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Disease saps muscles, not will

Doctors diagnosed Ryan Levinson with muscular dystrophy 10 years ago. But he won't stop training and has become a "guinea pig."

By SCOTT PURKS
Published April 28, 2006

TAMPA - Calves are an important - some would say invaluable - muscle group for a triathlete, especially when it comes to running and biking.

So what's up with this dude, Ryan Levinson?

He has no calves.

No lower abdomen.

No pectorals.

No triceps.

What does he have?

"I have," said Levinson, a triathlete for 15 years, "muscular dystrophy."

Muscular dystrophy, a disease that eats away a person's muscles throughout life. The disease that leaves many people powerless to blink, or kiss, let alone run, swim and bike.

Doctors recommend those with the disease not work muscles too hard because it tears them down. In a healthy person, workouts tear down the muscle, allowing blood to flow in and build it up even more, making it bigger and stronger. In a person with muscular dystrophy, the accepted theory is when muscles get torn down, they never build back up.

So consistent, heavy exercise should debilitate the muscles of a muscular dystrophy patient that much faster.

"I told the doctors they could forget it because I'm not going to stop training," said Levinson, a 34-year-old San Diego native who grew up in Tampa cycling, surfing and doing just about any other outdoor activity you can name.

"I said, "Here I am. You can use me as a guinea pig, or you can forget me working with you. It's your choice.' "

Doctors at Levinson's alma mater, San Diego State, seized it as a chance to monitor a muscular dystrophy patient willing to push the limits of exercise, perhaps further than anyone before.

"I also see it as an opportunity," said Levinson, who was diagnosed in 1996. "I see it as a chance to possibly help some people with the disease. Perhaps doctors can learn something from me.

"I don't see what I'm doing as an option. It's me. It's the way I have to live."

Sunday, that means - despite not being able to do a single pushup, sit-up, or pull-up - competing in the St. Anthony's Triathlon for the first time, partly because the event has opened up a disabilities category.

Technically, it means swimming .9 miles, "More like throwing my arms forward and breathing out of one side;" biking 24.8 miles, "Basically all with my quadriceps;" and running 6.2 miles, "Which pounds my lower back because the muscles in my lower abdomen are gone."

"It also means," Levinson said, "feeling great at the end of the day."

Is this, however, Levinson putting on a happy face? His fiancee, Nicole Lippert, who met him 10 years ago at San Diego State, says no.

"Ryan is as positive as he sounds," she said. "I'm so in love with him that I don't see that his body has changed over the years.

"I just see him as the great person that he is."

Listen for the race announcer at Sunday's finish line, probably about 2 hours, 30 minutes after the start, to call out Ryan Levinson's name.

Levinson says he'll be there, perhaps a little sore in the back, but never feeling better.

Then he'll fly back to San Diego State and tell doctors how it went, which, no doubt, will continue to throw a wrench into that theory about taking it easy.

"That's the plan," Levinson said.

"That's the plan."

[Last modified April 28, 2006, 01:17:12]