by Kathy Wechsler
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 (see www.westcoastkiteboarding.com),
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.
How It All Began
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.
A Dream for Tomorrow
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In 2001, Levinson
was photographed surf kayaking at Mission Beach in San Diego. |
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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.
Yes, But No
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.
A Man With a Plan
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.
Setting an Example
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 Universitys
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."
