Active and athletic since childhood, Ryan Levinson of San Diego has devoted his life to a variety of sports, including sailing, SCUBA diving, surfing, windsurfing, kayaking and kiteboarding (a cross between windsurfing and paragliding).
Today, some eight years after he received a diagnosis of facioscapulohumeral muscular dystrophy (FSHD), Levinson is a certified instructor in SCUBA diving, kiteboarding and sailing. He runs a kiteboarding school, writes for Kiteboarding Magazine and was profiled about kiteboarding on ESPN2 last year.
Levinson received MDA's Personal Achievement Award for California this year.
Another of his great loves is cycling and he's a highly competitive racer.
Cycling takes strength, coordination, balance and the ability to recover exhausted muscles. It presents Levinson with some physical challenges as his FSHD progresses.
He's now caught in an athletic limbo. He can no longer compete effectively against able-bodied athletes, but he's also ineligible to participate in elite competitions for athletes with disabilities, such as the International Paralympic Games being held in Athens this month.
Levinson wants to open the door for other high-level athletes with muscle-weakening diseases like his, so they can compete in elite-level cycling races like the Paralympics. And along the way, he also hopes to help doctors learn more about the effects of strenuous exercise on people with FSHD and other neuromuscular diseases.
Levinson, 32, began cycling on an overnight camping trip in the Northeast in 1984. He read a cycling magazine article about a 100-mile ride called a century, and began training.
After completing four centuries and training with faster groups of riders, Levinson discovered racing the following year.
"I raced with increasing intensity until 1990 or 1991 when I finally left the bike, partly due to frustration resulting from the early (but undiagnosed) effects of MD," said Levinson.
More than 10 years later, he returned to cycling because of his drive to succeed and his refusal to let muscular dystrophy rule how he lives his life. Levinson can't resist this means of pushing his physical limits.
Levinson still wins some local bicycle races against able-bodied athletes (ABs). But the more he races against people without disabilities, the more he realizes the importance of competing against people with disabilities.
The only local race with a category for disabled cyclers is the San Diego Bicycle Clubs monthly Time Trial Series. Levinson has won that race four times this year.
In 2003, he learned that the Paralympics [an elite-level competition for athletes with physical disabilities] included cycling among its 21 events. Levinson decided that was just the challenge he needed.
Levinson trained for 10 months to prepare for the U.S. Paralympics national championships in May, which helps qualify members of the U.S. team. While training, he was warned that he might not be able to get a cycling classification.
Levinson's results put him in contention for the U.S. team, he thought. But at the last minute he was told that the international Paralympics classification rules wont allow him to compete. He isn't "disabled enough" under the guidelines, and he doesn't have the "right" kind of disability to qualify for the cycling team.
For example, Levinson doesn't have blindness, cerebral palsy, a spinal cord injury or an amputation all officially recognized Paralympic cycling disabilities even though his FSHD-impaired trunk control, balance and coordination limit his ability to race against able-bodied athletes.
Paralympic eligibility guidelines don't seem to have clear rules for those who can use all their limbs, but whose balance and coordination aren't up to par, Levinson said. His efforts to nail down answers about his eligibility have left him frustrated.
"They keep saying that I don't have the minimal disability, but they won't tell me what that is," Levinson said. "They keep pointing to a point system, but they refuse to say specifically what the points measure."
Joe Walsh, director of Paralympic programs for the U.S. Paralympics, is sympathetic to Levinson's situation, but points to the rules.
"I don't want to diminish whatever disability [Levinson] has in his legs, but his legs have not been affected by the MD with enough severity to make him eligible for Paralympic competition," Walsh said.
"That doesn't mean that [legs] are the only place that affects cycling, but for Paralympic competition, those are the parameters that have been defined by the International Paralympic Committee (IPC)."
There currently is no mention of neuromuscular diseases in the IPCs classification process, Levinson said.
"I'm now working to change this as I think it excludes a large population of individuals who could benefit from the many ways that the Paralympics and other competitions can enhance a persons life," he said.
In his effort to expand the Paralympics classification system, Levinson has learned that other athletes have struggled to become classified. "Their work and sacrifices serve as valuable examples for me as I move forward."
In turn, Levinson has received support from an increasing number of athletes with disabilities. He hopes others with neuromuscular diseases will lend their voices as well. More about his efforts can be found at www.ryanlevinson.com.
Beside making the Paralympics more accessible to people with muscle diseases, Levinson has another challenge in mind: to learn more about the effects of hard exercise on his FSHD.
After his diagnosis, doctors warned him that strenuous exercise could damage his body further. But he could find no research, proof or case studies to back up the speculation, he said.
In hopes of showing medical professionals that some people with muscular dystrophy can benefit from physical activity, Levinson began working with researchers at San Diego State University's Department of Exercise and Nutritional Science, having his fitness levels measured during the cycling season. Since last year, he said, his body fat has decreased and his lean muscle mass increased; his VO2 max (the measure of oxygen the body can use) increased; and he's gained leg strength, power and endurance.
"Hopefully this can serve as a starting point for research that may lead to medical advice beyond the current standard of don't overdo it," Levinson said. "I think that would greatly enhance the lives of some people living with MD."
It's important to realize that exercise affects everyone differently, and Levinson is wise to monitor his fitness levels and keep track of his stats.
Valerie A. Cwik, MDA's medical director, said, "Persons with FSHD have an extremely wide range of muscle strength, with some being extremely weak, full daytime wheelchair users, and others having minimal weakness.
"This is also true for virtually all of the other neuromuscular diseases.
"That makes it extremely difficult to suggest a generic exercise program and means that an exercise program must be tailored to the individual's abilities and to their response to exercise," Cwik said.
Levinson's ultimate goal is to share the importance of physical activity with others who have neuromuscular diseases. He wants people with muscular dystrophy to have options in athletic activities and events.
"I realize not everyone with MD will be able to follow this path, but I am certain that there are some who can and will if given the chance."