Kathy Oikle gets a hug from her daughter, Carolyn Dominey. The Coldbrook woman has ALS, a fatal disease that attacks the neurons in the spinal cord and brain, eventually causing complete paralysis. Oikle is spearheading the efforts to hold the first ALS fundraising and awareness walk in the Valley next month. – Jennifer Vardy Little
Honouring her mother’s struggle with ALS and continuing her efforts to raise awareness about the devastating effects of the neuro-muscular disease drive Carolyn Dominey’s dedication to organize the upcoming third annual Walk For ALS.
Dominey’s mother, Kathy Oikle, was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrigs’s disease, in April 2011. She recalls how devastating the news was for her mother and her family and friends.
“It was hard, but my mom didn’t let it get her down.”
ALS is a fatal disease that attacks the neurons in the spinal cord and brain, eventually causing complete paralysis. Each year 3,000 Canadians are diagnosed and 1,000 die from the disease.
After her diagnosis Oikle set to work organizing the inaugural Valley Walk for ALS in September 2012. Dominey said the event gave her mother focus and hope.
One year later, Oickle was in hospital full time due to the degenerative effects of the disease, but she made the effort to come out for the day for the second walk.
“She was not going to miss it,” said Dominey.
Oikle passed away three weeks after the 2013 walk and is constantly on her daughter’s mind as she organizes the 2014 event, which returns to Coldbrook Village Park on Sept. 7.
“It’s a lot of work, but I want to keep it going,” said Dominey, pointing to the $30,000 that was raised in two years of the event.
“The first year we didn’t know if we would raise $500. The support we have gotten has been great.”
Also on Dominey’s mind is the news that she carries a genetic mutation linked to ALS.
“I waited till my mother passed to have genetic testing done, because she was so worried about it. Now I know.”
Dominey has no way to know if she will develop ALS in the future, but understands the reality that eight out of 10 people who carry the gene will develop the disease.
“But that means two of 10 don’t,” said the 26-year-old Coldbrook resident, who chooses to be optimistic about a future prognosis.
“It hasn’t changed the way I think. You have to live life to the fullest.”
Dominey is mulling over holding the ALS Ice Bucket Challenge during the event.
The challenge, which has recently received international attention, started when a college baseball player dared his family and friends to dump a bucket of ice water on their head or donate $100 to the local ALS Society.
The ALS Nove Scotia Facebook page reports “in the last few weeks, this challenge has drawn an amazing amount of media attention and has made people aware of ALS.”
“And that is part of my goal, too,” acknowledged Dominey, who said 60 per cent of funds raised assist people with ALS with their daily living needs. The remainder benefits research efforts.
The third annual Walk for ALS goes Sept. 7, with on-site registration at 10 a.m. at the Carquest location and the walk around the park beginning at 11 a.m.. The event will musical entertainment and a barbeque. For details, call Dominey at 902-365-2026.