It took doctors eight months to determine what was wrong with James Culley and the news wasn’t good.
Culley had been experiencing slurred speech, presumed by the family to be a side effect of a mild stroke. In September 2007, he was diagnosed with something much worse: ALS, also known as Lou Gehrig’s disease. Culley was diagnosed with the bulbar form of the disease, typically more aggressive than limb onset ALS. Bulbar affects the mouth and throat muscles first, making speaking and eating increasingly difficult.
Culley has progressed to the point of needing a wheelchair, communication aid and a Bi-PAP machine to assist with breathing. Even as his body fails, Culley retains a positive outlook, lighting up the lives of people around him, including his sons, Doug and Gord.
“My father has shown all of us that even with a disease like ALS, you can still smile and enjoy every day you have,” says Doug Culley.
The Culleys are one of more than 1,000 Ontario families living with ALS. On June 6, the ALS Society of Ontario encourages Hamilton residents to help fight ALS by supporting the Hamilton WALK for ALS at Bayfront Park. Registration begins at 8 a.m. and the 5 km walk at 10 a.m. Doug Culley has registered a team for the walk and hopes to match the $2,000 he raised last year.
“People need to understand how devastating this disease is, not only to the person who has it, but also to the caregivers who watch ALS slowly take their loved one away,” says Gord Culley. “By participating in the walk, we have the opportunity to interact with and support other families battling this disease, as well as raise money to help each other out.”
Now in its ninth year, the WALK for ALS is the ALS Society of Ontario’s signature event and largest annual fundraiser. In 2008, more than 5,000 participants raised $1.15 million. Seventy per cent of the proceeds fund the province’s equipment and support services programs, while the remaining 30 per cent funds research towards a cure. The Hamilton walk has raised more than $750,000 since its inception. Hamilton is one of 28 communities across Ontario holding walks this year.
“The ALS Society of Ontario’s goal is to help ease the physical, emotional and financial burdens ALS creates,” says Maureen Sheahan, President & CEO, ALS Society of Ontario. “With the help of volunteers and supporters across the province, we’ve grown the WALK for ALS into our most successful and anticipated event. We ask the public to help us continue this success story in 2009.”
For more information, or to support the walk, visit www.walkforals.ca.
ALS, amyotrophic lateral sclerosis or Lou Gehrig’s disease, is a fatal and rapidly progressive neuromuscular disease affecting more than 1,000 Ontarians and their families. There is no cure or effective treatment. Eighty per cent of those affected die within two to five years of diagnosis. The ALS Society of Ontario is a non-profit organization committed to providing equipment and support services to increase quality of life and provide independence, dignity, hope and choice to people with ALS.
