Gazette reporter Arnold Lim

Cycle of Hope evokes emotional moments

Gazette reporter Arnold Lim blogs from the ALS Cycle of Hope

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/.

alim@vicnews.com

Just Posted

Skygazers spot mysterious flaming object during Sunday’s lunar eclipse

University of Victoria astronomer explains the “glowing object”

Evicted UVic student questions Saanich’s housing bylaw

Emma Edmonds had been living with six roommates, while the bylaw states you cannot exceed four

Sooke trade show targets local business

Sookrama planned for April

Plecas report: Thousands spent on trips, booze, magazines and a wood splitter

Two suspended B.C. legislature officers have been accused of ‘flagrant overspending’

Ousted legislature officials say report released to further blacken their reputations

James and Lenz say release was ‘Contrary to all principles of fairness and decent treatment’

New Canada Food Guide nixes portion sizes, promotes plant-based proteins

Guide no longer lists milk and dairy products as a distinct food group

Liberals look to make home-buying more affordable for millennials: Morneau

Housing is expected to be a prominent campaign issue ahead of October’s federal election

Canadian navy plans to extend life of submarines

The fleet has turned a corner after a troubled start

Cannabis-carrying border crossers could be hit with fines under coming system

Penalties are slated to be in place some time next year

Man accused of threatening to kill ‘as many girls as I see’

Christopher W. Cleary wrote he was angry because he’d never had a girlfriend and wanted to ‘make it right’ with a mass shooting

Canadian talent abound on newly revamped Vancouver Whitecaps squad

Lineup is full of new faces after the organization parted ways with 18 players over the off-season

B.C. Green leader calls for long-term legislature financial audit

Andrew Weaver says trust in clerk and sergeant at arms is gone

No charges in fatal police Taser incident in B.C.

RCMP watchdog concludes no evidence of excessive or disproportionate force was used by officers

Most Read