Does "National Health" - a system that spends millions on ? - really care about Ataxians ?

[jurgen]

[charismatic]

I think they might be a bit dismissive of Ataxia since there seems to be no known cure - so it would seem to me a question of how well the sufferer can manage their own case (perhaps during an inevitable deterioration of the condition.

I am sorry if that's a poor outlook , but it would seem a realistic one to me.

[neta in reply to charismatic]

Like I told Iain today, the head of Bloomberg Foundation in NYC, is committed to putting millions into finding a cure for ALS-- another incurable neurological disease. There needs be a name and a face behind ataxia. Nothing will happen by being quiet. Neta

[Bpurce]

I agree!

And my wife would!

[diamond1]

Hi Jurgen,

I can't fault the care I am given by my neurologist, neurology nurses at my local Hospital and my GP with associated problems with CA .There is no known cure at the moment for Ataxia but if I struggle with an associated problem related to Ataxia I can phone the district Community Neurology team and someone comes to visit me at home to reassure me or refer me on to the appropriate person for some treatment which encourages me to deal with my Ataxia to the best of my ability. There is help out there, perhaps make enquiries about your local neurology community team via your GP and they can really help if only they talk with you with problems associated with Ataxia which can then help you deal with the disability and have a happier life.Lets hope some day enough of us will get this disease recognised to encourage enough money to be put in to more research for a possible cure. Take care, keep chatting, it helps.

Diamond 1

[grumpygranny]

I am concerned that not enough monies are going into research for a cure rather than for treating the symptoms of Ataxia. Is this true?

[Deoch]

I think too much money is going into research on a disease that has no cure and not enough is done to improve the quality of like of ataxia sufferers.