Neurological physiotherapist

[tedjohnson]

Has anyone had treatment from a neurological physiotherapist and if so have they found it helpful?

There is one advertised near my home and they do home visits which would be most convenient

I have had general body massage which was very good but didn't help with my mussy heads or dizziness

I would be very interested in fellow ataxians experiences

Best wishes. Ted

[wobblybee]

Hi Ted😊

I had therapy from a Neurophysio for vestibular problems, and BPPV ( a particular type of dizziness), not your average ataxia dizziness.

I don't know of anything that clears that awful 'mussy/foggy head'. I've seen posts online from lots of people who complain about the same thing 🙂xB

[Hidden]

I have had treatment from a Neurophysiotherapist and found it helpful. I was an in-patient at the Queen Elisabeth Hospital (formally the Glasgow Southern General). The the therapy I received was intensive where I underwent Physiotherapy and other mental challenging tests. I found the treatment very helpful but struggled with balance issues during nights due to dizziness during night when I needed to go to the toilet (may be due to doing a bit too much?). Don't know if this helps but I wish you good luck.

[Piero]

Worth a try. I'd be interested in the results.

[margaretm]

Hi Ted

I was referred to a neurophysio by my GP, so the service was free, although I did have to wait 3 months for the visit. The physio came to my home, assessed my balance and gave me a series of very straightforward exercises to be done in my kitchen, with the support of units, and core exercises on a bed. She observed my doing these exercises to be sure that I was doing them correctly and safely and came back to review my progress.. Six months later, I feel more confident in my gait and there has been a significant improvement.

Good Luck!

[Litty]

I am VERY lucky and have seen my neurophysio for every 10 weeks or so for the past 15 years and she has become a close friend. I tell her what in particular is bothering me and she gives me new exercises each time. Because she knows my body (I have always favoured my right side) every time I sit without my top on the edge of the bed and she feels with her fingertips my weight distribution. It will not help with the dizziness I am afraid. I make myself practise walking especially downhill, I do like a deep massage especially on my legs which do not have so good circulation.

I think give it a go and then see how you feel : )

[neta]

I have no neurophysio.  A word about PT and CA:  This  "illness" seems bigger than Physical Therapy  generally. Its like a high speed train, wrecking havoc where and when it wants.  Gait, speech, swallowing....Maybe Iam wrong but I dont think so. What can be useful:  sheer willpower and tough exercise. N

[timk Volunteer]

I saw a neuro physiologist (NP) at my local hospital.  My ataxia specialist suggested it to me and also in a letter to my GP who then wrote a letter for a referral to my local hospital. I was seen some 3 or 4 times by the NP with about a month between each visit so that I could do the exercises I was given . The NP then assessed my 'performance' and amended my exercises accordingly. I was discharged at the point when the NP felt that I had made the necessary progress and understood what I had to do.

I am fortunate in that I have mild symptoms that primarily affect my balance. Over the period in which I saw the NP and did my balance exercises, my balance improved. At my last assessment with my ataxia specialist, my SARA (Scale for the Assessment and Rating of Ataxia) score had actually decreased because I could do some of the balance exercises better - in fact the test exercises were significantly easier than some of the exercises that the NP had given me to do.

I do not experience dizziness, so cannot comment on the possible impact of physiotherapy on such. But certainly, in terms of physical support, my experience is that a NP can be most helpful.

Of course, I do not know where you live, but certainly in the UK this sort of support is available for free via the NHS.