XTERRA Racers Bond-Muscular Dystrophy

Oct. 12, 2012

By James Clarke

Ryan LevinsonRyan Levinson (pictured) has already competed in the XTERRA World Championship off-road triathlon. He has a second-place medal from the 2006 race on Maui to show for it. Now he wants to help Kevin Barber enjoy the “Live More” XTERRA experience.

They share a common bond that extends far beyond off-road triathlons. They are both living with Facioscapulohumeral Muscular Dystrophy (FSHD), which is the most common form of Muscular Dystrophy. It shows in young adulthood with symptoms that include deterioration of the muscles.

Barber has qualified for the 2012 XTERRA World Championship – which is scheduled for Sunday, October 28, at Kapalua, Maui – thanks in part to coaching help from Levinson. Barber, an Ophthalmologist in DeLand, Florida, will compete in the physically challenged division, just as Levinson did in 2006.

Although he wasn't actually diagnosed until December 2011, Barber had noticed the symptoms and been training with it for 5+ years, he just didn't know what to call it until last year.

"Over 12 different doctors and no answers for 6 years," said Barber, 38.  “Ryan has taught me how to listen to my body and respond accordingly.  He incorporated a total health concept to my training that allows for better recovery, and ultimately better fitness. In addition to the swim, bike and run routine, we have incorporated regular yoga, core strengthening and stretching. This has made an incredible difference, as the muscular dystrophy causes significant loss of range of motion.”

Kevin BarberIt helps that Barber (pictured left) was already a triathlete when he was diagnosed with FSHD. He completed several road triathlons earlier in his athletic career, including a 70.3 Ironman. His first XTERRA experience came in June of this year at the XTERRA East Championship in Richmond, Virginia.

“It was one of the hardest races, but hands down the most fun!” Barber said. “The courses are a blast.  XTERRA is unique in that they provide and regulate a physically challenged division at all races. My limitations from FSHD have made it impossible to keep up in the age group class. Having the PC division has given me a completely renewed energy to continue competing.”

Barber resides in Sanford, Florida, and before he made the decision to pursue XTERRA races this year, he searched online for potential coaches. He found Levinson across the continent in San Diego, Calif.

“Kevin asked me if I knew any good XTERRA coaches who had experience working with athletes with disabilities like ours,” Levinson said. “I gave him some names, but ultimately he decided to trust me with the job.”

Because of their locations on opposite ends of the United States, most of the coaching advice has come through modern communication methods.

“The logistics of prescribing workouts, monitoring his daily metrics, etc., is pretty easily done online and over the phone,” Levinson said. “The distance is not an issue, but sometimes I wish I was closer so I could lock up his bike and hide his paddleboard. Kevin is ultra highly motivated and has a history of training himself into oblivion so we had to break some bad habits.”

Their mutual understanding of what it takes to train while battling FSHD has undoubtedly helped both of them. As Levinson explained: “FSHD can impact muscles throughout the body. In the worst case scenario, people with FSHD can often lose the strength to close their eyes or smile, not to mention walk, wash their hair, or other day to day activities. There is no known cure or treatment.”

As if training and competing with FSHD were not enough, Barber has also been battling Type 1 diabetes for more than half his life.

People with Type 1 diabetes constantly need to monitor their diets. As a training triathlete, Barber’s monitoring of what he eats and when he eats is evidently astronomical. “When I neglect proper nutrition, my blood sugars become erratic and unpredictable, and I start on a roller coaster of high and low blood sugars.  It’s very difficult to train under these circumstances. Nutrition and electrolyte replacement requires meticulous attention during endurance or strenuous events. I guess I see myself as lucky since I have double the motivation to keep nutrition dialed in.”

As for Levinson, he can no longer compete in triathlons, which is part of the reason why he turned to coaching. He certainly has not stopped living an active life. He works as an emergency medical technician, and still enjoys outdoor sports such as bodysurfing, kiteboarding, sailing, diving and paddleboarding.

Levinson is also a past XTERRA USA Champion (2006 physically challenged division), and the memories of his XTERRA experience – “I still have scars from the Maui course,” he says proudly – are now being passed on to Barber. It is a trip Barber plans to take full advantage of.

“I realize that competing in the XTERRA World Championship is a once in a lifetime privilege,” Barber said.  “I don't know how much longer I'll be able to compete, so I am going all out for Maui.  I'm bringing my wife and 3 sons (who are all running in the 5K Trail Run), so we can experience this together.  One of my biggest concerns is the climbing in Maui.  Living in Florida, I'm well acclimated to the heat, but it’s hard to train for climbing. I'm hoping the view from the high point of the Maui course will make it all worth it!”

Regardless of how he does on Maui, Barber is hoping to follow Levinson’s XTERRA steps in becoming an inspiration for future competitors – physically challenged or not.

“You can't control the cards you are dealt in life, but you can control how you play those cards,” he said.  “Having Type 1 diabetes and muscular dystrophy sucks. I could sit around and have a pity party.  Instead, I choose to experience life to the fullest within the confines of these two conditions.  I'm not afraid to fail.  We will never know what's possible unless we try.   I hope in some way, I can offer some inspiration or hope to others that struggle with any type of disability.  I hope someone sitting on a couch somewhere, will hear this story, and say ‘if that guy can do it, then so can I.’ ”