One day when Nana was about 14 sitting in class, her head suddenly began to shake. After years of trying to hide it from her peers and beginning to drink alcohol to calm the shakes, she was finally diagnosed with dystoni when she was 18.
Dystoni (dystonia in English) is a neurological disease whereby the brain sends erroneous signals to muscles to spasm or react involuntarily. It can affect different specific parts of the body, such as the neck or eyes, or it can affect the whole body, as in my father-in-law’s case.
He had an operation where they inserted some nodes into his brain which change the brain signals so his muscles behave more normally. Before the operation he was largely confined to a wheelchair and couldn’t speak as the muscles in his throat were so tight. Now he goes sailing on his boat and came out bush with us on a week’s bus tour in Australia. It’s very cool after all the William Gibson I once read to now know a real life cyborg.
Anyhow, I am proud to present these short films we have made about Nana and Birgit to spread the word about dystonia. Since the symptoms are so different and the condition is not very well known, it can take a long time for patients to get a diagnosis and support.
So please send these videos out, upload them to your facebook etc and especially send them to anyone you know that is a doctor or optician, and any of your loved ones who might be suffering some of the symptoms of dystonia and don’t know it.

