Saturday, November 28, 2015

DIY Medical Treatment

Barb Polan
Barb's Recovery
Posted 18th June 2014

At 10, my daughter was diagnosed with Type 1 diabetes. The inpatient pediatric endocrinology nurse who taught us about diabetes management - Lynn – was encouraging, thorough, and an excellent resource, which was just what we needed as we were overwhelmed by both the diagnosis and the treatment protocol. After three days of training us in the hospital about blood sugar and insulin activity, they sent us back out into the world to cope on our own, with graphs of insulin (Humalog, Novolog, regular, and Lantis) activity vs. time that I just couldn’t understand how to apply. She had to figure out the correct ratio of insulins, based on her blood sugar and what time she’d be eating that day, and then mix them? Lynn, you really can’t tell us exactly what to do?

One of the things Lynn emphasized is that we would always be hearing of “cures” just around the corner, and not to get too excited by them. She said that in the 20 years she’d been in endocrinology, she had heard of dozens of studies that promised fixing the islet cells in the pancreas so that pancreas transplants weren’t the only “cure” option for those with Type 1. In the case of transplants, she said, the “cure” was worse than the disease: anti-rejection treatment took a greater toll on a body than diabetes did.

Lynn’s advice was that the way to look at Type 1 diabetes was not to pin our hopes on a cure, but to plan on managing it well – to develop a way of treating it properly, in order to be able to accommodate it in Millie’s life, without permanent damage being done to her eyes, nerves and kidneys.

Just yesterday, I read about a “bionic pancreas” that leaves the patient free to live and eat as desired, with blood sugar levels remaining within normal ranges. Immediately, I was calculating that Millie would be 30 (20 years post-diagnosis) when the product was expected to come on the market.

Then I thought of all the previous “cures” or improved gadgets that had been studied, only to disappear off the radar. One I remember learning about was at a seminar: an insulin pump including an automated blood sugar monitor for a feedback loop was in seemingly successful clinical trials in California; I have never heard about it again.

And then there’s the perceived cure-all: stem cells.

As this relates to stroke …

As much as I hope and pray for a miracle stroke recovery protocol, the best I can do now is incorporate my new condition into my life as it is.

I don’t mean to encourage losing hope, but, as Lynn suggested, I’m hedging my bets. I’m living my little life being as happy and productive as I can. I don’t expect a magic pill or invention that will bring on my full recovery, but I will plod along doing the available therapies as hard as I can, always hoping for the best return. And if a “cure” comes along, all the better.

Managing stroke disabilities means developing a way of life that works for the survivor, just as Millie developed her own effective insulin protocol related to her activity and food.

That self-directed management included getting a pump when she was 12, the youngest patient, up to that point, to get a pump at UMass Medical Center. Once she found out about the pump and talked to teenage girls who had them, Millie spent a year butting heads with her pediatric endocrinologist about getting one. Not a big surprise: Millie won.

In the same way, stroke survivors investigate available therapies and see what works for them. Sound do-it-yourself? It is.

We use our doctors and medical personnel as advisors and resources, but ultimately make the decisions ourselves, based on the, albeit incomplete, information we gather.

Sometimes that involves butting heads with our “specialists.”

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