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My PN? What do you mean it's "progressive"?

Neuropathy | Last Active: Jun 23, 2023 | Replies (36)
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@matilda1993

It’s hard not to worry about where we will be in the future while mourning our past.

I know in my heart I’m lucky - my nerves flare intermittently with pain and full body numbness, but so far these symptoms have always receded to just my numb/sometimes painful feet.

I’ve always been an artist. Before Covid I was taking a wheel ceramics class and just couldn’t get one decent pot off the wheel - I was never great at it but in the past with practice I could center the clay. I now struggle with drawing straight lines. But I can still do art and will as long as I can.

I also worry about planning travel. What if I have a flare up? My husband is retiring and this is a real worry for me. We also want to downsize and move and I’m scared of leaving my current home and switching doctors in a new city.

I will try my best to persevere. This disease stinks but I’m glad we all strive to do what we can for as long as we can.

Sending healing thoughts to everyone who suffers.

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Replies to "It’s hard not to worry about where we will be in the future while mourning our..."
Ray Kemble | @ray666 | Jun 21, 2023

Hi, Matilda (@matilda1993)

Your determination to continue with your art is a bit like my not giving up on the theater forever and a day. Friends have suggested I use a cane (which I use in everyday life, anyway) or, if necessary, a wheelchair. I'm not ready to do either of those things yet. Currently, I'm considering my options and writing a one-actor play in which I'm accommodating my various limitations. It sounds like the two of us are determined to continue with our art for as long as we can.

Moving is tough enough, but to move so far that you have to rebuild a new team of doctors? That's doubly tough. I'll have to think twice about that kind of a move. Downsizing, but doing it in place, is more manageable. My partner and I are thinking about downsizing. We each have our own houses, two miles apart. We plan to pick one (and sell the other) and refit it as much as our savings can afford for aging-in-place. But even moving within one's own city can present unique problems, especially when considering a progressive disease like PN.

My very best to you, with your art and your decision-making!

Cheers!
Ray

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