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My PN? What do you mean it's "progressive"?
Hello, fellow PNers!
We've all had toothaches at one time or another. Do you remember what that's like? When you have a toothache, that's all you can think about, that toothache! I've started to wonder if that's what's happening with my PN and being told it's likely "progressive." Every little thing that I feel––or don't feel––fumble, spill, stumble over, or get backward, I think, "Uh oh, is this a sign of my PN progressing?"
In August of last year, I, at an otherwise healthy 78, was diagnosed with idiopathic peripheral neuropathy. Since then, we've refined that diagnosis to sensory-dominant, large fiber, idiopathic polyneuropathy. (I know, that's quite a mouthful.) I'm one of the lucky ones in that I have no pain. My balance is terrible, and walking, even the shortest distances, is no fun. It took an EMG to tell me that I'd lost sensation in my feet; at the time, it didn't appear to have traveled up my legs––not yet, anyway. The neurologist told me that my PN was "likely progressive," but that wasn't a sure thing or, if it did progress, was it possible to predict how soon and it what way.
That was ten months ago. Since then, like that aching tooth you can't NOT think about, I'm noting every little thing I do wrong. For example, the other morning, I dropped my coffee mug. Right away, I thought, "Ah, my PN! It's happening!" But I've been known to drop things before, all my life, not a lot, maybe, and I'm still not dropping things "a lot," but could it be my PN? Another example? My handwriting (and I still handwrite letters) can be pretty tough to read (even for me!), but I've never had the most legible handwriting (think: a doctor writing a prescription while sitting on top of a cement mixer). Recently, I've been paying more attention to my inferior handwriting, wondering if it's actually getting worse ("Uh oh, another sign of my progressing PN!")
Can you see where I'm going with this? I'm driving myself ditsy trying to separate actual signs of my PN getting worse from ho-hum happenings of Typical Ray going about his business: dropping a coffee mug, scribbling a note to himself that even he can't read; other things, too, like tripping over a garden hose (not falling, at least), more and more saying "no" to doing things because the walking to get there is no longer fun––on and on.
Not everything can be a sign of my PN getting worse. But some maybe are. How do I tell which from which? That's my problem. Have you experienced this, too? Did you ever manage to get things sorted out? How did you do it? I'd like to know.
Cheers!
Ray (@ray666)
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Good morning, Susan (@SusanEllen66)
I hadn't heard of Cutaneous Polyarteritis Nodosa. You say it's large fiber, too, like mine. Of course, I'm still guessing, going by what I've been reading about PN's various symptoms. I've only had my diagnosis of idiopathic PN, but I'll be meeting with my doctor in a few weeks, and I'm hoping we'll be able to refine my diagnosis a little bit at that time.
I'm so glad to hear you say that your PN, as progressive as it's shown itself to be, is not a "huge issue." That speaks of resilience! I applaud you for that. I can only hope to be half as resilient as I continue living with my PN.
I also applaud your saying that every moment of living is a gift. I've had moments since my PN came along when I doubted that. I've recently learned that keeping my spirits up is a matter of reframing each day, rearranging my ambitions, and holding topmost in mind the many things I can still do. I can regret the many things I can no longer do, but what purpose would that serve? Between the "can do" and the "no longer can do," I'd rather I appreciate the former and not dwell on the latter.
Cheers!
Ray
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3 ReactionsHi, Matilda (@matilda1993)
Your determination to continue with your art is a bit like my not giving up on the theater forever and a day. Friends have suggested I use a cane (which I use in everyday life, anyway) or, if necessary, a wheelchair. I'm not ready to do either of those things yet. Currently, I'm considering my options and writing a one-actor play in which I'm accommodating my various limitations. It sounds like the two of us are determined to continue with our art for as long as we can.
Moving is tough enough, but to move so far that you have to rebuild a new team of doctors? That's doubly tough. I'll have to think twice about that kind of a move. Downsizing, but doing it in place, is more manageable. My partner and I are thinking about downsizing. We each have our own houses, two miles apart. We plan to pick one (and sell the other) and refit it as much as our savings can afford for aging-in-place. But even moving within one's own city can present unique problems, especially when considering a progressive disease like PN.
My very best to you, with your art and your decision-making!
Cheers!
Ray
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5 ReactionsHi!
Your still not having a once-and-for-all, 100% on-the-mark diagnosis sounds all too familiar. I am a relative newbie: I was diagnosed only last August. However, it already frustrates me that I don't have a more specific diagnosis. Others have told me: "Don't get too impatient. That's how it is with PN, you may never have a specific diagnosis." If only I knew a little more …
When I hear that you're living in Florida but that your neuropathy prevents you from enjoying the beach, I hear an echo of me living in Colorado but unable to enjoy the mountains. It's a real tease, isn't it, the nearness to the beach and the mountains, without the ability to enjoy either, at least not in the way we used to enjoy them. We have to find compensations, don't we? For me, it's the occasional road trip into the mountains.
Thanks for your post! Say hello to the ocean for me, would you? (I was raised on the East Coast and still miss it.)
Cheers!
Ray
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3 ReactionsI could cry! I just found out I had neuropathy a few months ago, and didn't realize there was no cure. I'm reading your comments about progression of PN and erosion of ability to do the things you love to do, yet you all want to exercise. How do you stay positive?
Barb
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4 ReactionsCheers to you too,Ray!
Great hearing your story also, helps us realize we’re not alone with our issues.
I thought I was the only weirdo living by the ocean, and only been there 3 times in 4 yrs.
I’m learning to live with it!
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2 Reactions@ray666 Hi Ray,
Cutaneous Polyarteritis Nodosa is a very rare form of Vasculitis. It’s an autoimmune disease.
It damages the arteries. In turn, the damaged arteries caused damage to my large fiber nerves. So, I have PN, and Raynaud’s disease.
Blessings.
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2 Reactions@bkfoster1 please don’t despair! Many people have PN and continue to do great things! It’s not the same in everyone, so you should not compare yourself to others. Some people choose to focus on other things like hobbies, or reading etc.
You can be productive, positive, and helpful with PN.
Blessings!
Susan
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4 ReactionsThank you for sharing your story!
I feel like am I am not alone
in the world 🌎.
My sister has idiopathic PN. I differ from my sister, who at age 79, is using a walker. She experiences very bad shooting pain. Mineis probably secondary to my Lupus!
I feel we should stick together ❤️ and, find out more information about P.N. For intetest, starting PN groups, like this board, to help educate all people in PN.
Thank you for your response! Blessings. Pat!
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3 ReactionsHi, Barb (@bkfoster)
You've asked the $1,000.000 question: How do you stay positive? (Applying COLA, I suppose that's now a $20,000,000,000 question.) I wouldn't pretend to know the answer for everyone. I suspect each of us has their own answer, or for many of us (me included), we're still working on finding the answer. I can only answer fairly for myself. And remember, my diagnosis is relatively recent, only last August, compared to most others here. I'm still speaking as a neophyte.
You didn't say if your doctor told you what sort of neuropathy you have. That wouldn't be surprising. He may not know, not yet, not until he's consulted with you more. That's the case with me and my diagnosis, even after ten months. "Officially" (from my doctor), I have "idiopathic axonal peripheral neuropathy." That was all he felt he could reasonably say at the end of my EMG. Since then, I've added other words, the result of lots of reading and listening (online) to a dozen or so webinars (available on the Foundation for Peripheral Neuropathy's YouTube site). I avoid "junk" websites (and there is a gazillion) like the plague. I now say, "unofficially," I have a "sensory-dominant, large fiber, axonal idiopathic peripheral neuropathy."
I believe knowing what sort of neuropathy a person has can help immensely when it comes to knowing what therapeutic path to follow. I will meet with my doctor in a couple of weeks to ask if my attempt to refine (add to) my diagnosis makes any sense. If he says yes, I'll follow up and ask the less costly question (not $20,000,000,000 anyway): What do I do? (besides the home exercises I have been doing).
I could talk for hours on this (Oh, no! LOL), but my workday starts soon and I want to give this a sort of "finish." I'm not a courageous guy. If I come across as "positive," I'll admit I don't know how, I can only guess. I guess I'm doing some "re-framing," reordering my priorities, allowing for what up to this point is terrible, terrible balance. For years (decades before my recent diagnosis), I followed a three-part pattern to my days (without being too strict with myself, changing the pattern when needed): Mornings for creative work, afternoons for what I call "physical" stuff (everything from shopping to fixing a leaky faucet), and evening for restorative activities; e.g., reading, watching TV, being with friends. Now that I have my idiopathic whatchamacallit, I still follow the same pattern, but with adjustments: Mornings for creative work (no change there), afternoons for those physical tasks (but only things I can do safely without falling), and evenings for restorative pastimes (more urgent than ever! a little quieter, maybe, but still fun). (There's a history to this three-part pattern. If anyone is curious, let me know.)
I have a feeling you'll get plenty of good tips from others on staying positive. That's the magic of being in a group like this.
Cheers! (and I mean that more than ever)
Ray
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6 ReactionsThanks for telling me, Susan. Ever since getting my PN diagnosis, I've been dazzled by the variety of PNs and related conditions. I believe the more you learn––from reliable sources––the better off you are. Again, thank you!
Ray
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