My Neurologist in Australia, an highly ranked specialist, ranks Peripheral Neuropathy as the number killer of old aged people in world, mainly because of falls. He supports my decision to practice NeuroPlasticity to repair my PN.

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Hi Barry,

There has been a recent development: a neuropathy biomarker called sarm1 has been identified by a start-Up company called Disarm. Disarm was recently acquired by Lilly. Sarm1 is a naturally occurring protein that is activated when a nerve is damaged. Sarm1 induces inflammation which further damages the nerve and surrounding tissue. Lilly is developing inhibitors of sarm1 which could act to stop the inflammatory reaction and stop further damage to the nerve. I don't know if inhibitors have been identified yet. However, I think we are looking at 5-10 years before such inhibitor could make it to market.

One big selling point for this line of research is that such inhibitors could be useful in the treatment of other neurodegenerative disorders like Parkinson's. In short, there could be a big market for such inhibitors which obviously is a big motivating factor for pharmaceutical companies.

Margaret

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Please see the Foundation for Peripheral Neuropathy newsletter for information on Congressional action to fund research::
https://www.foundationforpn.org/2020/11/06/advocating-for-peripheral-neuropathy-research-funding/?blm_aid=1754340353
Update on the 2021 Appropriations Bill

On November 10, 2020, the Senate Committee on Appropriations released their version of the fiscal year 2021 Defense Appropriations Act. We are excited to report that this legislation includes “peripheral neuropathy” among the conditions eligible for research under the Peer-Reviewed Medical Research Program (PRMRP).

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@margaret10

Hi Barry,

There has been a recent development: a neuropathy biomarker called sarm1 has been identified by a start-Up company called Disarm. Disarm was recently acquired by Lilly. Sarm1 is a naturally occurring protein that is activated when a nerve is damaged. Sarm1 induces inflammation which further damages the nerve and surrounding tissue. Lilly is developing inhibitors of sarm1 which could act to stop the inflammatory reaction and stop further damage to the nerve. I don't know if inhibitors have been identified yet. However, I think we are looking at 5-10 years before such inhibitor could make it to market.

One big selling point for this line of research is that such inhibitors could be useful in the treatment of other neurodegenerative disorders like Parkinson's. In short, there could be a big market for such inhibitors which obviously is a big motivating factor for pharmaceutical companies.

Margaret

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I do not agree with your thinking.who are Disarm and Lilly and what are their qualifications? I can see why the big pharmaceutical companies are salivating over the thought of such an unbelievable thought of such à cash cow coming their way. I will stick with my Neuroplasticity. It cost nothing, been researched by the best universities, and neurologists in the world and approved unamously by all that the brain is plastic.

2020-02-02 16

Liked by Ellen

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@catharbert

Please see the Foundation for Peripheral Neuropathy newsletter for information on Congressional action to fund research::
https://www.foundationforpn.org/2020/11/06/advocating-for-peripheral-neuropathy-research-funding/?blm_aid=1754340353
Update on the 2021 Appropriations Bill

On November 10, 2020, the Senate Committee on Appropriations released their version of the fiscal year 2021 Defense Appropriations Act. We are excited to report that this legislation includes “peripheral neuropathy” among the conditions eligible for research under the Peer-Reviewed Medical Research Program (PRMRP).

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Just how much research does the Foundation need? The world wide research has certainly proved that the brain is plastic, and and that the practice of Neuroplasticity can provide relief in many areas including a cure. I have , after 3 months, experienced great progress, as have many world wide.I looked at the Foundation's Website and was amazed that there was not even a mention of neuroplasticity. I even sent a message to the foundation protesting thier6 lack of leadership or encouragement to PN sufferers. I feel there are two reasons for this lack of interest and leadership. One is that the the Foundation is choked by beautocracy, right from the top, or pressure from other financial interests.

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@user_che214927

Just how much research does the Foundation need? The world wide research has certainly proved that the brain is plastic, and and that the practice of Neuroplasticity can provide relief in many areas including a cure. I have , after 3 months, experienced great progress, as have many world wide.I looked at the Foundation's Website and was amazed that there was not even a mention of neuroplasticity. I even sent a message to the foundation protesting thier6 lack of leadership or encouragement to PN sufferers. I feel there are two reasons for this lack of interest and leadership. One is that the the Foundation is choked by beautocracy, right from the top, or pressure from other financial interests.

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@user_che214927
Hi Barry, it sounds a bit like you are scolding others for being interested in research into neuropathy that is something other than neuroplasticity.

I give you lots of credit for firmly believing in neuroplasticity for YOU. But saying the word "neuroplasticity" a hundred times or more over many different posts does not actually describe what exactly it is you are DOING. Reading your posts made me interested in reading more about it, and so far I still do not know what to actually DO. What are the specific exercises? How does a person go from drinking in all of your personal enthusiasm about neuroplasticity to making it into something that can help them? All I have garnered from what you have said on the subject so far is that neuroplasticity must be another word for "will power". If I am dead wrong about that then please explain how I am wrong.

For some (many? most?) of us I think having hope for a breakthrough to occur in medical research of neuropathy is not a bad thing. Even while trying to do other things, like you for example, as you use neuroplasticity in some mystical way that you seem to understand.

Best, Hank

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@jesfactsmon Hank. You took the words out of my mouth

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@jesfactsmon

@user_che214927
Hi Barry, it sounds a bit like you are scolding others for being interested in research into neuropathy that is something other than neuroplasticity.

I give you lots of credit for firmly believing in neuroplasticity for YOU. But saying the word "neuroplasticity" a hundred times or more over many different posts does not actually describe what exactly it is you are DOING. Reading your posts made me interested in reading more about it, and so far I still do not know what to actually DO. What are the specific exercises? How does a person go from drinking in all of your personal enthusiasm about neuroplasticity to making it into something that can help them? All I have garnered from what you have said on the subject so far is that neuroplasticity must be another word for "will power". If I am dead wrong about that then please explain how I am wrong.

For some (many? most?) of us I think having hope for a breakthrough to occur in medical research of neuropathy is not a bad thing. Even while trying to do other things, like you for example, as you use neuroplasticity in some mystical way that you seem to understand.

Best, Hank

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Barry, Hank, I think the science of neuroplasticity, although not new, will not be in the forefront of pain elimination treatments for the foreseeable future. Many people today still do not realize the important role diet, exercise and positive mental attitudes have on their health. Many people I know personally (including family) prefer an easy answer such as taking a pill. We are an entitled society that wants easy answers and fast results which is understandable . The science of neuroplasticity is very difficult to grasp and utilize (I am assuming) plus I would guess that the medical world at large has also concluded that and see no risk/reward/financial gains to be had.

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We're like the red ants fighting the black ants while there is an anteater standing over us. Let's pull ourselves back together. Research is good; new techniques are good, different treatments are good for different people. We need to write/call/email our elected representatives, pharma companies, the medical community, and potential investors/donors and get them excited about research and medicines for people who suffer from neuropathy. It looks like the ball has started rolling already … What do you think? Peggy

Liked by steeldove, Hank

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@pfbacon

We're like the red ants fighting the black ants while there is an anteater standing over us. Let's pull ourselves back together. Research is good; new techniques are good, different treatments are good for different people. We need to write/call/email our elected representatives, pharma companies, the medical community, and potential investors/donors and get them excited about research and medicines for people who suffer from neuropathy. It looks like the ball has started rolling already … What do you think? Peggy

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You are right Peggy, as with many people who have PN is that people want the quick fix: a tab.et , a cream etc, and that is what the big pharmaceutical companies want. They pump out possible solutions,and then educate the medical fraternity, doctors nurses etc. They are much like the cigarette industry denying the fact cigarettes maimed and killed . Like almost every level of the medical practitioners have one big thing in common. To earn big profits and net profit.servicing a population that want a quick fix.The last thing they want is a quick fix for PN. . A solution other than their products and loss of service is the nightmare of all nightmares for them, and that is why Neuroplasticity is practically never mentioned . The Pharmaceutical provide gifts , trips, also provide finance for new buildings and equipment etc. etc. Just remember, it not that long ago that the the tobacco industry advised and advertised, that smoking was soothing for pregnant women , and in fact healthy Best wishes from Australia

FB_IMG_1550016875065

Liked by Hank, stefspad

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What we have now for PN from the medical industry and the "alternative" medical industry are pain aids. We all know them. The main ones are gabapentin, Lyrica, duloxetine, followed by opioids, and then of course the cannabinoids, kratom, ketamine, etc. etc. and on and on. Most of these are little more than band-aids at best for most PN sufferers.

What we do not have is a cure. But there is some research ongoing toward one. Of the ones I have heard about, there is Winsantor with their pirenzepine based WST-057, and several companies (WEXpharma, Chromocell, several others) investigating voltage-gated sodium channel blockers. My hope is that one day something will click. That one of these lines of research will result in producing an effective aid in helping to remove the source of the pain itself.

Having hope is not a bad thing. I think life is worse off without hope than with it. So I think it's good to maintain hope for a breakthrough. That does not mean we should not try other things in the meantime. Perhaps neuroplasticity, myofascial release, or some other pursuit will give relief to some people. Great. But while I keep open to all possible short term fixes, I for one am going to maintain my hope for a more significant breakthrough to occur someday, regardless of whether or not it happens in time to help my wife's situation.

Best, Hank

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@jesfactsmon

What we have now for PN from the medical industry and the "alternative" medical industry are pain aids. We all know them. The main ones are gabapentin, Lyrica, duloxetine, followed by opioids, and then of course the cannabinoids, kratom, ketamine, etc. etc. and on and on. Most of these are little more than band-aids at best for most PN sufferers.

What we do not have is a cure. But there is some research ongoing toward one. Of the ones I have heard about, there is Winsantor with their pirenzepine based WST-057, and several companies (WEXpharma, Chromocell, several others) investigating voltage-gated sodium channel blockers. My hope is that one day something will click. That one of these lines of research will result in producing an effective aid in helping to remove the source of the pain itself.

Having hope is not a bad thing. I think life is worse off without hope than with it. So I think it's good to maintain hope for a breakthrough. That does not mean we should not try other things in the meantime. Perhaps neuroplasticity, myofascial release, or some other pursuit will give relief to some people. Great. But while I keep open to all possible short term fixes, I for one am going to maintain my hope for a more significant breakthrough to occur someday, regardless of whether or not it happens in time to help my wife's situation.

Best, Hank

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Good luck Hank on your decision, every major research entity including the worlds presigous universities have agreed that the brain is plastic and by practising Neuroplasticity, new neurons can be created, allowing the brain to repair itself. That the brain is plastic is the biggest revelation in over 200 years. I have spent probably 30 or 40 houra a week for many month researching medical research organisations and universities etc.to convince myself that neuroplasticity does work, BUT, if you dont believe that, with all your heart, it won't work. It is working for me , but I reckon it may take 2 years for me to get back to normal. I had an extremely itchy back problem. I visited my doctor who precribed ointment, and without give me relief , he referred me to a specialist, who prescribed a much stronger ointment, that had be applide every day for 2 weeks. As I could not apply myself, I had to pay for a nurse to come every day to do it, but it did not get rid of my angry itch. A couple of weeks on a hot sweaty night, it was driving mad atabout 2.30 am. I decided to use the method , outlined chapter 7, first Book. It meant ignoring the itch, and most definitely not scratching it. Of I never slept a wink, for the rest of the night. The next night itch continued but not as bad. The following night, the itch was there, but very minor. NOW LISTEN TO THIS: NThe next day my itch has totally has vanished. I get the occasinal urgre to scratch occasionally, but simply ignore it. It does take a bit of will power, but when you are getting results, even small improvements, the challenge is worth the effort and motivating as a result. My best wishes to you and your journey. The decision is yours Hank, as it is with me..

Liked by helennicola, Hank

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@user_che214927

You are right Peggy, as with many people who have PN is that people want the quick fix: a tab.et , a cream etc, and that is what the big pharmaceutical companies want. They pump out possible solutions,and then educate the medical fraternity, doctors nurses etc. They are much like the cigarette industry denying the fact cigarettes maimed and killed . Like almost every level of the medical practitioners have one big thing in common. To earn big profits and net profit.servicing a population that want a quick fix.The last thing they want is a quick fix for PN. . A solution other than their products and loss of service is the nightmare of all nightmares for them, and that is why Neuroplasticity is practically never mentioned . The Pharmaceutical provide gifts , trips, also provide finance for new buildings and equipment etc. etc. Just remember, it not that long ago that the the tobacco industry advised and advertised, that smoking was soothing for pregnant women , and in fact healthy Best wishes from Australia

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What reading/book have you found helpful on neuroplasticity? Thanks

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@user_che214927

Good luck Hank on your decision, every major research entity including the worlds presigous universities have agreed that the brain is plastic and by practising Neuroplasticity, new neurons can be created, allowing the brain to repair itself. That the brain is plastic is the biggest revelation in over 200 years. I have spent probably 30 or 40 houra a week for many month researching medical research organisations and universities etc.to convince myself that neuroplasticity does work, BUT, if you dont believe that, with all your heart, it won't work. It is working for me , but I reckon it may take 2 years for me to get back to normal. I had an extremely itchy back problem. I visited my doctor who precribed ointment, and without give me relief , he referred me to a specialist, who prescribed a much stronger ointment, that had be applide every day for 2 weeks. As I could not apply myself, I had to pay for a nurse to come every day to do it, but it did not get rid of my angry itch. A couple of weeks on a hot sweaty night, it was driving mad atabout 2.30 am. I decided to use the method , outlined chapter 7, first Book. It meant ignoring the itch, and most definitely not scratching it. Of I never slept a wink, for the rest of the night. The next night itch continued but not as bad. The following night, the itch was there, but very minor. NOW LISTEN TO THIS: NThe next day my itch has totally has vanished. I get the occasinal urgre to scratch occasionally, but simply ignore it. It does take a bit of will power, but when you are getting results, even small improvements, the challenge is worth the effort and motivating as a result. My best wishes to you and your journey. The decision is yours Hank, as it is with me..

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@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

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@dpowell

What reading/book have you found helpful on neuroplasticity? Thanks

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Hello @dpowell, Welcome to Mayo Clinic Connect. I believe both of the books that have been discussed here are by Norman Doidge, M.D. – The Brain's Way of Healing and The Brain that Changes Itself. Information for both books are on his website – https://www.normandoidge.com/. Here's some more information on the topic…

– What is Neuroplasticity? A Psychologist Explains [+14 Exercises]: https://positivepsychology.com/neuroplasticity/
– TED Talks and YouTube Videos on Neuroplasticity: https://positivepsychology.com/neuroplasticity/#ted-neuroplasticit

Have you been diagnosed with neuropathy and looking for alternative treatments/therapy?

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