Hi all,
I will have my 5th anniversary of an Ischemic Stroke this August.
I am still unable to walk. I have strength in my legs. However my balance is affected (Ataxia).
I have a weekly physio session and parallel bars (which I work on daily).
I have referred to my medical team and just wondered whether anyone else suffers from Ataxia and whether they were able to walk again?
Also any tips?
Thanks
Eamonn
Well I guess (almost) all of us suffer ataxia of one down or another.
There are many posts describing folks journey to get back muscle control - maybe try searching with the magnifying glass for the sorts of challenges you face?
You havenāt said much on what deficits your battling - balance? Feeling ? Proprioception? Foot drop?. There are also lots of YouTube videos & references to the channels EG Elyse, Tara et al who talk a lot about balance, leg strengthening etc. the SA online activities does a group exercise a class based on the videos in the forum menus under āgreen groupā and I think amber and red - red is for seated exercise so I donāt know how much balance there is in it but your can cherry pick which ones to focus on
Caio
Simon
Did you do (or start) any A levels / a degree?
Hi Simon,
Thanks for the great advice.
I will use the magnifying glass, YouTube videos and look into the exercise classes.
Luckily I donāt suffer Foot Drop. I have feeling, however my Stroke took away most of my Cerebellum which affected my balance.
No I havenāt found a course yet. The need is definitely still there. However I think I was trying to do too much.
Thanks
Eamonn
I came home from hospital unable to walk. Bed bound.
After a few months and listening to someone on this forum I splashed out on a rollator. It is this sort of thing.
I didnāt suddenly walk for miles but as I could stand, holding onto the handles let me take a step or two away from my bed, then sit, rest and return.
The availability of a seat made the process easy to control. Eventually I could get as far as the kitchen, make a brew and transport it back on the seat.
==
So I would say first aim to be able to stand upright. You can hang onto something, no problem, as long as you are able to stay up. Any time you feel rocky stop and just stand.
Next get one of these rollator things with a seat. Practice taking a step or two then resting. Be kind to yourself. Slow and steady wins the race. Holding onto the handle bars I was able to watch the action of my feet and legs. It helped me get used to the process and improved my confidence
Next when I was a bit less wobbly I started to use a walking stick. I can manage without it now but still use it fairly regularly. None of this happened instantly, just be pleased with any small improvement.
Just one last tip. When you are standing keep your nose in front of your toes, it rhymes and helps with balance too.
Oh, and the professionals were very negative about striking out like this. They donāt want to be held responsible for any falls, I suppose.
Well falls did occur, but I wasnāt looking for someone to blame, in fact I was pleased to be making progress and the occasional sore elbow or bum was small price to pay for the increase in confidence and sense of achievement that I gained.
Keep on keepinā on
Re-reading what you have to say, I am sure you have the strength, the determination, to succeed, it makes me sure that you will make progress.
It is worth making the effort but remember that having a day off might be just what you need. Strive and rest. Be kind to yourself, be patient. Be brave.
My experience has taught me that that what is possible is greater than I had believed. It is only when looking back that I realise slowly, slowly there is worthwhile improvement and It hasnāt always come with a great struggle.
I believe that simply keeping trying you will get results. It might not be instantaneous but things will move forward.
Yes, hi there, that would play havoc with balance,
Bach-y-Rita managed to get a lady with no balance to stand and walk unaided. Thanks to plasticity of the brain, her brain found alternative pathways to enable her to bypass the vestibular system (using sensory substitution). You may know the story, and it may not be applicable, but it may.
Good luck, Roland
Thanks for this Roland,
No I donāt know the story and sounds very applicable to my situation.
Best Wishes
Eamonn
Thanks for suggesting this Bobbi,
Do you mind me asking what company you used for the rollator?
I agree that medical staff are worried about the falls. Though Iām not.
Great tips!
Best Wishes
Eamonn
Hi Eamonn,
I read about this story in a book called āStroke Survivorā by Andy McCann about half way through.
Good luck, we all need it, ciao, Roland
The company I used was careco
they do quite big discounts on a regular basis. I think there are Spring offers right now.
I have a meal shouting for me so for now I must leave it at that.
Thanks for this Bobbi.
Thanks for this Roland.
Eamonn,
Please forgive me I got it wrong. The Bach-y-Rita stories were in the book āThe Brain that changes itselfā by Norman Doidgeā¦ There are many stories about this scientist, including one about his Father. Have a good read,
ciao, Roland
No problem and thanks again Roland.
Hi Eamonn,
so what records do you collect? Iām into classical and some jazz on vinyl
what instrument do you play ? I used to be a performing violinist, now I teach
hope the Bach-y-Rita stories gave you some kind of a lead
Ciao, Roland
Hi Roland,
Very helpful thanks.
At school I played the Cornet and pre-Stroke the Drums.
My Vinyl collection is mainly Rock. Not really into Classical, however getting more into Jazz.
Ranging from Charlie Parker to Sons Of Kemet.
I also love live music.
Great that you teach music. Do you have a big collection?
Although I also stream I love the physical products.
Cheers
Eamonn
hI Eamonn,
yes, I love vinyl. I used to have a great collection. Then I gave 75% especially because I had bought the CD version. Then I discovered that Vinyl sounds smoother than edgy CDs and went back to vinyl. Letās say 75% is classical, but thereās Motown, Jazz, Easy-listening, Film soundtracks and moreā¦ I might have close to 1000 LPs now. Oh and I bought back the records I gave awayā¦
What about your collection?
ciao, Roland
Hi Roland,
Loads of people gave away their vinyl collection. I gave away a few but thankfully not the majority. Though I used to also collect CDs and gave them all away to charity.
I agree vinyl sounds so much better. Like you I have about a 1000 now. My poor wife 
I have mainly rock records ranging from classic rock to Heavy Metal. Also have a few film soundtracks chucked in.
A great hobby!
Best Wishes
Eamonn
my balance was so so after my stroke but Iāve learned that if im going to be out for any time i take a crutch , i start getting wobbly after a while through tiredness . i tried a stick but can rest easier on the crutch
