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Hi Robyn,

I think that is a great idea. We need to really bring attention to Dystonia as a whole I can’t see many places which are doing so other than this site and the brain foundation within Australia.

I’m of the believe it needs more media attention and potentially contacting media outlets to see if they’d be interested promoting awareness around the disease.

This is a question for all,

What current treatments are you undertaking? I’d like to hear because I’m currently looking at alternatives given the recent top-up botox injections haven’t helped, along with the upped dosage of Artane.

The only treatment that is working for me right now is Diazapem (Valium) unfortunately but in larger doses which is really distressing even though it doesn’t impact my work, it is more of a concern from my GP that I am taking such high doses to stop the spasms, so I am assuming he will be reluctant to prescribe them to me until I can get another appointment with my neurologist which I’m waiting to hear back.