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I have had CD for 19 or more years. In the early years neurophysiotherapy and botox worked well for me. At a certain point my dystonia worsened a lot and it has taken years of neurologists trying different injection approaches with botox and more neurophysiotherapy to get me back to a manageable state. At the moment I’m trying out the Joaquin Farias method in his online course. I would describe it as a combination of neurophysiotherapy exercises and relaxation exercises.
In terms of bringing awareness to dystonia in the community, I’m quite active in doing this. I agree that it is frustrating that no one has heard of dystonia and it comes with a lot of stigma and misunderstanding. My husband made a short drama film about my dystonia story, with the aim of spreading awareness of dystonia widely through the film medium. He is now working to try to get a feature film made about my story, and get it into mainstream cinemas.
The short film is available on youtube at: https://www.youtube.com/watch?v=dCapqLSkb60, Subtitled version: https://www.youtube.com/watch?v=QYMBSwxiXrM. Trailer: https://www.youtube.com/watch?v=EVl3k7BoeIs.
I’m also going to participate in a dystonia stand at a GP Education Day in September.
DNA runs a Dystonia Awareness Week on the government calendar in September and the Australian Dystonia Support Group runs a Dystonia Awareness Month in September. These both involve lots of activities to raise awareness and opportunities to participate.
Regarding work, I have had to reduce my hours to part time as part of my management of my dystonia. Avoiding strain at work and when exercising is very important in keeping my symptoms manageable. I’ve been involved in staff disability networks at work for many years so I feel well supported in my current workplace. I have experienced members of the public who I meet through my work viewing me negatively because of my dystonia, and I don’t have the opportunity to explain to them what is going on, so they act kind of annoyed and suspicious. Luckily that is only a minority of people, so I get by okay.
In terms of CBD oil, I’ve seen it mentioned a lot on the Cervical Dystonia Support Forum on facebook, run by the Dystonia Medical Research Foundation. You could join the facebook group to ask people about it, as most of the members are in America and have access to it as a treatment. The DMRF will hold a webinar on the topic on 24 July so that could also be helpful to watch.