Partner of ataxia sufferer

[Alip-j]

My partner was diagnosed with spinocerebellar ataxia type 2 just over a year ago.He is in denial and continues to work full time. I also work full time but don't let him do much around the house as I try to avoid him hurting himself or falling.The only things I am struggling with at the moment is if we go out in the car he refuses to get out if someone has parked his side so he gets out before I park and I have to reverse out and keep traffic waiting while he gets back in to some people's annoyance.Also getting on and off a flight is a nightmare.He hates crowds and becomes stressed if being rushed.Are we eligible for a blue badge? Any advice on these issues would be appreciated.

[cocoa]

I would definitely apply for a blue badge. It is an absolute must for me.

Good luck!

[Alip-j in reply to cocoa]

Thankyou

[Jay1972]

Hi Alip-j ,

I am 45 years old and I also have SCA2. I was diagnosed a couple of years ago although I had symptoms many years before that.

I had a fairly high power, high stress job and it very quickly became apparent thatI was unable to do that job to the best of my ability. Luckily, I had a very supportive boss, union and employer. I also had a good pension scheme and I eventually retired on grounds of ill health. It wasn't an easy thing to do and although this was nearly two years ago now, I still miss working.

Your husband is probably scared. I know I was. Receiving that diagnoses is earth shattering and every thing you thought you had planned for your life is now in question.

There is also the fact that, as the traditional breadwinner, it very difficult to come to terms with the fact that you are unable to be a provider and that you may have to rely on your significant other for many things.

Your husband needs time to adjust to his new reality and will come to accept that the world he knew has changed.

If you are near London, try to get a referral to Hospital for Neurology and Neurosurgery at Queens Square. Dr Giunti there is the UK lead on Ataxia and has a dedicated clinic with a team that helps with every aspect of the condition. Also, counselling really helps. I had counselling with Mind and it really helped.

Also, you will be eligible for a Blue Badge. You also may be eligible for Personal Independece Payment - apply for that with the DWP online at gov.uk. You can also register with your district council as a disabled person and this brings lots of help such as concessionairy rates at certain places.

Above all, be supportive. It's sometimes hard but he will get there. If you are on Facebook, look for the Spinocerebellar Ataxia Awareness and Research Support Group. It's full of people from alol over the world who all have different types of Ataxia. It's a lifeline for partners, carers and sufferers - join - it's a tremendous help for advice, support and if you just want to vent!

If you have any questions about SCA2 or anything else, please message me.

[carerwife in reply to Jay1972]

Hi Jay. Thank you for mentioning the facebook page, which I didn't know existed. We live in the north of Scotland and my husband, now 76, was diagnosed about 12 years ago when the bottom fell out of our world. He/we feels totally abandoned at having been just told the bare bones - no treatment, no advice, no help, don't know which variant of SCA it is, and told no future to look forward to just a wheelchair and being doubly incontinent. Great, that really helped! He gets frustrated at being unable to do very little but is gradually coming round to using a walker and I am permanently exhausted both mentally and physically trying to cope with a house we don't want to leave, a garden which is my solace but I can't keep up with.

[Alip-j in reply to Jay1972]

Thankyou so much for your reply. I will certainly check out facebook.I work for the NHS and pushed the GP to refer my partner to a Neurologist.After an MRI and then a blood test we actually received a letter telling us the diagnosis and we were asked to attend Clinical Genetics at the hospital.We had no clue what this was all about and wasn't told a lot. We waited another year to see the Neurologist who just said I'm sorry but my job is done you can now deal with the GP.A little harsh I'd say leaving us shocked and little knowledge.

[Jay1972 in reply to Alip-j]

That is harsh. Get your GP to refer you to your nearest Ataxia clinic. You can find details of clinics on this site ataxia.org.uk. Whereabouts in the country are you?

[Alip-j in reply to Jay1972]

Nottingham

[TedTom in reply to Alip-j]

Would definitely recommend Sheffield as Prof. Hadjivassilou and his team are great. Your local council is the place to go for blue badge, when diagnosis confirmed. It makes a world of difference. Re work and housework it has to depend on yourselves. My friend worked in a job she loved almost to the point of a breakdown as giving in as she put it meant admitting she had Ataxia and this terrified her. My reaction was to try and do absolutely everything in an effort to help. (Hence I must admit the comments on here about it being worse for a man, being told to be supportive are a bit irritating as no-one else ever knows others circumstances. Sometimes it is the woman who is the breadwinner; housework for example is not written in stone as a woman's job) It has taken over ten years to get to a point nearing some acceptance of all this. She continues to fight back hard and does as much exercise, healthy eating etc as can. The best advice I was given by someone else with Ataxia was to back off! The person who hasn't got Ataxia can never know what it feels like. The person with Ataxia can never know what it is like trying to find the fine line between being helpful and being helpful so much it's irritating and unhelpful! Backing off is the hardest way to be supportive I have found. Keep communicating at all costs, all the best x

[Lucycord123 in reply to Jay1972]

Hi Jay1972,

Thank you for your post, I'm 30 and have just been diagnosed. My symptoms ate early doors but I'm feeling it. I'm a criminal justice social worker and have took some time off to get my head around it. As you're retired now, what stage at you at, as in are you still able to walk and drive or do you require a wheelchair?

Lucy

[ladyntramp]

Hi Alip-j,

As I don't live in UK I don't know what is needed to be eligible for a 'blue badge', but I do know that several years ago I applied for a 'disabled parking permit' as I need to open the car door fully to get in or out of the car. Most car parks are not big enough to allow this and I could no longer manoeuvre myself into a half open door. As for getting on flights I always book a wheelchair at the airport, when I buy my ticket, that way they wheel you to the plane, and off again, and a steward assists you down the aisle to your seat. To avoid the crowds you go on the plane first, and get off last. I feel for him with hating crowds and becoming stressed when being rushed, that is when I make mistakes or fall, so I have the same hatred of crowds. Tell him to get a walking stick because if people can see you have a problem usually they don't rush you quite so much, although it took me quite a long time to finally admit I needed one. My father lived in denial all his life - would never admit to having Ataxia. He worked until he was retirement age, and lived alone for about 30 years until finally spending his last few years in a nursing home. I hope this is of some small help and comfort to you. I have often wondered what it must be like for the partner of a person with ataxia, also often thought how much worse it must be for a man as they accept things differently to us women, yet the affects are the same.

Good luck.

[Lemondavies2015]

If he's been diagnosed, a blue badge should just be filling in the forms from the local authorities!

[murcia]

Yes apply for blue bade

On flights ask for special assistance all Airports provide this you are given priority & not with crowds I can't stand stress hassles that's the last you want getting on a plane, they allocate your seat (no charge) we always have row 3 course if you want others seats you may pay it's what you want.

I fly Easyjet as have a place in Spain no problem been flying with them 15 years

I have Freidreiches Ataxia & have for nearly 40 years been in a wheelchair full time for abouf 6.

Good luck

[claire01]

Apply as soon as ....they àre a god send x

[Veteran250]

Hi Alip-j......I am registered disabled...... you apply to your county town council for your application form, when filled in and returned to council they will contact your GP to enquire as to the medical condition, the desision can take up to to six weeks.... although my blue badge was free, I believe there is a £10 charge now... blue badge holders generally get free parking but check the notice at ticket pay point, at my local theatre if I purchase a ticket for a show my wife s ticket costs nothing as she is deemed to be my carer

Good luck with your application

Don.

[Litty]

For a bloke I can see it must be harder.

IF he will talk to someone it may help. I am not a talker but it so helped my husband (my main carer) and my daughter. My son does not like talking but found an american online. Ataxia is cruel and affects the whole family and your husband needs to know you will be there for him but he needs to think of others and adapt for them. Hopefully he will realise you included!

I have a blue badge and it lasts for a while - I have had 3. I do not drive any more but it is so useful. I got mine for our council. So many people have them.

Good luck x

[rankin1st]

Hi here is link for blue badge Scotland mygov.scot/apply-blue-badge/

[birdie333]

I have just been diagnosed with the attacks had neuropathy. I don't know what kind of a texture I have yet is genetic testing is still out, I live in the cuddle of the second floor, and I have stairs of the inside, the stairs don't bother me The walking stripe does. I'm trying to get it to clinical trials? Stem cells? It's so good to me I don't know where to go from here.

[SueMillman Partner Ataxia UK in reply to birdie333]

Hi Birdie333, If you are thinking of going down the stem cell route, please consider this very, very, carefully. There is no stem cell treatment currently available which has been properly assessed and reviewed using the normal scientific processes (i.e. publishing research papers which have been peered review by other scientists). Please see ataxia.org.uk/wp-content/up...

[cocobibi]

There are so many helpful comments - I'd like to add all that ....Blue Badge - definitely apply with your Council. If you get that you're also eligible to be exempt from Congestion Charge in London (apply to TfL).

Access to Work - if you're still working then Access to Work is invaluable. They have the funding to pay for taxis to work, mobility assistance eg wheelchair + Tri-Ride, support worker etc. There is a large pot of money available but so many people don't know about this. Access to Work are very hard work but it's worth persevering. We could not have afforded the taxis and equipment they've paid for.

DWP - make sure you update your situation regularly and get max benefits as/when you need more support. It's easy to forget to do this and not get payments when you're entitled to them, staying at a lower level longer than needed. AGE UK are very helpful re filling in application forms.

Thanks for the advice re backing off - as the main carer I know I try to 'fix things' far too much. It's so hard for everyone involved, heartbreaking to experience the struggles, frustrations and sadness on all sides. BUT what is most helpful to carers is to hear some cheerful, upbeat comments to help bring some positivity into the house. It's important to share some worries or bad days but, as a carer, that makes me worry too so a positive balance is vital.