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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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Hi Ray, SusanEllen66, paktoledo, bkfoster, harley22, and whoever is joining the conversation - WOW - there are lots of great words of wisdom, ideas, resources, and encouragements packed into this space. If I could just tell you all, you make my day. One of the facets of human wisdom is to acknowledge when (you) don't have all (or even most) of the answers, and be willing to admit it. At the same time, to share the truths of your own situations and even offer possible resources is compassion in action. Thank you one and all.
I, too, am dazzled by the array of variants of PN. Mine is Distal Symmetric Axonal-demylinating Sensorimotor PN. Pain is mostly under control through a variety of medications and PT/ myokinesthetic approaches. My balance is horrible - I walk with a cane, or walker, or rollator, depending on the situation, and have to concentrate on every step. It isn't always easy to feel positive but I am beyond grateful for all the interventions, mobility aids, great physicians and staffs, and of course to all of you. Most of all I am thankful to God, as His grace in provision of all good things, material or otherwise, is without limits. He is with me 24/7 and He hears my prayer.
I'm a retired educator (Jr Hi, HS, college) and I have a wonderful family: 3 grown kids with families of their own, and my little dog - part Bichon Frise, part Poodle.
Blessings to you all ~
Barb in Iowa
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5 ReactionsI'm curious about your three-part pattern!
Hi, Barb
I borrowed my three-part pattern (a clumsy way of saying it) from something I read once about the Bloomsbury artists and how they spent their days: creative pursuits in the morning, outdoor activities (gardening, walking, etc.) in the afternoon, and restorative (leisurely) pastimes in the evenings. Friends who've heard me (suffered through hearing me? LOL) extol the virtues of my approach to the day know that I speak of t as my Bloomsbury Triad, or simply my Triad. It so many ways, it's kept me sane, and these days more than ever.
Ray
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3 ReactionsHi, Ray -
Sure seems like a logical and natural rhythm to follow. I wonder if I could redefine "creative" as "collage of apppointments", for starters. Definitely have the "restorative pastimes" down, though! Thanks for the answer. It's a really great approach, especially for mental well-being!
Barb
Good morning, Barb
You've got a free hand when it comes to redefining any of the lobes of the triad. I do it all of the time. If you want to change "creative" to "collage of appointments," be my guest! LOL
Someone who's OCD would be disappointed with me, the way I play wild & free with my triad. I have no choice. (Wilder & freer now that I have PN.) If I've shackled myself too strictly to a "system," I get irritable. I've always hated "shoulds," "musts," and "oughts." (Every sentence my mother uttered was loaded with "shoulds" and "oughts." LOL) My triad is only a friendly suggestion made by me to me, that's all, a loosely marked path through the woods that's there if I need a little direction. (I use my triad a lot to do my PN-related exercise. That's how we got on this subject in the first place, isn't it? Our PN: how we deal with it.)
So, if "collage of appointments" works for you, go for it! Happy triading!
Cheers!
Ray
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