I had a lumbar puncture which diagnosed the MFS, doctors still don’t know the cause… bacterial or viral.
I fully understand about the hand curling thing especially in the cold weather (not liking forward to another winter with this)
I’m waiting for a referral to a pain clinic, it’s been months now, I’ll keep struggling on til then.
Because the stroke clinic discharged me before these symptoms started, doctors have been focusing on my seizures & MFS but maybe the stroke is the issue.
bear in mind I know little about miller fischer Syndrome, other than it’s an auto-immune problem. My scenario is for the average stroke survivor. Spasticity sets in from almost the beginning, not so much after a year.
I have added them to the ever growing list of resources!! To put into a format that doesn’t I promise I’ll make some progress next day or two!! Just had a few bit on but have some time this weekend
Thnx
Yes Tara and their elyse were always on the list.
I’ve actually posted there YouTube account links several times here, I think together with several others .
Do you think the rest of the links actually have the value that justifies their being included if we include other links of each quote value would we then be just duplicating the whole of Google?
@KGB where have you added them? I don’t think you’re UK benefits thread should be the home of international physiotherapy resources, do you?
@SimonInEdinburgh I think the real science studies are valuable. yes. Many therapists for example, thought that strength training was bad for spasticity. This was wrong and the study explains. I usually trust University studies.
I am counting on strength to pull me out of spasticity & spasms. Right now, I can think of nothing better than strength… and stretching. Today, with the help of my physio, I made huge progress in understanding and managing my every other day knot in my glute. I need to further the exercises and stretch I was doing, but I feel I’m on the verge of a breakthrough. Also, today was the first time I was able to get on the floor which opens up a whole new series of possibilities with my stretches.
@pando Well good! if you can get on the floor, there is a lot of Buz about crawling as exercise for the hips, core, and all-round spasticity help. Tons of variations on youtube.
Best wishes.
Hi @pando
Some of the stuff I’ve used, particularly with getting my arm freed over a range has a pattern to exercise of staying at 80% of range to stretch then hold for 30+ seconds then try for 90% then 101% of capability momentarily
Hi Kevin,
When I arrived home from hospital I hadn’t responded well to physiotherapy. Due to covid, so they told me, sessions were random and infrequent. I had a pair of limbs on my right side that were pretty much inoperative. I couldn’t walk, I couldn’t use my hand or arm in any useful way. I was pretty much chair and bed bound. I was quite depressed though I kept that to myself. I had the impression that improvement was unlikely.
After a couple of months at home, four months after the stroke, I decided that this wan’t good enough. I started to try to get myself together, instead of waiting for the professionals to sort me out.
There have been ups and downs since that time but generally it has been a path towards improvement. I’m not by any means recovered. Much of the changes have been slight but I am now far more able than I was and my outlook has improved and is in a better direction. I think, having looked at what others have achieved, I am capable of much more yet.
Changes were not big in a short term, but over time I have become able to do things I thought impossible eighteen months ago. I have a wife who cares for me, letting me find my own way and a determination to not allow this to defeat me.
I’ve been noticing it over the last few days most pointedly, few months less pointedly and the last 18 months more diffusely .
I’m 3 years today Today TODAY !!
takes constant work though, which I really feel I’m not equal to but that doesn’t mean I do nothing and it certainly doesn’t mean I’ve given up the certainty of more capability being excuse the pun within my grasp…
but it could be valuable if we start putting our heads together in a concerted sort of way 
