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Tremors, CIMT &c from CPSP thread

Simon

Andrew
I wonder if there’s a chemical as well as exercise to improve it

Andrew

Simon I also wonder that. I know that some like to use pentagabin, I think it is called, but I am a purist and generally only consider chemicals seriously if (i) there is no other option or (ii) if neuroplasticity very definitely doesn’t work. I have kept to the first option for decades, extending that to artificial sweeteners and other things too. Clean, baby, clean…..

I am halfway through Jill Bolte Taylor’s first book in which she, as a professional neuranatomist herself, witnessed at first hand the degradation of the cognitive part of her own brain over the hours since her own deep bleed. In her case it was a very serious stroke. The tantalising thing about that book is that she declares that she was completely healed after eight years. That is almost never claimed by anyone with a stroke. No doubt I will find out how she did it, and how in detail she was affected by the stroke - one needs both bits of info to make a judgement.

As a side issue, when I was in hospital and after my MRI, they said to my wife that this one was in fact my second stroke. The only thing that I can think of was what I labelled as an attack of labyrinthitis a few years before the pandemic. The labyrithitis was confirmed by my GP, but maybe he was lazy and clearly since I had managed sone background research he unthinkingly took advantage of that! I knew immediately when it happened - then the lights were very bright and everything swirled terribly, so much so that I could only lie down with my eyes closed. But four weeks later I was absolutely fine in all respects. I declared myself utterly fit after cycling around a long sweeping curve while looking backwards. So maybe it was a small bleed? Anyway, my experience seems to indicate that a full healing is possible at least in some circumstances.

Simon

Andrew
I think you are referring to pregabalin.
And that is included in but not exclusively What I I meant by chemical.
Maybe a bananas will deliver the right balance of nutrients to promote a synthesis of something useful or maybe it’s turmeric and other possible dietary supplements

Eg E270 is Lactic Acid, E948 is oxegyn! The active ingredient of turmeric has E number as well

With the CIMT I think the idea that was there in the primate study is directly applicable to what’s useful for us.
the stupidities that jobsworths responsed with to proceduralization as created around it by publishing CIMT guidance notes is absolutely unhelpful to us. Yes it needs to be described. No it doesn’t need to be as it is described
Current circulating descriptions serves only to justify having a paid intermediary to decode and decomplexify the unnecessarily encoded and complicated premise

I find GRASP and the questionnaires that come from the Canadian sources in Toronto and British Columbia mildly amusing in use. I have been part of several studies run by professors and PhDs and not one have I come across where they have even had the sense to change the questions related to dollars and cents to pounds and pence.
I think the arguement of not recreating something that is fit for purpose has merit.
I think the arguments that say we’re using this instrument because it appeared in a peer review journal is less justifiable

I think absolutely unjustified is the “with all the training we’ve had even if we invent anything that we are confident is correct we’ll have to go through a peer review journal exercise before anybody else will grant it credence”

In general I think the idea of peer review for scientific works is as flawed as it is useful. Intelligent scepticism and broad reading is the way to operate as a #StrokeThriver - You have to be your own recovery director because no one else has the inside knowledge plus motivation plus attention span equal to the challenges

Andrew

Simon I was referring to pregablin - this is what happens when one relies on a dodgy memory!

I had decided tacitly that “chemical” was the same as “pharmaceutical”. OK, thanks too, and I have suitably extended my thoughts now! I am glad to report that I already use the foodstuffs you mention on a daily basis. Especially oxygen!

I’ve looked at CIMT, but it is not the sort of thing I am looking for with the violin playing. In a sense, all I have to do is to remove the tremors from the right arm. Simple to say, but not to do, and I am not the only one. As far as I know all will be well if that removal happens. It is a freedom for the arm to move completely under my control and will, rather than be constrained in any way. Or maybe I have misunderstood what CIMT is?

My experience as an academic has taught me that my teaching has to be clear and easily understandable even when the topic is tricky. In a sense I am like the parent mammal chewing and/or predigesting the good stuff for my offspring to take an even greater advantage of the goodness there. So the CIMT you’ve mentioned really ought to have been written in a way that doesn’t need a paid intermediary. I will sell the virtue of therapists, however, for they are able to see issues and correct them thereby avoiding other issues later on, but the overall course of action should be described clearly.

I have to say that it is quite tempting as an academic not to involve others outside of academia. It is a stupidly busy and stressful environment, with little time just to sit and think. Folk in academia are waking up to this, though, although there are some disciplines where it is absolutely essential to involve others. Examples include aero engineers, but there are many others. It seems to me that stroke and other neurological conditions do need a closer involvement between academics and thrivers. The stroke happened to us but we are not academics by and large, whereas academics won’t have had a stroke by and large. A gap is very possible and so we need to talk more.

Peer review is meant to be the gold standard, but it can be abused seriously. Personally I have had a wide range of experiences…. Even editors only know closely the topics of a small percentage of what passes across their desk even if they are of international standing. I can’t think of a better way to review, though. Some advocate open reviews - in this case the reviews are published alongside the papers and all the identifying information about the reviewer is given. Sounds superb, but it can cause all sorts of interpersonal issues; folk will shy away from that. Scientists are people too and there are still factions occasionally. Surely an honest but anonymous peer-review is good?

We in the stroke community do follow the age-old tradition of self-experimentation while we wait the, say, 10 years for something to be approved of officially. Even then it “works” for maybe only 30% of the population! But the wait has a serious ramification for living our lives, and therefore in a sense we cannot wait. I can see why. The brain is complicated, and, since different people can respond differently to some things, I can see clearly why we try ‘unproven’ things from time to time. Physical science, on the other hand, may be very difficult but the predictability is often much better.

The above is dangerous because it is general, and it is from my biased and cynical perspective. Hopefully it contains more than a grain of truth!

Simon

Andrew
Responding in roughly the same order for as long as I have stamina 🙂

Compounds! Drugs!!

Yes by chemical I had not said pharmaceutical. Even in pharmacopoeia there are compounds that are produced by trees and shrubs - EG aspirin and Quinine and digitalis

Motor control

I found that tremors in my hand seem to reduce when I work on the range of movement speed and strength of my whole arm.
I suppose there are many causes of tremors. So I am speculating that one of them is that the fine control is overwhelmed by the challenges of working at extremes of capability. Even before the stroke I found things like extreme effort of removing a very very tight jam jar lid or rock climbing would cause shakes.
By pushing the boundaries out in all directions I increase the area of operation within which control can be added. Much of my tremors I attribute to having too many muscles for the task in hand switched on. Isolating the correct muscle and the mechanics to switch between muscles in graduated activations is the root I think of at least one cause

Has that drawn a sufficiently vivid picture for you?

One of the aspects I don’t have an answer for is the way my right hand side has ‘wired’ various things together.
My toes and my fingers, leg and arm operate as a units in many cases. They respond to a yawn like impetus that I can affect but not control, not turn off or on or shorten.
They prove there’s a neuropath that For example will cause the muscles to fully extend my fingers but I still can’t do that in a discretionary manner. With every step I take the muscles to my toes of my right foot are inappropriately active leading to a painful walking experience and that is then exacerbated if I try and carry anything or put effort in so for example trying to open that jam jar that is tightly lidded or cleaning my teeth also scrunches my toes painfully - Ive yet to find a professional who has the slightest understanding or indeed willingness to show interest in resolving what for me is a challenge I am reminded of literally with every step I take.

Neuroplasticity

I’ve yet to rewrite my Neuroplasticity as the Enemy post - let a brief summary here stand instead -
Neuroplasticity is a polysyllabic recently coined overly complicated way of saying “we do constantly relearn things” including autonomic and habituated behaviours.
With the impact of stroke removing capability; for example our discretionary control over a limb and our daily existence requiring that we still perform equivalent operations like cleaning the teeth neuroplasticity operates to habituate not using the affected limb and to establish new autonomic reactions to the desire to accomplish whatever the result is. Neuroplasticity started negatively affecting your abilities within minutes of the loss of brain tissue!
This force is constant, ever present.
Like gravity and friction. When understood and harnessed gravity friction and neuroplasticity can be employed usefully. When not understood or misunderstood or ignored the force is still operating. Thus a good arm on a newly stroked person starts to lose muscle mass within 2 weeks, tendons start shortening, flexibility in joints and tolerance of nerves to extend all diminish through inactivity. When the neuroplasticity could be reforming control pathways autonomic behaviours have removed the impetus to try moving the arm, an arm that is not as physically capable as it was even if the control was there. Thus further compromising muscles and tendons and control All working in an integrated fashion.
We now have a reinforcing memetic circle of inability to use. All factors combined to decrease ability.

CIMT

CIMT started with the observation that chimps that were surgically compromised to remove the control of 1 of their arms and then were physically constrained on the good arm RE-gained capabilities that must have been neurological in the origin.

Cimt as it has been written up by therapists whose modus operandi includes a traditional approach with repetitious exercises have reinterpreted the original observations into “you have to wear a glove for 6 hours and pin pegs to a cup.” This is not only wrong it’s counterproductive (okay a simplification and hyperbole)

The form of repetition that builds muscle mass is hypothesized - and I think there is now enough research to say is theorised - to be a very poor learning environment for anything cognitive or neurological where variety of need is the primary driver of learning not identical repetition (See the ebbinghaus effect)

In having both hands (legs too) available for a task but selecting consciously to use the compromised arm and hand cooperatively in a task where the compromised hand takes the lead is the required - in my humble opinion - scenario for neuroplasticity to the operating anywhere close to optimally.
I’d partially evidence this by fact that people often recover walking much faster than bilateral dexterity - walking requires both legs dexterity can select an alternative arm. The choice leads to all the compromises about that started with neuroplasticity unselecting the compromised limb before even there was a chance to rehabilitate it.
I’m quite confident that 80% of therapists would need this pointed out in order to examine it and I’ll bet half of them would reject it simply on the basis of that’s not what we have done in the past

Peer Review

I find that stupid ideas from well-known sources get repeated whereas insightful groundbreaking ideas from unknown sources do not.
The peer review engine is fuelled by number of citations.
So while peer review if conducted with honest faithful objectivity would be the gold standard finding people who operate without bias and all the other emotional baggage is rare. I think that peer review should be open with reasoning and sources cited and those who present information for review should have been mental stamina to accept all comments dispassionately - but there are not many who can do that. I think I am better than most at receiving comments because my starting point always is what is the commenters context that they do not agree my content?
I have also found that giving honest feedback is rarely received in the spirit in which I offered it. Which is always “this is my perspective and you are entirely free to totally disregard (I took time to do this that I will never get back and care to craft this feedback. I am offering it as an expensive product which I hope has value to you”)

Stroke Research

I think it’s laughable that those with a visceral understanding of the impact of stroke have so little say in the research and those with a role in research as you point out (by and large) have no lived experience.

In putting the proposal to BHF for there to be funding to promote the activities of SIG it was abundantly clear that those we spoke to thought I was the token wobbly and had no concept of the idea that I originated the proposals.

I couldn’t even be included as a co-applicant because they wouldn’t recognise that we exist. The history of medicine, research, grant funding is such that it has built in blindness to innovation! Ironic!!

OK long enough pontification
🙂
10¢
Ciao
Simon

Andrew

Simon I have tried to write this succinctly!

Compounds and drugs: true.

Motor control: Yes, and there’s an element of distraction too. This presupposes that one has developed sufficiently since the stroke that multi-tasking is possible. Perhaps I need to wade though some easyish pieces. Rehearse them is the head so that bowing and fingering is prepared by the brain, and then endure the mess practically! Let’s see if that makes things better.

Neuroplasticity: Yes, again I agree. My synonym is that to is to relearn, or learn in general. For us adults we have a memory of how things are done, but it is more tricky for kids

CIMT: I think that you are right. I have managed so far without CIMT and in any case it is useless for getting back to bike-riding or violin-playing. I am a strong advocate for using the affected limb when one has the choice. But it is relatively easy for me because the affected arm was the dominant arm, so I don’t need to think about it much. Obviously one cannot do it yet if the affected arm is spastic.

Peer review: generally I agree with you. But the really good authors get sent loads, which they then cannot do, and the paper is sent to a lesser author. It is often the case that insufficient casre has been taken, or both reviewer and author use incorrect methodology, end so on. As I mentioned, Peer Review is impossible in practice. At one point I was doing about 120 such reviews evey year, and I only took them on because many more than half were garbage and they needed to be told, chapter and verse, and also I knew the topic and its background very well.

Stroke Research: Were you barred from being a co-applicant because of the lack of a uni address? That too is a possibility. But there has to be more dialogue between the parties.

Nige

Is it possible that tremors are a form of clonus ?
Thalamic tremors it turns out are a possibility, great !

Interesting video from Elise recently in that under pressure body movements are good for neuroplasticity ie really pushing yourself is believed to force neuroplasticity whereas gentle movements do not. Presume this might apply to non movement activity as well such as reading, bit of maths, puzzles etc

Andrew

I fully agree with Elise’s position on this. The old adage, “No pain, no gain”, springs to mind.

Totally unrelated, perhaps, but an anagram of “pain gain” is Paganini. Ah well. In the classical musical world there are painful techniques, such as double-stopping artifical harmonics on the violin. These occur, for example, in Paganini’s first concerto, and it has to be learned very very slowly with many mistakes made, and can be very painful both physically and for the mind. It has to be a long-term aim if one is to embark on that.

Simon

Andrew Were you barred from being a co-applicant because of the lack of a uni address? That too is a possibility. But there has to be more dialogue between the parties.

I wasn’t so much barred as it’s simply was not possible within their system as set up including their mindset that had no possibility that anybody who had suffered a stroke might also have ability and motivation to pose a question useful to anybody 🙁

Andrew with you. But the really good authors get sent loads, which they then cannot do, and the paper is sent to a lesser author.

This confuses me. You’re Referring to the author as if they were not the person with the findings. Is it normal that one group of people investigate topics and are not sufficiently literate to be able to convey in writing so another group of people without much competent thinking then describe the findings?

That makes little sense to me. I might concede a possibility of that combination. it in no way matches my expectation of what the norm in competences would be!

Andrew Obviously one cannot do it yet if the affected arm is spastic.

I’m Suggesting this is a precisely the time to start trying. The fact that there is no observable evidence the effort has reward is definitely not reason to not try.
I envisage an s curve with time on the X and result on the Y where the first 20% (16.67%) of the time is less than 0.01% on the rewards axis and 40% only results in 2.5% achievement…

Andrew

Simon Sorry, I act in three roles, as author, as Editor, and as reviewer. As reviewer I have once been sent over 120 papers to review over the course of a year, but it is usually one per week(!). My reviews are comprehensive but anonymous to the author. As author I usually submit a few for publication each year - this goes to an Editor who is then formally advised by the reviewers. This coming week sees my first research paper since the stroke. As an Editor, I can be sent a variable number, some of which get cut immediately by me because they are not good, and the others go to reviewers for review who then advise me, and I make the final decision.

If the journal is fairly general, then the Editor (even the Editor-in-Chief) won’t know the topic in detail. One example might be biological fluid dynamics and the Editor-in-Chief might be an expert in blood flow. As an example, he/she then gets sent a prospective paper on air flow in the lungs and why 24 bifurcations off the airways is about optimum. Or one about the movement of synovial fluid in the knees. Or what happens to cerebospinal fluid during a stroke. Many biological fluid dynamicists will know a little, for their eyes and ears are open and they go to conferences, but they are insufficiently expert to act as a reviewer. Moreover, they generally don’t know who is sufficiently expert. If they do a quick google search, then one often gets the best and then the best are inundated. Or they get the loud and brash and ill-informed who favours his mates who are equally ill-informed and so garbage gets published. So formally peer review of any kind is meant to be very good, but in practice that is almost impossible to achieve consistently. Yes, this is cynical, but it is also realistic. It’s a dog-eat-dog world out there, lots of little emperors. Good quality journals are usually ok, such as the Journal of Fluid Mechanics in my field.

When I was quite young I wrote a “Comments on….” paper saying that the work of a different author was flawed. Great. Then I met him at a conference. Very awkward, for while we academics are meant to be objective, we are still humans and have feelings. However, he was very gracious saying that he was wrong and I was right, and it was my right to call him out. Maybe, but it was difficult for me to cope with even afterwards. Since then he has produced some very good work.

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