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.

12 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

  • The Citizens Advise Bureau should be able to tell you what you could or could not claim for. It is worth making an appointment to see them and if you cannot fill in the forms yourself they are usually quite helpful in doing this for you. There are different things you can claim, but all require a great deal of patience and energy because the forms are all long winded and repetitive, but hang on in there and it is worth it in the end. PIP, blue Badge and ESA, plus reduction in Council Tax are some of the things available to you as long as you have the time and patience to follow them through. Hope this helps.

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