Hello all! I am new to this site but I wondered if I could have your help, its regarding Occupational Therapy for Ataxia?

Hello, I am a 2nd year student of Occupational Therapy at University. My older brother has Friedreich's Ataxia and just wanted to live as independently as possible, which inspired my career choice. I am presenting in front of the University Lectures about Ataxia, however relating to Occupational Therapy. I would love to know if anyone has/had Occupational Therapy and how they helped? Also did they use any assessments with you?

Thanks! :)

15 Replies

  • Hi Heather 778

    I aquired Ataxia after a viral infection 20 years ago and had a lot of occupational therapy therepy,I can't speak highly enough of the vital and inspiring work the occupational therapists do.

    Wishing you success in your career.

  • My occupational therapist is as much use as a chocolate teapot I have to know what is out there and might be helpful and then convince her it would be helpful

  • Honestly, in my experience they're not much help. Generally know little about ataxia (I wouldn't blame them for this - I know that not everyone is a specialist in ataxia) so they lump me in with other people who they deem to have similar issues. That's what annoys me - I say I can't walk unaided but I can get into bed myself and they look at me like i'm deluded. Like annasgonesailing I look up things myself.

  • Thank you for your responses, I believe that the lack of knowledge about Ataxia influences the Occupational Therapists clinical reasoning... I get annoyed when I say my brother has Friedreich's Ataxia only to be responded to with a completely blank face or other people associating the condition to MS. I am trying as hard as possible to educate students and lectures at Uni more about different Ataxias and how O.Ts should be helping!

  • Well done - if you can get just a few more people to understand the problems associated with FA then you will have done some good

  • dont know if this is much help but my 3 1/2 yr olds had o.t - hes not had a confirmed diagnosis but we know he is definutly ataxic in some way. in November they agreed to give him 2x prima steps, toilet rail & bath rail plus bath bored because as he is getting bigger it is increasingly difficult for me to lift him and he is unable to get onto the toilet (a potty is too low & presents similar difficultys) or into the bath (which I am told by the age of 3 a child should be doing all those things and dressing themselves which he also cant do). they have done loads of assessments with him including using playdough to pretend to eat with a knife and fork & getting him to post coins into a money box they then came to the conclusion he needed specialist cutlery costing £4 an item. so as a single mummy who works part time im like really £12 a set? n then im like do u realise that 3 year olds just wanna be like mummy n actually want the same cutlery as me. I actually went out and bought a set of 'normal' cutlery which has nice thick chuncky handles (and was £12 for 16 items not just 3) he finds this much easier to manage, unfortunutly I cant help with wether the other stuff has helped - was delivered a fortnight ago & STILL waiting for them to install it!! I think what I would say is o.t can definutly help to cope with the condition but maybe of much more benefit to an adult who actually understands whats wrong with them as I find it quite tough going with a little one who doesn't see himself as anything but normal x

  • Thank you for your reply, what I do with cutlery, instead of saying they have to pay £15 per item, I get a soft plastic tube which can be inserted over cutlery (it's free). :)

  • what a good idea! any other ideas?? I think I find things more difficult than most because its my son who has the problem and he cant talk well enough to explain how he feels. like today aparantly he was tired so led on the floor in the middle of a shop - now is that really how someone with this feels or is he just being a bit of a monster being 3 1/2 cus that's the sort of thing a kid might do to try it on. the last thing his consultant said to me was 'you must treat him as a normal child and discipline him wen necessary' well if I don't know if hes genuinely hurting/ exhausted how can I possibly disapline him cus in my book you don't get told off for things you cant help (like when he wobbled into a toothbrush display in Tesco literaly emptying the shelf) I really don't think things would be so bad if he didn't try and run everywhere (wel consultant said hed never be able to run but he does this kinda fast walking which is combined with flailing his one arm around behind him in all directions and the other in the air infront of him and just going for it wobbling all over the place - I always stand and watch in amazement - seriously any parents worst nightmare but y shouldn't I let him have fun like a normal kid) anything else you think would be helpful to this condition please let me know!!

  • I can't really walk much now but when I was a kid I used to always walk as fast as possible. It made me feel steadier (probably because unless you trip, it's harder to fall). I hated going down stairs but would run upstairs whenever I could. It was always being made to dawdle that was a problem. For example, a few times I found myself having to walk at snail's pace with a crowd and the experience was a nightmare. I'm not saying it's advisable but I used to do that too. I know it can be hard for other people to wrap their head around - it seems counter-intuitive.

  • I found weighted cutlery a huge help for my son aged 8, we have rails everywhere including round the toilets, he has a postural support chair at school to stop him slouching, a wheelchair, a bean bag to support him whilst dressing, 360• cup for drinking, helmet to prevent head injury, dycem mat for paper, a weird pencil for writing, a laptop for doing bigger pieces of work with clicker 6 software, a slope for working, a chair for the bath/shower, struggling to think of others. Our OT have been brilliant I have to say, but it took till he was at school for services to really kick in.

  • I`ve had visits from them at my previous home. They did try but, they were not up to date with Ataxia sufferers. Not their fault really, my own Doctor did not know anything about it until I was diagnosed with SCA6-Ataxia. Then he dived in feet first and downloaded as much as he could to learn more about it - Good for him I say.

    Anyway the Occupational Therapist`s stopped coming as there was not a great deal they could do - the hospital visits were better value.

    I still had visits from Physio` nurses who were pretty good, but that soon stopped also.

    Now I just use my own stubborn determination and never give up attitude :-)

    I do get days though, when I think - is it all worth it. But it the next day I`m fine :-) :-)

  • My GP referred me to Walkergate Park, John. It's a Neuro

    Rehabilitation Centre.

    I've seen a Neurophysio and a Vestibular Therapist, the

    latter was able to help alleviate the symptoms of vertigo

    and nystagmus. After 20yrs of symptoms, I could hardly

    believe it! :) xB

  • My memory sometimes decides to play tricks on me, which can be confusing at times. Walking into a room and no idea why I what went in for :-)

    Then as soon as I go back and sit down ...........I remember :-) :-) ;-)

    It's a funny old world

    Guess who forgot to put their clocks forward ;-)

  • Mmm, my memory, now where did I put it.... :) xB

  • Thank you all for your replies. The presentation went really well! I hope the lecturers and students left feeling mor confident about Ataxias and how Occupational Therapists should be helping.

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