Regaining movement improved by improved sense of touch

this is worth wathching

at 2x sped it takes less than 4 mins
i think having watched most folk could adapt to being a kitchen-table type ex or just a principle to lived experience opportunities


I echo Simon’s @SimonInEdinburgh suggestion that this Sense approach is worth trying if you have any sensation imparements.

This approach was recommended to me by the OT who came during the 6 weeks post discharge and is the corner stone of the sensation retraining exercise programme that I have developed (and continue to refine) for myself.

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Hi buggerall @llareggub
Maybe we could discuss/ share/ co-develop our exercise exploration activities, and we might ask somebody like @Kusal to join in and that way maybe we’d evolve our own usage and create something as useful for other folk ?

I don’t have the central stroke pain challenges nor do I have the loss of sensation challenges that you do. I do have a very analytical and observational approach to my own recovery due to the low levels of competence and access to, and willingness to listen and communication skills of what have been laughingly called therapists that the NHS has proposed meets obligations to repay my taxes.
From what I’ve seen of my your posts you might bring similar from your needs. Our dissimilarities and similarities might describe something that was useful to others to amplify and adapt and adopt?

Just an idea…

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Hi @SimonInEdinburgh ,
Whilst I wholly agree that the support that most of us receive from the NHS is certainly less than we need I do have some sympathy as the one thing that I have learnt, from both this forum and general research, is that each of us have such diverse symptoms and thus rehabilitation needs. Therefore trying to provide a service that covers such a broad spectrum is nigh on impossible.

It certainly sounds like we have similar approaches to developing our own recovery programmes that probably stems from us both comming from an engineering background and thus we both view the body as simply a machine/system comprised of hardware and software that can be debugged/fault found and then repaired/patched.

Whilst I have tried to capture in my posts what is working (or not) for me so that people can try, and disregard if appropriate, I recognise that any successes/failures in how my approach is helping me may be completely different for someone else.

I initially joined the forum searching for hints and tips on developing my programme (and obviously stayed for the sense of camaradare and everyone’s support) and was rather disappointed that there is no obvious section for people to post their experiences of what worked, or not, for particular symptoms.

I know that there are many on here, some of whom I’ve been in comms with, that would willingly contribute if there were a framework in place to post.

I would love to help develop such a framework however I’m due to re-start work, on a gradual ramp up, on Monday so time is going to be a bit tight for me but happy to contribute/post if there were a framework.

Take care

Rich C.

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I have suggested to @AshleyTH that we should have a rehab subcategory.

I agree that the diversity of needs is inexhaustible. But the core is common.
I’ve been struck with the need to describe this difference before: If I buy washing machine or a microwave It comes with 50 programs of which I use maybe 3. my next door neighbour maybe uses three one of which 1 overlaps with my choices. When we consider the whole street all my neighbours they might have used 12 in total and only one or two are in common to all of us. The manufacturer includes the other 38 to capture the largest market share, not because anyone consumer needs them all

I’m not proposing that we try and produce something that covers every eventuality - I will leave that to the health professions.
I’m just suggesting that we could identify what’s common to our two approaches and what’s different and individually obvious and worth combining or adopting and seeing whether that constitutes a core around which the variations can be woven.

I don’t think that’s the medical profession are ignorant of a viable approach but I think something gets lost in translation between their instructor and themselves and then themselves and their clients. For example I haven’t seen an ot or PT’s who have mapped an exercise program that was both integrated into daily living and progressive as my capability boundary flexed and moved . Equally I can’t believe that they are not made aware of that as reality. If they know it’s a reality why did none of them provide something that was equal to that challenge?

It’s imponderable to me!
I’m just wondering whether in 500 or 1,000 words or worst case 5000 words or pictures or whatever we might be able to set direction that others could use

Great news that you’re returning to work :slight_smile: my very best wishes for your progress! Do watch out for the fatigue that folks often report is the challenge.
What industry & roll you do you have?

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Hi @SimonInEdinburgh ,
many thanks for your good wishes.

I work in the comms/cyber arena, mainly for military defence customers (UK and other friendly MoDs and a fair bit for NATO laterly).

Whilst starting, with Plessey back in the mid 80s, as an apprentice electronics engineer I’ve undertaken a lot of engineering/production mnagement roles around the UK and abroad, alongside formal education up to masters level, and have been running major programmes for many years (I was the PM for the NATO NCIRC programme for example - about the only project that is in the public domain).

At the time of my “brain fart” I was just completing another multinational major project for NATO covering everything from designing/erecting buildings and their infrastructure through to cutting edge comms kit with a few hundred people involved (so at least now I could probably order concrete, cranes and toilets in 5 different languages :joy:).

Just before my “event” I was however looking to change roles away from PM at the end of the, then, current project as I had had enough of both the intensity of the role on a day to day basis (with the inevitable demands of both external and internal stakeholders in parallel to managing a team to get the project done) and the overseas travel (which sounds glamourous but gets very old very quickly and after a couple of decades just gets to be a PITA and left me with little decent time at home) so Monday will be a new start in many ways as I take on a new role in a more central business/commercial area.

I’m going to keep an eye on the fatigue (as I know both my wife and boss will) and if it gets too much then I’ll just ease back and take it from there. The business has been very good so far and I know that they will continue to support me.

I still plan to be on here daily(ish) though, even if it’s just to check-in on new/unread, so you’ve not got rid of me yet :grin:

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Ok :slight_smile:
I know about the travel I have seen a lot of hotels in Europe and Saudi and in fact other places in the middle East. Since the end of the last century and through this one till lockdown. From two passports to none!
I’ve run a couple of training courses for the guys in Cheltenham and I’ve done quite a lot with the folks who build warships and submarines and jet fighters and things as well as a few oil and gas companies although I started my time in mainframe IT. If you are x-plessy you might know the guys in tollcross who were ferranti originally and then finmechanica and I’m not sure they are now but somebody else has the name above the door. they do the same stuff mostly radar.

It’s possible if you are on LinkedIn we are actually linked but that’s a bit of a leap - odds on that were only one or two degrees apart though.

Once again best wishes for next week

If the guys at tollcross were Finmeccanica then they’ll now be Leonardo (as am I) along with the guys at Crewe Toll.

Used to do Saudi fairly often, on the other passport :grin:, but usually stayed on the BAE Systems compound (was working for them then as although I’ve got 38 years continuous service I’ve actually been employed by loads of businesses due to the ongoing acquisition and sale environment in the defence arena).

As for Linkedin, not on that or anything except a couple of forums mainly due to the years in cyber and knowing about what the guys in Cheltenham do :joy:

As for degrees of seperation, totally agree that we’re not far apart. May even have walked past each other in the round building.

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Yeah you’re right It’s not toll cross it’s crew toll
And yeah I stayed hundreds of nights well 100 plus on salwa garden village. I’ve still got some of the beer tokens for the bars in the study upstairs
Won’t have walk past you in the round building as I was worked off site down there.
Small world as they say…

Dear All,

Simon - thanks for including me in this discussion. SENSe training is a good resource. I attended yearly UL training at UCLH on Thursday and Friday, and they use it in their clinic. I am glad that you guys are develpoing your own programme to promote your recovery- it is a great example of how one can become master of their own destiny. This is what I am interested in learning from you, and that is why I have joined this forum. For the past 7 years I have learnt what has made sense to me, it is really frustrating that there is no definite guide to how to rehab after stroke. I have put my understanding from different books and trainings together to come up with a model. However, professionals ffinds my model difficult to understand as this is quite different to what they are used to. Normally people assess the touch and proprioception but my model works at the integration level (higher level sensation). I want to share this with stroke survivors that is why I joined here. I also make it clear in my posts that I am a Stroke OT, to highlight that I have not expereinced stroke personally but I have the theoretical knowledge which I try to use to explain things in a sensible way. Now I am mindful of the fact I writing a lot without explaning what is it.

Here is an example - if you have been given putty for exercise, make the ball and sausage with your eyes closed, so that you are relying on tactile senses instead of vision - this can help you to deal with sensory and motor impairment at the same time.

Siomon I hope that I have made sense - if not let me know.

If you have any question just let me know and I would try to find a way that you might be helpful to you. Please bear in mind my main treatment tool is my eye and hand (for touching) which I cannot use here. Hence, there is a possibility that my suggestions may not work 100%.

Wishing you all the best.

Kind regards

Kusal, Stroke OT

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@SimonInEdinburgh I found a couple of those tokens when I was clearing out my desk when Covid hit and we were all dispatched home to work. I recall that they used to pass a few of them out to regulars when you booked into the “hotel” although the home made muck that was served at the Sundowner meant that I always had a few left at the end of a trip that would normally be passed on to the ex-pat guys I knew. Happy days

Yeah I’ve got them left because I only visited the pubs once or twice at the beginning and never went back again.
I used to treat my periods there as a dry period.

Im told the airforce guys had real stuff and I did go to the Aussie embassy in the DQ once where there was real Aussie wines

All nostalgia now