5 things that changed my life with dystonia


This post was written as part of NHBPM  – 30 health posts in 30 days

The very first thing that has changed my life as a patient was the complication of focal dystonia. I have writer’s cramp since my childhood and 38 years after the disease began to worsen considerably.
My hands started to get twisted, and my arm stiffened with a sulpination movement. I can not write, I type with difficulty and I have a problem with specific tasks such as browsing a book, pick up something on the table, handle cutlery and  things involving fine psychomotor. I have dystonia of the upper limb as well.
Before, my greatest difficulty was to study and finish my degree in psychology. Today, the main difficulty is to continue working without being able to write or type. Finally, living with dystonia.
The second important thing that has changed a little my life has been an off road motorcycle  I bought. I need it to work. I drive about 60 km on a dirt road to reach one of my works, once a week. I was undecided if I bought the yamaha motorcycle because of focal dystonia, but I was surprised when I started driving the motorcycle, despite the difficulties because of my arm, I began to notice an improvement in the arm and hand.
A third good thing that happened to me in recent months has been the coordination of the Center for Psychosocial Care (CAPS)  for people with severe mental disorders. I coordinate this center for over a year even with writer’s cramp and  upper limb dystonia.
A fourth thing that has happened and helped me a lot is the practice of tai chi and acupuncture. These practices have given me a lot of energy and willingness to work even with dystonia.
And the fifth and final one good thing is that in my work I have always found people who help me to write because I need to write a lot in my work as coordinator of the CAPS  that is a public health service in Brazil and in my work as a psychologist. I can no longer write because of writer’s cramp.


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