Dystonia fundraiser to be held June 14

Dystonia sounds more like an Eastern European country than a health disorder. And like so many other diseases, conditions and disorders, the average person has probably never heard of it.

It is only when dystonia affects a friend or family member that people start to ask questions. What is dystonia? Am I at risk?

Dystonia is a neurological movement disorder that causes the body’s muscles to contract or spasm involuntarily. It affects adults and children, and it can be genetic. It can also be caused by physical trauma, exposure to certain medications or other neurological conditions. Occupational dystonia can be caused by repetitive movements. It is estimated that 300,000 people in North America have this disorder.

Dwayne Backer received his diagnosis in 1967. He was a 27-year-old member of the Canadian Air Force when a stiff neck was diagnosed as dystonia. It ended his 11-year career in the air force.

Today he is one of the people who works tirelessly to create awareness about dystonia and to raise money for the Dystonia Medical Research Foundation at the Annual Freedom to Move Walk-and-Wheel event.

The 12th annual event will be held Sunday, June 14 at the Howard Armstrong Recreation Centre in Hanmer starting at 10 a.m.

Last year, the participants raised almost $9,000. Backer collected $2,186 himself and was able to secure an additional $1,200 from Wal-Mart.

While research into the cause, cure and treatment of the dystonia continues, many sufferers have found some relief by having botulinum toxin (Botox) injected into their muscles. The toxin is a nerve blocker that blocks messages to the brain and reduces muscle spasms.

Backer gets his injections in Toronto. OHIP covers most of the costs involved and relief can last up to four months.

“I couldn’t live without it (injections),” said Backer.

Backer received the 2005 Courage Award from the Dystonia Medical Research Foundation. Despite his disorder, he maintains a busy lifestyle. He operated a downtown newsstand for many years, and currently works at Wal-Mart.

For more information about dystonia or to make a contribution to the Walk and Wheel event, phone 969-3842 or 673-1101.

© 2009 Laurentian Media Group