Walk and wheel to cure Dystonia

BY KEITH LACEY

It's still considered a rare disease, but for 50,000 Canadians, the crippling disorder Dystonia is a bitter reality.

Simple everyday tasks such as talking, blinking, swallowing, writing and even walking can become much more difficult and often impossible for those who suffer from the neurological movement disorder.

On Sunday June 11, numerous sufferers from Greater Sudbury and approximately 50 family members, friends and co-workers will again gather at the Howard Armstrong Recreation Centre in Valley East (4040 Elmview Dr.) for the 9th Annual Walk and Wheel for Dystonia Medical Research.

The event has raised close to $50,000 in its first eight years and local organizer Mary Guy, who was diagnosed with the disease 10 years ago, is hoping several more thousands will be raised on Sunday.

Dystonia is the third most common neurological movement disorder after Parkinson's Disease and tremor. It affects persons of all ages and backgrounds, said Guy.

There is no cure, only treatments that include drug therapy, Botox injections and several types of surgery.

Guy herself has to endure more than two dozen Botox injections every three months in order to reduce side effects such as a trembling jaw and rapid eye movement.

"It doesn't kill us, it just makes life very aggravating at times," said Guy. "Taking my injections allows me to function and I can drive a car, but not very far and I can put in some work at my husband's law firm, but I've had to give up tennis and some other things I used to really enjoy."

The gene that causes generalized Dystonia was uncovered about five years ago, but scientists have yet to unveil a cure or treatment that can eliminate symptoms for those who have had the disease for some time, said Guy.

Common symptoms include muscle spasms near the eyes, neck, hands and lower limbs.

Sunday's Walk and Wheel event kicks off with registration at 9:30 am outside the Howard Armstrong Recreation Centre with participants asked to raise pledges.

Participants will walk or wheel from the centre to the nearby Hanmer Valley Shopping Mall and will be asked to repeat the course twice, which covers approximately six kilometres.

Numerous other communities across Canada are holding similar events this week, said Guy.

All money raised goes directly to research to try and find a cure, she said.

The Dystonia Foundation was founded in Canada in 1976 from Samuel and Frances Belzberg of Vancouver, after their daughter was diagnosed. Dedicated to serving the needs of all persons affected and their families, the foundation has grown to 35,000 members across Canada and the United States.

Events like this are crucial in not only raising money for research, but also awareness and education, said Guy.

Anyone wishing to support a good cause is asked to come out Sunday morning.