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Reply To: Progressive ataxia

#30496
Sarah-Jane Lewis
Participant

Just to add to these good comments –

It’s worth finding out what input she’s already had but it sounds v appropriate to seek more help more quickly if she is struggling … 

You can achieve a huge amount with progressive ataxia, intensive therapy / strategies / postural work with PT / work adjustments etc. depending on need. There’s often more that can be done than the NHS is able to provide. 

There’s also growing evidence on specific therapies (for SCA) and drug trials that can be considered. 
I’ve known a gentleman with SCA1 for about a year, working on identified goals. Such as doing chunks of intensive work or strategy based bits or joint PT work, and he wants me to monitor objective change alongside his PT as he begins new drug trials. 

Just some thoughts!!