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Scott Carlson, 39; worked to increase awareness of ALS

Scott Carlson, 39, who spoke to school groups about the devastation of amyotrophic lateral sclerosis, or Lou Gehrig's disease, succumbed to the incapacitating neurological disorder Tuesday in Providence.

 

It all started as a twitch.

A systems software engineer for Bolt, Beranek & Newman who enjoyed bicycling and surfing, Mr. Carlson was training for a triathlon in 1997 when he felt a twinge in his right shoulder. He was soon diagnosed with the fatal illness.

Most people live for two to five years after the symptoms first manifest, though physicist Stephen Hawking, who has lived with ALS for about 30 years, is a notable exception.

"I felt like someone had taken everything I knew about the world and put it where I couldn't get hold of it. I was in shock, I kind of went numb," Mr. Carlson said of the diagnosis in a story published in the Lawrence Eagle-Tribune in 2001.

When the shock wore off, he read up on the disease.

"We read until our eyes watered," said his wife, Hillary J. Phipps, whom he was dating at the time. "But nothing prepared us for the disease. It's like reading a recipe; you can read the list of ingredients, but you never really know what a cookie is until you eat one."

As the disease ravaged his body, Mr. Carlson, who once surfed off Costa Rica, skied in Jackson Hole, Wyo., and played guitar in a three-man group called the TriTones, could no longer manipulate a guitar pick, wield a ski pole, or shift the gears of his bicycle.

"Every time you lose something you go through the emotion of loss," he told the students at Woodbury School in Salem, N.H., in 2001, as quoted in the Lawrence paper. "You get better at it as you go. But there will be periods when things seem so hard."

Yet Mr. Carlson, a former resident of Newton who lived in Warwick, R.I., for the past four years, said he considered the disease a beginning, not an end.

"A lot of people choose to fight for their past life," Mr. Carlson said in a story published in the Globe in 2000. "I'm ready to live the next one. I have new things to find out, new experiences to live."

Among those experiences was marriage. Shortly after the diagnosis, Mr. Carlson proposed to Phipps and the couple eloped. "When there is a certain spark between you and another person, you feel like nothing can diminish it," his wife said yesterday.

Mr. Carlson, a graduate of the University of Connecticut who held a master's degree in engineering from Syracuse University, began speaking to school groups to raise awareness of ALS and sponsored athletic events to raise funds to fight it.

"Having ALS is like walking into a dark room, reaching for the light switch on the wall, and it's not there, " Mr. Carlson said in the 2001 address in Salem.

Late at night, when the lights were out, Mr. Carlson said, he became anxious and wondered about death. "You ask the age-old question," he said. "What's it like?"

In addition to his wife, he leaves his parents, Alan and Helen (Robinson) of Bethlehem, Conn.; and three brothers, Brian of Dallas, Glenn of Bethlehem, and Eric of New York City.

A memorial service will be held today at 2 p.m. in Buttonwoods Chapel in Warwick.

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