Victor Perrin says it’s important for him to live in the moment, but he’s hopeful a cure for ALS can be found in the future.
Perrin, 57, who lives in Royalwood, was diagnosed with the debilitating disease in 2008. Once an active man who enjoyed canoeing and running, now he is wheelchair-bound as his muscular strength declines.
Amyotrophic Lateral Sclerosis — also known as Lou Gehrig’s disease, after the former New York Yankees baseball player — is a rapidly progressive fatal neuromuscular disease, characterized by degeneration of a select group of nerve cells and pathways in the brain and spinal cord, which leads to a progressive paralysis of the muscles.
There is no known cause or cure for the disease. Most sufferers die within two to five years, said the ALS Society of Manitoba’s events and volunteer co-ordinator Brian Campbell.
"In a nutshell, ALS breaks down the messages from the brain to the muscles. Most sufferers die within five years, but in some cases it can be a few months," Campbell said.
"In most cases, it doesn’t impact the logical mind and the intellect. Of course, there are exceptions to every rule, and Stephen Hawking might die of old age before ALS kills him," he added, noting ALS is "more common than people think."
The society provides advocacy and medical support and also runs Brummitt-Feasby ALS House for some of its clients.
To help raise awareness and funds for research, the Legacy Run for ALS will be held on Sat., Oct. 13 at 9 a.m. at St. Vital Park Duck Pond.
"I started noticing symptoms in 2005, as I used to be quite active. I was doing archery and I was having more and more trouble pulling on my bow. I was also having trouble lifting my canoe, so I started getting quite concerned," Perrin said. "My hands were affected first, then my arms became weaker and I couldn’t write."
Eventually, after numerous tests and a visit to the Mayo Clinic in the U.S., Perrin was diagnosed with ALS following a process of elimination.
Since his diagnosis, Perrin has faced some challenging times, but with the support of his wife, their seven children, family, friends and the ALS Society of Manitoba, the former school principal said he lives for the present — with the help of a dedicated team of homecare workers, made up of former colleagues and childhood friends, who rotate on a daily basis.
"My friends and family organized a benefit social, which raised $10,000 and the ALS Society has come through with all kinds of equipment," he said, noting his passion for the Montreal Canadiens. "There is ongoing pain, it varies, but you learn to live with it."
Event organizer Tricia Yerex was motivated to take action after her husband’s aunt died of ALS in 2011.
"It was such a shock, as it was such an unknown entity," Yerex said.
"For me, the event is a statement that one person can make a small contribution and make a difference, whether it’s by donating, participating or volunteering."
For more information, or to register, email firstname.lastname@example.org or visit alsmb.ca.