1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

fiesty76 | @fiesty76 | Mar 3, 2021
In reply to @jakedduck1 "@artist01 “Stoic?” not hardly. Although I did have problems excepting my diagnosis in the beginning, I..." + (show)
@jakedduck1

@artist01
“Stoic?” not hardly.
Although I did have problems excepting my diagnosis in the beginning, I came to the conclusion that “it is what it is.” I needed to move past the seizures and the stigma which was so bad in the ’60s. I think coping with life is much easier than ignoring your fate. I only have one hang up. I suppose I could see a psychologist and try to figure it out. A dear friend of mine was a psychologist and I never thought to ask him. He died in 2009 on his driveway from Convulsive Status Epilepticus. I had a great family and terrific friends who didn't care if I had Epilepsy.
I don't mind the loss of memory or Neuropathy but to this day losing the ability to play the piano like I once did is something I still have problems coping with though I haven't any memory of ever playing it. I went to a parochial school and although I don’t remember I was told according to my family I could play the piano in my junior year in chapel every morning which I was looking forward to but was kicked out of school when I was a sophomore. Couldn't blame them. Hard to learn during seizures and sleeping for hours or days at a time after one. So “it is what it is.” I just wish I could deal with this one issue better. I suppose I really should get rid of the piano.
Take care up in the Artic where you must live,
Jake

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Hokay, @jakedduck1, while I always enjoy your posts, I do think that along with "upbeat", funny, pied piper of all things sweet and chocolate, stoic is a fit for you as well...just sayin', Smiles

As for as the piano issue, I received a partial music scholarship "in another life". Piano playing was my nirvana growing up and for many years into adulthood. However, my daughter showed no interest in learning to play and as years passed, I spent less and less time playing.

When I renovated my home several years ago, I donated my grand upright piano to a local univ.'s music dept. There are occasional moments when I miss the piano but I've forgotten so much that it would probably be like completely starting over.

As a former educator, I am so saddened that you were kicked out of school due to your seizures and after effects. More than one of my students over the years suffered seizures in class and while frightening, none were ever asked to leave the school. Regardless of how far we've come in better understanding and learning how to help students with chronic health issues, we still have far to go in creating inclusive environments for them.

As for your wish to deal better with this one piano issue, I'll just say that with my flaky mind and short term memory issues that for me, "out of sight" means "out of mind" ...regardless of the issue! LOL

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fiesty76 | @fiesty76 | Mar 3, 2021
In reply to @lacy2 "@Leonard and hi everyone. I get emails on posts of subjects interested in and although not..." + (show)
@lacy2

@leonard and hi everyone. I get emails on posts of subjects interested in and although not part of your conversation I hope you don't mind my comment.
Tears came to my eyes reading about your piano playing and the emotional loss really touched me. Also losing such a dear friend suddenly. I also weight the pros and cons of my ups and downs but I would give all I have, for instance, to spend a day with my family no longer on earth: it's a good thing we do not know what is in the hereafter because if I thought they were waiting fo me to show up I would. I don't know you but IF you ever do find a new home for your piano, perhaps have someone take a photo of you sitting at it, if it's not too upsetting. I love my old photos... I got rid of a lot of odds and ends over the years and sometimes wish I had just taken a picture first, sounds silly, but we are all different in that regard. Am glad you had a great family and terrific friends.... and sorry for your current health issues. J.

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@lacy2 and @jakedduck1, Lacy you so well expressed my sentiments about Leonard's moving post. Thanks for better verbalizing what I felt as well.

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fiesty76 | @fiesty76 | Mar 3, 2021
In reply to @avmcbellar "Hi @jakedduck1 I am not an expert as a neurologist would be on the subject but..." + (show)
@avmcbellar

Hi @jakedduck1 I am not an expert as a neurologist would be on the subject but I believe there are stages of neuropathy. Our nerves are our sensors for pain so if our nerves don’t work properly, we would experience numbness and not feel pain. My belief is the neuropathy has progressed to a worse stage. Regardless of the stage of neuropathy, exercise can help to keep it from progressing by encouraging neurogenesis Seems like exercise helps with our health in so many ways. Can’t get away from it. A healthy diet included would give our body the proper fuel and nutrition it needs to combat whatever ailment. Kind of giving our body a push start. Sorry, take caution with your five food groups. Nothing wrong with having a treat now and then. No big portions though. Indulging in small amounts is perfectly fine for me. Toni

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@avmcbellar and @jakedduck1, I'm a Huge believer in rewards and use them to push me to do those dratted tasks I most dread as well as motivators for all sorts of things.

Yesterday, receiving a great kidney report at my first visit with the new nephrologist, I promptly did what any self-respecting mortal would do and made a beeline to favorite "curb-side" restaurant for a delish mushroom burger and most favorite-in-the-universe generous slice of choc. rum cake with whip cream, ice cream and hot fudge sauce! Totally justified imo, vbg, Because the doc said my lab reports showed improvements Due to the strict ckd diet and exercise I'd been following.....what's not to celebrate???? lol

Yes, yes, I know "everything in moderation" but I did refrain from buying the whole cake, right???? Smiles to all.

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fiesty76 | @fiesty76 | Mar 3, 2021
In reply to @jakedduck1 "@avmcbellar Thank you, I just read more about the various stages of neuropathy here they are...." + (show)
@jakedduck1

@avmcbellar
Thank you,
I just read more about the various stages of neuropathy here they are.

Stage One: Numbness and Pain
Stage Two: More Regular Symptoms.
Stage Three: The Pain Reaches Its High Point.
Stage Four: Constant Numbness.
Stage Five: Total Loss of Feeling
No longer any nerves capable of
sending signals to your brain.
Thanks again,
Jake

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@jakedduck1, Always interested in the "stages" of whatever chronic health problem I have, I read your 4 stages of neuropathy with interest. I know we are all different but since my diagnosis 2+ yrs ago I've only experienced the always cold feet and numbness, no pain.

My neurologist did tell me the p.n. progression would be slow so I can only be grateful that while it is creeping up the legs and now hands, there is no pain. Best to all who proactively seek the best treatments and pain reducers for their chronic conditions!

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fiesty76 | @fiesty76 | Mar 3, 2021
In reply to @artist01 "@lacy2 . Thankyou, Lacy, for your lovely post. It feels good to receive your kind of..." + (show)
@artist01

@lacy2 . Thankyou, Lacy, for your lovely post. It feels good to receive your kind of understanding. I'm not that good at singing, though.
When I lived in Winnipeg, Canada, my Grade Six music teacher bent her ear to each of us to listen to whether we could sing on key or not. Winnipeg had a huge annual music festival for school children and I REALLY wanted to participate with all my singer friends. The decision was, through my tears, that I could ATTEND the festival, but I was only allowed to move my lips, and not spoil the chance of our class to win in the choir competition.
WELL, I fooled them. I burst into song with the rest of 'em!! And we WON!
HA!!! lol
Warmest regards.
Laurie

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@artist01, Loved your post and spunk! And of Course your group won because of your voice! Way to Go!!! lol

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1 reply
fiesty76 | @fiesty76 | Mar 3, 2021
In reply to @artist01 "@jakedduck1 . Please don't get rid of your beloved piano. It's a proud symbol to gently..." + (show)
@artist01

@jakedduck1 . Please don't get rid of your beloved piano. It's a proud symbol to gently remind you of something very special and important that you were skilled at doing. I haven't gotten rid of all my artist paraphernalia. It's an integral part of who I am. True, it's hidden away in a closet for now because it's a bit painful to look at. I've got three huge paintings of mine hanging in my apartment though, and it makes me feel kinda' good to know that once upon a time....
Maybe if you'll tinkle a few keys and I put some paint on a brush, something magical might happen. Maybe at our joint birthday party, when you're 108 years old and I'm 145 . 🙂
Warm and fuzzy thoughts coming your way. Laurie

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@artist01, Like you with your paintings that remind us of those yesteryears, I've kept several of the hardest sheet music piano pieces I once played as a reminder of those lovely years. I'm all in favor of anyone striving to recapture some magical moments!

Shoot, after 25+ yrs of not knitting, I'm relearning to knit and once again enjoying the pleasure it brings. No intention of trying more complex patterns but the satisfaction of completing some hot pads to keep and share is tempting me toward trying some slipper socks.
Numb, cold hands from P.N. and arthritis in hands had made me skeptical but if I knit for short periods and keep the patterns simple, it is doable!

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Moderator
Amanda Roe | @amandajro | Mar 3, 2021

Hello everyone! I see some great discussion from @jakedduck1 @sunnyflower and @fiesty76 around the arts and wanted to share this conversation where you can continue sharing more if you'd like in the Just Want to Talk Group.

-Art for Healing:
https://connect.mayoclinic.org/discussion/art-for-healing/

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artist01 | @artist01 | Mar 3, 2021
In reply to @fiesty76 "@artist01, Like you with your paintings that remind us of those yesteryears, I've kept several of..." + (show)
@fiesty76

@artist01, Like you with your paintings that remind us of those yesteryears, I've kept several of the hardest sheet music piano pieces I once played as a reminder of those lovely years. I'm all in favor of anyone striving to recapture some magical moments!

Shoot, after 25+ yrs of not knitting, I'm relearning to knit and once again enjoying the pleasure it brings. No intention of trying more complex patterns but the satisfaction of completing some hot pads to keep and share is tempting me toward trying some slipper socks.
Numb, cold hands from P.N. and arthritis in hands had made me skeptical but if I knit for short periods and keep the patterns simple, it is doable!

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@fiesty76 Good for you, taking up knitting again after all those years. Wow! The only thing I can knit is my brows! I tried it many years ago, starting with a simple scarf, but the scarf got more and more narrow as I lost my stitches.

I'm so impressed with your saying you used to play very complex piano pieces. That's a wonderful accomplishment and you must be very proud of it. Are you able to remember now, or like our Jake, it's gone from your memory? It's nice that you still have some of your sheet music to remind you of that wonderful, skillful time in your life.
Warmest wishes,
Laurie

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artist01 | @artist01 | Mar 3, 2021
In reply to @fiesty76 "@artist01, Loved your post and spunk! And of Course your group won because of your voice!..." + (show)
@fiesty76

@artist01, Loved your post and spunk! And of Course your group won because of your voice! Way to Go!!! lol

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@fiesty76 No, Fiesty, I'm pretty sure my monotone was drowned out by all the beautiful sopranos. I still remember the two songs we sung though. Beautiful Dreamer, and Santa Lucia. X0

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straightway22 | @straightway22 | Mar 5, 2021
In reply to @johnbishop "Hi Kevin, I wasn't exactly sure what the diagnosis was not able to find much specific..." + (show)
@johnbishop

Hi Kevin, I wasn't exactly sure what the diagnosis was not able to find much specific information on the Mayo Clinic website. I did a search using Google Scholar (https://scholar.google.com) with your specific diagnosis and it came up with a lot of information. Not sure if it's helpful but you may want to look through the links and see if any of the titles jump out at you:

https://scholar.google.com/scholar?hl=en&q=+idiopathic+sensorimotor+axonal+polyneuropathy+treatment&btnG=&as_sdt=1%2C24&as_sdtp=

Hope this helps...

John

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Can you tell me if Maximum strength Neuropathy support formula w/alpha Lipoic Acid helps. What does it help?

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