Fight it as long as you can

Mytinger2
Roy Mytinger '81 Photo courtesy Roy Mytinger

Roy Mytinger ’81 and the battle against ALS

When Roy Mytinger ’81 found out five years ago that he had amyotrophic lateral sclerosis (ALS), the civil engineering alumnus could have taken his doctor’s advice to get his affairs in order, then waited the predicted one to four years to die. But he didn’t.

“You can take it two ways. You either let yourself go, or you do what you can to fight it as long as you can,” he said in an interview this summer. He made a conscious decision to “just enjoy life as best I can, rather than just sit around feeling sorry for myself.”

Before his diagnosis, the Rhode Island native had heard of ALS, also known as Lou Gehrig’s Disease, but he hadn’t given it much thought. Now he cites statistics—that every 90 minutes of every day, an American is diagnosed with the disease—and looks the hard facts in the face: The disease has no identifiable cause or cure.

Despite Mytinger’s efforts to control his symptoms through nutrition and medication, ALS has progressively robbed his motor neurons of their ability to send signals from his brain and spinal cord to his muscles. He has lost voluntary control over his movements. He can no longer walk, has limited use of his arms, and his voice is failing.

Yet he has met the challenges head-on. When his legs became paralyzed, he began using a wheelchair. He switched his season tickets to the Anaheim Ducks to the wheelchair-accessible section.

When he could no longer drive his beloved Ford Mustangs, he got a wheelchair van and let his friends drive his Mustangs—a ’67 GT coupe and a ’67 Shelby GT 500, the latter a “powder blue speed demon” (as one journalist has described it) that Mytinger rebuilt himself. “I’ll call [my friends] up and say, ‘My Shelby needs to be run.’ They come screaming over here in a hot minute.”

After Lou Gehrig was diagnosed with ALS, he finished his tearful farewell to baseball by saying, “I may have had a tough break, but I have an awful lot to live for.” You might say the same for Mytinger. Since 2004, when he had to give up his work as an engineer, he has turned his energies toward fundraising efforts for ALS research. And despite the enormous changes in his life, there have been two constants—devoted family and friends, including those lifelong friends made at SCU. Mytinger lives in Trabuco Canyon in Southern California, and most of his SCU buddies live in the Bay Area, but they keep in touch and get together regularly.

And his effect on them has been significant, noted friend and former SCU roommate Keoni Murphy ’82, MBA ’98. “He hasn’t let ALS slow him down any more than it’s able to. He’s not giving up an inch more than it can take,” Murphy said. “He’s gotten much more passionate about his enjoyment and his convictions.”

This October, Mytinger served as grand marshal of the annual Walk to D’Feet ALS in Orange County—one of the 140 walks scheduled this year around the country. The walk was expected to raise $250,000 to support research and help families coping with ALS.
To find out more about ALS, visit the ALS Association online. At the Orange County Chapter site, you can also read more about Roy Mytinger’s team (a.k.a. Ricky Roy’s Racing Team) in the Walk to D’Feet ALS.
—Anne Federwisch

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