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Hi Everyone. I am currently in Germany having two weeks of follow-up physiotherapy and massage for my cervical dystonia. My form of cervical dystonia is rare, and I was told when I first came that it was harder to resolve than the usual forms of cervical dystonia and would take longer. It involved a slow turning of the head to the left whenever I shut my eyes or lay down, or rested my head against the back of a chair. Sounds pretty mild compared to what a lot of people have to endure. But try falling asleep when you head won’t lie still, or goes into a cramp while your face is buried into the pillow! I’ve been doing my exercises and having frequent massages since my first visit here in 2015. I’m absolutely thrilled with my progress and can say the head turning is now so weak I hardly notice it. It’s only annoying if I get really stressed.
I’ve made a commitment to get this treatment available in Australia, somehow. I’m talking to my neurologist, Dr Fung, at Westmead who has been surprised and very interested in my progress. He currently has no means of getting a research project underway, but I’m going to work on it once I am back home. It would be ideal for a physio who wants to do a PhD. but they would need backing from a neurologist or neurology clinic. Most physio’s only see one dystonia patient in their entire career. Some never have experience of it. So a program would need to be set up in a hospital or clinic where many dystonia patients can benefit. If a rigorous study could be done, then there might be a chance to train more physio’s around Australia. It doesn’t take long for an experienced physio to learn the ‘Cross Method’, but there would need to be ongoing contact with the people here as they say every case is different and the exercises and massage need to be tailored to each individual. Hundreds of patients have now been successfully treated in Germany and Europe, and for those who are German citizens it is covered by their equivalent of Medicare.
It would help as a start to raise some awareness of this program, so mentioning it to your neurologist would be good. He/she will be sceptical, as they should, but I want to raise the possibility that there is less invasive treatment than botox, and that cervical dystonia can no longer be described as incurable in every case.
