MS takes body on an uncertain ride
Customized bike simulates symptoms of the debilitating disease
It looks like any other road bike, but there’s nothing normal about this gleaming red and white twowheeler.
Why does your foot keep slipping off the pedal? What’s that wobble in the wheel? Are those ball bearings digging into your palm?
It takes just a few minutes aboard it to know what it’s like to feel betrayed by a machine you think you can trust. It’s called “This Bike Has MS” and its designers have deliberately loosened bearings, misaligned the seat, buckled the frame and sheared off gear teeth to simulate the disorienting effects of multiple sclerosis.
It’s a feeling Caron Adams-Hendry knows well, but in her case it’s her own body that betrays her.
Adams-Hendry has lived with MS for 18 years and is ambassador for this weekend’s 29th annual MS Bike. The two-day, 200-km ride from Metcalfe to Cornwall and back has attracted nearly 600 riders and is expected to raise more than $500,000 for MS treatment and research.
It’s Caron’s 14th ride and holds a special place in her life: It’s where her husband, Mike Hendry, proposed to her, carrying a ring box to her in his upturned bike helmet.
“After biking 85 kilometres in 30-degree-plus heat I was not looking very pretty,” she said with a laugh.
“I thought, ‘If he still wants to propose to me, then I guess he means it.’ ”
Canada has one of the highest rates of multiple sclerosis in the world. The disease affects about one in 385 Canadians and is three times more common in women than men. Its cause is unknown, but the disease attacks the myelin sheath that surrounds nerve tissue, hindering the transmission of nerve impulses. Those afflicted can suffer profound fatigue, vision problems and have difficulty controlling movement.
Adams-Hendry, 54, was diagnosed when she was 36. She suffers continual bouts of remission and relapse, roughly every month.
She and Mike had been dating for just a couple of weeks when she made the scary decision to tell him about her illness.
“It’s tough. I experience it all the time, even in jobs. You wonder when you tell someone, is it going to change things? But I was getting feelings (for Mike) and I wanted to give him an out.
“He decided to stay and see what the journey was going to be like.”
“Of course it was shocking, so I started to do research,” Mike said. “I went to the internet and you get scared because you see worst-case scenarios. But we decided, ‘Hey, let’s live this out and see what happens. Let’s not worry about tomorrow, let’s live for today.’ ”
Research has led to enormous advances in treating MS, but there is still no cure, said Kristin Harold, regional director for Eastern Ontario of the MS Society.
“There used to be not much hope. If you were diagnosed there were no treatments. But in the last 20 years, particularly in the last 10 years, there’s more treatment. There are drug therapies. People are living better with MS.”
One treatment, pioneered in Ottawa by a team including Dr. Mark Freedman, involves stem cell transplants. Freedman is taking part in this weekend’s ride and will deliver a speech to participants.
Adams-Hendry has lesions in the area of her brain called the pons, which affect the right side of her face and her left torso. During an attack, it causes her to slur her words and can cause extreme fatigue — “like I could just put my head down on my desk and be asleep in five seconds.”
Sometimes it feels like her left arm is carrying a 10-pound weight or she senses “bubbles” racing up her left leg, like a crawling spider. She has to be careful walking as her left leg can unexpectedly “drop” on her.
“I always carry a supply of BandAids for when I fall,” she joked.
Mike has learned to live with her condition.
“I have a habit of tripping and falling down the stairs,” she said. “He used to come running, saying, ‘Oh my God! Oh my God! What did you do?’ Now he just calls out, ‘Are you OK?’ He’s learned to chill.”
One overriding fear for MS patients, is the uncertainty of how the disease will progress. Drugs are helping Adams-Hendry and she feels healthy and strong. But she knows that with MS, that can change overnight.
“I have have friends who were diagnosed and within three years required 24-hour care,” she said. “There is that uncertainty. Mike and I have adopted the philosophy, ‘You know what? We’re doing it now.’ (MS) could at any time decide to kick me in the butt. We just have to learn to live with that.”
The Ottawa MS Bike departs Saturday at 8 a.m. from the Larry Robinson Arena in Metcalfe. “This Bike Has MS,” which is on a national tour sponsored by drugmaker Roche Canada, will be available for participants to try out.
Particularly in the last 10 years, there’s more treatment. There are drug therapies. People are living better with MS.