Advice for partner of ataxia sufferer

[Alip-j]

My partner is 45 and was diagnosed with spinocereveller ataxia type 2 just over a year ago.He's in denial and continues to work full time.I work full time and do 90% of housework etc to avoid him hurting himself or falling.The only things I'm struggling with is when I go to park the car he refuses to get in or out if there's anyone parked his side and has to get out before I go in the gap and to get in I have to pull out sometimes making people wait while he gets in.Are we entitled to a blue badge.It really would help.? Also getting on and off a flight is a nightmare.Any advice would be helpful.please.

[Loubielou72]

Hey Alip-j

Unless your partner qualifies for high rate mobility on DLA or the 'moving around' component on PIP you will struggle to get a blue badge. I'm assuming that as he's still working full time that he's probably not claiming at all?

[Alip-j in reply to Loubielou72]

Yes that's correct.we don't claim anything

[trac67]

Getting a blue badge here in Scotland does not depend on what PIP allowance you get, the main criteria seems to be ability to walk a distance or manoeuvre it may be worth asking or applying as a no is the worse you can be told. A blue badge can be very helpful.

I always ask for airport assistance (due to my inability to walk up & down steps) a ambulift is always provided at Edinburgh and a wheelchair & person provided abroad waiting at the ramp, again a free service that's well worth asking for whilst booking.

[wozzer45]

Hi alip-j,

Well done to your partner- continuing to work full time with ataxia would be very tough. I couldn't have done it. I was a primary teacher of 4-7 year olds. I got reasonable accommodation to work part-time for a year but the board wouldn't approve it in the long term. We have two young children so we felt my best option was ill health retirement which I got in may. The whole work issue has been the hardest to deal with. I loved teaching having returned to college as a mature student. We define ourselves to a very large extent by our profession and I'm finding it v hard to redefine myself. On a bad day I don't feel like me any more.

Sorry, I digress! I'd advise you to encourage him to continue working either full or part time as long as he reasonably can. With regard to car parking and flights they're not big issues surely?? I suspect your real bugbear is having to do 90% of the housework. How did you divide housework before ataxia? Maybe you could pay for a couple of hours of cleaner to help with big tasks. Ps I hate housework too.

Liz

[rankin1st]

Hi Alip here is a link to citizens advice in Scotland. Seems same as England you should ask for an assessment for your husband and you as a carer can get help too. I'm a carer and get 5hrs a week to help me with anything like shopping gardening cleaning as I work full-time and care for husband. My husband is in denial to and it's hard to know how to help most of time but a blue badge is a god send just complete a form from your local council again adult social care should be able to advise or citizens advice. Here is the link citizensadvice.org.uk/scotl...

We fly Ryan air and ask for special assistance get straight through customs etc and get help onto plane get extra help by getting medical exception to carry meds on flight. All the best

[ConfusedAtaxian]

I had no problem getting a blue badge. A godsend.