better time.

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@Terry4, Glad you are regaining your keyboarding skill. I’m very interested to hear you tell your diabetes management experience in-hospital and in rehab. Are you still looping?

Yes, I’m still looping @Willow4. DIY with the G6, iPhone and RileyLink (together with my MM722 pump). I wouldn’t want to live without it but my stroke showed just how easily it can be lost. No one can run my system like I can. The medical people are not capable and have too much else to pay attention to.

With the help of my daughter and plain good luck, I was able to refuse the intensive care nurse offer to disconnect my pump and “let them manage my diabetes for a few days.” I knew if I disconnected my pump I would have to fight to regain the blood sugar control.

I had to reset all my loop settings, including all the insulin sensitivity settings and the basal rates. The stroke and hospitalization changed all my needs. I had to deal with it on my own and my brain was impaired. I had just enough ability and drive to make it work.

My glucose readings were not accurate – I suffered two bad sensors in a row. That meant false low readings mixed in with some actual mid-50’s lows. I’m amazed now that they didn’t shut me down.

I just wished that they could have been glucose resource to me without taking me into the permissive hyperglycemia wasteland that would permit them to permanently relax. I knew from various comments that they would put me on a sliding-scale protocol that would keep me north of 150, 24x7.

There are good-hearted people taking care of stroke patients. They just aren’t capable of keeping your blood sugar in even a relaxed yet reasonable range like 100-150. They just don’t know how – and they sure as heck are not going to follow what the stroke patient tells them!

I did meet two dietitians, of all people, who had heard of my DIY looping and came to visit me. They were well informed and thought I was doing the right thing. They came to visit me to learn what they could and fully appreciated just how much medical staff don’t know about managing insulin well in the hospital.

There’s so much to say but I’m running out of steam. This is a good start.

Here’s my latest 14-day AGP report. It shows my interest to run normal blood sugars despite the health challenges I face. I am lucky and fortunate.

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Those are darned good readings for what you are going through even though they are not up to your former expectations. Interesting that they allowed you to keep your looping in spite of your impediments. Good for you! I am very interested in anything more you wish to tell. Little bit at a time as you feel up to it…

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I’m not sure that the intensive care nurse understood anything beyond my pump and CGM. They were doing their own point of care fingersticks.

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Good for you Terry standing up for yourself. My only experience with a hospital stay of 3 days following surgery, “ permissive hyperglycemia wasteland” is the most accurate description of my experience. They are so hypoglycemiaphobic.

As I have bad memories of 3 dietitians who were clueless about any type of diabetes, I am pleased that these 2 are aware and came to you to further their knowledge. Would that all doctors and nurses would realize that some diabetic patients are more knowledgeable from years of living well with the disease.

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Fingersticks are good. But I doubt that the interpretation of the results was adequate. In all fairness, with the number of pumps and apps on the market, it is almost impossible for the different healthcare professionals to know how to operate all of them. However, their ignorance goes beyond that and to the actual management of diabetes itself and not just the hardware involved. This is where the ADA is doing no one any favors with their lax goals and high fear of lows. My own CDE has that inculcated into her and my decades-long explanations of how highs and lows affect each other don’t do much good. Although now that I have achieved this venerable old age without any significant complications, she glosses over all the hypo cautions and simply writes the necessary prescriptions. However, I suspect that the younger CDE in her office is more enlightened and in tune with the technology and our targets. There is hope.

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I fear that this line of thinking is used to permit medical professionals from learning any one of them.

Their over-fear of hypos prevents them from even attempting a better balance.

We can only change one at a time. This process is slow and generational but we must persist.

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Yeah, this.

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Man I would hang that on my refrigerator

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Thanks, I do take satisfaction in painting a good graph. Unfortunately, the everyday nature of diabetes quickly ages any accomplishments. It’s all about what you have done in the last day, hour, and meal!

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A neurologist did a through exam of a friends brain activity and in an attempt to quell my friends concerns told him that, “his brain showed that it was unremarkable”! My friend, his brother and family as well as myself all go around talking about how “unremarkable” our brains are!!!

Hope you (and all us other stroke survivors) have unremarkable brains!

All the best,
-Steve

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What a medical term, “unremarkable”. I remember being insulted when my doctor said my blood test results were unremarkable… Or something like that?.