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EB-N5 and Idiopathic PN: Long-term Usage?

Neuropathy | Last Active: Sep 25 11:37am | Replies (39)
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@njed

@ray666 Ray, I imagine not having all prior activity during your struggle with sepsis, could contribute towards your progression of PN. When the neuro doc in 2016 or 2017 said to me keep moving, I took it to heart! At times, we will be sidelined, and it happens. When you can, even standing in one spot with hands inches hovering over a kitchen counter for safety could help maintain balance. Yesterday, we were out walking and a man who I never met walked up to me and asked me about the orthotics, like what did I have? I explained I have PN and drop foot. He was walking with a cane. He told me that got PN 40 years ago while in law school and now probably 70 or so. Idiopathic. He said he walks every day. His walking was slow, worse than me. His wife walks with him as does mine. I told him what the neuro doc told me years ago, keeps moving. He said that's the key. Somebody dealing with PN for 40 years gave me encouragement. We can live with this! Ed

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Replies to "@ray666 Ray, I imagine not having all prior activity during your struggle with sepsis, could contribute..."
Ray Kemble | @ray666 | Sep 15 3:55pm

Hi, Ed

‘Keep moving’ is my mantra. Folks have heard me quote Twyla Tharp so often they must be sure I’m in on the deal and getting a split of the royalties. 🙂 It’s true, though, I have her book, ‘Keep It Moving,’ sitting beside me. I dip into it whenever I feel I need a little extra boost to do just that: ‘Keep moving.’

You mention simple standing, too, as a great brain tutorial for improving balance. It’s funny you should mention standing. Only yesterday I was talking with a fellow who has balance issues similar to mine (no pain, just the wobblies). He’s got a gait coach and is determined to re-learn how to walk properly. He said yesterday something his coach said to him: if you’ve time for nothing else, just stand. And stay standing as long as time permits. Having a nearby kitchen counter is a good idea, too.

He’s also trying to wean himself from 24/7 cane-carrying. His coach has him still carrying a cane, but setting the tip on the ground every so much closer to the centerline of his body, so he doesn’t get to where his brain thinks having a wide, wide tripod (two feet plus can tip) for a base is the only safe way to go about.

You're 100% correct, Ed: We can live with this!
Cheers!
Ray

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