Connect
← Return to My PN? What do you mean it's "progressive"?
Discussion
My PN? What do you mean it's "progressive"?
Neuropathy | Last Active: Jun 23, 2023 | Replies (36)Comment receiving replies
My signs of “ progressive” have to do with a very gradual decline in activities and a very real increase in my disabilities. Facebook memories is very good at showing just how quickly I’ve deteriorated in the last couple of years. And really fast in the past year. Things I was enjoying a year ago: hiking weekly, some kayaking, my spring gardening (as always), and visiting my sons in NYC, which I’ve done by traveling alone for the past 10 years. I just got back from NYC, it was a grim test of perseverance this time, and I told my sons it was probably my last trip. Just before I read your post, I was wondering (again) why I don’t start my morning out on one of my lovely porches, and realized that it’s because of pain - I require the recliner and heating pad to start the day.
I am 62. Certainly not how I had planned to live at this age! Ray, you sound like someone I would enjoy having a cup of coffee with! I would say do a little mental inventory and ask those around you what they’ve noticed.
Replies to "My signs of “ progressive” have to do with a very gradual decline in activities and..."
Connect
Good morning, @julbpat
You say that your signs of progression are a very gradual decline in activities and a very real increase in disabilities. I'm afraid my signs are similar on both counts: decline in activities, and increase in disabilities. In rereading what I'd written yesterday, I felt I'd underplayed my concern about both signs, which I'd not wanted to do, but, oddly enough, it appears I did anyway. I'll admit that it's my nature to put a humorous twist to everything; for example, my having made light of how illegible my handwriting has become. I'm a daily journal writer (by hand), and an hour ago, I paused while journaling to reflect on how poor my handwriting has become. This wasn't something I'd only noticed recently; I'd been seeing it for years, but shrugging it off, telling myself, "Oh, don't worry, Ray. You've got a lot on your mind, that's all." But a month ago, my neurologist asked if my handwriting had grown worse recently. I laughed it off: "I've always had poor handwriting." But that wasn't true. My doctor was looking for signs of progression, and I hid behind a joke. I'm pretty sure my increasingly illegible scribbling is a sign of the progression of my PN.
Similar to what to describe, I also enjoyed a host of outdoor activities: mountain trekking, cross-country skiing, off-road cycling––all activities I've since had to give up. For years, my partner and I rented a mountain cabin, which only the year-before-last we gave up, convincing ourselves it was because of the fire danger (which was real); in reality, it was me and increasing inability to manage even the uneven ground surrounding the cabin. (I'd become jittery about walking even the 200' path––sharply downhill and rocky––from the cabin to the outhouse. If that isn't a sure sign, what is? LOL)
Ah, NYC! My hometown––or my former hometown. I was born and raised in NYC. My sister-in-law and a half-dozen nephews and nieces still live there, not in NYC but in Rockland. I used to go back regularly, but not so lately. My last visit was pre-Covid. Since then, I've had to consider my increasing balance problems. I've been telling my family, "Maybe next year." But if my PN symptoms worsen, there may never be a "next year."
You also sound like someone I'd enjoy having coffee with. Shall I start a fresh pot? Do you like your coffee black? Or "reg'lah," as we used to say on Second Avenue, with a splash of milk?
Ray