Oct. 6: Forum features panel of people living with dystonia

By Doug Nadvornick, College of Medicine

Potter-80SPOKANE, Wash. – The overwhelming response from students to guest speakers with dystonia has inspired an associate professor at Washington State University Spokane to organize a forum about the puzzling muscle disorder.

The free, public forum will begin at 6 p.m. Tuesday, Oct. 6, in the Pharmaceutical and Biomedical Sciences Building’s Walgreens Auditorium. Patients will be joined by neurologist Jason Aldred who will discuss the physiology of dystonia and its different forms.

“The students and I were so moved by the stories that we decided to host a dystonia forum this fall, similar to the ALS forum we’ve hosted for the past nine years,” said Nancy Potter, speech and hearing sciences associate professor.

Dystonia patient and forum organizer Denise Gibson, left, with WSU speech and hearing sciences student Emma Rae Destromp.

“Effective dystonia management requires team collaboration and is a perfect disease to educate future health care professionals on the importance of interprofessional patient care,” she said.

Dystonia originates in the basal ganglia area of the brain where messages to muscles originate. The disorder causes involuntary muscle contractions, which can lead to abnormal movements or postures, such as tilted or twisted heads and necks.

Dystonia is not fatal, though it can be painful. It can affect people of all ages. It can be inherited or caused by an event such as a stroke or head trauma. It is often treated with drugs or botox injections. Sometimes neurologists use deep brain stimulation to go straight to the source of the trouble.

Potter organized the forum with dystonia patient Denise Gibson who co-founded Dyscoveries, a Spokane dystonia support group.

“My dystonia began with a slight head tremor under stressful conditions,” Gibson said. “Then my upper body began to twist. After a few more years my voice was affected, then my swallowing, then my right hand.

“Dystonia has taught me many lessons, such as the importance of patience, a sense of humor, humility and compassion,” she said. “It has also taught me functional lessons that help me function in spite of the dystonia so I can proceed to live my life.”


Nancy Potter, WSU Spokane speech and hearing sciences, 509-368-6894, nlpotter@wsu.edu