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Newly diagnosed with Neuropathy - Advice?
Neuropathy | Last Active: Sep 12 8:15am | Replies (49)Comment receiving replies
@duh1eye Hi Janet - Glad to see you are off to a good start. I've been a member of this forum for several years and I have rarely seen so many responses in a day or so which means you have hit on a subject of interest to many of us. Advice. And those of us with PN know best what we are going through. I was diagnosed with idiopathic sensorimotor axonal PN about 8 years ago and confirmed by Mayo in MN. I like the idea you are working with a trainer and for me, the more active I can be, the better I feel. There are good and bad days which no doubt, we all feel. My largest problem is numbness and increasingly poor balance. Doctors can tell you what you have but I have found that those living with PN are best to give clues on what works for them. Since you have been following this forum for a few months, you know what might work for one will not work for all. I'd like to make two suggestions. First, remain positive and second, remain active. I wish you the best!
Ed
Replies to "@duh1eye Hi Janet - Glad to see you are off to a good start. I've been..."
Good morning!
You're going to get so tired of hearing me quote choreographer Twyla Tharp, but so many things she has said over the years have helped me to live with my PN. Reading this morning's posts about the importance of having a positive attitude and moving about (safely!) as much as possible reminded me of something of hers that I'd scribbled in my commonplace only a few weeks ago:
"With the time you've got left, choose to make your life bigger. Opt for expression over observation, action over passivity …. Be deliberate, act with intention …. Make each day one where you emerge, unlock, excite, and discover. Find new, reconsider old, become limber, stretch, lean, move."
Like Ed, my biggest problem is poor balance. I still get around pretty well, but lately, I've noticed that my "getting around" is never quite as Oops-free today as it was yesterday. Nevertheless, I'm okay with that. And that okay-ness came with acceptance –– acceptance without a surrender. I'm determined to keep plugging away, every day, do as much as I can for as long as I can.
Keep moving! 🙂
Cheers!
Ray (@ray666)
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Thank you, Ed, for your kind words, and encouragement. I have never been on any forum, of any kind, so it was a stretch for me to even begin participating in this one. But am I ever glad I did, and so early in my PN journey. I am determined to keep my chin up, and my body moving, and am grateful for a throng of folks who know what I’m experiencing, to cheer me on.