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. At times my foot would also rotate, and a couple of times the whole leg ‘locked up’. The original thought was that I would need the tendons of my left foot lengthened, but a foot surgeon told me a shortened tendon was not the cause. He then explained that the part of my brain that controlled my movements was misfiring; forcing my toes into these twisted and contorted positions. My foot was in plaster for 4 weeks to try and ‘retrain’ the brain .This was not successful and I was eventually referred to a Neurologist specialising in Movement Disorders. I was diagnosed as having Focal Dystonia (affecting only one part of the body) of the foot, in June, 2012. I was very lucky to be diagnosed in about 6 months. During this time I had 3 MRIs, left foot, brain & spine, to eliminate MS, tumours and other degenerative conditions, as a possible cause.
I was very frustrated until I had a diagnosis, and I was restricted in a lot of what I could do. The big toes are vital for balance. It was difficult to stand for any length of time, so most daily tasks were difficult or sometimes impossible. Driving the car was limited, particularly at times when pain was an issue. At times, my husband had to come home from work to help with showering and breakfast. I found it annoying to have to rely on other people for transport and for the daily tasks that I had done all my life.
After diagnosis, I discovered that people had never heard of Dystonia and they could not understand the problem. I found the Australian Dystonia Support Group on Facebook. This is a closed Facebook group for Dystonia sufferers and their immediate families. Discussing my problems with others having similar problems was extremely helpful, both for understanding and for knowing I was not alone. It also showed me that there were many other Dystonia sufferers who were suffering far more than I was.
I have trialled various treatments with differing results. The current regime of medication, Botox injections, physiotherapy and massage is keeping my symptoms under control, most of the time.
I have given presentations about Dystonia to several local groups. I would like to keep spreading the word about Dystonia and its impact on my life, and I hope this leads to raising funds for Dystonia research grants, through the Brain Foundation.