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Guardian article

Nige

The other item she mentioned, pain will always win. You can push against it for a period but the defence mechanism will prevent you in the end. Its important if you can to bail out from the activity before you reach this stage and find something to counter it.

Pando

Nige Hello Nigel,

Rough times indeed. For both of us, and many more in similar circumstances. I’m sure you’ve tried this ?…rubbing a painful area to reduce pain through gate control theory, where non-painful input (e.g., touch) inhibits the transmission of pain signals in the spinal cord? I will refer to Moskowitz who conquered his chronic pain in next paragraph. What do you think about the transmission of pain? Say I hurt my finger, the nociceptors fire, the A-delta, myelinated fibers and/or non-myelinated C fibers fire. They travel to your spine, along our normal nerve pathways. Nerves are bundles of axons (including Aδ fibers, C fibers, and others) enclosed in connective tissue that serve as highways for transmitting sensory, motor, or autonomic signals. Let’s take this further? What is travelling? Electrical signals through our nerves. Mechanoreceptors and nociceptors send electrical signals down the same highway (perhaps using the fast lane?). We are 1) electrical beings 2) chemical , mechanical etc. That is why I explore my vagus nerves through Qigong ; Western medicine does not take me there. Our thoughts are electrical energy, and therein lies the answer. That’s also how I embraced electrical grounding. But let me slow down a bit.

What do you think of Michael Moskowitz (in Doidge’s book on chronic pain) ? Since our pain mapping cells have been damaged by stroke, pain runs amok, as in phantom limb pain (which I have suffered from… a whole missing arm replaced by my re-mapped arm). Since neurons that “fire together wire together” we are able to wire two things of our choice together. By using our visual processing (which occupies a large part of our brain …cf. sort of what is happening to your brain.. a large part of it is being converted into pain maps) we can counter stimulate the pain. Continually and relentlessly training your brain to respond to visual stimuli vs pain stimuli the balance slowly, but surely changes, and 6 weeks later pain vanishes… I have tried this technique myself and it worked for me. Forgive me if I explain it in the rough. The challenge is extreme because your sns is firing all the time, and you face a downward spiral. Again, my only salvation is meditation and mind control, Qigong etc.

I embrace a healthy amount of therapies, through necessity, and because I have seen I can make a difference, I dedicate my life toward my recovery. I study solutions, day in day out. If I had 1 recommendation it would be NIR, PBM specifically 850nm light (I say light, but we cannot see 850). This modulates the pain in my foot, and through grounding and the above mentioned desensitizing technique I can now walk on hallux days (my medial dorsal cutaneous nerve hurts to kingdom come every 3 days). I am work in progress !! Hopefully you will find your answers ; whether my post helps or not , I don’t know. Sometimes I think the best we can do is keep busy and thus buy time and wait for better days. Meantime have a great new year and remaining xmas celebrations. Ciao, Roland

Pando

Nige Phil’s post on turning up the volume to search for the signals it needs.

…and consider, in my case, the many nerves and muscles that have no volume to turn up !! For those nerves and muscles that do come faintly online I have plenty of conditioning and integrating to do. You could say I’m experienced already, but the task ahead is daunting. Luckily, I’m passionate about work (I was a violinist after all) !!

Nige

Yeh it’s interesting the touch element. It as though it overlays a new sensation on top which the brain responds to immediately but after stopping rubbing, within a second or two it reverts to the former nerve pain. Maybe warmth does the same but unlike touch, it’s more prolonged in nature and so provides a benefit for much longer ?

Every stroke is different. My numbness tends to be temporary. I can see a much more prolonged loss to be so frustrating. You can see it, touch it but it doesn’t respond ?
Touch for me can generate pain, a bit like yourself when you walk into the piano.

If you were to place an ice cube/bag of frozen peas on a numb area, would your body recognise that as danger and fire off a signal ?
The piano touch suggests light touch is a problem to recognise but deeper muscle/bone might be active still ?

Pando

Nige Glad gate control “works” and what about Moskowitz ? (every time you experience pain, you visually process a “scene of joy” to bind to that pain, thus over time you reprogram your pain - I don’t think I explained it clearly)
I use this technique all the time, since I have medium - high levels of pain 2,3 or 4 out of 6 days
ps. I don’t feel anything when I walk into the piano

Ingo66

Interesting discussion. I’m in the Pando camp, as in I don’t have chronic pain but like to feel anything (including pain) on my stroke side

Simon

This thread is covering some territory. It qualifies as all of deep, desperate and esoteric - a heady (excuse the pun) mix

In the new year let’s try to engage the pain clinics?
Also fyi @Ruthy @Phil

Nige

I have been accepted on the pain management course (via the pain clinic) which starts in Jan. I will give updates as it progresses. I would suggest if you can, get a referral to the pain clinic and then in time, you should get this option. @Pando @Andrew just for info, the local courses are run from Cossham hospital, I would guess that there are 3 a year. It definitely seemed to help me get up the priority list by buying into the psychology element. May be not everyone sees the benefit.

Andrew

Thank you Nige for the heads-up re the course at Cossham. As you know, it is about two miles from where I live. Given how you and many others have suffered with post-stroke pain I am loathe to say (but glad to report) that pain hasn’t been one of my problems in the last year since the stroke. In fact it only came fully onto my radar when I joined this group, the other group that I belong to, local and good though it is, hasn’t really mentioned this aspect. Rather my main issue has been the onset of right hand tremors. Not painful but a blasted ever-present nuisance, this messes up quite a few things - writing, violin playing, the cutting of food, eating in general, the filling and emptying of the dishwasher, shaving etc..

Nige

Andrew Hi Andrew. I have posted a link on deep brain stimulation on this section which is commonly used for movement disorders such as tremors. Not the same but it does seem to have a very good success rate. Not sure if that would be of interest to you to investigate? Cheers nige

Andrew

A research paper. Perhaps this is old hat for many but I shall still offer it. It is

“Principles of Experience-Dependent Neural Plasticity: Implications for Rehabilitation After Brain Damage” by Jeffery A Kleim and Theresa A Jones. Journal of Speech Language and Hearing Research, 51, S221-S225.

Also downloadable from ResearchGate: https://www.researchgate.net/publication/5620837_Principles_of_Experience-Dependent_Neural_Plasticity_Implications_for_Rehabilitation_After_Brain_Damage where it has been cited over 2000 times.

It takes a bit of wading though, but the following youtube video is much clearer:

 https://www.youtube.com/watch?v=Jj51JtXFnao

Andrew

Andrew Hmmff…. both the links work, but they are a bit of a mess!

Pando

Andrew Thx I downloaded it

Simon

Andrew
They are a mess because we’ve got link preview loaded and it’s not very sophisticated.
It may be possible to find another link previewer or get the developer to amend it. We could unload it - But that introduces its own limitations but it isn’t so messy.

I too download the paper. Research gate suggested a lot of other interesting papers.

I also extracted the principles
(Not that there is anything particularly surprising in them to anybody who’s read much but it’s a very very good summary for those who are earlier in their journey 🙂 Thanks for sharing )

Use It or Lose It - Failure to drive specific brain functions can lead to functional degradation.
Use It and Improve It - Training that drives a specific brain function can lead to an enhancement of that function.
Specificity - The nature of the training experience dictates the nature of the plasticity.
Repetition Matters - Induction of plasticity requires sufficient repetition.
Intensity Matters - Induction of plasticity requires sufficient training intensity.
Time Matters - Different forms of plasticity occur at different times during training.
Salience Matters - The training experience must be sufficiently salient to induce plasticity.
Age Matters -Training-induced plasticity occurs more readily in younger brains.
Transference -Plasticity in response to one training experience can enhance the acquisition of similar behaviors
Interference Description - Plasticity in response to one experience can interfere with the acquisition of other behaviors.

Andrew

Hi Nige! Thanks for the suggestion. I have already been looking at this as a possibility, as you might expect. My problem though is that I often look normal, and the tremors show the most when trying to play the violin, which is outside the remit of therapists. Indeed none at Sirona can help with this as no-one is trained in such a microscopic way. I can do various things despite the wobbling, but I don’t think that I am anywhere near bad enough to warrant a medical intervention, or even to have it recommended. The trouble is that I very often feel the wobbles even when many others don’t see them or regard them as important. So it’s quite a bind to be in. In the meantime the orchestras play on without me.

So this is why I chase the neuroplasticity thing. It must be equivalent to learning new tricks for scratch, and although I am now 65, I have been doing this sort of thing all my life. As an academic, part of my interest lies in teaching new dogs old tricks, but in return I am only respected if this old dog also learns new tricks and this is seen. My wife’s godfather, a physics teacher, was always, “Ah Andrew, what do you think about this…..”, a real role model to me. I wish to continue in the same way with a highly active brain, learning new things.

Pando

Andrew highly active brain, learning new things

That will be the driving force behind your recovery. That and mental stability. Have a great 2025

Nige

Andrew it’s not going to be quite the same thing but I have had two periods of wobbling in my weak left biceps. Only it wasn’t wobbling as such. It was a very clear sensation of it but if I or anyone else put a hand on the area, it couldn’t be felt. It reached a point where it seemed severe and I had a neurology appointment. They tested me for Parkinson’s. All clear. Just one of those very many odd post stroke things.
It has disappeared now for the second time …..but then, it seems, it was never in my arm in the first place

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