Cerebellar ataxia and benefits: PIP or ESA? - Ataxia UK

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Cerebellar ataxia and benefits: PIP or ESA?


Hello everyone,

Newbie here and first post.

I was recently diagnosed with cerebellar ataxia. After 3/4 years of typical meandering gait I had noticed a deterioration in recent months together with loss of sensation and use of right hand, extreme fatigue, problems swallowing with food, etc. I had put this down to Pregabalin (300mg per day) which I take for psoriatic arthritis. Anyway, my GP asked me to do the "tightrope" walk and I almost fell over. Could have knocked me down with a feather! I had no idea I was so unstable although I had bought a walking stick as I felt unsafe walking in the street and especially on public transport. Anyway, my question is: should I apply for a benefit and, if so, which one?

I am 63 and unemployed and in receipt of JSA. Live alone and have no family.

Any advice very welcome as I feel very isolated and have never claimed any medical benefit before. (For example, I have skimmed the PIP form and the question about "meals" - but I don't ever make myself meals, just sandwiches, as I can't stand over a cooker watching saucepans without needing support to stand, etc.)

Thanks for any advice.

5 Replies

Hi🙂Why don't you ring AtaxiaUK helpline for advice re applying for benefit🙂 They'll send you useful info about ataxia to pass on to your GP🙂 I applied for a Blue Badge but otherwise have no experience re your enquiry😏

The symptoms you mention are well familiar to most of us here. But one other thing you mentioned rang a bell with me, Psoriatic Arthritis. I have associated symptoms, and think I should ask for a blood test🙂xB

Hi I also was diagnosed with cereball ataxia 2 yrs ago and with the advice of my OT I applied for PIP and am now in receipt of the benefit.I also had to give up work 4 months ago and now also claim ESA.

I would defo applie for PIP ,hope this is helpful 😀

Very helpful advice.. I agree and would also add that I suggest that you speak to your doctor about your situation and ask their advices.

I have been exactly where you are and it's a scary and uncertain time. When you don't feel well, the last thing you need is to be worrying about finances and the future as well. I too am alone, it is a very hard situation.

I should have cut to the chase and gone straight to the CAB and recommend you do the same, as well as above and talking to your doctor

Helping yourself to help yourself it's hard when you really don't feel well, which heightens the isolation I found., but in a funny way, it takes your mind off the physical symptoms and keeps you moving, when all you want to do is hide under the duvet

And every small step in the right direction feels empowering, which helps.

Baby steps eventually make a bridge

Pace yourself and look after yourself like a child. I was also amazed at how meditation at bedtime really helped me with the associated anxiety.

Wishing you love light luck- be brave warrior woman x

It's not about what condition you may have but all about what they assess you can do on a bad day. Look at this site they have a little PIP test that you can run through to see how many points you could get. benefitsandwork.co.uk/

It's a bit of a minefield applying and you definitely need someone who can assist with answering the questions fairly, try your CAB or neuro nurse or similar for help or recommendations of where to go.

I want to thank you all for reaching out and offering your advice - and within 24 hours! I think I will try the CAB - I used to be an advisor there many years ago and know how thorough and helpful they are. And I have come to the realization that I do need help; I'm often exhausted and just want to stay indoors all the time and conserve the little energy I have.

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