@bkfoster1 please don’t despair! Many people have PN and continue to do great things! It’s not the same in everyone, so you should not compare yourself to others. Some people choose to focus on other things like hobbies, or reading etc.

You can be productive, positive, and helpful with PN.

Blessings!
Susan

Hi, Barb (@bkfoster)

You've asked the $1,000.000 question: How do you stay positive? (Applying COLA, I suppose that's now a $20,000,000,000 question.) I wouldn't pretend to know the answer for everyone. I suspect each of us has their own answer, or for many of us (me included), we're still working on finding the answer. I can only answer fairly for myself. And remember, my diagnosis is relatively recent, only last August, compared to most others here. I'm still speaking as a neophyte.

You didn't say if your doctor told you what sort of neuropathy you have. That wouldn't be surprising. He may not know, not yet, not until he's consulted with you more. That's the case with me and my diagnosis, even after ten months. "Officially" (from my doctor), I have "idiopathic axonal peripheral neuropathy." That was all he felt he could reasonably say at the end of my EMG. Since then, I've added other words, the result of lots of reading and listening (online) to a dozen or so webinars (available on the Foundation for Peripheral Neuropathy's YouTube site). I avoid "junk" websites (and there is a gazillion) like the plague. I now say, "unofficially," I have a "sensory-dominant, large fiber, axonal idiopathic peripheral neuropathy."

I believe knowing what sort of neuropathy a person has can help immensely when it comes to knowing what therapeutic path to follow. I will meet with my doctor in a couple of weeks to ask if my attempt to refine (add to) my diagnosis makes any sense. If he says yes, I'll follow up and ask the less costly question (not $20,000,000,000 anyway): What do I do? (besides the home exercises I have been doing).

I could talk for hours on this (Oh, no! LOL), but my workday starts soon and I want to give this a sort of "finish." I'm not a courageous guy. If I come across as "positive," I'll admit I don't know how, I can only guess. I guess I'm doing some "re-framing," reordering my priorities, allowing for what up to this point is terrible, terrible balance. For years (decades before my recent diagnosis), I followed a three-part pattern to my days (without being too strict with myself, changing the pattern when needed): Mornings for creative work, afternoons for what I call "physical" stuff (everything from shopping to fixing a leaky faucet), and evening for restorative activities; e.g., reading, watching TV, being with friends. Now that I have my idiopathic whatchamacallit, I still follow the same pattern, but with adjustments: Mornings for creative work (no change there), afternoons for those physical tasks (but only things I can do safely without falling), and evenings for restorative pastimes (more urgent than ever! a little quieter, maybe, but still fun). (There's a history to this three-part pattern. If anyone is curious, let me know.)

I have a feeling you'll get plenty of good tips from others on staying positive. That's the magic of being in a group like this.

Cheers! (and I mean that more than ever)
Ray