Staying afloat;
STORY BY MARCIA SMITH; PHOTOS BY RYAN HODGSON-RIGSBEE; THE ORANGE COUNTY REGISTER // September 14, 2006

Copyright 2006 The Orange County Register (California)
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ABSTRACT
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Mary Kate Scandone spent a recent Saturday in her Fountain Valley home rearranging the downstairs, moving tables, pushing sofas and clearing floor space for her husband's wheelchair to maneuver easily from room to room.

She wants to give him freedom and so much more. More sailing adventures. More vacations. More love. More of everything. If only she could give him more time.

Her husband, Nick Scandone, 39, calls every other day from the bottom of the globe, where he's squeezing more life out of life, this time by competing in the recent 2006 IFDS World Disabled Sailing Championship in Perth, Australia

His brother, Rocky, is there to lift Nick from his wheelchair into and out of his 14-foot sloop, Entry No. US 114. Inside, Nick's legs, shielded in plastic braces from knees to ankles, lay in front of him. His feet limply toggle the seat pedals that he doesn't have the power to use.

Nick can snap his life vest over his body that has thinned by 40 pounds in the past two years. He can grip the lines to control the sails.

On Western Australia's Swan River, Nick is as anonymous, as strong and as able as any sailor, though last week, U.S. Sailing designated him 2005 Rolex Yachtsman of the Year.

It is sailing's highest honor -- won by America's Cup skipper Dennis Conner, Olympic champions Kevin Burnham and Paul Foerster. Now joining that group is Scandone, a determined sailor who turned to the sea 3 1/2 years ago when he learned he was going to die.

Nick was 36 when he was diagnosed with Lou Gehrig's disease (ALS, amyotrophic lateral sclerosis), a progressive neuromuscular condition that strikes 5,600 Americans each year, has no approved medication or cure, steals a person's motor skills and allows just 20 percent to survive longer than five years.

He and Mary Kate had been married four years and were talking about having children. They had moved into their first home two months earlier and planned to fix it up between Nick's job as an Orange County restaurant-equipment sales director and Mary Kate's work as Mimi's Cafe staff recruiter.

Plans changed.

``We read that most people don't live past 40," Mary Kate said. ``The news was so devastating that it took about a year-and-a-half for the shock to wear off. We had a lot of heart-to-hearts and tears about how our life as a couple was going to change, and we worked to turn something tragic into a positive."

Eighteen months after the diagnosis, Nick quit the trade-show and sales circuit and set sail. Mary Kate's job paid the bills.

``Sailing has allowed me to have something to look forward to," he said.

This was the sport the former Fountain Valley High student learned in the junior program at Balboa Yacht Club. He earned All-America honors on the UC Irvine sailing team that won the 1988 North American Dinghy and Team Racing Championships.

A 470-class winner at the 1991 North American Championships, he missed making the 1992 Olympic team and settled for sailing as a hobby.

He met his wife while sailing the Lido 14 at the Balboa Yacht Club. She had a boyfriend the first time he asked her out. A few weeks later, Labor Day 1995, Mary Kate came back alone, newly single, for their third sailing trip.

``We saw each other every day for the next five days, and I fell hard for him," she said.

For their honeymoon, Nick sailed a boat around the Virgin Islands. One afternoon, the newlyweds got into a race.

``Nick loves competition," Mary Kate said. ``He loves the ocean."

He returned to the sea to race not just other boats but this disease that robs him of motion and strength and forces him to concentrate more each day on every touch, grasp, step, word and blink.

First came the cane. Next the plastic braces on the legs to keep them from dragging. Then, two days before Christmas, the wheelchair. Now his arms are weakening enough that Mary Kate can't always go to him to open jars in the kitchen. They both realize the physical changes and allow them to pass quietly, sadly.

There's nothing they can do.

That's why sailing today, while Nick can, is important. His sloop is not just a race boat but a lifeboat, saving him from sinking into ALS.

As sharp a skipper as ever, he reads the waves and winds and follows his course. His hands and arms still work well enough for boat control, and his expert nautical skills help compensate for what he lacks in strength.

Last year, Scandone defended his U.S. Independence Cup title, won the America's Disabled Open Regatta and finished sixth in the Disabled Sailing World Championship. But the victory that won over U.S. Sailing's 34-member award panel came at the 2.4 Metre Open World Championship off Elba Island, Italy in September.

Scandone competed in an 88-boat fleet, with seven world champions among the 53 able-bodied competitors and three Paralympic medalists among the 35 sailors with disabilities.

He won two of seven races and finished third in three others. He led the final standings by 10 points over Sweden's Stellan Berlin, the class' three-time, able-bodied world champion.

Mary Kate watched the races from the banks and cried while cheering on her favorite skipper with the wire-rimmed glasses, sun-faded ballcap and silver goatee.

His triumph was just as liberating as it was remarkable. It is also memorable enough to last a thousand athletes' lifetimes.

Nick Scandone, 39, of Fountain Valley, let himself down into the sail boat while his wheelchair rests on the Balboa Yacht Club dock. Nick was 36 when he was diagnosed with amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's Disease.
http://www.usolympicteam.com/11699_49095.htm