Gazette reporter Arnold Lim and West Shore residents Heather MacFayden and Andy Harward are among 12 riders on the Cycle of Hope ride for ALS from Kamloops to Keremeos, which is scheduled to wind up today. Lim is blogging about his experience on the ride.
Karen McGinn’s speech is almost a whisper.
Amyotropic lateral sclerosis (ALS) has already claimed much of the Kelowna woman’s speech, the strength in her hands and the ability to walk on her own. The mother of three young children said she knows it won’t be much longer before the disease finally claims her.
“It is so hard because the disease, it takes so much,” she said. “I wish it would take my mind, because that is the hard part, going through each day, knowing what is coming.”
The formerly active bike rider, wakeboarder, skier and boater can longer do many of the things she loves. Now she sits and watches her family do the things she once did, waiting for this deadly motor-neuron disease that affects 2,500 to 3,000 Canadians every year to run its course.
“One of the big things is losing your independence. I gave up my drivers license a year ago and that was tough,” she said. “Getting around in the house, showering, all that stuff – everything is getting harder. I am only 42.”
The rapid progression has taken a toll on her family as well, including eight-year-old daughter Kaitlyn, six-year-old twins Emily and Tyson and her husband, Lance, who collapsed to the floor when the neurologist first delivered the news that would change their lives forever.
“I wouldn’t wish this on anybody. It was a blow, a serious blow,” he said. “We left the hospital and sat on the bench and we just cried. Anybody in our shoes would do the same thing. It was very, very scary. I kind of knew, but when it is confirmed, it’s very hard. You worry about your kids and worry about what’s ahead.”
Lance said he would take the disease on himself if it would cure his wife. He can’t, so instead he rides, purchasing a bike to join family friend Corinne Boback on the ALS Cycle of Hope Kelowna community rides (Aug.10), raising money for research to battle the incurable disease.
“I am riding to bring awareness so that maybe someday people won’t have to go through what we are going through. But selfishly, I am riding it for Karen, because she can’t and she will never be able to,” he said between tears. “Maybe someday, hopefully there will be a cure or something so they don’t have to go through what we are going through.”
Karen will be there to cheer her husband make his first ride on the bike, spending as much time with her family as she can before what she called the inevitable.
“You know, you get married and you think you’ll spend your time together, raise your kids, retire and travel… To know that is not going to happen is hard,” she said. “It’s important to make memories (now) because I don’t know how long I have. That way (my family and friends) have something to remember.”
Find out more about the ride and read other blogs by Arnold Lim at www.cycleofhope.ca/blog-post-day-1-arnold-lim/.