Improve your balance

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:slightly_smiling_face: My Neurologist is arranging for me to have Balance Therapy
it’ll be interesting to see if these techniques are used.

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Chaque annee le mĂ©decin de la mĂ©decine physique m’envoie faire un sĂ©jour d’un mois dans un centre de rĂ©Ă©ducation pour stimuler mon cerveau pour l’équilibre. C ÂŽest vraiment bien car dans ces centre on s’occupe de tout , cela passe par la kinĂ© pure pour l’équilibre 2x1h /j puis l’ergothĂ©rapie qui aide Ă  la coordination et l’utilisation de matĂ©riel 1h/j , de l’APA pour un renfort musculaire et l’endurance 1h/j , de la piscine 3/4h/j , vous avez des tas de professionnel comme le psychothĂ©rapeute , l’orthophoniste, l’assistante sociale 
 pour chaque besoin perso , des suivis par un mĂ©decin spĂ©cialisĂ© dans le domaine , des infirmiĂšres pour le suivi de votre hospitalisation , bref, ces centres sont prĂ©sents dans beaucoup de rĂ©gions .

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:slightly_smiling_face: Via google translate

Every year the doctor of physical medicine sends me for a month’s stay in a rehabilitation center to stimulate my brain for balance. It’s really good because in these centers we take care of everything, it goes through pure physiotherapy for balance 2x1h/d then occupational therapy which helps with coordination and the use of equipment 1h/d, 'APA for muscle reinforcement and endurance 1h/d, swimming pool 3/4h/d, you have lots of professionals such as the psychotherapist, the speech therapist, the social worker
 for each personal need, follow-ups by a doctor specializing in the field, nurses to monitor your hospitalization, in short, these centers are present in many regions.

:slightly_smiling_face: Vous ĂȘtes trĂšs chanceux de pouvoir ĂȘtre rĂ©fĂ©rĂ© Ă  ces Ă©tablissements. Il n’est pas habituel de pouvoir en faire l’expĂ©rience aux États-Unis ou au Royaume-Uni.

:slightly_smiling_face: Via google translate

You are very fortunate to be able to be referred to these establishments. It is not usual to be able to experience this in the United States or the United Kingdom.

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Wish we had that here.

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:slightly_smiling_face: I wish we did too
it sounds wonderful.
I had a review appointment last week
and was told ‘we’ll contact your GP regarding referral for Balance Therapy’. To be honest I don’t expect to be having this anytime soon

I wonder
do we expect too much from the NHS

:thinking: Should we pay for this sort of therapy ourselves


Your lucky you’ve had a review appointment, I’ve not seen anyone about my ataxia for years, now appointments are hopefully opening up again I will try to see someone.

:slightly_smiling_face: I was diagnosed shortly before Newcastle Ataxia Centre was opened
and after all the hype associated with this, I had high hopes of ‘something’ being done about ataxia. Initially I’d had minimal testing linked to my specific symptoms, and these tests were negative.

But
the Ataxia Centre was only operational for 2-3 yrs
apparently there wasn’t sufficient demand to fund Specialist Neurologists. The Neurologists we did have relocated to do research.
While it was open
I donated DNA for a local research project, and a link was made with SYNE1
so I was hopeful of a diagnosis. But my Neurologist dismissed it because it wasn’t 100%.

I was fortunate one of the Neurologists referred me to Queen Square in London, where I had testing for CANVAS (Cerebellar Ataxia with Neuropathy and Vestibular Areflexia Syndrome) but it was was negative. And I had further testing to confirm I had BPPV (Benign Paroxysmal Posterior Vertigo). Positional therapy for this didn’t help.

Since then, I’ve had yearly reviews
until now. My next review is in 18mths.

I’m a member of my local area Ataxia Support Group, and some time ago 
people had been told they would no longer be given review appointments. This was the case for those diagnosed with known Ataxias (such as older people with SCA6) where progression was well established and didn’t need monitoring. These people were told to liaise with their GP re any problems, and they could get referral if anything new cropped up.

:slightly_smiling_face: It is worth keeping in touch for reviews when exact diagnosis is in question
You just never know when new research can give information, even if it relates to therapy of some sort 


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