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Ataxia Support Network

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#1

Hi
My partner has thought for the last 3 years he has spinocerebellar ataxia but after more tests we’ve been told it looks likely it’s a rare freidreichs ataxia, you always think of the questions after you’ve left the doctor but which condition out of the 2 is worse does anyone know? What sort of future do we have with this latest condition? If anyone knows please will you tell me what we can expect? I don’t want it sugar coated just the blatant truth.
When I nursed in mental health some years ago now I cared for someone with freidreichs and he was awful, very stiff and wheelchair bound and couldn’t communicate is that what happens after a time? I think it’s that pic in my head all these years that scares me.
Thankyou


#2

Live life for today Julie,,won't help any of US with any type of Ataxia to worry bout' the future..It is what it is!

Be strong for your partner,much love..Ozzy...maybe some answers in 2016?


#3

Julie, sometimes even a Neurologist is hard pressed to say which is the ‘better’ outcome. It’s always best to try and see a Neurologist who specialises in Ataxia, and if possible ask the GP to refer you to your nearest Ataxia Centre. Even if your partner already sees a Neurologist, you can still ask for referral, a second opinion if you like.



Ataxia Centres have multi disciplinary teams, a one stop shop. That might be more helpful.



If your partner is finding pain relief a problem, and the GP can’t prescribe anything further, ring your Neurologists secretary and ask for an appointment.



Carers also need support. See www.facebook.com/groups/caregiversupportcommunity



This is part of Ben’s Friends. You should be able to get good advice and support.



:slight_smile: xBeryl


#4

ALL ataxias are incurable, give you whatever symptoms it wants within that type and progresses at whatever rate it wants.

This link might help.

http://www.ataxia.org

Research it and keep moving. Exercise (any kind) seems to help. Do whatever he can... walk, ride bike, swimming, yoga, pilates.


#5

They’re many types of spinocerebellar ataxia and some are worse than others. Fredrick’s Ataxia is just the name given to that specific genetic disease which is an autosomal recessive acquired ataxia. These are all genetic diseases caused by a triple repeat expansion in the DNA causing a mutation. Age of onset plays a role in the prognosis with these types of ataxia, early onset ataxia typically displays a fast progression in disability and late onset is seen to cause slower progression.


#6

Hi Julie:)

For further reading about Friedreichs Ataxia see www.rarediseases.org and search alphabetically.



Also, the Friedreichs Ataxia Research Alliance (FARA) provides up-to-date information about therapies in development and current clinical trials on their website.

See http://www.curefa.org/pipeline.html



:)xB