What is your name?
My name is Sandra Valenzuela. I am 51 and I am Argentinian but I have been living in Italy since 1992. I am a classical and Spanish dance teacher but due to dystonia I could not work as a professional. During my last years of high school I realised that something was wrong with me. My hands started shaking and it was difficult to write. I also was ashamed in social situations.
What are the benefits of working within a patient organisation?
The same year I was diagnosed with dystonia I became a member of ARD (Associazione Italiana per la Ricerca sulla Distonia) and then a board member. Taking part with ARD allows me to help other dystonia patients, I feel as well helped and not alone. Participating in ARD gives me the opportunity to know more about dystonia and to meet patients and Medical Experts.
How do you like spending your free time?
I love my job as a waitress because I feel it gives me strength and I feel I am able to do it well enough. In my free time I like taking a walk, cycling and reading.
What keeps you motivated on the tough days?
On the tough days I try to do things that keep me joyful and calm. It fills my heart talking to my nephews and my niece in Argentina and thinking that seeing them soon will help me to overcome difficulties.
What makes you angry or frustrated? I do not usually get angry, I keep calm and I let negative things pass. I do not like superficial and egocentric people as well as unkind and arrogant doctors. I feel I am a positive person and take life events in an ironic way, hoping changes will arrive for the better.
