Disease Onset Yields Challenges--and Friend

Several years ago, a USC Medical School professor showed her class a large depiction of Parkinson’s disease. The series of drawings followed something like the evolution of man but in reverse, starting with an upright man and ending with a figure hunched over and shaking.

Moses Remedios whispered to a fellow student, “Out of all the awful things we’ve learned about, this disease is the one I hope I never get.”

“Famous last words!” he says now, recalling that the lecture came only a short time before his diagnosis with Parkinson’s. He sees the cruel coincidence, but opens his mouth wide anyway to share a long laugh with a new friend.

That friend is May May Ali, the daughter of Muhammad Ali, who also suffers from Parkinson’s. She has tried to help her father fight the disease, and is now watching Remedios wage a similar fight. It’s a fight tinged with, of all things, laughter--a lot of laughter.

But friendship is like that. Although they hadn’t met until March 3 at the Los Angeles Marathon and are still getting to know each other, Remedios and Ali have formed a warm bond that helps them get by, that lets laughter ring.

Both volunteered for Team Parkinson, an organization that gathers pledge money for medical research against the disease. Remedios had seen Ali at a previous Team Parkinson event, but had never met her.

When they did meet, Remedios came running up behind, unable to resist a joke about her dad. “Someone’s moving like a butterfly!” he said. And they started to laugh.

It was a relief from the anxiety related to the run. In declining health and only a couple weeks away from liposuction, he didn’t know if his disease would prevent him from finishing.

Since the diagnosis almost two years ago, the disease had sapped him quickly.

When the shaking started, he was pulling long hours at his job as a physician’s assistant at County-USC Medical Center, and drinking a lot of bad coffee.

“I mean a lot of bad coffee,” he told Ali. He wondered if the coffee was the problem.

It took a while to reach a diagnosis--long enough for Remedios to see four doctors without a result. But the fifth one, after a few moments with him, saw some of the tell-tale signs: faster fatigue on one side over the other, uneven walk.

He had Parkinson’s at 31.

Remedios was also, of course, fully aware of the battle underway in his body. He could tell his family and friends, in precise terms, how much mobility he had already lost.

His sister, a doctor herself, wouldn’t believe it.

“In five or 10 years, I may be out of the work force,” Remedios said.

His supervisors at USC were generous when he told them.

“They said I would always have a job. They said I could teach if I couldn’t practice myself,” Remedios said, fighting tears. “Working in medicine is at the center of my identity.”

Now, “my favorite patients to see are the older patients with Parkinson’s because they are trembling,” he said.

When a bewildered and elderly woman came in for treatment of the disease recently, Remedios was able to put her at ease. She spoke Korean, so through a translator, Remedios said, “You shake? I do too.”

“She smiled,” Remedios said.

His decision to run the marathon was surprisingly late, just three weeks before the race.

“Someone in good health knows they could finish the race if they put their mind to it,” Remedios said. “When you are diagnosed with Parkinson’s, it becomes a question.”

Before the marathon, Remedios’ partner, Mark Bauman, wrote on his running shirt: “To the love of my life, go get ‘em.”

Ali was happy when he caught up to her early in the race.

“I’m sort of a loner, and suspicious of people who meet me as my father’s daughter, but I’m also a good judge of character, and you can just tell Moses is a nice man,” Ali said.

“I mean, just looking at him say ‘Thank you,’ ‘Thank you,’ ‘Thank you’ to everybody who gave us a cup of water, you could tell he’s a nice man.”

They sang rap songs, whistled, danced and talked about relationships. Under a billboard showing a picture of Ali’s dad, they took a picture, and when Ali couldn’t take it any longer, Remedios stood guard as Ali went to the bathroom behind a building.

“Everybody was doing it!” Ali said. “There was no other way!”

They laughed hard retelling the story. They finished the 26.2-mile run in six hours, 33 minutes.

“I didn’t know for sure whether we would finish. I just knew I wanted to run it with Moses,” Ali said.

They also laughed at how spectators chanted “Ali! Ali!” as she neared the finish line, Ali dramatizing the way she had crossed her fingers during the final steps, hoping she and Remedios would finish.

Now the two carry on a friendship through e-mail and pizza at Remedios’ apartment. Remedios is trying to set up Ali on a date.

When her father was in town, Ali invited Remedios to come down and meet him at the Kinko’s in Beverly Hills, where the old boxer was copying passages from the Koran and the Bible.

After the meeting, Ali talked about the moments early in her father’s disease when she first noticed the effects on him.

“I said, ‘Daddy, are you sad?’ Because he was looking so expressionless after a while,” Ali said. “But that was the Parkinson’s mask, his wife told me.”

Remedios knew what she was talking about. “Usually when you meet someone for an event like the marathon, you leave and don’t have any commonality to continue the relationship on,” Remedios said. “That isn’t the case with May May.”

Ali, pretending the compliment was too generous, mockingly slapped him and shouted, “Oh stop!”

And they laughed.

*

Team Parkinson, which accepts donations to fund research into Parkinson’s disease, can be reached at 6412 Broadway Ave., Whittier, CA 90606.