I have mentioned my paresthesia before,
I actively “encouraged it” with my vibration board and other gadgets.
I’ve put them on pause for a few days… but the results have been good.
I recently learnt to turn off (relax) my quads (thigh muscles) and calf muscles.
They had been locked in (spasticity) for months but now I am practicing releasing them faster and faster. Got it down from 5 secs to 1 sec.
Mechanically it makes sense when you realise a muscle is switched on and off by nerves. Returning sensation and the correct working of muscles seem to go hand in hand. I am progressing nicely, and the couple of physios that look after me are very impressed.
Is anyone else experiencing anything along these lines?
Cheers, and happy days to all readers !!
Particularly upper limb/ hand when exerting effort but also for example trying to pick up a coffee cup without also clenching my calf and toes
Have you been given or invented any strategies to practise? All I have is sort of thinking ‘at them’ ”ok you are supposed to be relaxed now" but that’s conscious thought and I really want to be able to extend my arm out with unconscious thought.
I have a nerve from my neck that runs down the back of my arm that I think I’ve aggravated by all the times I try and clench my fist while relaxing my arm or extending my arm while relaxing my fingers. I find the orientation of the whole arm really affects why I can do with a hand so shortening is a possible component but muscle activation is the biggest and clearest one
I’d really like some strategies but my physiotherapist doesn’t listen to me and just tells me it’s mechanical shortening of tendons I know that it is at least partially wrong it may be a partial contributor but it’s not the dismissive 100% “I know best cuz I got the degree” cuz I know different cuz I got the arm that I live with and observe the comparison with the good one all the time
Hi… yes, I’m on a similar page to you, and all you write about are on-going problems for me as well. I have a good team following me ; 3 physios, a councilor, a chinese dr., and a radiologist ; I quickly fired anyone who didn’t have a feel for what was going on. these last 2 know a heck of a lot about strokes.
Tendons shortening is what I call daily maintenance… a boring tug of war going on. They need stretching & looking after otherwise they end up restricting movement.
The discrepancy between you & your physio is real… you’ve had the stroke, not them. I learnt many things by doing my own research. I find ppl who understand do so because they have thought about the problem more deeply. Take proprioception ; what ppl understand there varies from 10 - 90%… nobody can understand it without feeling it directly.
The reason muscles malfunction is also down to nerves controlling them… activating and de-activating a muscle is via nerves. That is why I think the vibration therapy (maybe short sessions with a hand held massage gun?) is key. Nothing wakes them up is quite the same way. I conscously have to relax my quads, but I bet you it’s automating the process each time more and more. One day, it wil get smoother, it will become unconscious ; some have learnt to switch off unconsciously and with some muscle groups it’s early days… so work in progress / and yes, conscious thought required…
How long ago was your stroke, simon? mine 6.5 months ago.
I think it’s a complicated subject, I would advise trying to feel the muscle groups switch on and off. How are you with that stage? Can you feel these muscles?
We can talk more if you like. I don’t have all the answers, and I don’t know who does.
Best wishes, Roland
Hi I had 2 strokes nearly 18 months ago on left hand side and still when I wake up every morning and my left leg when it is first straightened goes into a spasm only once or twice for a few seconds each time wondering if you or any one else had some advice on this
hmmm, don’t know about spasms… but I get jolts quite often
like sparks or electric shocks going through the body
Nerves, no doubt
I would bet your nerves are either healing or having a moment
Good luck, R
Hi Mccabe-- My spasms started in my left leg right after my stroke. I got them at night. The leg would tighten up-hold for about 3-5 seconds- then relax. It would repeat this every couple of minutes. I couldn’t sleep. This went on for months. Fortunately, the nurses in the hospital told me about CBD drops, which I started using when I got home. 3 weeks later. That’s the only thing that brought relief. Over time the spasms came less often. I hardly never need the CBD now after 4 1/2 years. Just the brain healing I guess. Jeanne
Thankyou the pain isn’t to bad and it only happens first thing in the morning I thought it might be to do with sleeping ng and hardly moving I go to bed at 10 pm and usually wake up about 2 to 3 times before I get up at 7ish that’s when it happens I’ve got use to the pain it only lasts a bit sorry to hear some of you seem to have a lot more pain than me
Thanks, Chris, and and all encouragement welcomed
The difficult thing about this stroke is to find a thread / any thread / any evidence I am making p;rogress. Well it progresses at a snails pace, but I think I am on to something… ever since I realised it’s nerves that talk to each other and switch muscles “on” and “off”
Google scholar is a good source of sometimes difficult to select or read but rewarding material
I often find the abstracts are enough to give me a thread upon which to pull and observe and construct my exercises .
My stroke was almost 30 months ago now .
I’m still wobbly but im walking, I held the marmalade jar in my right hand this morning while I ladled out with a knife in my left hand. I was born right-handed. I couldn’t put the jar down without using my left hand to pull it out of my right hand but that’s a long way beyond where I was when I came out of hospital. I can now relax the grip but I can’t open the hand fully - an improvement on where I was when I couldn’t relax the grip at all.
It is also an improvement on where I would be if I’d listened to my physiotherapists who have repeatedly told me about the limitations that they imagine because that is what their lecturers imagined.
I’m interested how you built a good team and fire those who weren’t so inspiring? I’ve just had a succession of single individuals which started with a young lady who was like a rabbit in the headlights because covid had arrived at about the time she’d started a professional career. she was sweet and concerned but close to clueless about delivery in a paradigm completely different from everything she’d been trained in. She didn’t have any experience so translating what she was doing to a new delivery mechanism was beyond her.
I’ve had a few other mostly hopeless ones. in fact I’ve just haven’t had a one who was inspiring and of the same enquiring and exploring and adapting intellectual orientation as me. they have all been 9:00 to 5:00 and I’ve never worked like that. An hour a month of instruction doesn’t cut it. I have a program of integrated use that is most of my waking hours. I’ve developed habits in that time that would be better challenged and removed but mostly I fight learnt non-use constantly and that fight is developing my capabilities
One of the challenges I see is that they have Latin mastery of muscular skeletal terminology and they can describe in those arcane terms exercises that are postulated to be helpful but none of them in my experience have realised that a large part of their job; probably more than 50% is about viscerally communicating to the recipient of their services in a way that is inspiring and is adapted to the individual’s current and evolving needs.
I went to a few online physio and occupational therapists conferences and I discovered that they share a conversation starter like " lovely weather for the time of year " might be used in layman circles and it’s “have you ever met a patient who did their prescribed repetitions?”
It Speaks volumes to me that they recognise it’s a problem they turn into a joke rather than realising that what they’re saying is “I’m systematically unable to talk to my clients in the manner that gives the client value” and take action on that front as a result - I think that a peer support community that is focused on rehab exercises and has external professional guidance available when reached out for is a missing component of rehab strategies that are possible with the technologies we now have it was for that reason that I wrote Digitally Enabled Chronic Care Community Networks: beyond '1hr Fortnightly zoom Cafés'
But so far I’ve had lots of interest but no actual traction
Anyway long post deserves a TL;DR!
Enjoy your weekend
I read your post with great interest. I was lucky in building my team ; the Radiologist and the Aqupuncturist I’ve known, as friends, for 20 years. The 2 physios are great at listening to me and answering my questions. They may not always get the exercises right for me, but they are humble, experienced, and I know I get some inspiration from them, and at the least develop my ideas from them…
They’re good, but they cannot know what having a stroke feels like. My Radiologist says when I get most of my proprioception back, I will make faster progress. And that’s a big word, one that I find is often understood only to a degree, depending how much thought has been put into it. But how could one understand the word proprioception fully without ever having experienced it?
Like you, I find “in theory” and “in practice” are 2 different things. Most physios churn out their routines on autopilot; they are not relevant or customised to my particular needs. Taking matters into my own hands, and getting on with it is very much to the point. Even a random hunch I have is likely to be based on what I feel my body most needs; my insight and understanding are vital precious steps towards progress. I recently bought a 350p. textbook on my kindle “Muscles and Nerves”… since I waste hours trying to go beyond the standard 1 page info on anything I look up on the net.
Let’s hope one day stroke rehab improves
And a good weekend to you too, R
I have lost my mom to major stroke she was only 57 years old cause her to have one 1⃣ is what she was eating i was trying stop her, then her sister had one also years later…,My mom name was Rose Bud Smith
I on one of the topics of this club read about the tens machine by little electric shocks stimulates the nerves and it sounds like a few people have had good progress with useing one so I have ordered one arriving tomorrow 5star reviews hopefully will work will keep you all updated