The Log Newpaper - Scandone Faces ALS On His Terms
By Rich Roberts
As printed in The Log Newspaper

"Lift your toes."

Nick Scandone can still hear that odd command from his chiropractor that day two years ago when he went to see him because his back hurt.

"I couldn't lift my toes," Scandone said. "And he says, 'I think you need to see a neurologist.' "

Thus Scandone, one of the Balboa YC's more accomplished sailors, started down the one-way road that now defines his life.

That wasn't the day he learned he had amyotrophic lateral sclerosis---ALS, also known as Lou Gehrig's Disease. That news came later, after a long medical process of elimination and subsequent period of denial. There is no test for ALS. Nor is there a cure.

Gehrig, two years after his "luckiest man on the face of this earth" farewell speech at Yankee Stadium, died in June of 1941, 17 days shy of his 38th birthday. Scandone is 38.

ALS is described on the Lou Gehrig Web site as "a neuromuscular disease characterized by progressive muscle weakness, resulting in paralysis. Because ALS only attacks motor neurons that control the body's voluntary muscles, patients' minds and senses are not impaired."

Sixty-three years after Gehrig's death, little has changed. About 30,000 Americans live with ALS at any given time, with 5,000 new cases a year, 14 a day.

Gehrig never played another game after stumbling through the first few days of the '39 season. Scandone continues to sail, if in a different mode.

He won Lido 14 national championships in 1998 on Mission Bay and in 2000 at Big Bear Lake, as well as the Senior Sabot Nationals in '98. Earlier, as an all-American at UC Irvine, he won the 470 North Americans and the collegiate nationals.

His latest championship was in last month's Independence Cup/North American Challenge Cup hosted by the Chicago YC. File that in a new category. All of the competitors were disabled.

Scandone won the singlehanded 2.4mR class, a radical departure from the dinghies he sailed so well.

"The ALS has put me in a position where I don't have much strength in my legs or my right hand," he said. "I can no longer really sail a dinghy where I have to switch from side to side when I tack. [So] you look for something else.

"For a while I thought, well, maybe I could do some keelboat sailing, but you still have to change from side to side. I did the Ensenada race this year. I was fine out there, but the next day when we got to Ensenada and I got off the boat I could almost not even walk.

"I needed to find a boat that wasn't very physical. The 2.4 is like a mini-race car. You sit in it with your feet out in front of you, and all the lines are right in front of you. The most physical things you're doing are with your hands."

The more advanced 2.4mR sailors, like the ones sailing in the Paralympics at Athens starting Sept. 17, have boats set up to steer with their feet.

"Even though I can't move my ankles, I can still press my knees to use the foot steering," Scandone said.

Scandone regrets that he didn't get into disabled sailing until this year when he first sailed a 2.4mR with surprising success in two events in Florida.

"I felt, gosh, I wish would have known about this earlier and had the opportunity to sail in the Trials back in November."

So he's planning for the Paralympics in China in 2008.

After winning the Independence Cup, he went to Maine to work with Tom Brown, America's Paralympic rep in the 2.4mR class. Brown, 44, lost a leg to cancer when he was 13. A bronze medalist at Sydney in 2000, Brown says this is his last Paralympics.

Scandone chides Brown. "They always say that. Then they win a gold medal and want to do it again. But if he doesn't, I'd guess I'd be the favorite [in 2008]."

Last fall Scandone quit his job as sales director for an Orange County company that makes wood-fired ovens to spend more time with his wife, Mary Kate.

"I decided that I would take a year to fulfill some of my childhood dreams. Right now I'm in good health for [someone] that has had ALS for more than two years."

But first he had to accept that he had it, long after that cell phone call from his neurologist as he was driving home from work, "after I'd been through months of testing and MRIs and everything.

"I'm pulling into my driveway and getting out of the car and he says, 'Have you ever heard of a disease called ALS? Or Lou Gehrig's disease?'

"And I said, 'The only thing I've ever heard about it is the guy died before he was 40.' "

At that point, Scandone handed the phone to Mary Kate. He had a fishing trip planned hat weekend.

"Not until six months later did I really end up sitting down with my wife and discussing it with some detail. I'm very fortunate to have her. She's a successful, driven woman. At that time I was getting worse and came to grips with the fact that I may actually have this.

"We've done some stuff since this happened. We went to Belize with a couple of friends, to Cancun, down to Mexico, up to Seattle, off to Denver. We're off to Puerto Vallarta just after Christmas this year.

"My life has always been built around doing physical activities . . . racing boats, playing golf, surfing, fishing. It's very difficult to go on certain vacations with a mindset of, well, we're just going to see the nice beautiful countryside. I want to do as much as I can while I can."

Scandone's most apparent problem, he said, is "what they call 'foot drop.' Because you have no ankle movement, when you walk your toes go up and down."

The prevent that, he wears white plastic braces strapped to the back of his calves and under his feet "so my foot won't hang down and I don't catch my toes when I walk.

"In the last year I've changed direction and I'm seeing a homeopathic doctor. I must take almost 30 vitamins a day. Somehow, it seems to have stabilized me a bit. I am still getting progressively worse, slowly, but not like I was the first year [when] I went from the point I couldn't lift my toes to tripping over myself and breaking my foot."

Officially, as a sailor, Scandone is considered disabled, "even though I don't consider myself disabled like the others. Bottom line to me is, if you're in a wheelchair you're disabled. Although I will probably be in one someday, right now I'm not, so I want to get out and do as much as I can."

Lately, he has been pursuing his other passion: fishing. A regular partner is another UCI alumnus and sailor, Randy Lake.

"So I'm still getting out on the water, just in a different capacity," Scandone said. "I'm involved with the Balboa Yacht Club Anglers."

More than involved. "I got a yacht club record just this year for a 47-pound white sea bass over in Catalina," Scandone said, beaming.

"We all consider ourselves invincible. When things just come up out of nowhere, you can look at it two ways: why did this happen to me, or what can I do now? What is my next goal? You start over again."

Or, as Lou Gehrig said at the end of his farewell speech, "I may have had a tough break, but I have an awful lot to live for."