Thank you I’ve just been looking at this videos and they are very good. Do you know if this will help with the neuro balance as well please? That’s where my balance issues appear to be stemming from. Tom is very easy and fun to watch
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And that’s where most stroke survivors balance issues stem from. As your brain heals and recovers so to will your balance. There’s a lot of brain retraining going on inside your head even as it’s recovering just now. And a biggest portion of stroke recovery comes from repetition to solidify those things our brain’s have relearnt. So yes, daily balance exercises will help with that.
I like a Tom’s stuff because he is lively and down to earth…and I love his accent 
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Hi Jacqui,
Thanks for your response.
I would try to lay out my rationale in the following way.
The Bexley Nuro Team is your local team (Bexley Neuro Rehabilitation Team | Bexley Care Services and Resources) - please consider requesting GP to refer you to the team and contact them about waiting times or can they prioritise your referral.
If long waiting time, private neuro physio’s can be found on Chartered Society of Phsyiotherapists (CSP) directory, the charges vary between £70-100+/hour, I know this is lot of monye but recovery happens best in the initial phase, hence, it is worth thinking about this route- please make sure you are looking for neuro physio.
Support video’s are good, but the challenges are your symptoms can have multiple cause - finding out the cause is absolutely important - that is where the professional help matters. The balance issues are likely to be secondary to limb weakness, are you feeling dizzy? How is your lying and standing BP? Any difference?
How is your leg coordination? A multitude factors can be here? You can follow a programme, but the question is that going to treat the cause?
If it is only coordination issue and if you are walking unaided- I would guess the chances are that you will have a good recovery, but again this is only a guess. Most of our clients recover within 6 weeks.
In summary, my advice is to find out what is the effect of stroke and then look for treatments. There is no guide that would give you information to DIY- that is the nature of stroke, it is very predictable but it is very difficult for me to say anything without an visual guidance. The forum rules are somewhat limiting, but I am trying my best ot guide you within the limitatons.
I hope this helps.
Kind regards
Kusal
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Thank you appreciate your help.
It’s a strange one when I’m walking I suddenly feel like I’m slipping on a banana skin and my arms flail about but my feet don’t actually move so it’s in my head.
I’ll keep working hard with mind and physical exercises and hope to get a referral in the meantime
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Dear Jacqui,
The cerebellar is responsible for adjusting our posture to maintain balance. It basically puts input from all senses together, and tells muscle how to adjust our posture. If this function is not working then as you move (normally our body adjusts our posture constantly to maintain stability) the body cannot adjust posture as required leading to loss of balance. Although the cerebellum accounts for approximately 10% of the brain’s volume, it contains over 50% of the total number of neurons in the brain, so you can guess that it plays a big role in coordination. The arms swing when we walk, but if you do not have coordinatiion of the arm then it gets harder to maintain balance. In addition, the feeling of banana makes me think that your senses are not quite processing the information it is getting. Are you getting any double vision?
I would suggest try walking bare foot, try to rub your feet on a rug or dip your feet in cold/lukewarm water (alternatively), if any one massage the foot this would improve circulation and sensory processing. The other factor to consider, if you are putting weight on both feet equally- if they are uneven actually physical exercises needs to be carried out with caution to make sure that stroke symptoms don’t increase. Rub your hand with fabrics with different texture as well. The Sesne programme that has been stated in other posts could be useful - one way put differnet objects in fornt of you and close your eye, see if you can differentiate between various objects?
These are some of things worth trying, I hope that this helps.
Let me know if you have any questions.
Kusal, Stroke Specialist OT
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Sorry, forgot to talk about emotional aspect. Along with controling motor (muscle) function, this part of the brain also control emotional aspects. So it is quite common to be tearful, but normally this improves with time. Although, I must state everyone is affected slightly differently.
Wishing you all the best.
Kusal, Stroke OT
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Thank you Kusal. It’s funny as when I walk bare foot the banana effect is reduced and happens less frequently then as soon as I have trainers or pumps on I start shuffling as feel really vulnerable and like it could happen at any time.
Your tips have been invaluable and in thank you from the bottom of my heart for taking your time to help me 
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Thanks Jacqui for your response, I feel like if I close my eye I can see what is happening here. It is so interesting, I wish I could have treated you. I think recovery would continue for you but professional help could make a big difference.
Wishing you all the best.
Kind regards
Kusal
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Shwmae and croeso, I have now lived with cerebellar stroke syndrome for almost three years. For me, it has been a challenging and disruptive time of my life, but I have also learned a lot and grown in ways I wouldn’t have imagined before stroke. Cerebellar strokes can affect the vestibular system (balance) and the oculomotor system (vision) and this becomes a cognitive visual-spatial issue. If you search cerebellar stroke on the forum you will find a good deal of information and dialogue. If you have any questions please feel free to post, no matter what they are.
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Thank you. 3 years wow I was hoping to be better in next couple of months. This is why posts like yours are so informative and I know everybody is different but good to have an idea this isn’t going to be a quick fix as pre-warned and all that. Have you managed to go back to work yet? This is my biggest worry as I have to drive about half hour to work
I thought I would be “fixed” in about six months and I foolishly pushed myself which is actually counterproductive to the brain healing, as during the first six months it is busy performing self-maintenance, after that plasticity slows down, steady and patient rehabilitation is required. Every stroke is different because our brains are all individually wired, so your rebuilding journey will be different from others, and I use the word rebuilding and not recovery, as just because we can’t see the injury it is still there. The dead matter is permanent, as a fracture in a bone may be or a scar on the skin. I didn’t necessarily need to return to work as such as I am an author and work for myself, and I rarely travelled before stroke being reclusive in nature.
Cerebellar stroke has a fairly high “recovery” rate as in returning to a state of “normality”, so you may be back and driving after you give yourself time to heal and the brain the opportunity to mend itself as best it can. Conceivably, I could drive as my issues are with bodily movement, and in a car I sit still. I drive our battered work vehicle around my property with no issues, and also drive my Kubota, and I was able to ride a bicycle three months after having had the stroke. So, positive thoughts and plenty of rest and self-care is the best place right now.
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Diolch @Loshy, I have been a little whacked about a bit. Summer started, and we had that heatwave. Things got terribly busy, I tried to step up to the plate, and found I was pushing myself too hard and expecting too much from myself. I started having behavioural mood swings, mainly, exasperation but also confusion and sometimes manic energy that often felt like it was leading to madness. In the interim, I was experiencing intense mental fatigue and persistent headaches. It’s taken some time, but I have finally adjusted my routine again. Thankfully for me, the cooler weather has quietened the activity around me a bit, and I can take stock.
I know my symptoms are improving but as they do, they present all new challenges. For instance, I can walk faster now but that is causing awful bouts of nausea. I did go for an hour and a half bicycle ride with my youngest son, off-road too, and I was quite proud of the achievement but had days of aching calf muscles. The ribs have fully healed, and with my new computer, I have finally got down to some serious writing. But my brain is still struggling with too much information, I can only really just focus on what is in front of my nose.
I hope you are doing okay. 
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You guys are amazing, I am learning so much from your stories that is validating my theory. Keep on doing the good work, you are all champions.
Kind regards
Kusal, Stroke OT
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@Rups sounds like you have had loads going on. Not surprised you’re a bit whacked.
The writing sounds exciting. Bet it’ll feel good to get back to it.
Take good care.
Ann
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Diolch yn fawr, I am pleased to be back writing, it has been a year at least, this work is a novella set against the backdrop of Agricola’s invasion of Anglesey (Mona), it’s part science-mythic fiction, but with the overall theme of the devastating result that war has on wildlife. Whenever I witness footage of modern warfare, I can’t help but think about how much fauna and flora is destroyed even by its most subdued footprint.
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Hi kusal just wanted to say I spoke to my doctor about neuro referral and finally got a call today for assessment. Rehab therapist be round in next week or so to see if anything in house can be done to make life easier and on list for home therapy which he said is 3-4 weeks long so finally feel like I’m going in right direction. Thanks again
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@jacquiwalters So much good advice in the posts from the others, I have come on to offer encouragement and strength, this is a positive constructive forum and I hope we can all give you a lift when you need it. This is a new way of living. I also worried about work and what way my life would go. But now I have to go with the flow because my wee brain rules the roost and I have had to slow down and wait for my body to heal. But we will all get there one step at a time .My GP sent me for counselling which is helping to see life differently now. My very best wishes.
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Hey yes absolutely my wee brain like yours seems to be massively dictating. Got picked up and taken for lunch today with an old friend and had a lovely time but was shattered by time I got home ( 3 hours:joy:) so need to slow my arse down and listen to my brain and body. She suggested a day out at seaside and I surprised myself by saying no I’m not up to that yet. Guess I’m getting used to the new me eh? Thank you for your kind message 
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@jacquiwalters great to have friends who support us and give us a change of scenery and encourage us to engage in life however it is super important to learn and accept our present limitations and not be afraid to express that as you have done. Its also about educating our friends and family about how this affects not only our bodies but the mental and emotional impact. I have found people have no idea of this side of it. How could they really unless they had the same experience. Onwards and upwards sometimes sideways lol. Best wishes
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Much love and stay in touch please 
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