CA, re; DLA / AA

Hi, never new this site existed.

i have been struggling with CA for over 15 years now, saw neurologist on a regular basis in the early days, but it never got me anywhere, so i have just put up with it the best i can.

i had no idea that DLA was available for this condition. My problem is that i am coming up to 67 yrs now, so DLA is not available.

It appears that Atendance Allowance is the only option available now. This seems to focus more on a carer allowance, rather than mobility help.

Has anyone else had this problem, or got any advice to offer.

i really struggle with walking any distance and my balance gets worse the further i have to walk, also, i have been diagnosed with Asbestosis, which severly restricts my breathing.

i fall over on a regular basis, and have broken my ankle, broken and bruised ribs several times.

any help will be much appreciated.

11 Replies

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  • Hi engineman!

    Now does this relate to cars or trains?

    Like you I struggled ( as we nearly all have) for years before I got

    this diagnosed!

    I'm 63 and I was unable to work for many years prior to being

    considered retired at 60.

    It actually never even crossed my mind to apply for DLA without

    a diagnosis anyway. At the moment I'm not severe enough to be

    considered eligible.

    At the very least I would have thought you could get a Blue Badge,

    if you don't have one yet.

    There are lots of people on the site who can probably give you advice

    re this enquiry, make a cup of tea, get yourself comfy and see what

    happens! Best wishes xB

    ps. Forgot to mention!

    Check to see if there's an Ataxia Support Group near you.

  • hi WB, yes, this relates to driving, getting to hosp appointments, general access to shops etc.

    i was diagnosed when i was in my early 50's, but never offered any help or advice.

    a blue badge would be amazing, will give it a try.

    how do you know you are not eligable????

    my nearest group is about 50 miles away.

  • if you have a car if not you should apply for dla,you get a new car every three yrs so all you do then is put gas in and drive and you are if diagnosed with c/a you auto are allowed a b/d

  • if you have been diagnosed with c/a you can apply for dla

  • When you apply for the Blue Badge the general advice is, tell it how

    it is on your worst day, your GP would probably be able to write you

    a letter to back you up.

    I still have to apply for one, I'm actually put off by the form!

    Every time I'm struggling to get my stiff legs in and out of the car when

    in a confined parking space, I regret not applying!

    I can still walk using a walking stick for safe balance but stairs can

    sometimes be a challenge. I was going to say more exercise would

    help my joints from stiffening but to be honest, any exercise would help!

    Re the support group. What a shame it's such a distance but maybe if

    you contacted the organiser, they could put you in touch with someone

    in the group who lives not too far away. You never know, it's worth a phone

    call. Or, you could probably correspond with them by email.

    It makes such a difference just having a conversation with somebody who

    really understands what you're talking about, I say that from experience!

    Keep on posting, draw people into discussions, everybody's very friendly!

    xBeryl

  • Hi B and engineman

    I have a blue badge fill the forms in mine is a god send but I cannot walk outside at all, and mine was my stroke as well, but yes fill in for your worst day.x v xray25

  • Hi

    If you can I suggest you get the forms and then make an appointment at your local citizens advice centre. I did this and saw a specialist who filled in the forms with me. I was diagnosed with ataxia about 4 months ago. Good luck.

  • Hi Engineman

    I am in a similiar position.To you (62),what helps me the most is going on regular Excercice and Balance courses,these are normally for people over 70 but you can get a referral,it is called OTAGO.

    Best Wishes.

  • Dear Engineman, A Huge welcome to this site! I live in the States, so am unable to be helpful regarding DLA. I can be a help in telling you that there's a "Living With Ataxia" site here in the US, that you may want to join! There are people from all over the world on it also. I don't know what I'd do without these sites, as ataxia is extremely frustrating and challenging! We can all be understanding and supportive of each other! Anyway, I was diagnosed with Sporadic Cerebellar Ataxia eleven years ago, although thinking back, I had small symptoms starting several years before. My ataxia affects me 24/7 and is progressive. I do see a neurologist (ataxia specialist) every 6 months, in case some breakthrough treatment comes up, and also to be monitored for progression, etc. It just gives me some peace of mind. I am 60 years young and use a cane, recently I started using a quad cane for more stability. You didn't mention whether you use any aids. If not, and are having difficulty walking any distance, you may want to consider a rollator. There's some really nice ones out there, with seats and baskets. I'm going to get one also. Try to exercise for strength and balance. Keeping muscles strong will help. I do a lot of floor exercises using light weights, as I can't fall if I'm already down...,ha! I also stretch, as my muscles get so tight. If thats too difficult, you can also exercise while seated in a chair. Google exercises for strength while seated (you can Google exercises for disabled, whatever). For balance, I ALWAYS hold on, as I too have taken some pretty nasty falls, although NOT while exercising! I do things like stand on one foot for as many seconds as I can, and then the other one (Google exercises for balance). Of course, if you have a doctor, always talk with them before starting any exercise program. Also, physical therapy (physio) may be helpful, as I've done it before, and it helped me. I try to eat as healthy as possible too (lots of veggies and fresh fruits), as it makes me feel better physically and mentally (more clear-headed). I apologize for my long-windedness, just trying to be helpful! My best to you..., ;o)

  • if ever i have a problem i speak to my ward councelor or mp the get the propper facts on dla and such like hope that helps

  • Hi Modern1!

    As it happens, last week I was talking to someone at our Ataxia Centre,

    specifically relating to what our rights are and what we are entitled to.

    It was just a brief chat but I realised how little the average person ( me)

    actually knows! xB

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