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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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That's a situation I face every day (I won't say "problem," just "situation"), bringing my friends to see that, while yes, some of my slowing down is due to age, a good deal of it––the most visible parts––is the result of my PN. I find myself saying (I hope in kindness), "Sure, some of the things I can no longer do are because of aging, but other things I have to shy away from because I have a disease"––and then if they seem interested (sometimes they do, but sometimes they don't), I'll explain my neuropathy, and how it might have come on me 10, 20 years ago, when my slowing down would have less to do with again.
Ray
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2 ReactionsWhoops! I had meant to end that last post: " … when my slowing down would have had less to do with AGING."
Do I now blame my posting Whoops! on aging? Or on PN? Ha!
Ray
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5 ReactionsRay- I want to join the porch coffee club too!
I’m in my 6th year following PN diagnosis and the balance issues and the numbness/tingling/discomfort is advancing. I think once you get a definitive diagnosis following all the testing, once you go to PT and get a personalized Home Exercise Program, once you research through the links this site provides, you just have to get on with life and ignore the “Big Picture”, because it is the truth that there is no cure, the doctors don’t have the answers we would love to hear. It’s a lone journey and you just gotta work with what you got 😊
I too was very active, I play “whack-a-mole” with thoughts of what I used to do and enjoy, it’s unfortunately necessary to not focus on the old times. It’s time to think positively about ways to do things that you would never have considered in the past- like traveling with a group bus tour- someone else plans the details and help is immediately available if things go wrong and it’s easy to pace yourself. If you like the beach, an ECV makes the Boardwalk a breeze. I’ve used car services to smooth the way after flights, whatever helps you.
As far as the handwriting- try resting your forearm and elbow on the table and hold your wrist with the other hand to stabilize it, use a fatter writing implement (like a fountain pen width) or do a few wrap-arounds of electrical tape. I’m guessing you are using college-width lined paper, that will make it easier to space letters.
Everyday is a day and we just go forward and do our best!
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5 ReactionsHello, @centre
I have to sign off in a moment as I have a project deadline breathing down on me. Please forgive me if I jump right to what you have to say about handwriting. I do use college-ruled paper and a pen (my favorite) with a fat-ish nib, a Vision Elite. I love fountain pens, too, but for the convenience of writing here, there, and everywhere around town, I prefer my Elites. You're right, too, about hand-to-paper posture. I always look for good wrist support. When my handwriting began to deteriorate years ago––years before PN––I blamed it on my letting my thoughts race ahead of my hand. I believe that's still true to a degree, but now, of course, PN is adding to the challenge of writing legibly.
Thank you for your observations! I hope we'll meet up again here in the Forum.
Cheers!
Ray
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3 ReactionsGood for you! Thanks for your encouraging response! It's nice to know us P.N.'ers can connect through this site Take care, may your dreams come true., Pat!
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3 ReactionsIt's gotta be the infamous AutoCorrect! That has gotten me into trouble SO many times. 🙄
Ray, I could have written your concerns and comments from yesterday and today myself. Would be happy to share a whole potful of coffee, if we could (black, please)!
It is frustrating not to be able to identify the cause of deterioration or pain. I'm 76, live alone, but see a PT every week (twice a week if I ask). Appointments are always care-filled, thoughtful, and helpful. I feel blessed to be living in my own home and still driving. And after having been in rehab last year for several weeks, I am thrilled to count taking care of my own space as my exercise (in addition to the PT). In about 5 months I will have outlived every relative on both sides, in terms of longevity...wish I had someone to ask how their senior years played out 🙂. I don't remember PN being in any conversation that I can recall. I'm not much help in terms of your questions, but I share what you're going through.
Peace,
Barb in Iowa
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1 Reaction@ray666 my PN is caused by a rare autoimmune disease called Cutaneous Polyarteritis Nodosa. My large fiber nerves are damaged. It started in my feet back in 2016, and I feel like it has progressed up to my arms and hands. My life has not been the same since. I have learned to be flexible about what I can continue to do or not. I have also taken up new hobbies that keep my mind off my pain.
Progressive PN is annoying of course, but it’s not a huge issue for me. I’m almost 74, and I have several other conditions that are a bit more difficult. Fibromyalgia is a very hard thing to deal with. The pain from that and osteoarthritis is debilitating sometimes.
Now I had to add occipital neuralgia to my list. That’s inflammation of the nerves under my scalp. It brings it’s own pain.
Life has been a great journey. Every day is different and every moment is a gift!
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4 ReactionsIt’s hard not to worry about where we will be in the future while mourning our past.
I know in my heart I’m lucky - my nerves flare intermittently with pain and full body numbness, but so far these symptoms have always receded to just my numb/sometimes painful feet.
I’ve always been an artist. Before Covid I was taking a wheel ceramics class and just couldn’t get one decent pot off the wheel - I was never great at it but in the past with practice I could center the clay. I now struggle with drawing straight lines. But I can still do art and will as long as I can.
I also worry about planning travel. What if I have a flare up? My husband is retiring and this is a real worry for me. We also want to downsize and move and I’m scared of leaving my current home and switching doctors in a new city.
I will try my best to persevere. This disease stinks but I’m glad we all strive to do what we can for as long as we can.
Sending healing thoughts to everyone who suffers.
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3 ReactionsGood morning, Barb (@bjk3)
Ah, that ol' AutoCorrect! It has a devilish sense of humor, doesn't it? LOL
As you probably know, I'm 78, and until this PN came along, I thought of myself as being in pretty good shape. Oh, a little arthritis here and there, but I figured that came with the territory. And I also live alone, although I have a partner––I guess they call them life partners––but she has her own place, two miles from here. She's 80; we're both pleased to be able still to take care of our own homes (with more and more outside help as the years go by).
PN has added a new wrinkle to our lives. What can't be overlooked is how much PN impacts the lives of others, not just the person afflicted by PN. I'm incredibly grateful that my partner is so understanding. She's a social butterfly. I'm not and never have been, even in my pre-PN days. In the pre-PN days, if the two of us received an invitation to do something "social" with our friends, and I'd balk ("I don't know … "), my partner would sometimes be frustrated with me. I could understand why. Now that I have PN, and she's been learning right along with me just how much PN hobbles a person, she immediately understands if I should say, "I'd rather just say home and read."
At the same time, I've given my partner permission––more than permission, more like a plea––that she never let me "retreat" into my symptoms. She's learned to recognize there's a line; on the far side, it's just me failing to challenge myself, and on the near side, it's me and this time and I'm really hurting. She and I are forever asking ourselves: Which side of the line is Ray on?
You say you wish you had other friends who are seniors to ask what their aging experience has been like. We, too, have very few friends left with that expertise. They, too, are "gone." It struck me last holiday season when I went to the post office to purchase some international stamps. Over the years, I've had many friends in the UK. In the past, I bought a dozen international stamps. Driving to the post office last November, I realized I only needed one international stamp this year. Funny, isn't it, how the few of us keep getting fewer.
Let me know if you're heading this way and I'll get the coffee on. Black? Me, too.
Cheers!
Ray
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2 ReactionsI can surely relate to your issues as I have been dealing with progressive numbness and nerve pain for 10 yrs now.
I have weird symptoms also like my lips and cheeks are numb, can’t feel a catheter in my bladder, can’t feel an exam in my rectum, certain stomach areas also numb.
I was at the Undiagnosed Disease Network in Bethesda, part of NIH where they did a very extensive testing regimen over 5 days, and they could not diagnose me other than to say I had CIDP and that I was unique.
Not sure if cause is autoimmune, genetic,or something I was exposed to.
Right now my life is not as I would like it to be, mybalance is nonexistent, my feet hurt and are numb.
Regular day to day functions are hard for me, and I rely on my husband a lot for help.
I never thought this would be my way of life at 71.
I can’t even go to the beach, or go in the ocean, and I live in Florida.
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