Amy Donaldson: North Las Vegas runner refuses to let debilitating disease stop him

Published: Sunday, June 2 2013 8:40 p.m. MDT

NORTH LAS VEGAS, Nev. — It began as a way to lose weight.

Somewhere along the way it became a refuge.

And now, after being diagnosed with a rare, debilitating disease, running is how Adam Silverstein defiantly holds on to who he is.

“I used to run because I could,” said the 27-year-old Arizona native who now lives in North Las Vegas. “Now I run because everyone, including my own body, tells me I can’t. ... I choose to run, not because it is easy, but because it is hard.”

Silverstein was never an athlete.

“I played baseball as a kid, and I hated every minute of it,” he said with amusement evident in his voice. “One day a couple of years ago, I joined a gym to lose some weight and started running.”

As he dropped unwanted extra pounds, he also started to shed emotional baggage.

“It was very therapeutic for me,” he said. “It just gave me 30 minutes, or an hour, to be with my thoughts. There was nothing about work, school — just meditate almost, but a little more actively.”

He ran his first race — a 5K — in 2010, and the bond was cemented.

“I love racing,” he said. “I’m not fast, and I probably never will be, but there is something satisfying about the accomplishment each time.”

In December 2011 he ran his first half marathon and quickly tallied seven 13.1-mile races. He heard about a long-distance relay in his hometown of Phoenix, a Ragnar Relay race in which 12 runners take turns covering just under 200 miles, and jumped on a team with 11 people he’d never met.

“That was probably my least favorite course, but the team was fun and the whole experience was amazing,” he said. “My first three teams were complete strangers going in, but they’re some of my best friends now. I’m running Niagara (Ragnar) in two weeks with six people I’ve run with on other Ragnars. It’s just a unique experience, and you don’t get that every day of your life.”

The relays provided him with the teammates he’d never had in a sport that had become central to his life.

“There is nothing in my life I’ve ever looked forward to as much as running a Ragnar,” he said. “Every time I schedule one, I’m counting down the days.”

Last July he was running on the treadmill when “everything went blurry.” He began to experience weakness in his face, neck and arms and constantly dealt with unexplained blurred vision.

He got an explanation for the symptoms on Aug. 29, 2012, when doctors told him he had myasthenia gravis, a disease in which his body’s immune system attacks the acetylcholine receptors in his muscles, preventing them from properly contracting.

Some days he feels like he should at 27 — fit, energetic and strong. Other days he struggles just to talk, sometimes even to take a breath or swallow.

Silverstein is battling the disease with everything he has — and everything medical science offers. He’s undergoing several treatments and takes oral medication three to five times daily, as well as enduring an IV therapy every other week.

“There are no guarantees,” he admits. “The possibility exists that I could go into a period of remission when the disease seemingly lies dormant within my body, but it could flare up without warning at any point.”

The triggers are just about anything — stress, environmental changes, infections, and maybe most problematic for him, physical exertion.

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