I went to a mini conference via Zoom yesterday - Run by BBK solicitors and ARNI.
The speakers were professors Nick Ward of Queens Square & Anand Pandyan of Bournemouth university.
Neuroplasticity
Nick’s presentation contained an eye opener
He said neuroplasticity has the most effect in the first couple of months post stroke (Which surprise me because I thought neuroplasticity was only long-term & positive)… BUT…That early effect is in de-wiring the affected side to build the compensations that have the potential to be life long limitations.
That is:- neuroplasticity is both good and bad because the bad influences are powerful and short-term and undesirable in capability recovery in the long term
They contribute to a common capability achievement where at the 5-year point capability has fallen back to the two or three month point!
The second point I haven’t properly digested yet but it related to the mis-design of exercise necessary to transfer capabilities into function - I’ve got to follow up on that one eg watch again - But the gist was standard exercises make you good at exercise movements not at functional tasks like lifting a teacup - so I guess my reliance on everyday activities was intuitively the right thing to do - It wasn’t rocket science but it did require setting aside the guidance given by the experts
Upper limb FES
Anand surprise me greatly When he answered somebody else’s question about the use of FES for upper limb by saying that it should be at least 2 hours per day from about 2 to 4 weeks post stroke!!
The reason being that muscle atrification starts in that time without exercise. Since the brain can’t move or fire the muscles something extra has to be doing it - Ive got an FES machine but I didn’t understand what I was supposed to be using it for - now I do.
But the main point is that it is strongest and most active and most negative for the beginning and it lasts for a long time but is areally weak force when we’re trying to use it for good
I have no real understanding but I thought neuroplasticity was at its best in 1st 6 months which is why we’re all told that’s when we’ll make the most improvements then it slows down.
I think there probably needs to be a balance between exercise versus functional tasks. I always believed at some point my exercise routine needed to be built into my daily activities rather than a dedicated exercise routine. I think the exercise is useful initially as you need some function before you can do the rest.
As for FES i guess that makes sense but most of us don’t get that opportunity so early on in our recovery.
But then again I probably know very little & can only offe4 my experience.
Precisely (the miss informing message) neuroplasticity is at its strongest when the negative effects are at there most prevalent
The capability that’s positive, that you regain early on - is that stuff which wasn’t destroyed but was masked by the injury to the brain.
And yes daily activities need to replace exercise - exercises are needed at the start.
It’s the negative neuroplasticity that is the enemy because it builds unwelcome compensations into exercise results - We need PT’s who are properly educated and then can educate properly their beneficiaries
I don’t think it’s such a black and white case / scenario. I think we can learn, very cleverly, an incorrect thing… after all, everything or almost everything is wrong to some degree. But what rapport do we have with our brain and body? Do you get impatient? Are you good at working? What about learning / correcting / improving / repeating? There are young brains and not so young brains. How pliable a brain is really depends on our rapport with it. Sure, it picks up bad habits, is tricked, has primitive safety modes built in (amygdala), but if one has a good working rapport with their brain, accepting all its limitations, we can achieve remarkable things. A stroke is the ultimate challenge, but there is no choice if one is to overcome the prison we find ourselves in. Mastery, discipline and control are our responsibility (refine and strengthen good synaptic pathways). Neuroplasticity does not slow down ; it cannot. In my opinion, we may not be happy enough, and settled to make the most of it. If we’re unhappy, we cannot learn. That’s why mood is the most important thing… our brains cannot function constructively if we’re not in a good place.
Imagine me in my first year post stroke ; a wreck, emotionally. My brain was frightened to death. Now I can paint pictures I am in much better condition. I don’t think we should classify the brain as this or that, as if it is a separate organ. It’s part of our whole, and the big picture is more important than any one aspect of the brain. Anyone who classifies the brain as this or that is talking nonsense; we are in our infancy when it comes to understanding the human body. Our arrogance far outweighs our humility, and our ability to use what we were given by God. I for one am a firm believer in the power of neuroplasticity and recovery.
I’ve never had a med professional layout what accords with my axiomatic layman’s observations of lived experience before NOR offer further clinically verified analysis of conclusions
I’m still trying to comprehend the messages.
One) is that I’ve never had a PT or nurse who properly understood what was happening AND shared that knowledge with me - this is material to my quality of life now
I guess that applies to you too (?)
Two) is that maybe we can help others!!
the SA et al SHOULD have been already doing it but isn’t ! Maybe we can influence that too? If not we can highlight the failure
I go back to the word proprioception… What people (including professionals) understand about that word varies tremendously. It really depends on how much thought and imagination they have used to understand it. Now, I have put in no effort, and understand it from the inside out, because the right side of my body has lacked a sense of proprioception, and my left side has it intact. But I have never talked about it to someone without it. I have talked to people without out it, but they’ve never heard of the word. Some people who are meant to know about it don’t. I once explained to a senior physio that ‘proprio’ means self and ‘ception’ means awareness. They didn’t know that. They had some feeling and general idea about the word.
Now, talking about Neuroplasticity, a word and idea invented around 1950, it’s clear we know next to nothing. We used to think an adult brain was formed and shaped into a fixed quantity. Now we at least know that new synaptic pathways are formed all the time… and unused, old ones weaken, and die out altogether. If we knew more about the subject, we could start to optimize and harness the potential of the human brain. Mostly, a lack of discipline in life leads to a confused and disjointed network of thoughts. I think excelling at a skill taps into a brain’s true potential.
Let’s hope we can shed some light on the subject. Everyone knows different things. I like working with my physio because we exchange knowledge quite well. I don’t learn what I want to know, I learn what she is able to impart to me. I find that out, and then work very hard together. I can only learn what she knows, but it’s an improvement on my own knowledge. Then there’s another physio I follow and learn from, then a Radiologist, I chat to every day, then a Chinese medicine Dr who I see twice a week, another physio / family friend, a counselor, a neurologist and 1 or 2 others, that I refer to as my ‘team’. I learn what I can from them, and have learned a lot. I’m learning about watercolours too, and I learn about music too, and teach violin, though I cannot play it… yet. That last subject has been my lifelong professional passion. Things may shift. I now have a goal to get better and this is not by choice, but by fate. However, the changes in my life are minimal. Yes I have problems, they have just shifted a little. Maybe I will enjoy or learn to enjoy this phase of my life. The key is to enjoy whatever it is we do. Enjoy the journey. I hope all survivors learn to do that.
@SimonInEdinburgh Good info Simon: I think we also have to think about senior citizens and “Sarcopenia”; the wasting away of muscles as we age and how important it is to maintain strength for longevity. I agree that functional movements
everyday are a must, but perhaps adding a few strength moves, say every other day are an addendum to the routine. I think that neuroplasticity is still a theory? Although a good one and as Roland says, the only thing we have. By the way, I’ll soon be posting my experiment with a new routine I’ve been working on. The extreme cold here in New Jersey the past couple of weeks has been very hard on me. @pando Roland: I’m thinking of trying isometrics…they are easier on the joints than weight machines.
Best of luck all: by the way Physios as you call them in UK…I’ve had dozens and they are all perplexed about spasticity.
Derek
Nope - It’s a thing - starts before birth continues lifelong
But it appears that that chemical chaos in the few weeks after stroke encourage is it but only in a good way IF You’re well advised and have the capacity both of which I think are missing in the normal case
Hi Roland @pando
I read the post I’ve just replied to when you first posted it. I have read it again today because I realised I couldn’t take it in that first time around .
It’s actually packed, packed! With insight .
I agree. I also come at all your observations from a different angle and have nuances upon what you say.
there is a general observation that people don’t understand vocabulary.
That is immediate multiplier by zero in any chain of logic or information exchange.
There are those that use the vocabulary inappropriately or without understanding - I suggest the whole of physiotherapy interaction with beneficiaries is an exercise in arcane Latin being used to communicate with people with no understanding of the Latin while “but I can’t pick a coffee cup up” expresses a need that isn’t understood the other way around because it is so axiomatic.
There’s a lot more in what you said that I haven’t picked out that we agree on .
I think that your experience in teaching violin is probably like my experience of teaching project management. It’s not a case of what you know it’s a case of what you can bring at the other person to know. When you have done that with a passion for a few years you develop techniques and an understanding that others do not have .
I Have a hope that this community, can crystallise and contribute these understandings to the discipline that tries to help us and fails because it lacks the oxygen to turn the fuel and a spark into a fire
Which exact post are you referring to, Simon?
Yes, I think most conversations have a certain degree of cross purpose and words are not always accurate (perhaps we express ourselves inaccurately?)
Here’s a ‘funny’ story. On Monday I was having a rough day. So bizarre and new were my symptoms that I couldn’t really say what was wrong, but my wife had the brilliant idea of bringing me some peppermint oil. This is a good oil for relaxing muscles. Well we sprinkled a few drops on my ribs, stroke side. I was sure the ribs were aching from a rowing exercise or my treadmill (squeezing handle bars?). Anyway, when the drops of peppermint dropped onto my ribs I screamed with pain. How could a few drops hurt anyone? my wife, no doubt, thought. Luckily, next day my ribs were fine. Still lingering in my thoughts was this strange pain from drops of peppermint oil hitting my ribs, of all things. Hot skin meets cool oil? Hyper sensitivity? Who knows. My wife must have thought, whatever will I make up next?
Then, this morning, my wife woke up with a terrible ache in her right scapula ; she has had problems there lately, and she must have played and demonstrated on the Cello too much, yesterday. We used the iTeracare wand on her shoulder, which began to feel better. Then she suggested I rub a few drops of peppermint oil on her back. As soon as a few drops of oil landed on her back, she started screaming, just as I had done two days earlier! I rubbed them in, and the next few drops triggered the same surprise reaction. Suddenly, she could immediately understand and believe what I had felt on Monday. I went from being a madman, to being fully understood. For sure, I’m unhappy she has a bad shoulder, but now we fully understand each other when it comes to ‘painful drops of peppermint oil’. It was coincidence we both discovered this roughly at the same time, had it not been that way, there’s no chance I would have convinced her a few drops of oil landing on your skin can be painful
We are on the same page as far as painful oil drops go, thanks to this shared experience. Although we know each other inside out, we would have agreed to disagree had this incident not been shared a few days apart. No wonder these are so many concepts that fail to get themselves from A to B… makes me think of synaptic pathways (dendrites) that don’t quite connect.
I was referring to this and for future reference whenever you see a post with an avatar in the top right hand corner that indicates 1) that it is a reply to that person but also 2) it is a link NOT to their profile but to their post that is being replied to
And we have example that is parallel to your peppermint oil
Something Ive said before is that communication isn’t what is sent/ said It is what is the subset of received/ heard that was meant by the sender.
The miss communication is everything that was intended to be sent and not understood and everything that was received but not sent.
These aspects need to be trained into medical professionals if they are to do a better job of guiding their beneficiaries rather than just talking to each other about how patients don’t understand - because the misunderstanding stems from the inability of the medical professionals to structure the messages to be receivable AND then verify receipt accuracy and completeness
Lol
Parallel is that you didn’t know about the avatar whereas I replied assuming that you would know which post I was replying to by the fact the avatar was in the corner
@SimonInEdinburgh What about it? well…I mentioned sarcopenia, longevity, isometrics…and how often to use strength training. Perhaps I didn’t use the right nomenclature.
We’re hearing each other but not managing a quality communication of understanding
So again I ask "what aspect of these keywords that you’ve listing are you asking about?
Guessing or assuming…
My OP (Original Post) was that the brain’s ability to control the limbs enters the phase of plasticity after a stroke that makes the best use of the capabilities currently available.
Therefore it builds in to the future behaviours the avoidance of use of what is damaged. Without action to address that becomes a vicious circle that makes the restoration of capability and increasingly distant prospect
As a result FES is suggested as a stimulator to stop the decline of muscles and tendons while the brain is unable to stimulate their usage. Activities such as isometrics would be beneficial but I think unreachable if there is not the control of the muscles to use isometric forces - but you probably know more than me
So the OP said neuroplasticity is an unwelcome driver of change in the beginning and FES is required to resist one of the factors
What more should we talk about to devise the best recovery regime that we can?
I think about has sailed for us but it doesn’t have to be that way for others in the future if we act. Also while that boat has sailed maybe we can arrange alternate strategies for ourselves or at least use our existing ones with a better understanding
Ciao
Simon
PS what did your experiment in avoiding exercising induced spasticity reveal? Anything useful?
