5.4.2001 08:34

Lou Gehrig's disease afflicts a seasoned athlete
BY S. ROBERT CHIAPPINELLI
Journal Staff Writer

WARWICK -- Scott and Hillary Carlson met when he competed in a triathlon in which she served as a lifeguard. They surfed on their first date, and countless athletic endeavors have dotted their 3 1/2-year-long relationship.

Tomorrow they will be involved in the first East Greenwich Rotary Adversity Leads to Success 5K race, at Goddard Memorial State Park.

The irony, though, is that Scott will be a spectator. ALS, commonly called Lou Gehrig's disease, has channeled Carlson from marathon running, riding and swimming to the brink of a wheelchair.

"I really feel I'm coming into another stage of the disease," he said last week, on his 37th birthday. "I can't walk as well as I used to. Balance is bad, so I'm going to have to become dependent on a wheelchair and have to get help when Hillary isn't here."

Proceeds from the race will go to the Rhode Island chapter of the Amyotrophic Lateral Sclerosis Association, to help fight the neuromuscular disease that leads to paralysis and often death.

Next Tuesday, the chapter will present the Carlsons the Brian Dickinson Courage Award at its annual Evening of Hope. Olympic decathlon champion Bruce Jenner will be the main speaker at the $125-a-plate event, at 5:30 p.m. at Rhodes on the Pawtuxet.

"They break my heart because they're so young," Barbara Dickinson, chapter president, said of the couple in their mid 30s. The courage award is named for her husband, Journal editorial columnist Brian Dickinson, who was diagnosed with the disease in 1992 but still produces columns with an eye-activated computer.

In February 1997, Scott Carlson felt a twitching in his right shoulder. Then his doctor noticed a weakness in Scott's right thumb.

Identifying ALS is a long process of excluding other possibilities. The only questionable results in a subsequent series of tests occurred in a nerve conduction study. Soon, writing and playing the guitar eluded Scott.

"It was hard, but it was not as catastrophic as going in finding a lump and two weeks later you're told you have a malignant tumor," he said.

Scott spied Hillary first at a 1997 triathlon when she was newly returned from Oregon and ruing the lack of waves equal to the Pacific's. He struck up a conversation about surfing and pledged to call and steer her to good waves.

The indefatigable Scott courted her through her lifeguarding days at Scarborough Beach, often driving from his Newton, Mass., residence and spending long days in Rhode Island.

"I just knew that he was who he was, that was it," she said. "This guy, he didn't put on a face for this person, for that person. He was Scott through and through with every person he ever met. Sincere. True."

Hillary accepted his marriage proposal in November 1998, when the ALS diagnosis was about 90 percent certain. They eloped the following February. "Nobody knew for about five weeks, except for the waiter at the restaurant we went to after," she said. They later had a reception with their families.

They have surfed in Costa Rica and several Pacific locales. "We've only known each other 3 1/2 years," Scott said. "All the stuff we have done, I don't think most people would get to do in a lifetime. We're really lucky."

Their future seems painfully finite, but neither flinches.

"We walk our whole life hand in hand with death," Scott says. "Life and death. They're there." He enjoys talking about the disease with young people who don't shy from hard questions and answers.

"I think life changes all the time anyway," Hillary says. "This is a life change. It just happens to be a big life change."

Still, the ALS evaluation process was often painful.

"IT WAS REALLY HARD not knowing what we were dealing with," she said. "'I had to learn to be comfortable with 'We don't have an answer' -- which is never really comfortable at all."

"I'd say you really have to stay grounded and patient," Scott said.

They hope for a cure and say there has been progress, but they realize that ALS causes motor nerve cells in the brain and spinal cord to degenerate and usually leads to death within five years of diagnosis.

Scott ran his last race in June 2000. But Hillary, with Scott's coaching, has taken up the torch, completing the Boston Marathon last month in just over four hours. Friends formed a running team that collects tens of thousands of dollars in pledges for the Day Neuromuscular Research Laboratory at Massachusetts General Hospital, headed by Scott's nationally recognized physician, Dr. Robert Brown. Members each try to raise at least $2,130, the number of Lou Gehrig's consecutive game streak.

Remarkably, Scott hardly misses his old routines. He moved from Newton to Hawthorne Road in Old Buttonwoods after they married, so he rarely sees former training routes.

"You adjust," he said. "The only time I really feel it in my gut is when we drive down Storrow Drive and I see people on the river run."

Lately, though, he said he has been reviewing old training routes in his head. "But," he said, "I do that with a smile on my face, remembering." He feels that he accomplished quite a bit in his athletic career and was satisfied to let go.

Hillary says that Scott, an engineer, can be very focused on the project at hand. They hope research can unlock the cause of the mysterious progressive disease and they are gratified by increased awareness about it.

AN ENGINEERING GRADUATE of Syracuse University, Scott studied material concepts of sonar and radar and worked for Boston-based BBN, which performed Navy contracts. He often spent time aboard submarines, writing software and working on those systems.

The work was exciting, fellow employees stimulating and the company -- which later evolved into GTE through merger and spinoff -- treated its employees well. Carlson retired on long-term disability, and his employers still cover his health insurance.

In fact, the company looked into accommodating him despite his illness. Scott can still surf the Net, but he did not want to feel unproductive and knew he could not maintain the customary pace that sometimes meant working all-consuming days for as long as three months to meet a submarine building schedule.

Hillary, who grew up down the street from Brian and Barbara Dickinson, attended Our Lady of Mercy School in East Greenwich and St. Mary Academy at Bay View. She graduated from Boston University and the East/West College of Healing. She works at John Balletto's Center for Muscular Therapy, on Providence's East Side, a couple of days a week.

They forged an informal pact that they both can't have bad days simultaneously. Every so often, though, bummers abound.

"We're approaching this how we would approach anything, and that's with a positive attitude and determination," she said.

Tomorrow they will be at Goddard Park, for the 5K race that Hillary's mother, Joyce Phipps, a Realtor, persuaded fellow Rotarians to help sponsor. Registration is $15 for adults and $10 for children 12 and under. Registration for the 10 a.m. race around the park begins at 8:30.

Hillary and many of their friends will run, and Scott will be there with the usual smile on his face.

"My life has been good," he says, "so why be miserable now?"