joanne46 09/02/18
Last reply 2 months ago
Balance Rehab

Hi Everyone
I’m looking for some help/knowledge from anyone anywhere in the world really….I have recently been diagnosed with RRMS after being misdiagnosed for a couple of years as having an inner ear disorder because my symptoms mimic one. I have balance issues and minimal double vision when focusing in the distance as apparantkey I have a lesion in my balance nerve. On 20th November I was treated with lemtrada which knocked me for six but the last week or so I am starting to feel more like myself…however my balance is just not improving back to where it was an it is making me a virtual recluse…embarrassed to go out…I think I need extensive and daily balance rehab (whic I’m happy to pay for) but I don’t know where to start….my daughter gets married in June and I want to be confident attending and not worried about my balance….can anyone help with suggestions on where I could go that would specialise in balance retraining. Thank you xx

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cameron
2 months ago

A neuro physio would be a good starting place, but in today’s climate you may well not get it on the NHS. Hopefully your MS nurse could recommend someone, but if not, try ringing round the physio practices in your area to find a neuro physio specialist. At home, you could invest in a Wii-fit balance board and program. It’s a clever piece of kit – you stand on it while you do the balance exercises projected on your TV screen. It’s very safe because you don’t move your feet at all – and you could even hold on to a chair if you needed to. The exercises are different games, each with graphics and music. All light-hearted fun but each one working on a different aspect of balance. Other than that, Pilates and/or yoga are excellent. They each develop your core muscles, which in turn help your overall balance and, like the Wii, are safe to do – a lot of the workout is floor-based. Good luck, best wishes.


edmontonalberta
2 months ago

@joanne46

Have you tried Aquasize? Before I broke my hand in the hot tub, my wife & I used to go to the pool a couple of times a week. I would swim for a 1/2 hour while she & the Aquasizers would relax in the hot tub before the group exercise (then I had the hot tub to myself).

One woman would basically bounce in a lane – almost like a slow run. Then she would go quicker & quicker with her legs fairly far apart. She did not care what it looked like; she was doing it for herself… And being in a pool, there was no chance of falling over & hurting herself.

Just a thought…


joanne46
2 months ago

Hi @cameron
Thank you for your reply. I have recently gone back to pilates and started Yoga only this week, I also own a balance board but I confess I havent used it! I suppose my worry is that it just won’t improve because It’s ms…am I fighting a losing battle…or us it just going to take a long long time 😥


joanne46
2 months ago

Hi @edmontonalberta
Thank you…i have been told by a lot of people to try swimming… I probably need to persevere a bit more and keep at it!
Keep up the positive attitude 👍


cameron
2 months ago

It sounds as though you need a professional (i.e. a neuro physio) to pinpoint your areas of weakness and give you specific advice and exercises. If you had a few sessions, the physio could also track your progress. There may be other issues with your MS that are contributing to the problem. I know one of the things I had to work on was propriaception – spatial awareness that was affected by the MS but which did improve. I also needed a lot of work to strengthen hip flexors because these weak muscles were causing me to overbalance and fall. But never give up! Improvements will happen but it takes a lot of time to retrain the brain. xx


cameron
2 months ago

@edmontonalberta – in the UK we know it as hydrotherapy. I’ve been going to our local hydro pool every week almost since diagnosis. Just wonderful to get into really warm water and get pulled about and stretched by the physio. As you say, it’s the one place where there’s no danger of falling! x


joanne46
2 months ago

Hi Cameron thanks again….I do see a Neuro physiotherapist privately who is a great help but seems to think my balance issues are very minor (thinks I’m 90% there) and that it’s just my confidence as she thinks my walking is almost perfect….but it’s when I’m out in public that my balance gets worse! Maybe I need more patience and perseverance x


londonlad
2 months ago

@joanne46

i think the advice already given is great. i too had a private near physio – just for a couple of sessions – but he took pics of me doing all the exercises and i just did them everyday and over time with that and walking as much as i could things improved..
it took me a long long time (but improvements were noticeable throughout the journey), but I’m almost back to normal now balance wise so it can better.

as well as working the legs and hips, i would also work on your core strength. using your abs when you walk or balance is important. if you can practice balancing on one leg, ensure you use your core to really give you the balance.

i can relate to going out into the public.. for me as soon as i went somewhere busy noisy,, i would feel off balanced and get put off. but persevere, slowly and safely.. push yourself but not to point it becomes stressful.
After a while, it became obvious that my balance wasn’t as bad as i thought, and once i relaxed i didn’t feel as overwhelmed and that made me feel more balanced.

Sorry for the waffle. but best of luck with things


joanne46
2 months ago

@londonlad
Thank you so so much for that! It had given me hope which is just what I need right now. I will keep going and as soon as this awful weather subsides I will get out there and walk. Thank you again x

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