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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@ray666

Good morning, chawk (@chawk)

We have a lot in common. I was diagnosed with idiopathic neuropathy in 2022. To give it its full name: idiopathic large-fiber sensory-dominant polyneuropathy (a mouthful!). I also had a case of foot drop, but that was many years ago, years before the arrival of my neuropathy (as best I can tell).

What we’ve also got in common – what really made me zoom in on your post – is a history of long-stance running. I moved from LA to Denver expressly to run in my first-ever marathon: the then-called United Back of Denver Mile-High Marathon. (I finished, but oh, boy, please don’t ask how I did. 🙂 )

That was about the time I became a running junkie, not able to pass up a single citizens’ race, no matter the length, the whereabouts (as long as I could afford to get there), how I was feeling, or what else might be going on in my second-place social life (sad, I know). It wasn’t until the late ‘90s when my ortho doc slapped an X-ray of my right knee up on his lightbox and spoke those words we runners dread to hear: “Bone-on-bone.” A subsequent knee replacement brought my running life to an end.

Cutting to the chase: a good pair of shoes for us neuropathists? (Neuropathists? Is that a real word?) I’ve been searching for that “good” pair of shoes ever since I got outfitted with a titanium knee, but I never had much luck. (My current pair: Brooks Addictions, fitted with a pair of $$$$ orthotics; they’re “good,” but … ) (I loved your “ … but cover as much distance side to side as I do going forward.”)

That’s enough blah blah from me. I just wanted to say hi: one inebriated Popeye to another!

Cheers!
Ray (@ray666)

P.S. You have the medals; I have bureau drawers packed with racing events tee-shirts, so many that many boast of races I don’t remember running. 🙂

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Replies to "Good morning, chawk (@chawk) We have a lot in common. I was diagnosed with idiopathic neuropathy..."

Hi Ray--Good to hear from you!

I really got a kick out of learning that you moved from LA to Denver to do the Mile High Marathon. As it happens, I moved from Denver to LA a couple of years after my wife, a veteran of the Mile High, got me into running! In Denver, I wrote for the late, great Rocky Mountain News and left it for a job at the LA Times. We've lived in Ventura since 1988.

Bummer about your knee! But not being able to run makes walking all the more important, and neuropathy transforms a good pair of sneakers into the Holy Grail.
I'm on Altras right now but they don't feel quite right. Of course, it may be that my feet won't feel quite right in any shoe--just because they don't feel quite right anywhere.

I don't know if my neuropathy has its roots in running but I remember the warning my Denver podiatrist, Eddie Raczka, issued to all his running patients: "In 30 years, you guys will have great, healthy hearts--but your feet? Forget it!"

In the non-shoe area, are you doing any supplements that have helped? A friend gave me some alpha-lipoic acid pills (dude--I scored some acid!) and I just upped my dosage from 600 mg to 1200 mg. Some folks report good results. Thankfully, there's always something new to try!

Take it easy,

Steve