Dystonia Life Stories

To give you an insight on what it is like to live with Dystonia or how it impacts people who have this condition click on the images below to read each individual’s story. 

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Suzanne's DBS Story

Suzanne’s DBS Story

You may hear drills, I’m not sure. Although not unconscious, you are heavily sedated as we cut through your skull” said the anaesthetist. Okay, the Deep Brain Stimulation Surgery Admission Pack stated this…


Founder of the ADSG and was a teacher, involved in school committees and other fundraising events. Was known as the ‘Social Butterfly’ and that all changed when diagnosed with Blepharospasm and Oromandibular Dystonia…

Living with Dystonia

Living with Dystonia

At the time of my diagnosis with cervical dystonia (dystonia of the neck), I was the principal bassoonist with the Adelaide Symphony Orchestra, had performed as a soloist on TV and radio both in Australia and overseas…

A Turning Toe! Dystonia

A Turning Toe

My problem started in 2012, with a sudden pain in my left foot, for no apparent reason. This resulted in the toes of my left foot twisting upwards…

Zizi’s journey of healing

I am the carer for Zizi who has trauma induced segmental dystonia. I think that’s the best way to describe her medical condition…


‘Can’t hold my head up!’

As a Diversional Therapist I often had to pose for photos. I discovered I had a rather strange problem. ‘I couldn’t hold my head up!’…

Valium! No Way! Dystonia

Tremors, No Way!

I was diagnosed with Cervical Dystonia in 2007. I was not diagnosed until the condition progressed to head tremors…..

Brooke's Story! Dystonia

Brooke’s Story

Brooke has Generalized Primary Torsion Dystonia and underwent Deep Brain Stimulation (DBS) surgery…

Dystonia a Dragon Curse!

THE DRAGON creeps, unseen, into the deep caves of Basal Ganglia, the uncharted region of my being. It licks its toxic claws…