Thank you for the information. Unfortunately, I am in the states, but anything I can find out about alternatives to medication I’m all ears for. I had a disappointing consultation regarding deep brain stimulation already, but am hoping to explore tms
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I received traditional Ot/pt, now mirror box therapy for the arm. I have movement but no improvement with ataxia and stiff rubber band feeling and pain.
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Thanks for your post, but sorry to hear that your recovery is not progressing as you wished. I am not sure why therapists are reluctant to touch the body they are treating. Your symptoms tells me that your issues are
- Spasticity or muscle stiffness
- Trunk muscle weakness (i.e proximal weakness) and I would not be surprised that when you walk you put more weight on the unaffected side
Therapists needs to work on your trunk muscle, apply massage and possibly use FES. Mirror therapy evidence is very weak and if it works, it works distally (on hand), I have never used - I am afraid based on your description it may not give you the result that you are looking for. I am seeing a pt privately, who had no movement in finger two months ago but now she is able to move her thumb and little finger now using the above principles, no pain - but this cannot be provided under NHS. Again, sorry to say this NHS is so stretched it is struggling to meet basic needs of the service users.
I feel helpless, but I hope my advice is making sense- at least I can provide people some ideas and that is why I joined this forum.
Wishing you all the best.
Take care
Kusal, Stroke Occupational Therapist
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Thank you for your input. Yes I do put more weight on one side, plus I have total range of motion in affected arm and hand-plus ataxia and terrible stiffness as you mentioned. I don’t think the mirror box therapy is helping that plus there seems to be nothing anyone can do for the horrible stiffness in my leg.
Thanks for your response.
I understand it is frustrating situation. I see this in everyday practice that spasticity is left unattended, but apprporpiate massage and weight bearing can change things. You need the right person to make the change happen- there is always hope.
I am not sure due to state and pressure on NHS whether any statutory services would me able to provide the support that you need? Have you been referred to spasticity clinic or orthtics clinic?
Wishing you all the best.
Kind regards
Kusal, Stroke OT
Your hand can be definitely treated - it would be slow but there is always hope.
Kind regards
Kusal
How do you suggest one overcomes spasticity?
Unfortunately, I am a US resident so it is my insurance that dictates the coverage. I cannot control my hand but it opens , and grips. I have what the Drs refer to as , thalimic stroke pain and it presents as a feeling of extreme rigidity, despite being able to bend, etc. The mirror box therapy is supposed to help with that(?). Honestly I have seen no progress with any of my pain or dexterity in the hand, but I can use it.
How long since your stroke @Mbhope ?
I’ve seen more progress in my hand in the last 3 weeks than the proceeding 6 months to a year. I’m 2 and 1/2 years in now and I’ve challenged my arm all day everyday for all that time .
At some point I guess about a year after the stroke I could lift my arm as far as my navel, fingers and thumb were completely immobile. The second & third finger are still resolutely refusing to play ball, the index and pinky are slow, short range, weak, but more or less bidable, thumb is doing better than the index and pinky, the wrist is about equal to the index in bidability. All are growing in capability but there are islands of intractability eg When attempting to combine movements for example wrist and finger movements that are necessary for appropriate dexterity like lifting a coffee cup and putting it back down. Elbow and shoulder and scapula mostly at something beginning to approximate pre-stroke.
In about the last 3 weeks I’ve managed to relax the arm when reaching out to pick something up or stroke the cat, certain reach and grips are beginning to feel natural. I noticed when I approached the banister on the stairs I’m still using a lot of shoulder rather than arm movement but I’m backing off and doing it again until I do it naturally - does make coming downstairs rather delayed but forever after next year hopefully it’ll be better and I will get the payback.
I’m thinking that learning to write right handed again is a definite prospect for the not too distant future. As of this week I can make a realistic approximation of cleaning the teeth right-handed not alls surfaces on both sides but I’m a hell of a lot further on with them that when I couldn’t do anything that approached even starting on them. I’m also now combing my hair everyday right handed, only if I’ve got really tangled knots do I have to give some left handed assistance
@Kusal still interested in anything you have to say about consciously practising the removal of spasticity. For example if I attempt to do wall push-ups I push off the wall to do some closed chain exercise of my arm then my fingers ball up into a fist ie I can’t put my hand flat on the wall and maintain it. I can put it flat with my left hand but as soon as I start the exercising it moves into a claw. I stop and reposition it. Does the ‘professionally educated’ have approaches to eliminating that effect?
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I am now 14 months out, can’t believe i am saying that and in this position. I have full range of motion but suffer from central post stroke/thalimic pain that makes me feel as if there is a tourniquet wrapped tightly around my whole left side even though I can move. That’s why I am not eligible for Botox, although the pt feels there is some some cogwheel spacstity -just not “velocity” dependent. I also suffer from extreme fatigue so I am pretty much only comfortable lying down despite not feeling this way for a good four months before the pain condition hit. Unfortunately this can be what happens when a lesion develops on your thalmus. I’m miserable 
.
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Thanks for your response.
One possible solution could be botox, I am not pretending that it would resolve all issues but can be helpful. I am not aware of US systems, hence, very difficult to comment on this. Thalamic stroke pain and spaticity symptoms can be overlapping - without physically examining you it is very difficult to give any definite answer. I feel for you though, it must be a very difficult situation. But I am glad to hear that your are finding UK forums useful.
Not sure if you can post any pictures of your hand (without face) in this forum?? That might give me some ideas, but I am clearly not sure about the forum rules and what might be possible.
Wishing you all the best.
Kind regards
Kusal, Stroke OT
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Dear Simon,
Thanks for your message and I glad to hear the progress that you are making. I am also very pleased to see that you have not given up, and you have very good understanding of what could be effect of stroke. Although, I am so called a educated professional , but to be honest I learnt nothing as part of my traning …I have learnt about treatment for stroke through experiments, youtube, books and numerous trainings, so unfortunately I cannot explain to you in technical terms. I can only explain in layman’s terms, my apologies in advance.
In my view, muscles are like spring, that can be stretched and contracted (under normal circumstances). After stroke, the stretching signal from brain becomes very limited and leads to muscle tightness/spasticity ( I am not differentiating between the two for simplicity). At this point muscle becomes something like a frozen (not actually in temp) tissue, and the two things that can make it supple once again is massage and botox (depending on progression of condition). Exercise and stretches on its own cannot achieve the above. This is my answer in relation to your question for ‘removal of spasticity’. In addition, to this all body muscle are connected in a ‘kinetic chain’ - so unless other muscles are treated it may be difficult to remove spasticity, e.g. my client today complained of shoulder pain, I practiced sit to stand from chair and pain resolved. You will have to take into considerartion the aspect of sensory changes as well.
I hope that this makes sense, please let me know if you have any questions.
Wishing you all the best.
Kind regards
Kusal, Stroke OT
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Thanks @Kusal for your reply
I note your comment/ confirmation
Which I think is indicative of the fact that there is some particular disconnect between learning and experience in the case of ABI / TBI. I think the profession would be healthier if all is practitioners embraced the idea that the clients have a whole axis of appreciation the professionals don’t have (here by professional I mean somebody who makes their living, not ‘is an authority on’)
I suspect that you’re outlook is a prerequisite for making a breakthrough in care and treatment. 
fingers crossed! The fact that you’re in this forum with your espoused purpose is also another indicator of an open and enquiring mind that is willing to set up side ‘received wisdom (inherited myopic falsehood’)
I’m aware of open and closed chain processes and therefore exercises. The moment one sees the body as a system one then recognises that any failure in its operation or subsequent intervention has outgoing (or incoming) ripple effects.
Unfortunately the NHS PT I’ve got until this week puts everything down to mechanical shortening, won’t listen to anything I say and is available for an hour every 12 weeks - laughable correction lamentable
My middle two fingers Will not extend although I can curl them into my fist. If I orientate my whole arm across my stomach towards my left side elbow then these 2 fingers come back out (The other two are more or less bidable). I think the whole operation of them is discretionary in this orientation. I think in other orientations the muscle to extend doesn’t receive a strong enough signal to overcome what I believe is inappropriate co-activation. Partly my evidence for that is that if my fingers are in contact with a surface they push harder and harder - I can only interpret that as involuntary muscle activation. I can’t do wall push-ups push-offs for example because my hand turned into a claw. I have been working at being able to place my hand flat and open on the right hand side of my face. Currently I can place it flat and open on the top of my head as I come down past my ear towards my chin so the fingers start to disobey, so especially my index finger. Although I did have a first with that today I can now flex it voluntarily at the second knuckle joint! :-).
I can see that the above does support a conclusion about muscles shooting shortening being a contributor but not 100% of the cause and none of the solution. It is a fact that in the twilight zone after waking up I can flex the wrist back and the fingers out straight,so the tendons and the muscle are capable of that extension and my conclusion is that the rest of the time I don’t have the discretionary muscle activation to actually make that happen
A continuous factor in my attempts to extend my wrist and hand capability is relaxation of other muscles including my foot, and shoulder including the scapula.
I think that could be a useful collaboration?
I dictated this to voice software so I expect it’s full of misheard misinterpreted typos but my wife is hassling me to get ready to go out for breakfast so I’m posting without error correcting!
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Thank you for your response. My hand looks normal as it opens, closes, etc, it’s just that i can’t control it, there i s pain stiffness and a cold feeling, plus it tremors. I do want to try Botox or quite simply anything that could help.
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Dear Simon, I believe in Bobath principles and the course changed my direction of treatment. You are correct in saying that you are unable to access your voluntary movement system, a part of the reason would be muscle stiffness, and likely other part would be postural/sensory deficits. You need to think more centrally i.e. bridging, peolvic tilt, foot massage, hamstring stretches, neck stretches would be precurosr to gaining access to the voluntary control system.
I hope this makes sense and also you enjoyed the breakfast.
Take care
Kusal, Stroke OT
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If you are in US try to contact Tara Tobias or someone like her and see what they say. I am only suggesting botox because based on your description that rings a bell. I have not seen your hand, hence, difficult to recommend anything wih 100% guarantee.
Wishing you all the best.
Kind regards
Kusal, Stroke OT
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Based on my experience id add dimension of time. At the end of the first year I thought I’ll have cracked it in a year’s time. Im two and a half years post and I’m just beginning to accelerate recovery of my hand and wrist.
within that acceleration there are islands of resistance that haven’t yet started to notice that everything around them is improving -so I would reframe your time scales for me, I don’t know whether you need to reframe the time scales because you’re a different body but it seems a reasonable suspicion
I’m not sure what perseverating is. Personally I do recommend persevering, Is prevaricating part of your portmanteau?
Yes I was scared about living with a completely useless hand. Mainly because I could not get any medical stuff to make any predictions or even the ranges that others have managed around whether I have any recovery at all.
Now I’m quite certain that bringing my right hand up to the level of dexterity I used to enjoy with the left hand is very possible. I have suspicions beyond that too. One of my goals has been to resume my calligraphy and I haven’t attempted to do that left handed because I didn’t want to encourage the learnt non use that comes about by substituting compensations. I’m now wondering about being ambidextrous in the future
I don’t know if this will talk to you. It’s an axiomatic model for me: I imagine two axes the X is capability running from 0 to 100%, The Y is time, the trace is the gain in capability over time and it is what classically called an S curve for cumulative capability or a bell curve for incremental capability. It looks like a Gaussian or normal distribution curve.
I think key aspects but not all currently just moving beyond the 20% cumulative to where the gradient is steepest. Even if I’m not correct it’s a good motivating mental image for me to hold.
So another factor of your reframing would be keeping a diary ( if you don’t ready) of your capability AND then look for the areas of change you get over the course of a month or quarter to prove to yourself that something is happening. If it’s degradation you’re not doing the right things if it’s improvement you are.
I’ve not kept a diary because I’ve told myself I am aware of My progress in the moment although I couldn’t now relate for you the journey and detail that I would have been able to but then for me that’s not important I can tell that I’m making progress
Last point: I think this year’s progress is standing on the shoulders of last year’s. So even when the progress tectonic You need to embrace it so that is the foundation for when it’s glacial. On when glacial embrace it because it is a foundation for when snail paced! Without tectonic there will be no snail
Hope this helps
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Thank you for your help. I think for me, now having more trouble with walking, plus the stiffness/pain and the ataxia in the arm I am quite fearful 14 months out whereas before I thought for sure I would improve. I am happy to hear that you continue to make improvement beyond that time frame.
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Hang in there
I struggled with excruciating shoulder pain that only started some months after my coming home from hospital. Couldn’t do any rehab for a few months. I get really debilitating pain in my big toe that comes and goes, fog got my head last week, and…
It’s all a patchwork of doing what you can when you can and slowly there is progress 
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