cerebellar atrophy

[kaz82]

i have a rare condition called cerebellar atrophy  basically its a condition that affects your balance   coordination and speech it runs in my family on my mums side i have been trying to get onto personal independent payment (PIP) because i have been struggling to get to work and when ever i do go i am sent home i got refused so i am appealing it but think i will be refused again all because i can look after my self i was not saying i cant but i really do struggle at work is there anything else i can try also the older i get the worse it gets was told years ago that my family was the only one in Scotland to have it if there is anyone else with it would love to hear from you x 

[wobblybee]

Hi Kaz😊

Log onto ataxia.org.uk and click on Supporting You.  It should take you to a list of Ataxia Support Groups😊

Although there may not be one in your vicinity, contact your nearest😊

Or, you could contact AtaxiaUK helpline.  The number is on the website😊 xB

[Pheobe13]

My partner hAs progressive cerebella ataxia and now msa we have got pip but we had to appeal we then got motorbility and he claims esa he struggles can't barely walk now speech not good and everything else that goes with this disease I am his carer but I still  work 13 hours a week for best advice like we did is citizen advice they did everything for us our home now is being adapted as well which will help in the future to enable him to stay in his own home by the way my partner is 58 and was diagonosed Feb 2015 hope this helps 

[kaz82 in reply to Pheobe13]

Yes it does I am not as bad as that but I do know it effects males worse than females my uncle is a lot worse I am 35 was diagnosed when I was 8 my mum had to stop working when she was in her 30 and got on to disability I was toled when I went for assessment that they would look at my condition as if its epilepsy but it's nothing like it I also think it was refused because I don't need a carer if  the appeal refused is refused think I will try citizens advice next thanks for your advice x

[wobblybee in reply to kaz82]

If you need it, AtaxiaUK offer an advocacy service 😊xB

[xray25]

google pip this should help

[PGee]

Dear Kaz,  I think that you better contact the Ataxia helpline and see if they can give you some advice.   In Bristol they have a Welfare Dept  in the local council and there are people there that can help you fill in the forms.  The job centre also seems to have the details of either job clubs that can help or other organisations.   I hope that this is useful to you.     Let us know how you get on!  

[Hidden]

I too was diagnosed with Crebellar Atrophy kaz. My diagnosis was in 2010. Since then my condition has slowly progressed. I get DLA and awaiting my dreaded medical re-assessment to be transferred to PIP. I am also on ESA and my wife gets carers allowance. Carers allowance is a means tested benefit which means that my wife is only allowed to earn so much (Think its about £110 per week?) Good luck with your appeal.

[kaz82]

Thanks everyone one for your advice has been very helpful x

[cwarren]

Hi- I have cerebellar ataxia Type 6-I am coming up to 65. I have been advised to go to citizens advice to fill in my form or even to the job centre. It is the manner in which you fill in the form which affects your claim. Hope this helps....

[kaz82 in reply to cwarren]

Yes thanks it does no one told me anything I just kept getting sent home from work every day and unfortunately my doctor had left hospital so I kept seeing stand ins who don't really no anything about my condition so decided to try signing up for it my self been of sick for 6 months going on 7 if I don't hear anything by end of month I'm going to have to try going back to work it is good to hear more people have this condition when I was diagnosed was told we were only family in Scotland with it was diagnosed when I was 8 now I am 35 but I do know it affects males worse just hope I hear back from my appeal soon

[cwarren in reply to kaz82]

I live in Sheffield and I insisted on having the same specialist as my dad, from whom I inherited this condition. I will be seeing him soon and he may know some specialists in Scotland. Let me know if you want me to ask him. He is VERY VERY UP on this illness.

Chris

[kaz82 in reply to cwarren]

I have always seen the same doctor as my mum she saw one about a month ago she said was very good and we think is taking over from our doctor had an appointment for July but been changed to November thanks will let u know

[cwarren in reply to kaz82]

My specialist is a consultant who is involved in research-he

sees me twice per year automatically, arranges nurse-led appmts in between, and they arrange speech therapy and occupational therapy.

Chris

[kaz82 in reply to cwarren]

I am not as bad as that my speech only goes when I have an attack 

[Stu46 in reply to cwarren]

Where are you from Cwarren/Chris

[february]

Dear Kaz82, I live in the US in the State of Michigan! I hope eventually you will get your benefits, as I know how debilitating ataxia is! My best to you...,;o)

[trac67]

I have similar symptoms although I have been told I suffer from Cerebellar Ataxia. I can no longer cope at work ( mainly for H&S reasons) so I am not sure if this made any difference when I applied for PiP certainly I had no issue with an award al be it the lower fixed rate, it did take a few months although it was backdated to when I applied. Because I am limited in walking I am deemed disabled, I have also been supplied a walker, wheelchair for longer trips and grips fitted at my front & rear doors by my local council/welfare department, every little helps! Keep trying and don't take no for an answer, be economical with the truth as this may help, you have paid taxes so should be entitled to some help!

[kaz82 in reply to trac67]

My GP gave me a letter explaining that it would be bad for health and safety and was still refused just hope I win my appeal 

[wibblywobbly]

Hi,

I think when you fill the forms in you must describe how you are at your very worst.

it's in our nature to try to make the best of things so it's quite difficult to do.

I always feel really down after having filled forms in.

good luck 🍀

Alison

[kaz82 in reply to wibblywobbly]

Thanks for ur advice from what I can understand because I can look after my self it was refused 

[wibblywobbly]

I'm not in the UK but in France. I receive benefits there. I can look after myself too. But it's all exhausting. For example I can shower myself but afterwards I have to sit down to recover, and if I wash my hair it's even more tiring. I can cook for myself but I have trouble cutting the vegetables. And so on. This is all taken into consideration too.

try to think of everything.

xx

[Brain2]

Hi I have this as part of my neurological impairment and it is genetic and I live in Scotland too. This only showed up with a CAT scan and my consultant listed it as one of my health problems in a letter. This as accepted by the PIPS panel and Esa as serious. It depends as well whether it is affecting mobility. I've just been measured up for a wheelchair.

[Chunguz]

Hi I also have cerebellum atrophy