Neuro Physiothreapists any good?: I have been... - Ataxia UK

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Neuro Physiothreapists any good?

albion profile image
16 Replies

I have been having walking problems which have become worse over the last year. I saw my GP and she gave me some back exercises to do. Which i tried (no use) She also talked about refairing me to a physiothreapist. I have never had much benifit from physio so i asked her is there was anything else. She said there wasa neuro physio but cuts being what they are...

So i offered to pay and she said try the excercises and if no use you can see a neuro physio.

So my question do people get much benifit from them? I dont mind paying but i am reluctant to spend maybe £100s for no benifit.

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albion
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16 Replies

I had been seeing a neurophysio a couple of years ago and found it reasonably helpful. Shortly afterwards I was reffered into hospital as an in-patient for rehabilitation for five weeks. I found this to be more beneficial as the programme included Intensive physiotherapy, hand therapy, relaxation techniques and psychological assesment. The outcome was very positive as I learned to control my motor movements much better integrated with positive thinking. I gained more self confidence and I can now walk with both a rollator/walker and elbow crutches very easilly now. Without them I lurch and stagger putting my safety at a higher risk. The progress I made while in hospital has helped me immesely. I believe slowing down has been the key to my success. The treatment I recieved was from the NHS and I can't thank them enough for their help.

HazelCarr123 profile image
HazelCarr123 in reply to

For years I have had a bad back, I was taking Tramadol, ibrufen, Paracetamol. I had Physio, acupuncture everything. I have worked for 25 years in a school doing 10 years with an exercise programm for Dyspraxic children and it cured them. Then I got Ataxia (which I see as an adult form of it) I started doing a Pilates class at home for lower back pain and some left/right exercises. |It's by Allen Menzies (They said he would be in a wheelchair from Amazon) it took me weeks to do it without hurting and now I do it everyday, I take 1 painkiller as you have to do it slowly, I have no pain, I stand without shaking, my speech is brilliant and I paid £7.99 for the DVD I use a walker and go out everyday because being sociable is so important and confident now I am steady.

jurgen profile image
jurgen

Hello "albion"

I think Neurological Physiotherapy is very important in finding out what

exactly is the cause of your Ataxia.

PROBLEM: how to find a competent Neurological Physiotherapist

Maybe "Ataxia UK" could publish a list.

I think I have been lucky in finding a competent doctor - though his

diagnose didn´t make me happy at all:

I was diagnosed with ".Autosomal Dominant Cerebellar Atrophy " - a

diagnose which was confirmed by Magnetic Resonance Tomography of

the brain

Regards

PS "albion" you forgot to tag your question

Tags are like helpful labels that allow you to find useful posts quickly.

Litty profile image
Litty

For several years I have seen a neuro-physio. I see her every 8 weeks. I am very lucky. She is brilliant. She is private and was recommended by the local speech therapist. She changes my exercises and concentrates on whatever is a problem at the time.

Although ataxia knowledge is useful, neuro-physios deal with stroke victims, etc, so are very aware of our difficulties. Just try to find one that someone recommends or otherwise keep changing till you are happy.

Good luck.

jurgen profile image
jurgen in reply to Litty

Hello "Litty",

I´m not sure which SCA I´m suffering from.

Actually, I don´t care much - since there is no remedy

anyway.

In hospital they diagnosed me with ".Autosomal Dominant Cerebellar Atrophy "

and strongly advised me to use a rollator.

I have seen a neuro-therapist twice a week since 1997 . Although

I think her brilliant as well there might well be new ideas with

your therapist.

So, please mail some of the exercises.

Yours

Jurgen

Litty profile image
Litty in reply to jurgen

Hello there

To be honest I do not think my exercises would be of any real use. They change every time and are specific to my body at the time and it's particular problems. They are also after she has stretched me and tried to see what I am capable of doing. I would not feel very happy giving specific advise that might injure or hurt someone else.

I do think these general ones are quite good though

ataxia.org/pdf/Coordinative...

Hope it helps.

jurgen profile image
jurgen in reply to Litty

Yes, it did help.

Thank you

HarryB profile image
HarryBAdministrator

Hi Albion

As I am sure you are aware, physiotherapy is essential for people with ataxia. It is not a curative therapy but more about maximising the function you have. It is the physiotherapists's role to give a program of exercises that are suitable for the individual and to ensure those exercises are being carried out properly and safely. It is the patient's role to perform those exercises regularly and, if advised by the physiotherapist, to carry them out daily.

As I am sure you also know a neurophysiotherapist is a physiotherapist who specialises in neurological conditions. They are much more likely than generic physiotherapists to be able to recommend exercises and formulate a physio program that is tailored to a person with ataxia. Neurophysios understand the specific problems people with neurological problems face and this is often evident by the techniques and exercises that they recommend.

My own experience with physio has been positive. In fact I went from being a 'high falls risk' to a 'medium falls risk'. I think not because my ataxia improved per se, but thinking about the way I move translating into the way I actually do move has improved. I have been formally discharged from physiotherapy for the moment but know I will be referred back if necessary.

I continue with the exercises that were recommended for me (everyone is different) which, I feel, continue to be helpful. I have tried to incorporate them into my daily routine and try to make them as less boring as possible, for example by doing them to music.

All in all, if I were you and the appointment is not horrendously expensive, I would see a neurophysio. It might be that you only see them once but if you don't try you won't know if it works for you.

I hope this is of some help

Harriet

jurgen profile image
jurgen in reply to HarryB

I was just going to write another comment on the benefits

of physio & the therapist´s role

Thank you for your message.

You write:

"I continue with the exercises that were recommended for me (everyone is different) which, I feel, continue to be helpful. I have tried to incorporate them into my daily routine and try to make them as less boring as possible, for example by doing them to music"

You´re right, dear Harriet. I should do my exerc. at home -

but I´m too lazy.

Regards.

wildone profile image
wildone

In my experience - no. But when I started to see a neurophysiotherapist I was young and had only just been diagnosed so resented the therapist on principle. A bit like the dentist! But some of the things I was told help me now. If I'd have kept an open mind and my expectations were more reasonable I probably would have had a better experience.

Donnybluewayne profile image
Donnybluewayne

Not read all the answers but I saw a Neurophysiotherapist twice in the last week, 1st visit wasn't good I had no confidence in the lady, but on Monday what she proved to me was amazing, how your brain learns from exercises and is able to correct your imbalances etc. All we used was a half blown up air cushion to stand on and it is amazing how you learn to balance on that, walking afterwards was relatively easy. I would recommend one certainly. I live nr Retford and there was never a question of cost etc here. Have a bash at getting one on the NHS again before going private !

Wyndham profile image
Wyndham

I saw a neuro physio last week (with my normal physio in attendance) for an initial session, and am due to have my first examination and then hopefully therapy next week.

Barnet hospital (north London) have been absolutely excellent in trying to help me. In fact they got me referred to my neurologist (who diagnosed me with Ataxia) in the first place. If you live close enough I can strongly recommend them.

Any tips as to what I should tell the neuro physio? (She has treated Ataxia patients before so that is good...)

Ive just had my first physio session yesterday-actually the second one as the first one was taken up with just getting my history!

The one yesterday proved to be useful-and hard work- and he's given me a programme to follow,hopefully before the NHS sessions - but no idea when these will be.

The key discovery for me was that when my feet were held down firmly so I stopped thrashing about, I could begin to concentrate on my posture and feel what this is like when I do this properly.......He's firm but funny, which I like, and I think I'm beginning to trust him to help me.....

silkwood profile image
silkwood

As a result of these comments I have asked the doctor and the OT to refer me to a Neurophysio.The OT has emailed me to say it has been done.I wait with bated breath.

Good luck Marie. Hope this helps you manage better.

jurgen profile image
jurgen

Hello "albion",

you forgot to tag your question.

Is it ok by you if our Admins, Harry, tagged it ?

*******************

Tags are like helpful labels that allow you to find useful posts quickly. They appear at the bottom of questions and posts. When you write a post you should add relevant tags to your own posts and questions by typing them in the tag box. By clicking on a tag you will be able to find all the questions and posts that have the same tag, making browsing much easier.

*****************

Regards

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