My Neurologist is arranging for me to have Balance TherapyâŠitâll be interesting to see if these techniques are used.
Chaque annee le mĂ©decin de la mĂ©decine physique mâenvoie faire un sĂ©jour dâun mois dans un centre de rĂ©Ă©ducation pour stimuler mon cerveau pour lâĂ©quilibre. C ÂŽest vraiment bien car dans ces centre on sâoccupe de tout , cela passe par la kinĂ© pure pour lâĂ©quilibre 2x1h /j puis lâergothĂ©rapie qui aide Ă la coordination et lâutilisation de matĂ©riel 1h/j , de lâAPA pour un renfort musculaire et lâendurance 1h/j , de la piscine 3/4h/j , vous avez des tas de professionnel comme le psychothĂ©rapeute , lâorthophoniste, lâassistante 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 .
Via google translate
Every year the doctor of physical medicine sends me for a monthâs stay in a rehabilitation center to stimulate my brain for balance. Itâs 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.
Vous ĂȘtes trĂšs chanceux de pouvoir ĂȘtre rĂ©fĂ©rĂ© Ă ces Ă©tablissements. Il nâest pas habituel de pouvoir en faire lâexpĂ©rience aux Ătats-Unis ou au Royaume-Uni.
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.
Wish we had that here.
I wish we did tooâŠit sounds wonderful.
I had a review appointment last weekâŠand was told âweâll contact your GP regarding referral for Balance Therapyâ. To be honest I donât expect to be having this anytime soonâŠ
I wonderâŠdo we expect too much from the NHSâŠ
Should we pay for this sort of therapy ourselvesâŠ
Your lucky youâve had a review appointment, Iâve not seen anyone about my ataxia for years, now appointments are hopefully opening up again I will try to see someone.
I was diagnosed shortly before Newcastle Ataxia Centre was openedâŠand after all the hype associated with this, I had high hopes of âsomethingâ being done about ataxia. Initially Iâd had minimal testing linked to my specific symptoms, and these tests were negative.
ButâŠthe Ataxia Centre was only operational for 2-3 yrsâŠapparently there wasnât sufficient demand to fund Specialist Neurologists. The Neurologists we did have relocated to do research.
While it was openâŠI donated DNA for a local research project, and a link was made with SYNE1âŠso I was hopeful of a diagnosis. But my Neurologist dismissed it because it wasnât 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 didnât help.
Since then, Iâve had yearly reviewsâŠuntil now. My next review is in 18mths.
Iâm a member of my local area Ataxia Support Group, and some time ago âŠpeople 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 didnât need monitoring. These people were told to liaise with their GP re any problems, and they could get referral if anything new cropped up.
It is worth keeping in touch for reviews when exact diagnosis is in questionâŠYou just never know when new research can give information, even if it relates to therapy of some sort âŠ
I have just returned from review with my consultant who has confirmed that I have Late Onset Ataxia. She is going to arrange Neuro Physio for me. I have previously had Orthopaedic Physio and didnât realise there were different 
types. Keep well.
Iâm waiting for referral to Balance TherapyâŠIâm not sure which specific Physio is involvedâŠPreviously I was seen by NeuroPhysio for problems with dizziness.
Still waiting for appointment for neuro physio. I was told that ataxia doesnât cause pain. Surely the quite severe back ache I experience after attempting jobs involving stretching and bending must be caused by trying to maintain my balance and must be contributing to the pain? Any thoughts please.
I have pain myselfâŠmine is generally in my legs and wakes meâŠIâve been put on a waiting list (UK) for NeuroPhysioâŠand been told itâs likely to be 12mths
It was some years before I started experiencing painâŠit reached the point where I thought it wasnât going to happenâŠbut it did
A Special Ataxia Nurse advised ParacetamolâŠbut it didnât help, and too much can lead to constipation.
Unfortunately, I have to agree with your thoughts. My right side and knee are killing me when I walk. After years of Ataxia, I think that Arthritis is affecting those areas. My gait and balance have changed so much that bones are feeling it. 
Hi Beryl .
Just had a phone call from physio. I have an appointment for the neuro physio we are both waiting for in a fortnightâs time! For the back pains I get I have
recently purchased a TENS machine - after checking with GP. So far it is certainly helping.
My appointment came through a few weeks agoâŠas it turned out it was a regular Physio 
My GP hadnât been specific 
Anyway, she checked my ârange of motionâ and gave me exercises to improve my core. AndâŠshe referred me to a colleague who does Vestibular Therapy⊠I have an appointment next monthđ
I have heard good things about TENS machines, I havenât yet tried one myself but itâs something to bear in mind
Now the bones and adjoining areas are not just feeling it but are killing me with pain when I walk or move. My veteranâs doctor is sending me creams for pain and Iâm waiting for lidocaine patches to be sent to me. From what I read the side effects can possibly be not much fun. Anyone familiar with the patches? 
I empathise with pain. I havenât tried Lidocaine patches.
Iâve had relief with high content CBD OilâŠsublingually at night.
I use lidocaine patches occasionally. These days Iâve been using them on the top of my foot for a postoperative seroma, and itâs working wonderfully. I havenât had any side effects from it. Obviously every individual needs to decide for themselves if they are comfortable with a medication or treatment, so Iâm just sharing my own experience.
Sharon from ModSupport
Is there any taste using CBD oil?
Some arenât unpleasantâŠthey are palatable, depending on the brand.
I used the same UK brand for several months, and then on a whim changed to a different UK brand It still gives good results but âŠthe taste
A drink of water afterwards helpsđ