Unforeseen Change of Course for Ailing Sailor

By CHRIS MUSELER
Published: February 9, 2008

Last week, a drained Nick Scandone sat at the Coral Reef Yacht Club bar in Miami after dominating an international sailing fleet and winning the Rolex Miami Olympic Classes Regatta with seven firsts out of 11 races. For Scandone, a member of the United States sailing team, this was one of many training regattas on his schedule leading up to the race of a lifetime in China at the end of the summer.

Scandone had hoped to be in this position 16 years ago when he was competing for a spot at the Barcelona Games in 1992. He failed to qualify for that team, and four years ago was thrown a curve that has ultimately allowed him to make it to Beijing. He learned that he had amyotrophic lateral sclerosis, or Lou Gehrig's disease, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

Despite the uncomfortable reality that Scandone's body will continue to deteriorate, he remains a favorite at the Paralympic Games in September in Beijing.

"It's not exactly as I had envisioned it," said Scandone, 43, of Fountain Valley, Calif., who stopped racing competitively after failing to make the Barcelona Games. "But I'm still living the dream. I'm exhausted but I'll be right back at it and energized when I get home."

After learning of his diagnosis, Scandone quit his job and returned to racing, competing in the single-handed 2.4-meter class. He won the 2005 Open World Championships in that class and was named the Rolex Yachtsman of the Year. He planned to compete for spot in the single-handed 2.4 for this year's Paralympics until he became physically unable to sail. But the newly added Skud 18 class has given Scandone another chance at his Olympic dream. He started sailing in that class a year ago, quickly picking up victories. This week he started training in Southern California again with his crew, Maureen McKinnon-Tucker. He spends four hours a day on the water.

The next event for Scandone is in March. After that, the goal is a test event in China in May. Scandone will move to China this summer to prepare for the Paralympics.

The high-speed Skud 18, a two-person sailboat, is one of three sailing classes in the Paralympics.

A sailor's mobility is rated on a scale of one to seven. The more severe the disability - full paralysis for example - the lower the rating.

Scandone, whose mobility was rated as a seven when he began competing in the single-handed 2.4 in 2005, is now nearing a No. 1 rating. Competitors in the Skud 18 must have a rating near the lower end of the scale. The sailors are strapped into go-kart-style seats one in front of the other. The seats tilt from side to side with electric motors to keep them upright as the boat heels. The sailors rest their hands on push and pull levers to steer.

"What amazes me about Nick is that he's still striving to get better at the game," Betsy Allison, Scandone's coach, said in a telephone interview last Saturday. "He wants to be at the top of the podium and his mental capacity is still so acute."

Allison said she encouraged most disabled sailors to do much of the sail and boat preparation.

Scandone's situation is special, however, because he gets weaker each month.

"We are now managing within the changing parameters of the disease," she said, adding that she and her assistants rig and de-rig the boat for Scandone. "It's less coaching and more making sure he doesn't overtax himself."

Doctors who work with terminally ill patients have used examples like Scandone to help their patients gain control over an otherwise uncontrollable disease.

"A.L.S. is fatal and the outcome is certain," said Dr. Judith Rabkin, a professor of clinical psychology at Columbia University. "But today, doctors, nurses and physical therapists are trying harder to encourage their patients to actively cope. It could affect their survival."

Rabkin, who said the median life expectancy of A.L.S. patients after diagnosis was three years, added: "Nick is unusual. He's quite lucky if he's still able to sail. His disease is progressing but he's enjoying life and thriving on the success of his passion. That's exceptional. He's a wonderful model of how to live life gracefully."

But the reality is that by September, Scandone may not be physically able to compete for the United States. "The question came up at a meeting," Gary Jobson, a member of the Olympic Sailing Committee, said Wednesday, "and I stood up and said, ‘Nick Scandone will tell us if he can't do it. Until he does, he's our guy.' "

Scandone said sailing had "given me a reason to get up in the morning."

He added: "I slowly become more paralyzed. I can sit back and watch it happen, but that's going to happen anyway so I might as well do what I love."

Scandone, who has beaten many of the sailors he will face at the Paralympics, is not taking anything for granted.

"I'm taking this one event at a time," he said. "At the Olympics you're representing more than yourself. You feel that you have a lot more weight on your shoulders. I'll enjoy that weight while I have it. What's next after that, I don't know."

http://www.nytimes.com/2008/02/09/sp...tml?ref=sports