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PN: From Anger to Acceptance
Hi, there!
Where are you on the road from anger to acceptance? A Foundation for PN webinar my partner and I watched the other evening got me thinking. I’ve long believed I was fully encamped in my PN acceptance, tent staked and taut, air mattress filled, sleeping bag unrolled, ready for another comfy night’s sleep in my belief. But after listening to that webinar, I’m no longer so sure. If I’m to be honest with myself (and you), I still have moments when I think, “Why me?” (Other than occasionally to my partner, I pretty much keep these moments to myself.)
I was diagnosed with large fiber sensory-dominant polyneuropathy a year and a half ago. I remember when I was first diagnosed, and the neurologist said the two words we least like to hear, “incurable” and “progressive,” my heart skipped a beat. I wasn’t so much angry as I was alarmed: What’s this large fiber whatchamacallit all about? So I studied up on it. I learned all I could. I joined Connect. I bugged my neurologist with lots of questions. So, if only a few days ago, you’d asked me if I’m fully accepting of my disease, I’d have answered, “Yup, fully accepting!”
So, why, then, do I still have these occasion “Why me?” moments? My partner assures me that’s only normal. I suppose it is. I’m still an accepting guy, and all of my friends relate to me as someone who’s come to terms with his PN. (That’s how I’d like them to see me.) But I thought I’d ask: Do others who, like me, believe you’re pretty accepting of your PN still have an occasional “Why me?” moment? Are such moments ones that tell you you’re still not fully accepting? Or, as my partner says, are they merely moments when such fleeting “Why me?” thoughts are perfectly normal? I’m curious.
Cheers to all!
Ray (@ray666)
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Hi Ray. . I know you posted this a while back, but I just started reading this thread, and I was interested about your comment about avoiding alcohol.
How do you know that alcohol is the cause of your neuropathy? When you stopped drinking, did you get better, or at least not get worse. I assume you were a healthy drinker (as I was) prior to your diagnosis. If you don't mind my asking, how many drinks per day did you have?
I used to have around 4 drinks per day, almost every day. I was told by one neurologist that I had alcoholic PN. Others disagreed. I stopped drinking for about 3 months, but continued to get worse, so I went back. Now, I have 1-2 glasses of wine every day. I continue to get worse.
I did a bit of research, but couldn't find anything specific about how many drinks per day are likely to cause PN, just the usual warnings to everyone to not exceed 2 drinks per day. It may be even down to one now.
Thanks in advance for answering my questions.
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1 ReactionHi, jeffrapp (@jeffrapp)
My drinking preceded my PN by decades. Like many, I started drinking when I was in high school, on the sly, of course, although 18 was legal in NYC at that time. Then I drank through my undergrad and army days, straight through my grad school days, and into a career in the theater, which only accelerated my drinking. How many drinks daily or weekly? I'm honestly not sure. I was in a hard-drinking crowd, especially in the theater (never before or during a performance). I finally quit in the late '80s or early '90s. At the time, I had no PN symptoms. If I had PN at the time, it was well hidden. My earliest recollections of brief episodes of balance weirdness date back to the 2010s ('10, '12, ''15) when I first experienced what were probably signs of developing PN. Those episodes grew more troubling (unsteadiness on stage made me give up acting in 2019), but it wasn't until the summer of 2022 that I saw a neurologist and got my PN diagnosis. What made me curious about a possible link between my long-ago drinking was a passing mention by a neurology nurse of a "shadow" on a brain MRI (nothing to worry about, she said) that might be a residue of my drinking days. I don't give it lots of thought, but every now and then, I'll find myself wondering, "Mmm, might those years of drinking have planted a timebomb in my nervous system––a PN bomb that has only exploded in more recent years?" I suspect there's no surefire answer to that question.
Ray (@ray666)
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3 ReactionsHi, @centre
Yup, I'd actually known that literary allusion but have long since given up referring to it because hardly anyone has heard it. And if I am asked, Why 666? I generally answer with the first thing that pops to mind, like 6 + 6 +6 = 18, and, as we all know, 18 is the Mark of Zorro. 🙂
Ray (@ray666)
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1 Reaction@jeffrapp
May I ask what a healthy drinker is?
Jake
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1 ReactionExcellent question, Leonard. In my drinking days, I never stopped to ask myself: Am I a healthy drinker or an unhealthy one? I was just a drinker. And drink was everywhere and plentiful. What caused me to finally quit (and quitting wasn't easy) was realizing that I'd lost all ambition. I'd find myself driving home nightly from the theater where I had a day job as an administrator, grabbing something passable for supper, plunking myself down on the sofa, and drink––just drink (usually Jim Beam & coke)––until I was so, so sleepy. Then I go to bed, normally around 8 or 8:30, night after night. I'd wake up the next morning, look around, and think, "This crazy!" and vow to quit. I did finally quit, but not until I'd been playing the same nightly game for 5-6 years. ––Ray (@ray666)
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2 ReactionsWhat I meant was a substantial drinker, but if you are asking what I said literally, it also means I was healthy other than the PN.
See the response to Ray for more info.
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2 ReactionsHi Ray
Looks like you could drink me under the table in those days.
I know alcohol is a neurotoxin, but what I don'r know is how much it takes to cause PN.
It may sound stupid, but I really enjoy a glass of wine with dinner. I'm 79. I suspect nobody can tell me whether giving up the wine will improve the rest of my life, or will I just be giving up another pleasure for no gain.
I think I'll just stick with the wine.
Here's to ya!
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2 ReactionsHi, Jeff
When I finally quit––and it wasn't a matter of "one final drink, and that's that;" it took me easily two years before I had that final drink––two temptations lingered; one was seeing someone sip a lovely glass of some golden beverage on the big 70mm movie screen, and the other was when friends were enjoying a glass of wine with dinner and I wasn't it. The 70mm temptation faded pretty quickly. The glass of wine with dinner? That has persisted, although I've no trouble resisting it any longer.
By the way, I, too, am 79.
Ray
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2 ReactionsAre you aware of the work a company called Winsantor is doing for neuropathy?
https://wefunder.com/winsantor/updatesHere's a video they did after one of their trials with DPN patients.
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1 ReactionHas anyone used the Hvye Infrared Light belt for your feet and calves? Looks like a product that may work over time.