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Learning Past Cause vs. Quality of Present Life?

Neuropathy | Last Active: Aug 2, 2023 | Replies (52)

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@njed

@dbeshears1 - Deb, on your comment from 2 days ago....I agree with you 100%!! I have learned more from the folks who participate on the Connect than I do from several docs. I think I know why. We are what you might say on the "front lines". We live with this damn disease every day and one way or another, we figure out how to manage it. The doctors do try, don't get me wrong but until they walk in our shoes with the pain, numbness, poor balance, use of canes and walkers, they don't know what it is like. We do, we share our experiences and know what it's like. Also, several docs I've seen are frustrated in that they can't help me. Those doctors are the ones I continue to see. And, as long as we post, we can learn from one another, in my opinion, the best source of info could be ourselves. Keep moving! Ed

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Replies to "@dbeshears1 - Deb, on your comment from 2 days ago....I agree with you 100%!! I have..."

You’re so right! I know we share our experiences with our doctors, but none of our individual doctors is a data repository and doing a scientific collection for research or sharing. So this group is valuable “front line” stuff! I saw where @johnbishop posted a link today about some PN research funding tucked away in a congressional Department of Defense bill that has a good chance of being approved. I believe that’s where the most hope lies, with government providing funds which provides medical programs incentive to prioritize focusing more research to help the growing number of folks afflicted for many unknown reasons and no treatments known. Trying to more actively tackle this PN medical mystery will hopefully help next generation and keep people with active lives, and in the workforce!