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Tuesday 17 January 2012

NEWSNIGHT...DLA


Just watching Newsnight, about DLA. Having just applied i don't expect to get the care element at the moment... but will do eventually (Stephen Hawking has 3 carers, and it's likely that I will need this type of care in the future) but for now I desperately need the mobility element of DLA.
I will soon need an adapted car if I am to be independent. It's lovely that so many people visit me (Thankyou), but to be "normal" I need to be able to get out and visit people , to go to shops, to go to the pictures/theatre/galleries,... to see my family.
I welcome a medical assessment if it would move forward the time when i get this help. I do need it. Please God I get it.
I sent my form 1 week ago... watch this space.
I have a life terminating illness ie more than 6 mths but it is definite. There is no cure. Most people survive 3-5yrs with ALS,(an exceptional few,  5+yrs.. I hope I'm exceptional! ). But who knows how much of this time will be spent with any kind of movement, and thus freedom. I take one pill, riluzole, that might extend my life by 3-5 mths.The only medication there is.
Eventually all my muscles will freeze and I simply won't be able to move, speak or swallow. So I do need DLA mobility now: to enjoy the freedom of life/movement whilst I can. 
So, yes, some people may be cheating the system, so I'm all for assessment... but please make it soon!....and   .....
HUG ME, I'VE GOT MND


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