Living With Dystonia
Coping well with dystonia may require more than treating the physical symptoms.
Dystonia often impacts every aspect of a person's life, and learning to live with dystonia can be a profound adjustment. Many people with dystonia describe the process of diagnosis and everyday coping as riding a rollercoaster with dramatic ups and downs: there are setbacks and celebrations, challenges and victories.
Living successfully with dystonia is possible. Nearly 40 years of serving the dystonia community have revealed that the following factors contribute greatly to a person's ability to live as well as possible:
- Seek out the best medical care. Start here to begin locating a physician.
- Educate yourself about dystonia and treatment options.
- Develop a multi-layered support system including local support groups, online resources, friends, and family.
- Check out coping articles from past issues of the Dystonia Dialogue newsletter.
- Seek out the services of mental health professionals, if needed.
- Investigate complementary therapies.
- Get active within the dystonia community.
- Stay informed of DMRF events, news, and activities by requesting the monthly eNewsletter and/or joining the mailing list.
- Contact the DMRF at 800-377-DYST (3978) or firstname.lastname@example.org for individual assistance accessing resources and creating your support network.
Mother and daughter Rebecca Sharp and Virginia Hornsby talk candidly about how dystonia has impacted their family since husband and father Tim Hornsby was diagnosed. The family founded and leads the Dothan, Alabama Dystonia Support Group and has organized Dystance4Dystonia 5K events to promote awareness and support of the DMRF.
Guitarist and composer Billy McLaughlin talks about his experience with dystonia and the Musicians Dystonia Summit that took place March 9-10, 2012 in New York, New York. Billy is the DMRF's Awareness Ambassador and ex officio Board Member. He also co-leads the Minnesota Dystonia Support Group.
To view additional videos about the work of the DMRF, visit our YouTube channel at: http://www.youtube.com/facesofdystonia
Accelerating Research & Inspiring Hope
The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.