What is your name?
Lieva Van Langenhove
What are the benefits of working within a patient organization?
The dystonia association offers recent information about symptoms and treatments and recent advancements. In Belgium there is a good link with academia, so we regularly can meet researchers wanting to explain their work and talk with us about our needs and feedback on their work. Their interest in dystonia is inspiring and motivating.
But most of all during the physical and online activities I get to know so many nice people in similar situations, I can share my thoughts and challenges, they understand and share suggestions and experiences.
What keeps you motivated?
Dystonia has become part of my life. My family and friends don’t notice anymore. I have a visible tremor, but I decided not to bother about it.
Every two weeks I visit my physical therapist for exercising and relaxation.
Overall, I’m not in pain and limitations are few. So in a sense I’m lucky.
What makes you frustrated?
What is frustrating me most is the long waiting times to see a neurologist. I was lucky, I was diagnosed right away, but I hear from other people that it took months or even years to get the correct diagnosis and this must be very frustrating.
