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  ALS patient will finish Los Angeles Marathon with a little help from his friends
Posted March 1, 2003 in ALS News

YORBA LINDA - Kyle Thompson has seen his future.

It was revealed in an Internet chat room two years ago by Essex Girl, who invited him to her New Jersey home; by Coppper, a red-headed former masseuse; and by DWQ, a West Virginia coal miner.

It was not pretty.

"When the drool runs out of your mouth and you can't reach up to wipe it off, that opens your eyes, big-time" said Thompson, 39, of Yorba Linda.

He's not there. Not yet. But his day will come, he said. He has amyotrophic lateral sclerosis, or ALS, which paralyzes, then kills most people within five years.

His chat-room friends did more than show him the future. They showed him how to deal with the disease that killed baseball legend Lou Gehrig.

"That's where the inspiration of these people comes from," he said, noting that several since have died. "It's their will not to succumb, to persevere in the face of death."

And so he'll rise early Sunday to join 23,000 people at the starting line of the Los Angeles Marathon - not to run, because he can't anymore, but to be pushed the 26.2 miles in a wheelchair by 26 friends.

"I see the marathon as the passing of the baton," he said. "I've learned from other people, and now I'm going to pass what I've learned to others as well."

He wants people to know they can live with ALS. He also wants to raise $10,000 to add to the nearly $30,000 he's raised for the Orange County chapter of the ALS Association.

In today's world of walkathons, bike-athons and telethons, the ALS Association's participation in the marathon is more than just a fund-raiser. It could be called an act of defiance.

It started five years ago when ALS patient Martin Mooney vowed to enter after watching an ALS patient commit suicide on national TV with the help of Dr. Jack Kevorkian.

"I thought how horrible that that man's only hope was to die," Mooney said at the time.

Friends, family, even patrons of his favorite diner pitched in to roll him, one mile at a time, through the course. And they pitched in $50,000 on top of that.

A year later, Mooney could no longer walk, talk, eat or breathe on his own - but he insisted on entering again. Friends built him a custom wheelchair equipped with the ventilator he needed to breathe and rolled him through. By April, he had died.

Many of those who rolled Mooney still return each year.

"I've always said that I'd be willing to do the marathon even if we didn't raise any money," said Mark Hershey, a friend of Mooney who will help roll Thompson. "We all need people to get through life. We have teachers, friends and family that move us along in life, and the marathon represents that."

About 50 of Thompson's relatives and friends, including several old Fountain Valley High School buddies, also will be on hand to push him across the finish line.

Thompson's life changed forever in August 1998. It started with a slight twitch in the triceps of his left arm. He figured it was stress - from studying at the California School of Culinary Arts in Pasadena. Later, his right arm started twitching. And when his hands started cramping in early 2000, he made a doctor's appointment. He finally got the news in August.

"I went out in the car and cried," he said. "It was devastating, to feel like you're healthy and to be told you have an incurable disease, and to go get your life in order and to go take a good vacation."

His chat room visits stretched to six hours a day. He met people with ALS from England, Norway, Sweden, New Zealand. People on ventilators. People in clinical trials. People going to Mexico for experimental treatments.

"When you were having a down day, those people knew exactly what you were going through," he said. One message came through loud and clear: Do what you've always wanted to do before it's too late. So, last July, he loaded up his 2001 Dodge Caravan and waved goodbye to his wife, Tracy, for a six-week, cross-country tour of Civil War battlefields. Vicksburg. Shiloh. Fredericksburg. Wilderness. Chancelorsville. Gettysburg.

"That place raised the raised the hairs on the back of my neck," he said of Gettysburg. "I'd get up at 5 in the morning and walk the battlefields all by myself. I'm going to have my remains scattered there."

Between battlefields, he visited three friends he'd met in the ALS chat rooms. Two have since died, but Essex Girl - whose real name is Barbara Mitchell, 65, of Cape May, N.J. - still remembers peeking out the front door in her wheelchair, waiting for him to arrive.

"You'd be excited, too, if anybody drove across the country to see you," she said. "This is probably his last, big driving trip, and he takes time to come and visit me. That's pretty special."

Also special were the songs that Thompson sang for her. They were Civil War songs that he's been writing for 20 years and plays on his guitar. In one, which he wrote before he ever heard of ALS, he sings:

"Never thought this moment would come so soon / You better brush some blood upon your door / And look no further than where I lay today / There's a lesson you can learn here for sure."

It's about a dead Civil War soldier telling his loved one how to avoid the Angel of Death.

And the lesson learned?

"It's knowing you're going to die," he said, "and what are you going to do with the time you have left."

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