Karen McGinn’s speech is almost a whisper.
At only 42 years old, ALS has already claimed much of her speech, the strength viagra sans ordonnance in her hands, the ability to walk on her own and 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, wake boarder, skier and boater can longer do many of the things she loves and said she now sits and watches her family do the things she once did, waiting for deadly motor-neurone disease that affects 2,500 – 3,000 Canadians every year to run it’s course.
“One of the big things is losing your independence, I gave up my drivers license a year ago 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. 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,” he said. “I kind of knew but when it is confirmed it is very hard. You worry about your kids and worry about what is ahead.”
Lance said he would take the disease on himself 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 on Sunday, August 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 will spend your time together, raise your kids, retire and travel… To know that is not going to happen is hard,” she said. “It is important to make memories (now) because I don’t know how long I have, that way (my family and friends) have something to remember.
Arnold Lim is a photojournalist with the newspapers of Black Press and one of 12 riders on the ALS Cycle of Hope from Kamloops to Keremeos, August 6-13. Day 5 is the ALS Cycle of Hope Kelowna Community Ride starting at Fresh Air Concept bike store at 7:45 a.m. . For more information about the tour or to check out his daily blog posts visit cycleofhope.ca