My Neurologist is arranging for me to have Balance Therapy…it’ll be interesting to see if these techniques are used.
Chaque annee le médecin de la médecine physique m’envoie faire un séjour d’un mois dans un centre de rééducation pour stimuler mon cerveau pour l’équilibre. C ´est vraiment bien car dans ces centre on s’occupe de tout , cela passe par la kiné pure pour l’équilibre 2x1h /j puis l’ergothérapie qui aide à la coordination et l’utilisation de matériel 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 psychothérapeute , l’orthophoniste, l’assistante sociale … pour chaque besoin perso , des suivis par un médecin spécialisé dans le domaine , des infirmières pour le suivi de votre hospitalisation , bref, ces centres sont présents dans beaucoup de régions .
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.
Vous êtes très chanceux de pouvoir être référé à ces établissements. Il n’est pas habituel de pouvoir en faire l’expérience aux États-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 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…
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.
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.
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 …
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 didn’t realise there were different types. Keep well.
I’m waiting for referral to Balance Therapy…I’m not sure which specific Physio is involved…Previously I was seen by NeuroPhysio for problems with dizziness.
Still waiting for appointment for neuro physio. I was told that ataxia doesn’t 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 myself…mine is generally in my legs and wakes me…I’ve been put on a waiting list (UK) for NeuroPhysio…and been told it’s likely to be 12mths
It was some years before I started experiencing pain…it reached the point where I thought it wasn’t going to happen…but it did
A Special Ataxia Nurse advised Paracetamol…but it didn’t 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 fortnight’s 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 ago…as it turned out it was a regular Physio My GP hadn’t been specific
Anyway, she checked my ‘range of motion’ and gave me exercises to improve my core. And…she referred me to a colleague who does Vestibular Therapy… I have an appointment next month🙂
I have heard good things about TENS machines, I haven’t yet tried one myself but it’s 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 veteran’s doctor is sending me creams for pain and I’m 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 haven’t tried Lidocaine patches.
I’ve had relief with high content CBD Oil…sublingually at night.
I use lidocaine patches occasionally. These days I’ve been using them on the top of my foot for a postoperative seroma, and it’s working wonderfully. I haven’t had any side effects from it. Obviously every individual needs to decide for themselves if they are comfortable with a medication or treatment, so I’m just sharing my own experience.
Sharon from ModSupport
Is there any taste using CBD oil?
Some aren’t unpleasant…they 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 …the taste
A drink of water afterwards helps🙂