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Is it PN? Or is it something else?

Posted by Ray Kemble @ray666, 16 hours ago

Hello, PN'ers!

I have large-fiber PN, which means I'm fortunate in not having any PN-related pain but a good many balance issues. Insurance has recently enabled me to restart PT. Since restarting (two months ago), I've noticed days when I have extreme wobbliness, seemingly out of proportion to the balance challenge I've been facing for a number of years.

What is puzzling me is whether this extreme wobbliness is merely the result of the renewed PT––and therefore a "good" thing and I should press on, trusting I'll experience positive results in time––or a sign of my PN having gotten worse (I've thought of asking my neurologist for another EMG, hoping that might give me the answer).

Do others of you sometimes find yourselves trying to puzzle out similar riddles: Is this "something" I'm feeling a "good" something, the result of regular exercises, keeping in motion, etc., or is it a "bad" something, a sign that your PN is progressing (worsening) in a way you'd always hoped it wouldn't?

The only thing I know for certain: PN sure can be a trickster! 🙂

Cheers!
Ray (@ray666)

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John, Volunteer Mentor | @johnbishop | 12 hours ago

Hi Ray @ray666, I would like to think it's something else and my PN is not progressing but I really don't know. I go back and forth between some Sketchers, OrthoFeet and Xero barefoot shoes almost daily and sometimes when I'm not wearing the barefoot shoes I feel a lot more wobbly. I think it's because they are a little cushy and allow my feet to move laterally more than if you have better contact with the ground using the barefoot or zero drop sole shoes.

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Ray Kemble | @ray666 | 10 hours ago
In reply to @johnbishop "Hi Ray @ray666, I would like to think it's something else and my PN is not..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hi Ray @ray666, I would like to think it's something else and my PN is not progressing but I really don't know. I go back and forth between some Sketchers, OrthoFeet and Xero barefoot shoes almost daily and sometimes when I'm not wearing the barefoot shoes I feel a lot more wobbly. I think it's because they are a little cushy and allow my feet to move laterally more than if you have better contact with the ground using the barefoot or zero drop sole shoes.

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Hi, John (@johnbishop). I've even thought that it may be nothing more than I've a finite number of steps that my feet and legs are able to take in a day, and if I exceed that finite number, I'm fated to have a wobbly late afternoon and evening. Today: case in point. This morning I had my weekly PT session with Adam, my therapist; Adam, who's working hard to restore my leg strength, always leaves solidly rung out, but it's that good kind of "rung out:" the after-effect powerpacked workout. A few hours after, I drove my partner to her Wednesday chemo treatment; that's something I do every day for seven days straight (until she has three weeks off from chemo). The whole hospital experience leaves me bushed: a long, long walk from where I'm able to park, followed by a couple of hours trodding a hospital's faux marble floors (I do sit, but I get antsy and need to pace about). All-in-all, a day like today has me thinking, "Ray, go easy! You've only got two city blocks … or a half-mile … or 37,000 steps (I wish!) in these legs of yours. So, go easy!" (Ah, the joys of PN! 🙂 ) –Ray (@ray666)

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