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My PN? What do you mean it's "progressive"?
Neuropathy | Last Active: Jun 23, 2023 | Replies (36)Comment receiving replies
In rereading the post I left yesterday about the signs of PN progression, I see I was too easy on myself. It's my nature to err on the side of the "least concerning." I made light of my dropping things and poor handwriting, as though I was wanting to give the impression that these everyday Ooops! weren't new and, therefore, nothing I need to be worried about (or, in other words, they're not signs of my PN getting worse).
In truth, I am worried––or not so much "worried" as feeling more and more sure that they are signs of my PN getting worse. The need to be 100% honest about these things is heavy on my mind because I'll be meeting with my neurologist in a few weeks (a meeting I requested), and I want to be 100% honest with him about not only the symptoms I'm sure of (my lousy balance and wobbly gait) but also those I'm now beginning to suspect of being true signs of my PN getting worse. I don't want to evade the truth. After all, what's to be gained by that?
I remember how, back in my drinking days (well over 30 years ago), when a doctor would ask how many drinks I'd have in a week's time, I'd fib ("Oh, maybe two or three"). It didn't do me any good back then to duck the truth; the last thing I want to do is duck it again when it comes to my PN symptoms.
Ray (@ray666)
Replies to "In rereading the post I left yesterday about the signs of PN progression, I see I..."
Ray- I want to join the porch coffee club too!
I’m in my 6th year following PN diagnosis and the balance issues and the numbness/tingling/discomfort is advancing. I think once you get a definitive diagnosis following all the testing, once you go to PT and get a personalized Home Exercise Program, once you research through the links this site provides, you just have to get on with life and ignore the “Big Picture”, because it is the truth that there is no cure, the doctors don’t have the answers we would love to hear. It’s a lone journey and you just gotta work with what you got 😊
I too was very active, I play “whack-a-mole” with thoughts of what I used to do and enjoy, it’s unfortunately necessary to not focus on the old times. It’s time to think positively about ways to do things that you would never have considered in the past- like traveling with a group bus tour- someone else plans the details and help is immediately available if things go wrong and it’s easy to pace yourself. If you like the beach, an ECV makes the Boardwalk a breeze. I’ve used car services to smooth the way after flights, whatever helps you.
As far as the handwriting- try resting your forearm and elbow on the table and hold your wrist with the other hand to stabilize it, use a fatter writing implement (like a fountain pen width) or do a few wrap-arounds of electrical tape. I’m guessing you are using college-width lined paper, that will make it easier to space letters.
Everyday is a day and we just go forward and do our best!
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My PN is definitely getting worse. but it could be caused in part by my recent prostate surgery. Prior to COVID my wife and I used to spend our summers in Maine and go on a couple cruises every year.
Since COVID no more travel. Using a walker I have a hard time walking one block. Inside the house I can shuffle around without a cane but not so outside the house. I am now 86 so I blame some of the decline on my age but how much I don't know.