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Hi Robyn,

Many thanks for your reply. It is greatly appreciated. You and your daughter are obviously in a worse situation than I am. Two people in the one family battling the same disease must be incredibly difficult. I have done some research on DBS and it’s an option, but I am not convinced having nursed several people throughout my career who had had DBS. Obviously, these surgical interventions are always being refined and there was a TV news item a couple of weeks ago about a man with Parkinsons who had this new surgical technique at St Vincent’s in Sydney. The cost, however, like all things new is prohibitive – $30K.

Certainly reading others’ stories has been a great help since joining DNA. I live on the Central Coast in NSW and my nearest support group is Newcastle. That’s a 2 hour drive from home and driving long distances for me now is just too tiring.

I wish we could get more people interested in sharing and updating their journey with dystonia. Sometimes, I don’t think we realise how helpful sharing our stories is.

Take care and kind regards