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Living With Large-Fiber Neuropathy

Neuropathy | Last Active: Mar 6 4:20pm | Replies (35)
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@njed

@ray666 Ray, as you know, I have large fiber as well and like you, I have no pain. I also have small fiber PN per Mayo in Rochester. I started with small and then developed large. I have found that using a cane is becoming something of a daily routine. I tried to hold off as long as possible but just going thru Covid, I found it necessary to use the cane as my balance was impaired but now slowly improving. The cane will provide confidence when walking. Since we can't fix it and have to live with it, you might find the cane will help with the wobbly feeling. I also do sit down - stand up exercise each day to maintain leg strength. I do about 15 of them 2 X a day. Stay well! Ed

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Replies to "@ray666 Ray, as you know, I have large fiber as well and like you, I have..."
Ray Kemble | @ray666 | Feb 28 9:55am

Good morning, Ed

I hadn’t forgotten that you, too, have large-fiber neuropathy. However, I had forgotten you have a mix of the large and the small. Now that you’ve reminded me, I wonder if I, too, might have a mix.

And maybe it’s not unusual for those of us who have large-fiber PN also to have small-fiber, too.

I read with great interest what you said about how you use a cane. I’ve only lately emerged from the shadow of shyness about occasionally needing a cane. For the longest time, I’ve been one of those (possibly all of us, at least for starters?) who was “shy” about carrying a cane, as if I toted it under my arm like a riding crop people might think that’s just what it was: a riding crop. (Where’s that fellow’s horse?). The object was never to let anyone know I had a “condition” that might make carrying a cane necessary. (When we closed that last play I’d been in, and I confided in the director that I’d decided to “take time off” from acting because of my poor balance, she offered me a role in her next play in which, she said, hoping to comfort me, I’d be welcome to use a cane. I hemmed and hawed, eventually declining, saying I’d “travel plans.” Hogwash! The truth was I was afraid if people saw me come out on stage carrying a cane, they might think I NEEDED IT. Perish the thought!)

“I have found that using a cane is becoming something of a daily routine … as my balance was impaired but now slowly improving.”

I zoomed in on what you said about “now slowly improving.” Have you found that using a cane with more regularity (and not pretending it’s a riding crop!) has helped improve your overall balance? Earlier this morning, guessing that might be what you wanted to say, I used my can with a bit more deliberateness when I went down the pre-dawn path to fetch the morning paper and honestly felt more secure. It’s made me want to learn how to use a cane correctly.

This afternoon, I’ll be meeting with my neurodoc’s NP to review my recent genetic test results. I will ask her if a few sessions with a PT to evaluate my gait and teach me correct cane usage might be a good idea.

Thanks for your post, Ed! As you might be able to tell, you’ve got my mind a-churning!

Cheers!
Ray

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