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Newly diagnosed with Neuropathy - Advice?
Neuropathy | Last Active: Sep 12 8:15am | Replies (49)Comment receiving replies
Hi Janet! If you add the word Idiopathic and change the word “mild” to “severe”, I have what you have. It sounds like you are out of the gate running and full of determination already, and just by finding this forum are so far ahead in confronting this PN head on.
I feel like I was doing a lot of the right things, but since it took me a couple of years to stumble on this Mayo Connect forum, I was on my own, guessing my way through living with this thing, without validation that I was doing good or bad for myself. EXCEPT for Physical Therapy - that was and continues to be my foundation for getting through the life challenge of PN. I have a daily exercise routine at home, and schedule professional sessions when I need some tuning up.
What I wish I’d done differently perhaps was to have gotten the chip off my shoulder sooner. While I think some frustration in lack of medical direction and support in dealing with PN is normal, in hindsight, I wish I hadn’t spent the negative energy, as all our energy could be much better used to positively figure out what we can be doing to help ourselves. Sure, we all want to understand what “happened” to us and want to help doctors find a “cure” for us, but the only thing we can control today is finding what works for us to maintain or improve living with this, and try our best not to regress.
It seems to you’ve hit the ground running, I love your determination and motivation, and hope we learn a lot from you!
Replies to "Hi Janet! If you add the word Idiopathic and change the word “mild” to “severe”, I..."
" I have a daily exercise routine at home, and schedule professional sessions when I need some tuning up."
Good morning, Debbie. I like the simplicity of your approach: a daily routine at home and professional coaching when you feel you need a "tune up." I'm a decision point right now. I've been enjoying the benefit of at home coaching, covered by my insurance, not because of my PN but my sepsis. That coverage ends on 9/3. Thanks to the coaching I've been getting, I've cobbled together a reasonably good at home routine, but that professional coaching has only a few days to go. I know that I'll need an occasional "tune up." It's time for me to have a couple of chats with my various doctors, chiefly with my primary, about either an extension to my coverage (which may not be possible) or some out-of-pocket coaching. I know how vital this is, especially (for me) maintaining leg strength.
I was reminded only last evening of the importance of maintaining leg strength: I did another one of my unplanned "sit-downs," turning too abruptly and plopping onto a nearby ottoman. I'd prefer not to call my unplanned "sit-downs" falls (although that's what they are). I got up (laughing a bit at how challenging it was to get up :-)), uninjured, but reminded once again of the absolute importance of maintaining good leg strength.
Cheers!
Ray (@ray666)
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Debbie, thank you for your encouragement and supportive comments. I do feel so fortunate to have discovered this forum so early in the game, as other than my husband, a close friend, and our daughter, I really haven’t shared my symptoms or my new (as of this week) diagnosis, so it’s good to be able to “talk” about it in a save, supportive environment. Right now, it doesn’t “show,” and hasn’t slowed me down, so I don’t want it to define me, if that makes sense. I’m grateful to have a nursing background, which makes it much easier to navigate the wealth of information out there. I have already learned so much from all of you. Take care!