No wonder there is so little being done about Neuropathy!

Posted by steeldove @steeldove, Nov 7, 2020

When neuropathy isn't even listed as a major neurological disorder:https://jamanetwork.com/journals/jamaneurology/fullarticle/2772579

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

@user_che214927

There are no ifs or buts Neuroplasticity has been accepted world wide. Will power is minimal. Your brain changes, but nothing will change if you do not believe and become excited about Neuroplasticity. If you have read both books studiously, as must be done, you should understand, but maybe discussing with another person may help. If I could speak to you on camera it would help. Currently my PN is affecting my eyes and will be meeting up with a Neuro Ophthalmologist soon. Typing
on my small screen is not helping,, and I need write small messages only. I think I have gone as far as I can wih you via this medium. Good luck to both you and your wife.pictured is a new brain skill I am learning. Eating with chop sticks. When I have mastered this new habit, I will then do the same with my .left hand, thus building and changing parts of my brain. Give it a try!

Jump to this post

@user_che214927
Hi Barry, I see your suggestion to video chat. That is a possibility, but I do think I am starting to understand your point.

To summarize, I'm trying to understand how neuroplasticity can be used to overcome neuropathy, which I think was your initial point a long time ago when you first discussed it. Correct me if I am mistaken. In your recent post you say that "willpower is minimal". OK, then you say it's using chopsticks, or other similar activities. So I am guessing that is the answer, doing things such as using one's non-dominant hand or doing new things like learning a language? And doing these things will cure neuropathy eventually? That is what I am getting out of what you say.

So I will take that as my answer for now. I am almost finished with the first Doidge book. Continuing to try to understand. Will update you as I progress through the 2nd book, which I still need to buy. Thanks much. I appreciate your patience as I slowly try to comprehend.

Best, Hank

REPLY
@jesfactsmon

@user_che214927
Hi Barry, I see your suggestion to video chat. That is a possibility, but I do think I am starting to understand your point.

To summarize, I'm trying to understand how neuroplasticity can be used to overcome neuropathy, which I think was your initial point a long time ago when you first discussed it. Correct me if I am mistaken. In your recent post you say that "willpower is minimal". OK, then you say it's using chopsticks, or other similar activities. So I am guessing that is the answer, doing things such as using one's non-dominant hand or doing new things like learning a language? And doing these things will cure neuropathy eventually? That is what I am getting out of what you say.

So I will take that as my answer for now. I am almost finished with the first Doidge book. Continuing to try to understand. Will update you as I progress through the 2nd book, which I still need to buy. Thanks much. I appreciate your patience as I slowly try to comprehend.

Best, Hank

Jump to this post

Hi Hank @jesfactsmon
I admire your patience and open mindedness in trying to understand the concept of neuroplasticity. I also love your handle.
I have read the first book mentioned. I believe the concept is that the brain can be trained to "change". In brief, that means that one area of the brain, which originally had one function (such as controlling movement of one finger) can be trained through exercises to assume a different function (such as movement in a finger that has been compromised).
Incidentally, I don't think the book claims that the technique causes the brain to grow new neurons. It does claim that the technique causes existing neurons to assume new or different functions, by changing the connections between existing neurons.
While a promising and interesting idea, I do not think it has been "universally accepted" by all experts.
I also don't think it's helpful on a forum such as this to universally deride doctors, nurses, "big Pharma", etc. (the usual suspects) by claiming they are simply greedy, or interested in blocking new treatments to make money. It is particularly appalling to compare them to the tobacco industry.
As you have observed, the medical treatment of PN is currently not particularly efficacious, which understandably leads to sufferers trying to find successful treatments on their own. Unfortunately, this often leads to people trying untested, unproven and sometimes useless or even harmful substances or devices. I'm not necessarily putting neuroplasticity in that category.
"Big Pharma", etc. are certainly not trying to block the development of a successful treatment of PN. If one were to be developed, it would be a blockbuster drug for the pharmaceutical industry, and a relief for the doctors who have to struggle with patients they often cannot help.
Incidentally, PN is not the first cause of death in older people (by falling). Accidental death is about 10th on that list. The main causes are heart disease, cancer, stroke, in that order.
Good luck with your quest. If you find something that works well, please let us know.

REPLY
@jesfactsmon

@user_che214927

Barry, I spoke about hope in my previous post, but I did not mean to ignore ACTION. I did say that until a cure is found it's not bad to try any other thing that works to relieve one's pain. Taking action gives one a sense of purpose in the here and now along any hopes for some future possible cure.

So in your case you have managed very successfully to overcome your torturous back itch using your own will power. That is great and I congratulate you. My wife did the same thing. She has a horrible itching in her feet sometimes and she fights touching it or scratching it and it goes away after a time, occasionally it takes as long as a day or two.

But I am not so sure will power will work as well for everything. I am not sure it's as simple to eradicate the burning 8-9 level of PN pain in one's feet using just will power, is it? For one thing, what would you be willing yourself to do or not do? There is not an action similar to scratching where burning pain is concerned. So this is where the idea of using neuroplasticity to eliminate neuropathy loses me. I'm not particularly bright, but I am open minded and hope to understand this sometime.

Best to you and thank-you Barry, Hank

Jump to this post

@jesfactsmon First, let's clear up one thing, Hank! You are intensely bright. Astute. Aware. Constant learning with you. Anyway, my input, for what it is worth. Sometimes, when my pain is at its very worst, I get really pissed off, and go and vacuum within limits. Before I know it, the pain lowers. Why? I have no idea. But somehow, really focusing on something else, in an intense way, lowers my pain. I have also read a book of Spanish, in Spanish, in the throes of bad pain, and the pain is lowered. Something is going on, for sure. However, the pain always comes back. It never leaves. I have no idea if doing these more intense distractions will eventually reroute my brain. However, they are good pain management. I get utterly exhausted, however, living like this. Nothing is for just for the joy of doing it, anymore. Everything is to manage pain. I think that is why Rachel has left us. She spends her entire day using techniques that she has learned to maintain, improve herself. Utterly exhausting, and I would not wish it on my worst enemy. But there is nothing else to do at this point. So maybe I will excel in Spanish! Yo gusto mucho!!!! Muy bueno! Love, LoriRenee1

REPLY

I run on the beach every day, 4 or 5 miles. It takes me about 1 1/2 hours (I'm not fast). During that time I usually don't think much about the pain. It's such a wonderful, interesting world out there that it distracts me from the pain that, like yours, is always there.
I'm open-minded, willing to try most anything except narcotics.
I have wondered why my nervous system is sending me false pain messages (I feel like I'm standing in a bonfire while wasps are stinging the rest of me - but there is no fire any where, no wasps - just false pain messages). Why doesn't it send me false pleasure messages? Surely that is feasible.
I'm willing to try using my brain to change my nervous system. I will get one of his books and let you know how it goes.
When I was very young I used my brain to lull myself into twilight sleep when we were on trains for days so that I wouldn't get motion sickness.
Years ago, I used behavior modification to change my personality - it was very hard work at first but it paid off - the new responses became good habits.
Maybe 'neuroplasticity' will work too.
Peggy

REPLY
@lorirenee1

@jesfactsmon First, let's clear up one thing, Hank! You are intensely bright. Astute. Aware. Constant learning with you. Anyway, my input, for what it is worth. Sometimes, when my pain is at its very worst, I get really pissed off, and go and vacuum within limits. Before I know it, the pain lowers. Why? I have no idea. But somehow, really focusing on something else, in an intense way, lowers my pain. I have also read a book of Spanish, in Spanish, in the throes of bad pain, and the pain is lowered. Something is going on, for sure. However, the pain always comes back. It never leaves. I have no idea if doing these more intense distractions will eventually reroute my brain. However, they are good pain management. I get utterly exhausted, however, living like this. Nothing is for just for the joy of doing it, anymore. Everything is to manage pain. I think that is why Rachel has left us. She spends her entire day using techniques that she has learned to maintain, improve herself. Utterly exhausting, and I would not wish it on my worst enemy. But there is nothing else to do at this point. So maybe I will excel in Spanish! Yo gusto mucho!!!! Muy bueno! Love, LoriRenee1

Jump to this post

Dios te bendiga la hermana! Sunny

REPLY

Fantastic ,Peggy , you are on th right track. I also ran on the beach at 6am for over 30 years. After a couple of years I decided, in the miiddle of summer, to swim to also swim until the water was too cold.. It never became too cold as sea water temperature is not as cold as the sand or air?. In fact the warmest place on the beach, is in the water. When we go to the beach on an extremely hot day, and somebody spashes water, we nearly die, but once in the water , it is deliciously cooling. Its the initial dive that is hard for many. In winter it is only the initial dive also. Many a time I have run across frost covered sand and dived in to the warmest part ogf the beach. I had created A new fantastic habit, and the rewards were plentiful. I now realise my brain had changed. Benefits are I rarely get a cold or flu.I am wearing lighter clothing. I do not own a singlet, scarf, pullover , gloves or overcoat. My health also improved to srabe that at age 89 I am on nil medication or tablets of any kind. My PN is hereditary. Now practicing Neuroplasticity, am experiencing improvment, small, but definite, BUT happening .Good luck and best wishes. Just GO FOR IT! Anoth habit and brain change is eating with chop sticks.

REPLY

Hi Barry, I hope you will always continue to post, I enjoy reading your positive, uplifting experiences, they continue to motivate me and cheer me up. Keep it up!😁👍 Helen

REPLY
@user_che214927

Fantastic ,Peggy , you are on th right track. I also ran on the beach at 6am for over 30 years. After a couple of years I decided, in the miiddle of summer, to swim to also swim until the water was too cold.. It never became too cold as sea water temperature is not as cold as the sand or air?. In fact the warmest place on the beach, is in the water. When we go to the beach on an extremely hot day, and somebody spashes water, we nearly die, but once in the water , it is deliciously cooling. Its the initial dive that is hard for many. In winter it is only the initial dive also. Many a time I have run across frost covered sand and dived in to the warmest part ogf the beach. I had created A new fantastic habit, and the rewards were plentiful. I now realise my brain had changed. Benefits are I rarely get a cold or flu.I am wearing lighter clothing. I do not own a singlet, scarf, pullover , gloves or overcoat. My health also improved to srabe that at age 89 I am on nil medication or tablets of any kind. My PN is hereditary. Now practicing Neuroplasticity, am experiencing improvment, small, but definite, BUT happening .Good luck and best wishes. Just GO FOR IT! Anoth habit and brain change is eating with chop sticks.

Jump to this post

Barry, your story and picture are GREAT!!! Very uplifting!!! 👍🙏🤗

REPLY
@helennicola

Hi Barry, I hope you will always continue to post, I enjoy reading your positive, uplifting experiences, they continue to motivate me and cheer me up. Keep it up!😁👍 Helen

Jump to this post

Thanks😅Helen. I want to beat this bloody PN, Not just for me but hopefully encourage others have a go at what I am doing, and basically experience a real lifestyle and mental çhange. Best wishes! Attached is a humorous shot of how neuroplasticity is affecting me.

REPLY
@user_che214927

Thanks😅Helen. I want to beat this bloody PN, Not just for me but hopefully encourage others have a go at what I am doing, and basically experience a real lifestyle and mental çhange. Best wishes! Attached is a humorous shot of how neuroplasticity is affecting me.

Jump to this post

Barry, ha ha, a sense of humor is always appreciated. You are beating your PN, one new neuron path at a time. Helen

REPLY
Please sign in or register to post a reply.