How often do you see (if at all) a Neurophysio, ... - Ataxia UK
How often do you see (if at all) a Neurophysio, what does the service provide for you and do you find it beneficial to your needs?
A what?
They specialise in neurological events, i.e. balance disorder, brain impairments and such.
Is a Neurophysio the same as a physiotherapist? If it is I saw mine for six weeks first, then once every 3 months, now it is 6 months. The nurse gives me exercises to do and observes me walking and offers aids to try to see if they help.
Much the same babygirl but a Neurophysio has more expertise in neurological conditions (ie problems in relation to the brain)
I have never seen one yet for my ataxix
I used to see a neurophysio for years. She knew what ataxia is and had other patients with the same issues, and exercises were very much to do with controlling movement. But her visits made me feel low afterwards - she was always directly comparing how I incorrectly move to her correct movements. She always stressed how when I'm tired I should stop - which made me feel like I wasn't really doing anything and when I stopped doing the exercises for a while I felt no difference. It just all made me feel weak and feeble, and like doing the exercises was a bit pointless. I'm not saying all neurophysios are like this -- just the 2 I've met.
General physios make me feel more optimistic. I only see one occasionally, and do my exercises at home. I do control exercises, but also exercises to build up my strength (ankles stretches, arm weights, cycling). I'm really noticing the difference. Things like standing are easier now.
Your reply is encouraging; inspiring and brave. Good on' yer!
I've never seen one but I have had physiotherapists - for a while at least.
They were okay, but to be honest they could only do so much.
I still do exercises at home but some of them thaf they left for me to do I'm unable to because of the onset of ghe ataxia.
As every month passes it does get that bit more difficult to do the hour exercise.
The legs are the most difficult part to exercise and painful.
But I carry on as best I can 
Never heard of neurophsyio
In brief; I noticed my problem (CA) as being of concern 2 years ago, symptoms similar to MND that my twin had (passed away after 18 mths last Xmas) so didn't do anything until last Nov. I was able to go private for MRI; CT; consultancy et al £1900; my trust fund paid £1500 as the waiting time (as experienced by my twin) was 4 mths. I went back into NHS for Lumbar Puncture - still waiting result.
I've had no advice (cynically now NHS) or follow up from Consultant or GP.
Rodders
I am very lucky and my husband pays for me (and him, because he has very injured body from playing rugby for too many years!) to see a neuro-physio every 8-10 week, she is a family friend now. I tell her what has been hurting or my latest problem and she gives me 3 new exercises each time. I saw her this Monday and I am having a bit of trouble with my arms tightening, so she stretched them and I have some new exercises. I am very lucky because she has known me for years. I think it is very individual about whether you find it a help and you need to get on and trust the neuro-physio. IF you decide to try one, make sure they are chartered - csp.org.uk/your-health/find... . Hope this helps : )
I'm hoping that my Neuro-physio will be able to give me advice and excersises to alleviate the cramps in my hands. I don't want to give up driving.
I havent heard o f "neurophysio(s) " either
do you mean a Physiotherapist ?
Regards
Hi Iain,
After first talking with my GP, I was referred to a Neurologist who I have seen over the past 14 months. I have had to go to my GP once to prompt a response from the specialist as I had not heard anything for a few months. I only see him roughly every 6 months although he has recommended me for a treatment called IVIG ( Intravenous drip of Plasma) I have to receive a further 5 courses which is certainly having some positive affects. He has also referred me for language and speech therapy, so overall he seems to be trying to help me.
I have had good service from both the physio for complex care and neuro physio. I see her every 2-3 weeks. She has got me walking along the parrell bars and I have also been in a standing frame with arm exercises. She is arranging for us to meet a rep from 'easy stand' with a view to buying one as standing helps your whole body
I´ve seen "my" neuro-doc 4 ys ago -it´s no use anyway to see
that doc more often as theres no cure for SCA. & there won´t be one
in the foreseeable future as only ca. 20 of 100.000 are SCA-sufferers;
so, it´s a waste of time and money, really
The only things you may do is exercise, have good meals, walking & NO alcohol.
to be .o.k.on the exercise side I have seen a neuro-physio twice a week for the last 23 ys
Regards
