Balance clinic

[golfingsue]

After reading article in the mail news paper from professor rea in Leicester .All about balance problems to do with the inner ear.and things he can do to help.has anyone try ed a balance clinic with ataxia. If so did it help.i am thinking of going privately as the waiting list is months on NHS

[wildstyler]

I stand on a a balance ball on one leg for thirty seconds each leg.

It is your core strength that you will need to build up. Another way is riding my bike.

Good luck.

[nicanna in reply to wildstyler]

I use an exercise bike daily and not only does it help my balance massively, I'm getting my fitness in too!!! Muscle strength is so important because I do still stumble but I can regain my composure hahaha!

I've not heard of a balance ball?? I do attend physio and my therapist is working on my standing on one foot and I'm finding it so hard. Obviously this affects my walking. Has the balance ball helped you?? She said my core strength and posture is really good. My mission is to be able to just stand on one leg. Not much to ask is it?!!!

[wildstyler in reply to nicanna]

If you join a gym or ask your physio they will tell you what a balance ball is , although I manage to stand on one leg, I don't claim to be good at it, and when I ride my bike it is only on the canal two path and I would be lying if I said it was in a straight line.

Although you won't stop the progression of Ataxia , you will significantly slow it down. I was diagnosed about eight years ago, and I am still able to attend the gym three times a week and ride my bike twice a week.

You might have to alter what you do ,but you don't have to stop it.

I will be seventy in August and I refuse to give up just yet.

My speech is slurred, but nobody ever listened to me anyway.

[nicanna in reply to wildstyler]

Hi, thanks for that! My speech used to be slurred but it only slurs slightly now when I get tired.

I am holding on to the hope that the B12 injections I get now will continue to help improvement. I've only just turned 41 and I aint giving up hope, and trying everything I can to improve on whatever this is.

[wildstyler in reply to nicanna]

What are b 12 injections ?

[nicanna in reply to wildstyler]

My neurologist checked my bloods and I was critically low in B12. I was initially given an injection every other day, and now every 10 weeks. I can really feel the difference in myself! With that and the exercise I do I do still stumble, but, touch wood no falls!! I am sure your doctor would have checked your levels too, but you could ask them if unsure.

[wildstyler in reply to nicanna]

Thanks for that.

It seems (apart from ataxia ) that everything is ok with me, having said that I'll probably fall off my bike tomorrow.

[Marz in reply to wildstyler]

You are legally entitled to have copies of all your test results so you can check to see if B12 was tested. Result good over 500.

[Marz in reply to nicanna]

They often do check levels but declare all is well if in range . A level of 500 plus is needed to prevent neurological damage. I know you are aware - just posting for others reading 😊

[CarerNeil in reply to wildstyler]

Re. your speech. My wife went to speech therapy when her MS (now MS & Ataxia) was first diagnosed. She benefited enormously, but slowly. Part of the problem was loss of confidence & the consequent reluctance to talk to strangers. Now, she'll even answer the phone blindly, on occasion. The speech therapy really helped, but more importantly, the daily exercises they left her with maintain her speech. This was proved when we were recently on a 4 week cruise. I noticed her speech was deteriorating, and discovered that she'd stopped her exercises. Suitably chastised, she started again, and within a few days, she was back up to speed. Her speech is not perfect, but usually gets her point across. Don't ask me about the exercises, but it appears to involve blowing through a straw into a bottle of water & making certain noises. Worth looking into! Best of luck.

[wobblybee]

🙂 I’m diagnosed with Benign Paroxysmal Positioning Vertigo (BPPV) which is an inner ear condition. Therapy for this helped to some degree but didn’t alter my basic balance issue. The therapy was given by a Neurophysiotherapist, but I’ve never tried a Balance Clinic. For anyone recently diagnosed, or having mild ataxia, I think a Balance Clinic would be a good place to increase stamina and build up confidence. 🙂 xBeryl

[FFNick]

Thanx for the ideas. Balance on one leg is okay but surface is nearly always horizontal. Getting ankle on a slope requires trip to gym. No longer cycle.

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I saw an ENT who specialises in balance recently and am going to have a full battery of vestibular testing and vestibular rehab to help my balance hopefully.

My physio and the neuro say the problem for me is causes by neuropathy and overthinking because my Ataxia is apparently mild. The ENT disagrees and said he felt the problem went beyond this because, after 5 years of neuropathy (due to autoimmune disease, Sjögren’s) my brain would have adapted to help my gait.

I do definitely have a vestibular problem because I get vertigo when I turn my head and over hear despite hearing loss and tinnitus. He says the vestibular testing will show whether this is peripheral (ie inner or middle ears) or central ie cerebellar.

I can’t stand for any length of time due to shaky/ tremor legs but I can walk quite a long way even though my gait becomes odder the further I go as I tire. The problem for me is turning my head to look for cars or stopping to talk or look at something or wait. My foot drop is habitual I think or due to muscle wastage. Physio disagrees and I’m waiting for neuro physio input. I think I’m just very off kilter or the disease and neuropathy have thrown my balance significantly. Hopefully I will regain it in time.