Living with Dystonia: Finding Hope through Community

A community of people putting pieces of a puzzle together.

Jackson Mooney’s journey with dystonia began with a diagnosis before he'd recognized the symptoms.

“I had had a C5 nerve root for which I was referred to a neurologist. While he examined me, he asked why my head turned when I closed my eyes,” said Mooney. “He immediately referred me to the Movement Disorder (MD) Clinic at the Glenrose Hospital in Edmonton.”

Mooney’s symptoms appeared gradually, progressing over 15 years until 400 units of prescribed neurotoxin was no longer sufficient to provide relief.

“I decided to opt for Deep Brain Stimulation (DBS) surgery in early February 2014. Initially, I had very little relief from the surgery. In fact, when the unit was turned on, my body mimicked symptoms of Parkinson’s Disease,” said Mooney. “Despite some gradual benefit from the DBS, I found I could no longer work in any concerted way and had to shut down my business.”

Over 50,000 patients in Canada suffer from dystonia, a neurological movement disorder that affects the nervous system. Abnormal signalling from the brain causes muscles to tighten and twist involuntarily. There are several forms of dystonia, and dystonia may be a symptom of many diseases and conditions.

Mooney is actively involved with the dystonia community; with his brother, he established the Jackson Mooney Patient Grant in 2017, to help those living with dystonia obtain the education or retraining they need to pursue a new career while living with dystonia. More recently, with the encouragement and support of Dr. Silke Cresswell, Mooney has been involved in a patient-centred focus group in support of the new BC Brain Wellness Centre at the Djavad Mowafaghian Centre for Brain Health.

For Mooney and others in the dystonia community, the greatest need—aside from improvements in awareness and treatments—is to connect with others.

“I have met very few people who have dystonia,” said Mooney. “When I moved to Vancouver, I wanted to connect with others in the community. By doing this, I gained a great sense of relief in knowing I was not alone.” Mooney joined the Vancouver Support Group for dystonia, which he co-leads with his friend Robin.

“We shared tears of relief and joy when we first connected,” said Mooney.

The 2019 Vancouver Dystonia Symposium takes place on November 2, 2019, at the Ponderosa Commons North Ballroom (map) from 9:00 a.m. until 5:00 p.m. For Mooney and others living with dystonia, making connections at support groups and symposia is of critical importance to their wellbeing.

“Speaking for myself, I want to meet as many people as I can at the symposium. This symposium will help you to better understand dystonia and will provide the chance to meet so many wonderful people from the community,” said Mooney.

Symposium guests and speakers include Dr. Cresswell, as well as Casey Kidson (Founder of Dyfying Dystonia), Dr. Martino (University of Calgary), Catherine Chan (Physiotherapist), Natasha Vaz (Wellness), and Disability Alliance BC.

To register, visit dystoniacanada.org/vancouversymposium.

The Dystonia Medical Research Foundation (DMRF) Canada is the only organization that is dedicated to supporting the dystonia community in Canada. If you or someone you know is struggling with dystonia, you’re not alone. Please visit www.dystoniacanada.org to find out about resources, research, and support. Watch: dystoniacanada.org/video