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Stroke Priority List - what is important?

Andrew

Simon Stroke has many many different presentations, and many many different therapies. Pain too, I would imagine, presents differently depending who you are and what you’ve experienced. It is very difficult to be definitive. It can be difficult sometimes to empathise because experiences differ wildly. This is why we need to talk and why we have to be non-judgemental. Thank you, Simon.

Ruthy

I’m piping up now because I just got really annoyed when reading @Andrew post about neuroplasticity - not at @Andrew but by the fact that i see more and more of us on this forum (myself included) having bought books to teach us how to cure ourselves.
When I had my stroke and started to complain about and ask for help regarding my cpsp & hypersensitivity, the OT and physio ignore my questions relating to the pain and focused only on hypersensitivity using neuroplasticity - putting my hand in rice and water and other uncomfortable situations whilst telling myself there’s no harm, so there’s no real pain. After 9 years of bathing, getting dressed etc, the hypersensitivity is still there.
Like Andrew says, it might work for others, but my point is, the health care professionals didn’t even entertain my cpsp and once they’d said (for hypersensitivity) try this, they left me to it, no follow-up on if the pain had reduced or disappeared!! Why do we have to DIY when we have no real understanding of what we’re doing, whether we’re doing it correctly or whether or progess or not is on track.
I’m sorry if I’m going over old ground, I just felt grumpy about it and @Nige comments about his daughters equipment. That leads me to another rant on pip, but I’ll do that another time - I’m tired now 🤣

Andrew

Ruthy Says he, being a little defensive (sorry Ruthy), but I have come to the conclusion that a close alternative word for neuroplasticity is learning. Hopefully I am not too far off. We have learned stuff throughout our lives and it always involves a training/retraining, or a physical change in the brain, to accomplish. We feel that we have really learned something when it becomes automatic, just like I did when relearning how to cross roads after the stroke - approach the dipped part of the kerb, choose which foot to start the maneouvre - decide on a exit strategy on the other side - look for oncoming traffic and then try to move when it is safe to do so - try to lift high enough, not to fall over en route and so on. All that work for the brain is tiring, but when automatic it is nothing. The learning of that is, as far as I am aware, neuroplasticity in action. So in a real sense it is not magic, but rather it is the natural result of dogged persistence over as long as is needed. That said, some things are much more difficult than others, my tremors being one of them. Maybe much more of the brain is involved?

In fairness to those authors you’ve mentioned, we have only the successful ones write about it, but we often don’t see the failures, or the ’not yet’s. The latter is an important role of the forum. The usefulness of the books lies in the possibilities they offer, and that can gee up us up to bigger and better. Life wasn’t fair prior to the stroke and it is worse now. However, we can make it better than it could be, and neuroplasicity/relearning seems to be a useful if long-term addition to our armoury. Actually it is both natural and miraculous at one and the same time, despite what I said earlier, and perhaps some of the therapists don’t really understand this and therefore try not to speak about it.

I am all too aware that I haven’t addressed persistent pain because it is not something that I have experienced, and I dare not make much comment. My hope is that someone somewhere can fix this.

Nige

Ruthy my experience is very similar Ruth. My physios treated me as though it was a physical injury, strangely I don’t feel this is resolved. It might be in part even though they eventually came to the conclusion it wasn’t. So as the pain, stiffness moves around, how can it be a genuine muscle/tendon issue. It would be the same place each time ?
I wonder though is the CPSP triggering a sensation of stiffness but also there is a genuine issue there as well. How can we tell the difference?
If there isn’t, what is the role of a physio in CPSP ? There is a role post stroke, that initial recovery but just for cpsp, what they need to do remains unknown ?

Hypersensitivity standard one size fits all, touch different materials. For cpsp ? Does it reliably work or work at all ?
Mirror therapy for the hand, interesting, even enjoyable due to mindfulness but for cpsp, again it’s the whole side for me. It does have some real world uses, just that I can’t see CPSP is one of them where it is hemi body.

Many posts might mention the recovery, parts of the brain taking on roles of areas damaged, neuroplasticity. It might be for cpsp, it’s that repair process which might have caused the issues. Whether it’s day 1 repair, day 90 or ten years time. If it’s directly related to the stroke itself, everyone would have CPSP on day 1 ? Maybe as Phil’s consultant has suggested, it’s the turning up of that nerve signal volume. Maybe each of us have vastly different repair times, faulty repairs at that.

I suspect that for all the advances in medical science, no one knows. Cpsp is not a priority, neuropathic pain is not easily resolved.
Medics treat it without understanding it or even recognising it. Until there is an agreed test rather than, it’s not a,b,c,d, it’s can only be central stroke pain, the true numbers will never come out to prompt research/training/developments.

In the meantime, here is some pregablin, is it the best for cpsp ? The person dispensing it unfortunately is very unlikely to know. Next please

Ruthy

I know, I do get mad but it’s frustration mad but I also recognise that, like you all say neuropathic pain (pain in general) is so subjective and difficult to pin down as to what will cure what for who.
I also read (but not all the way through as got frustrated - me? As if! 🤣🤣) the Pain free mindset by Deepak Ravindran but it seems to focus on what was happening in that person’s life when the pain started and addressing the root cause. I mean it’s good, but I didn’t know how to or couldn’t relate it to me as the pain was as a result of stroke so I can’t address root cause.

Nige

I did get a reply which was

"Thank you for your e-mail.
This PSP was funded and managed by the Stroke Association and so I have forwarded your comments onto them for consideration. I have received acknowledgement of receipt from them already and they are going to respond to you directly"

Having mentioned this in passing to the research team (before my email) I suspect the decisions surrounding this were pre forum (not sure that would have made a difference) and by people not with the Stroke Association any more. Those original decisions and why they were taken may not be known now.
Hopefully I can influence an adjustment.

If CPSP is genuinely 20%, I think 8% is the common figure I see. Of that 8%, 25% severe and excruciating pain levels. Add in all the other types of pain, shoulder pain for example is estimated at 40%, obviously some overlap to cpsp. It feels that 1 item of research into any form of pain in 6 years is insufficient.

Maybe we should do our own poll in the community to take forward what the community needs ? I think all of us have a totally understandable bias based on our own condition.
Perhaps we could ask forum users to contribute to a list and then ask the community to vote to get a top 5 ?
My top one, go on have a guess, it would be p
…no actually it would be the lack of any specialist referral point. Stroke consultant? Are they a myth ?

This suggests lidocaine might have a relatively short timescale benefit but that view is not universal. Some reports show a benefit for 3 to 56 days.
The various NHS documents suggest weeks to months. Does that indicate 3 months + otherwise they would just state weeks ?
https://rapm.bmj.com/content/43/4/415

Andrew

A brilliant idea to have a poll. However, my biggest fear is not having enough people within the forum to be significant, given the overall numbers and the proportion who participate. However, it is very useful to indicate how things are for us as a group of people who have all been afflicted by stroke.

Andrew

Ruthy

I agree Andrew we could run it on the forum just to see initially and, you’ll love this (🤔😉), we could try to run the same or similar poll on IG, it might get people to engage and join SIG

Andrew

Ruthy Go for it!

Ruthy

Andrew 😁😁. @Nige do you know how to run a poll on SIG? Do we need @Simon ?

Ruthy

Andrew first things first I’ll create an IG account for SIG. I think I should do a poll here on which logo we should use.

Simon

I can’t claim much more expertise but ..

Simon

Simon
I agree @Andrew we don’t yet have enough active folk

But I don’t think we should “wait until…” JFDI and repeat/ refresh as numbers grow

Don’t be afraid to try stuff - you can get it right 1st time or learn how to eliminate a mistake from the next attempt - no one cares† about errors made attempting to be helpful to the cause
†maybe some dwell on others flaws 🙁 but we should over look both the flaws & the dwelling - we’ve all have the burden of living with a life altering condition 🙁

Caio
Simon

Ruthy

Simon 🤣🤣 I swiped up and hit “No” 😄

Simon

I can’t see the poll I created now

Did someone delete it 😕 ![edit found it again - mines the only vote so far!!]

I think the original logo has merit AND The one you have created - a poll is IMHO ‘busy work’ without value. Just go with yr gut. Your doing the effort. IF someone else makes effort then they get to influnce/ decide. Those that don’t make effort can have an opinion but not a veto/ determination of outcome
3¾¢

Andrew

I shall assume that the poll is simply to see if we can this platform to work a poll, for I can’t see what we are voting on!

So I shall vote a “yes” to see if it works.

Andrew

Something has happened! And we can see the results so far, which will affect the voting itself.

Simon

Hmmm
I tried to edit the poll and now it says “deleted”
Hiding the result is an option but seems it can’t be changed after voting has started.
Changing seeing who has voted, voting for >1 option etc does seem changeable. So is setting a cut off date

Simon

Here is a new attempt

Adding a poll to a post

Hmmm added can’t see it

Andrew

Simon I can see it. Have to go to a meeting now, then a quick lunch, then an online meeting, well, two. Aaarghhh. So much to do.

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