Supporting each other is so important.
Three people are meeting in Cairns, Far North Queensland, Australia, on Saturday 24th February 2007 to form a support group for people with dystonia in our part of the world. I am one of these people. We are meeting over lunch, viewing the film Twisted. One person from another country other than ours will be joining us briefly by speaker ‘phone. Together, we hope to share our sorrows and celebrate our joys. As well as supporting each other, we are planning ways to provide information within our respective communities about dystonia. If you would like to share our experience please leave a comment or contact me by email at firstname.lastname@example.org so I can get back to you.
Have you ever been in a group of people but felt uncomfortable or out of place? Having dystonia feels something like that. Especially if you have not yet been diagnosed and wonder what is wrong.
Following diagnosis many of us still have moments when we feel excluded. This may be because of how we sound, look, head wobbling, hand tremor or our body twisting into awkward and painful positions. Some people have a combination of some or all of these things. There is nothing wrong with our thought processes or our intellect. Many of us experience others doubting the existence of our neurological disease and not understanding the debilitating effects we live with. This is especially distressing when some medical practitioners and other health workers imply that we are somehow neurotic or pretending to have symptoms that do not really exist. It really does happen!
Fortunately, our personal family doctors and teams of treating specialists around the world become very familiar with our experiences. They are able to offer treatment for the symptoms we have and encourage us to normalize our lifestyle. Their support is so uplifting, enabling us to learn together about dystonia.
If you would like to know more about support groups and general information about dystonia, the following links may be helpful. Although some of these sites overlap, you will find further links within each of these. Meanwhile stay safe, healthy and happy, wherever you are.
Sue Bayliss. Cairns, Australia.