Northern Alberta Institute of Technology

How cyclist Ross Wilson defies disease that could rob him of mobility

Unique study shows Ross Wilson is as elite as they come

In a small, dimly lit lab in NAIT's fitness centre, Ross Wilson pours all his energy into his stationary racing bike. As he digs in, head down, the room fills with the steady whirring sound of cranking pedals.

Beads of sweat form on his forehead that, along with his eyes, reveal the full force of his exertion. The rest of his face is obscured by a breathing mask fitted with tubes connected to a nearby computer.

The VO2 max test is designed to push athletes to their physical limits. By measuring the maximum amount of oxygen the body can use during peak exercise, it gives a more complete picture of overall fitness and ideas about how to improve.

For Wilson, a Paralympic silver medal-winning cyclist, the test not only helps him understand whether he's operating at peak capacity, it's a rare glimpse into the fitness of an elite athlete with Charcot-Marie-Tooth disease and whether exercise can help mitigate its effects.

"I'm in a unique position to live life to its fullest and that's what I'm trying to do."

The degenerative neurological condition leads to nerve damage and loss of function and strength in the limbs – in Wilson's case weakened muscles in his legs, back, arms and hands. Though symptoms vary from person to person, Wilson faces a gradual decline in function and possibly the need for a wheelchair.

In a sense, the 36-year-old is racing without a finish line, uncertain when his time as a competitor will run out.

"I'd much rather have a lot of great memories and experiences to reflect back on, to have my scrapbook filled with life experiences that other people are jealous of," Wilson says. "I'm in a unique position to live life to its fullest and that's what I'm trying to do."

Cycling an ideal fit

Picking up the pace In doing so, Wilson continues to defy expectations, not only as a person living with Charcot-Marie-Tooth disease but as a relative newcomer to competitive cycling.

An internal auditor at NAIT, he took up the sport little more than six years ago after losing more than 100 pounds. A fan of the Tour de France, Wilson tried cycling to maintain his fitness: it would help him keep the weight off and a new road bike was a nice way to reward himself for the gains he'd made thus far.

It turns out the sport was an ideal fit. Wilson liked pushing himself and the mechanics of cycling meant his condition wasn't a hindrance. He enjoyed going fast, leading him to competitive racing.

"If you think you can push yourself hard, as soon as you have other people around you who are pushing themselves hard, you find that extra gear. I just loved it."

Refusing to "live a paced life"

Hardly an athlete growing up, Wilson started to notice changes to his gait in his early twenties, when he frequently rolled his ankles. A neurologist confirmed the diagnosis, telling him to "live a very paced life," meaning he should avoid activity that would put too much stress on his body. Weight gain soon followed – a common complication of Charcot-Marie-Tooth – peaking at 280 pounds before a lecture from his family physician pushed Wilson to make changes.

He took the advice to heart. Wilson changed neurologists and started building up strength and endurance to help delay muscle degeneration, which is happening to him at a steady rate.

"She's much more of the opinion that, yes, be physically active; make as much muscle as you can, recognizing that you will likely lose it down the road."

Much like any athlete, Wilson has a team helping him stay at his physical peak: strength coaches, physiotherapist, nutritionist. Charcot-Marie-Tooth does affect his cycling; he compensates for weaker calf muscles by relying more on his hips, quadriceps, hamstrings and upper body. He also can't crank his pedals with the same power as an elite cyclist without his condition.

Nevertheless, in five years of competition, Wilson has represented Canada across the world. In 2016, he won two silver medals in road and track para-cycling at the Rio Paralympics. That result isn't just stunning because of his limited experience, but for the fact he nearly died from blood loss after being hit by a car during training for the 2015 world championships in Switzerland. He rushed back to compete in the Parapan American Games in Toronto two months later – and crashed again – ending up on a surgeon's table to repair his shattered collarbone.

Today, Wilson's entire focus is on training for the 2020 Paralympics in Tokyo. "I want to win a gold medal."

 

As elite as they come

As Wilson sweats through the VO2 max test, friend Dr. Kenneth Riess (Marketing '91) monitors the results on a nearby computer screen. Riess, a fellow cycling enthusiast and NAIT instructor in Personal Fitness Training, is overseeing the test. His goal is straightforward: understand how an athlete with Charcot-Marie-Tooth compares to other elite cyclists.

Riess and Wilson met at a race and often ride in the same circles. Riess came up with the idea of a case study to see how being fit can help those living with the same condition as well as how they might improve their fitness. The disease's prevalence varies but it's believed to affect one in 2,500 people worldwide, making it the most common hereditary neurological disorder.

The results of Riess's study proved that Wilson is as elite as they come. His VO2 max results were in the 90th percentile of high-performing cyclists his age. His power output was on par with elite cyclists at the provincial and national level. The VO2 max results in particular surprised Riess.

"We thought there would be some limitation in his VO2 max because he doesn't have a lot of lower leg muscle mass to extract that oxygen," he says. "That was quite eye-opening."

"There's a lot of people who are more than willing to tell you what your limitations are or what you can or can't do. I like to decide for myself."

Though this is just one case study, Riess says the results do give hope to others with the same condition and warrant further study.

"An individual with this disease that exercises can see improvements in their fitness," explains Riess. "Having the disease doesn't necessarily mean they're going to decondition entirely. They can actually do quite well."

Wilson is pleased he's doing his part to improve our understanding of Charcot-Marie-Tooth disease and how exercise can help others with the condition. Having this information could help him refine his training to make it more effective and efficient, he says.

Gold medal within sight

But, ever the competitor, he' not satisfied with his results. More weight loss, for instance, could boost his VO2 max and improve his starting speed.

"It's disappointing that I haven't really achieved my best but it's also really liberating. There's still room to grow," he says.

Every hour spent training pushes him closer to his goal of a gold medal and a life that's anything but slow paced. Charcot-Marie-Tooth is a disease Wilson lives with but it does not define him.

"There's a lot of people who are more than willing to tell you what your limitations are or what you can or can't do. I like to decide for myself."

This article appears in the spring 2018 issue of techlife magazine.


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