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Learning Past Cause vs. Quality of Present Life?
Neuropathy | Last Active: Aug 2, 2023 | Replies (52)Comment receiving replies
@ray666 - Figured I'd jump in on this one. More than likely, we all start out with the "what do I have"? What caused this? And what pill do I take to get rid of this? Then, after we see a few doctors and some tests, the reality begins to set in. More than likely many of us kind of end up with a number 3 scenario always wanting to know where it came from and fighting to lessen the pain, numbness, balance issues and other effects of PN. After years pass with no concrete answers, I feel many with PN will shift to that quality of life you mention. My neuro doc said that with my diagnosis from Mayo, even if we find out what caused this PN, it can't fix it. Personally, I'm now more focused on the quality of life. It is OK to keep an eye on the rear-view mirror so to speak but I'm more interested in what's ahead down the road and making sure it's a smooth of a ride as possible. If I can't change the past, I might be able to control the future. Best to all and as always...keep moving! Ed
Replies to "@ray666 - Figured I'd jump in on this one. More than likely, we all start out..."
Hello, Ed (@njed)
I also realize that expecting an answer to the question, "What caused this?" is a bit of a hopeless pursuit. I learned from watching my neurologist's face, the face of a man I trust. I'd no sooner begin to ask, "What do you think may have cau–– ?" and I see a veil fall over his face––the face of a man who's ordinarily eager to talk––like I was his toddler son about to ask, "Why's the sky blue, Daddy?" The lesson was clear as anything: Better to spend your time, Ray, going for walks (no matter how clumsy) and doing your stretches, strengthening, and balance work!
Ray (@ray666)
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Love that Ed, sums it up very well. I think I’ve accepted whatever it is and I focus on what I CAN do, but sure wish there was enough to know more about the “normal” road ahead for me so I can make more informed major life decisions for my spouse &I (like the major household move and purchase to new state we just did). I worry about ending up on the floor at any moment with permanent incapacity and needing to shift to nursing home for rest of life. (I don’t worry as much about God taking me permanently). I’ve asked the direct questions to doctors but for the few doctors I’ve asked, it’s been a quick and simple “I don’t know”, not even a wide range of possibilities, no elaboration at all. Ive never been able to even get what my “average” expectations should be regarding disability prognosis. They say so many of us have idiopathic PN, yet I guess they haven’t studied & analyzed how people have fared with it. I’d hope it would be like medicines or vaccines or other treatment expectations or disease post-mortems given like “30% got sore arms within 24 hrs, 10% ended up in wheelchair after X yrs, 60% lost ability to type or flip pages after Y yrs” etc, or even something as vague as “50% reported diarrhea and the other 50% reported Constipation”. That’s why I get stuck in the rut sometimes in wanting to know more about the likely cause - then maybe the group I best fit in is narrowed more so maybe my focus on best therapies to use can be narrowed, and I can be better informed for making big life decisions.
Oh well, absent that we move on, not fear the unknown and just keep doing what we think is best, and trying to find and learn from who we think are most affected similarly. And you’re right, moving is the solution! Sitting, getting weaker, and feeling sorry for ourselves will not help any outcome. One thing I am certain about is getting in the pool again today and doing my PT exercises because it’s a win-win in this awful heat!