How often do you see your physiotherapists ?

[jurgen]

as physiotherapists also have an appreciation of psychological, and social factors which influence their clients.I Iike a lot to drive twice a week from my village to the near

town

it´s very important for me to get up early ,get dressed properly.and drive up to another

place

[gossy]

I dont have a physiotherapist

[PeteW]

I don't have a physio either. If its possible, its better to find out what exercises work for you rather than being told what works for you

[Hidden]

a physiotherapist wots one of them then. In all seriousness no I don't have one either why would I

[Cathytw]

I have seen a physio in the past but didn't find it that helpful so didn't go again

[wobblybee]

Hi Jurgen!

I saw a Physiotherapist at the Falls & Syncopy clinic, results of tests they

did led on to a MRI, which is how I was finally diagnosed. But, after I

was passed on to a Neurologist that was it, no further contact with the

Physiotherapist. Although to be fair, she did say I could contact her if

I thought she might be able to help. I had a vigorous neck massage

at Stansted yesterday, that certainly woke me up!

[Nigel-2112]

I see a Physiotherapist (Physio-terrorist) evey 6 weeks.

[wobblybee in reply to Nigel-2112]

Hi Nigel-2112!

I like your description! During my quest to find an answer to my

symptoms, I saw a Chiropracter. I was horrified when he grabbed

my head and sharply twisted it until my neck clicked. Needless to

say his sessions didn't cure my problem, and what was more 'it

hurt my pocket'!

[jurgen in reply to wobblybee]

Hello wobbly,

I think for people like yours truly suffering from SCA seeing

a competent physiotherapist regularly is VERY important.

As "silkwood" wrote some days back

***********

I think the mental health around this disease is important.

It is like you are in a constant bereavement waving good bye

to past skills and independence.

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

Regards

[wobblybee in reply to jurgen]

Jurgen, you are so right with that observation. It has taken

a long time to come to terms with this condition, it's been a

painful journey mentally. I'm in a 'happier place' now, I can't

tell you what a difference that has made to family life in general.

[wireyal in reply to Nigel-2112]

I thought a physio was some sort of fizzy drink(;

[wireyal]

My wife had 4 sessions of Hydrotherapy and equal sessions of physiotherapy and that was it 20 years ago.

[HarryB Administrator]

Hi Jurgen

Could I ask how long you have been having physiotherapy for and whether having physiotherapy twice a week is in Germany or England?

Harriet

[jurgen in reply to HarryB]

Hello Harry,

I´ve just been emailed by (German) friends who are diagnosed with a progressive ataxia (SCA) - like yours truly.

In Germany - as soon as you are diagnosed with a chronic

disease ( like SCA )- you are entitled to physio - open end.

Though some docs say you are ruining her/

his budget and ask you to see another doctor.

I live in Germany.

Regards

[HarryB Administrator in reply to jurgen]

Hi Jurgen

Thank you for your reply. I am delighted you are able to access physio so readily and frequently in Germany if you have a chronic condition. However that is not the case in the UK.

Harriet

[jurgen in reply to HarryB]

Hello Harry,

I think it VERY unfair that Brits aren´t able to access physio so readily and frequently as in Germany.

Both our countries are EU-members !!!!!!

But, how do you explain "wynd"´s story

Regards

[Wyndham]

Perhaps I have been lucky, but I have been seeing a physiotherapist every week since February.

She has been fantastic. The sessions have been mostly therapy quite frankly - rather than and direct physio work, although she has given me exercises to do.

What she has done that was most important, was ensure I saw a neurologist - who diagnosed my Ataxia. She also got me to see the Orthopaedic specialist for my back problems (which were being aggravated by Ataxia); she referred me to the Neuro Rehabilitation Centre who did home visits - an Occupational Therapist and a Neuro Phyotherapist (who didn't know much about Ataxia but was very helpful all the same); she got me referred to the Pain Clinic; she chased my Neurologist who referred me to Queens Square as well as to specialist Neuro Physiotherapists at my local hospital; and, she referred me to the local Adult Social Services. She also managed to get several appointments moved up.

My suggestion is: make friends with your Physiotherapist as they can be very, very helpful.

[Litty]

I am very lucky and have seen a neuro-physio for over 5 years. I see her every 8 weeks. She is brilliant and focuses on what ever my latest problem is. I then have a set of new exercises to do.

I thoroughly recommend them.

[silkwood]

I am seeing my Neurophysiotherapist this week.I have been given some exercises.They are mainly balance exercises and I have been doing them.I was getting weaker as the disease progressed.I am determined to try and do things safely but not rely on aids too much.Some have little choice but I do have a little strength left which I am determined to keep.It is smalll but at least it is something to work on.It seems to back up everything that Jeannie and Dr Clouse are saying re using yyour existing strength. Use it or lose it.

That said I met some very positive people at the weekend in Stansted.I think that feature is of equal importance.

[silkwood]

I saw the Neuro-physiotherapist today.She has suggested several exercises using one of these big ball things.

I have also got t relearn how to walk. She is very good.

People without Ataxia take walking for granted.Transferring weight from one side of the body to the other is really difficult.I am trying but its so tempting to go quicker and take the easy way out.I find I am doing a lot of leaning.I shuffle and am reluctant to take my feet off the floor because it feels safe.For some reason I have developed a fear of doorways and pull myself through.Iwobble a lot

Others with Ataxia find these balls helpful.What do you think??

Marie

[jurgen in reply to silkwood]

Hello "silkwood",

lucky you - obviously.you aren ´t diagnosed with SCA.

If you had that disease walking would become worse & worse

until you´re wheel-chair bound.

Regards

[HarryB Administrator in reply to jurgen]

Hi Jurgen

I think that is rather a negative way to look at things. I have a progressive ataxia and know that, as you say, 'my walking will become worse and worse until I am wheelchair-bound'. I do regular exercise with an exercise ball and a pedal machine. I also do exercises on balancing and concentrating where my weight is when i am walking that we're shown to me by my physio. These various exercises will hopefully slow the progression, help with my balance while I am still able to walk, helps keeps my muscles as strong as they can be, helps me know I am doing something to help myself and is generally very good for you. I don't know about slowing the progression but I can definitely say it is helpful in all the other areas I have described. Go silkwood!!

Harriet

[jurgen in reply to HarryB]

you are right, dear Harry. I´m sorry to be that negative now

and then.

Aktually, it´s no use "crying over spilled milk" but one can only

FIGHT this bl...y disease

As I said: I´m having physio ( 30 min per session) twice a week, I have

a pedal machine, I do daily walks (60 min) with my ( outdoor) rollator

I should be o.k. because I was diagnosed with SCA (MRT) back

in 1997 & I´m still not wheel-chair bound.

Regards

[degarmo in reply to silkwood]

Hi,

I was diagnoised with gluten ataxia last December, whereby I had no balance. Still have no balance but like yourself I am fighting to not use aids. I have found the chiropractor helpful as well as the

pyhsio

Degarmo

[HarryB Administrator in reply to degarmo]

Hi degarmo

It is great you have found the chiropractor and the physio helpful. Have you had to change your diet significantly and if so, has you seen any change in your symptoms?

Best Wishes

Harriet

[degarmo in reply to HarryB]

Have been on.a strict.gluten free diet, no change in my symptoms. I see the physio once a week chiro 3times aweek

Degarmo

[silkwood]

Hi Jurgen

I cannot walk outside at all.I probably will be diagnosed with a SCA but at the moment in England there is a big group of us that have to live with the unknown .I am trying to preserve what little I have left.I know I will probably have to go into a wheelchair one day but that need not be the end.Many of my friends are in wheelchairs and are very happy.I think it is more about our personality than the disease and we can choose what we focus on.I was brought up with a very negative personality and that put me off.Look at Jeannies post about Dr Clouse and he has the worst kind of SCA and he now dancing.The worst part of this disease is the mentall anguish.

Thanks Harriet.

[jurgen in reply to silkwood]

please see my reply to Harry

Regards

[wobblybee in reply to silkwood]

Hi M!

I was on Dr Clouse's site yesterday and found it very motivating!

Today I had my first ever session of Pilates, I survived, just. But

I will be persevering. The teacher was very nice, she had found

information re Ataxia and made sure I was capable of carrying

out her instructions. Jurgen would probably be interested to know

that she used some exercises from a German Pilates DVD!

[degarmo in reply to silkwood]

I know what you mean, I have had to invest in buying a tri-walker because my balance is so .poor. I can't get my head around the diseasd, I used to be so full of life now I am a recluse no interest in anything. I'm still working at present but I think work are looking for a way to getv rid of me , then I will really be upset as I love my job. Or when it gets progressively worse. Hopefully not too soon.

Degarmo

[wobblybee]

I agree, no matter how good the good days are, mental anguish can at times be

overpowering. I don't have physio of any kind at the moment but I've noticed by

the way I feel physically that it's something that needs looking into. Someone

with CA told me they felt benefit from Pilates, I'll be trying a session tomorrow

for the first time. Re wheelchairs - I don't use one at the moment but I'm aware

of the improvement in confidence, concentration etc when sitting down, plus the

worry of losing balance would be taken away.

[wibblywobbly]

Hi,

I live in France and my axtaxia was diagnosed 3 years ago. I am 46. Still not got a complete diagnoses. I go to physio twice per week by taxi. I see a physio who is used to working with patients with neuro illnesses. I was also in a re-habillation centre last may for 3 weeks. All this makes a huge difference in my mobility. I would thoroughly recommend physio - if the therapist is competent working with neuro illnesses.

[jurgen in reply to wibblywobbly]

I would thoroughly recommend physio - if the therapist is competent working with neuro illnesses

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

I couldn´t agree more

Regards

[wibblywobbly in reply to jurgen]

In fact in my experience - physio s who don't understand can actually make things worse. It's very important to see the right person who has a understanding of neuro illnesses - even if they don't know our actual illness (as no-one seems to!!)