A Conversation with My Nervous System

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A Conversation with My Nervous System

I have been exploring a different approach to chronic leg stiffness—not drugs, not Botox, not passive stretching. Just working with my nervous system’s own reflexes, specifically the balance between muscle spindles and Golgi tendon organs.

I use a simple isometric press (pressing the ball of my foot against a solid surface) to load the tendon and give my GTO a chance to fire. It has helped me feel the floor push back, release my glute, and quiet the spasticity that has been locked in for years. I also use pandiculation (a slow, deliberate, thinking person’s stretch) to wake up sensory feedback and increase brain real estate over the muscle.

Out of over a million stroke survivors in the UK, I suspect fewer than a few hundred are exploring this kind of self-directed neurological work. Not because the medical approach is wrong, but because the system does not have the time or framework to go deeper.

This work is not about replacing physiotherapy. It is about opening a doorway. A doorway into understanding your own body, into learning how to help yourself, no matter how small the step. Many stroke survivors are left on their own after the first few months. They cannot always afford private care. But they can still learn and can still explore. They can still find progress and hope.

There is a deep satisfaction in understanding your own body. That knowledge is not a luxury. It is part of recovery. I believe most people think there is a barrier—that they will never learn how to help themselves. But that is not true. The knowledge is available. It takes curiosity, patience, and practice. I am not dismissing conventional medicine. But I believe there is also something healing in reconnecting with the natural intelligence of the body.

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I think you are being generous or conservative (not sure which is correct) but I would suggest fewer than 10 or count them on the fingers of one hand. I’d love to be wrong of course :slight_smile:

I would so love for this to be true, but somehow and unless I am mis-reading this and going by the posts by members of this forum, this (what you do i.e. learn and explore in the way you do it) is easier said than done. I hope I am not insulting anyone by saying what might come across as an outrageous thing to say, but I do feel that being a stroke survivor is like nothing else I have ever come across.

I can totally agree with this and I would love to see more people getting this deep satisfaction from understanding their body.

I think you could be right about the belief and I agree it so totally is not true. We can indeed learn to help ourselves and if I may say so, reading posts like this may help or encourage some to try this.

As it says on the tin as the phrase goes :slight_smile:

Absolutely - conventional and complimentary medicines/therapies can co-exist :slight_smile:

You’re not wrong there Roland and I think Ronald would also agree :slight_smile:

:pray:

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Aye, That is the long and the short of it !

They can still find progress and hope.
NB. I did not say it does happen. I said it can. That is all. Just that it is possible
What I am describing takes time, patience, and a lot of trial and error!

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Out of the 1.3 million stroke survivors in the UK, around 40% live with some form of leg spasticity or rigidity, over 400,000 people. And yet, only a handful, perhaps a few dozen, maybe fewer, are actively exploring this kind of self-directed, hybrid approach that blends biomechanics, physiotherapy, and neurology. This particular doorway is still largely unseen.

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Why do you suppose this might be Roland and what if anything might we be able to do?

It has been said more than once that this forum is a wonderful place to be, supportive, knowledgeable, “lived experiences” etc. It might even be called a “Centre of Excellence”.

This site currently has 150 active users. Let’s assume that 100 are stroke survivors and 50 are carers (just for a bit of rough and ready analysis).

By the numbers you mentioned 40% of UK stroke survivors live with some form of leg spasticity or rigidity which equates to 40 members of this forum right now falling into this category.

Let’s see if we can just 10% of that 40% to " explore this kind of self-directed, hybrid approach that blends biomechanics, physiotherapy, and neurology"

So that’s four volunteers.

Anyone interested in joining in?
Btw we only need 3 more to make the 10%, as Mrs5K is already partaking in this.

Just 3 more volunteers required.

Who’s up for it?

Come on, let’s be havin’ you !!!

:pray:

Bonus for anyone.
Who famously said this phrase?
“Come on! Let’s be havin’ you!”

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Manji, I think this doorway remains unseen because the system works in silos, and self-directed recovery takes time and energy that many survivors don’t have. But more than that, it asks us to shift from being passive patients to active participants, and that is not a shift everyone is ready for. Still, I am just planting a seed. It needs more than soil to grow…+ water, light, time, and patience. So if anyone feels the nudge, I am here. And as Delia Smith famously said: ‘Come on! Let’s be havin’ you!

  • In business or healthcare, “silo” is a metaphor for a department, team, or specialty that works in isolation, rarely sharing information or collaborating with others.
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There is a place for everything and that includes silos.

I declare this forum to be that silo that encourages and supports its members to explore self-directed, hybrid approach that blends biomechanics, physiotherapy, and neurology.

Well are doing our best to lead the horse to water, whilst not forgetting that a pencil must be lead :slight_smile:

:pray:

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Thanks for the silo explanation. Living in the country, I thought it was somewhere to keep grain or grass…

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Thanks for the silo explanation. Living in the country, I thought it was somewhere to keep grain or grass…

Yes, that’s exactly right. A silo is a structure for storing bulk materials, and historically it was used for grain. But here I use it to refer to healthcare when one discipline does not talk to another… physiotherapy over here, neurology over there, biomechanics somewhere else. What I have been exploring is what happens when you bring them together. That is where the interesting stuff starts to happen.

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You have totally lost me with this conversation.

I’ll just say I know 4 people personally who have had strokes and that includes me. Only one has a leg / walking issue. The 3 other including me have no walking issues.

Hope that helps whatever you are on about.

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What we are talking about is a way of working with leg stiffness after a stroke, using the body’s own reflexes rather than medication or stretching alone. It has helped me, but it is not something that applies to everyone. I am glad that out of you and your friends 75% have no walking issues.. Of course, strokes vary enormously. Some are mild, some affect different parts of the brain, and some people are simply luckier than others.

What I care about most is that people feel able to explore what works for their own body, even if it falls outside the usual approaches. Not as a replacement for medical care, but as a way of taking some agency back.

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Nothing wrong with that way of looking at things.

But its not for everyone and sometimes it looks like with topics put on by yourself and others they often look like it’s the way forward because you / others think so.

But often you say it’s not for everyone and that’s what it should say with any topic that’s covering how we progress in the situation we find ourselves in.

Re getting moving / medication etc

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That’s a nice way of looking at it :slight_smile:
So 75% with no issues with walking which is great, but of the 25% group if even one person was to read this and think “Maybe I can try that” that would be worth it would it not?

Of course, that one person will know having read this post, that it may work for them or it may not. There is no suggestion this is a fool proof method with a guarantee of success, but if they don’t try it they will never know.

Nothing ventured, nothing gained!

For me the key word in the above comment is “Looks/look”
Is this not just a perception thing?
One person sees it one way and another see it another way?
I must say, speaking for myself, I never find topics posted on here that are suggesting definitive solutions. It’s experiences that people have had, some good some bad.

Some have had success with one therapy, others have not.
Some have had excellent NHS care, others have not and so on.
By posting on here, I don’t believe it is suggested that this is normal for everyone.
There is no one cap fits all solution for this, we have to find things that work for us and one way to do that is to research or ask questions on here.

It could be argued that the reader can decide for themselves whether this is for them or not? The poster (Roland in this case) has shared his experience and views, but as the reader, I can decide for myself whether this is for me or not.

Speaking for myself, I love to read posts submitted by Roland but just because I love reading them, does not mean I understand them. Many times I think this is way over my head and I’ll leave it at that. At a later date I may come back to it, or I may not.

More often than not, I find posts like these inspiring which I think other members may also find, or not?

:pray:

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