His greatest race

**** Kelley wants to raise awareness about Lou Gehrig's disease -- and to compete in a triathlon with his granddaughter.
By Ralph Berrier Jr. | The Roanoke Times

VIDEO AND PIC'S CLICK HERE.






Richard "****" Kelley was falling down on the ski slope. A lot.

He was not used to that. He was an experienced skier, a guy who preferred the difficult telemark style with all of its tricky turns. The style is so hard to master, telemarkers have their own joke about it:

"Why does it take so long for a telemarker to replace a light bulb?

"They turn. They fall. Turn. Fall. Turn. Fall. ..."

That's what Kelley was doing, turning and falling. Just as he'd try to initiate a turn, he would corkscrew into the snow. He was sure it was his back, which had been tight and painful for weeks. His right wrist was killing him, too. He chalked it up to being on the back side of 60, still trying to enjoy the sports of his younger days.

That was in December. Today, he uses his ski pole as a cane. He no longer has the use of his right arm. He cannot drive. Walking up a short flight of stairs is a physical strain. When he is fatigued, his body trembles.

Barely one month after skiing down the slopes of West Virginia's Snowshoe Mountain, Kelley learned the reason why his body was failing. In January, he was diagnosed with amyotrophic lateral sclerosis. Most people call it Lou Gehrig's disease, an insidious neurodegenerative condition named for the legendary baseball player who died of the disease in 1941. The majority of people with the degenerative disease live three to five years after diagnosis. The disease has no known cause or cure.

The stunning diagnosis left Kelley not knowing how much time he has left, but knowing what he wants to do. This former Army commander and Vietnam War veteran and top-notch athlete has two primary missions he wants to complete:

n He wants to raise public awareness about a disease even he knew little about.

n And he wants to compete in a triathlon, at least partially, with his granddaughter.


Still pedaling, part one

Kelley climbed atop a stationary recumbent bicycle at the Kirk Family YMCA. He used to look at people who pedaled those bikes -- on which riders recline as if lounging in easy chairs -- and wonder how strenuous a workout they were getting.

"Now, it's the only thing I can do," he said.

With jet-black hair and a slender athletic build that barely betrays the disease that is decimating his body, Kelley looks a decade younger than his 63 years. His choice of music on his iPod belies his years, as well. These days, he is into modern rock and prefers working out to the Flaming Lips, MGMT and the Killers.

"Not a really good song," he said as he fiddled with his iPod while pedaling the recumbent. He shuffled through his playlist until he landed on a song he liked. "Ah, here's one of my favorites."

The song was "Human," by the Killers, which features the refrain:

"Are we human or are we dancer?

My sign is vital, my hands are cold,

And I'm on my knees

Looking for the answer.

Are we human or are we dancer?"

He pedaled for 25 minutes, barely breaking a sweat. As he dismounted the bike, a couple of fellows on treadmills called out to him.

"****, you entering any triathlons?" one of them asked.

"Yeah, I'm going to enter one," he said. "I got to get that T-shirt. It's a $60 T-shirt."

Kelley is one of those guys whom everybody seems to know. That happens when you work as a public servant for 25 years, which Kelley did as assistant superintendent for Roanoke's schools.

He's also well-known among Roanoke's biking, running and skiing communities. He has a ton of friends and they all know he has ALS. Many of them are helping him, either by giving him rides to the Y or to the movies, or by competing in upcoming races in his honor as a way to raise awareness of ALS.

His neighbor Sam Schneider is competing in the Angels Race Triathlon in Lynchburg on April 26. Kelley will participate in a portion of the Angels Race with Schneider. He has found that he can still swim effectively as long as he wears fins, which rules forbid, but race organizers are making an exception for him.

If all goes well in that race, he should be ready for the Appalachian Power Smith Mountain Lake Triathlon on May 2. He knows he can't complete all of the race's three legs. He simply wants to complete at least 100 yards of the swimming, running and biking portions with his granddaughter, Tricia Gangstad, who is coming to Virginia from Texas just to compete with her grandfather.

"It kind of came up the same night grandma called to tell me about grandpa's diagnosis," said Gangstad, 28, whose mother is Kelley's stepdaughter. Kelley's wife, Carol, has three children from a previous marriage, but all of the stepgrandchildren call Kelley "grandpa."

"He mentioned the triathlon during that same conversation. It was difficult. We'd just gotten the news. I told him he should really do another triathlon. He said, 'I'm not sure I'll be able to do it. Why don't you do it for me?' How could I say no?"
Gangstad, who has run two marathons but has never done a triathlon, joined a training group in Texas to help her prepare, especially the swimming and biking parts. She's been training for six weeks and has six more to go. She has not seen her grandfather since her wedding in August, when he still looked strong and healthy.

"When I'm training, he's constantly in my thoughts," she said. "You push yourself that little bit extra. It gives me a lot of strength to do my best because he can't. It's pretty powerful."

Kelley is training, too. Schneider gave Kelley a lift to the Y recently where both of them worked out. After Kelley completed his bike work, he took to the indoor track. He balanced himself with his ski pole/cane -- or his "adaptive ski pole," as he likes to call it. He tooled around the track with labored, half-running steps, as several runners and walkers passed him. He pressed on for two laps, then slowed to a walk for the last lap.

"One cool-down lap," he joked.


No time to lose

In the den of their home in Roanoke County, just outside Vinton, Carol Kelley rolled her eyes as her husband watched a video of "Weird Al" Yankovic's comic rap song "White & Nerdy."

"How could somebody be so intelligent and watch something so frickin' stupid," she wondered aloud.

Carol, who is the Ronald McDonald Family Room coordinator at Carilion Roanoke Memorial Hospital, calls her husband "a man of many interests." He has always been like a big kid, a guy who likes new music, movies and video games. But these days, he is a different person. Not just physically, which is obvious. His personality has changed, too.

By all accounts, **** Kelley was not a big talker before his diagnosis. Back in the days when he managed the budget for Roanoke's schools and oversaw major construction projects, he was considered a conservative, rational enforcer. Newspaper reports of the time described him as "reserved." His wife of 30 years called him an "introvert."

Nothing about Kelley is reserved or introverted these days. He talks at length about his illness, about doctor visits and tests. When he's not talking about those topics, he's e-mailing or Twittering about them to a long list of friends.

He sends updates about his condition. He e-mails a link to a "song of the day" each morning and encourages friends to call radio stations to request it. He sends funny comments and even compiled a "Top Ten Advantages of ALS" list (No. 10: "You don't have to worry about the results of your prostate exam."). He has shown a streak of gallows humor since his diagnosis. He often goes around town in a pinstriped New York Yankees jersey with the name "Gehrig" emblazoned on the back. And he hates the Yankees.

He has to communicate. He is trying to raise awareness about ALS and encourage people to donate money to find a cure. He wants to raise at least $5,000 toward ALS research. People can donate through a page in his honor on the ALS Web site (web.alsa.org/goto/richardkelley).

"I have to hurry and get this done," he said. "I don't know how much time I'll be physically able to spread the word about ALS."

He has already purchased voice-recognition software for the time when he will no longer be able to type or write.

When that day comes, he will rely on his wife, family and friends even more.

The disease is difficult to diagnose. Kelley had suffered back and leg pain for a couple of years, but attributed it to his grind of exercise and sports. He went to the doctor after experiencing recurring pain in his right wrist and forearm that he believed was related to carpal tunnel syndrome. A neurologist needed little time to determine that the problem was much more severe. Further tests on his legs a week later confirmed the ALS diagnosis.

Kelley is taking the drug Rilutek, which can moderately slow the progression of ALS. Little is still known about the disease, but other drugs have shown promise in clinical trials. Stem-cell research may be another key in learning more about ALS.

ALS affects the motor neurons in the brain and spinal cord, rendering them unable to send signals to muscles, which atrophy. Most patients eventually experience complete paralysis.

ALS can take a toll on family and caregivers, as the victim becomes more dependent on others for even the most basic functions.

Because Kelley cannot use his right arm, his wife helps him get dressed, from putting on shirts to pulling up his socks. She fixes his meals, drapes a bib around his neck and cuts up his food. It will not get easier.

Already, Carol Kelley feels like she has "a thousand pounds on my shoulders. I'm drowning. I'm just trying to keep things as normal as possible. Sometimes I just don't know what to do. It's overwhelming."

The Kelleys met in 1978 in Leavenworth, Kan., where **** Kelley was a major in the U.S. Army and where Carol, seven years his senior, was an ex-military wife with three children and worked at a bank. They met at the officers' club when a mutual friend tried to set **** up with one of Carol's friends. Instead, he fell for Carol. They married three months later.

**** Kelley had commanded a maintenance company in Vietnam, where he "had a few firefights," and had served in the army for more than a decade, even completing training in the U.S. Army Ranger School.

When the couple married, Kelley was ready to leave the service. He earned a master's degree and the Kelleys moved to north Florida where **** Kelley found work with a local school system.

Sick of Florida's heat and humidity, the couple moved in 1979 to Bedford where he took a job as the school system's finance officer. Carol Kelley worked as a secretary in the Bedford County commonwealth attorney's office. The next year, the Kelleys came to Roanoke where **** Kelley was hired as the assistant superintendent for business and stayed on the job until 2005.

He was a man of many hobbies, including model train collecting. He became an avid runner and biker and took up telemark skiing and other outdoor sports in his 40s.

Now, he is selling his equipment -- his bikes, his skis, his kayaks. Almost everything, save for his adaptive ski pole.


Back in the swim of things

A group of older women was engaged in a round of water aerobics as Kelley stepped into the pool of the Bedford Area Family YMCA. Kelley likes the Bedford pool, and he asked his longtime friend George Hunter to drive him there about 10 days ago. Once there, Hunter helped him put on his swimming vest and goggles. Aquatics director Elizabeth Creasy and lifeguard John Moore were on hand for this big moment. Kelley was going to try swimming for the first time since his diagnosis.

It didn't go well at first. His lifeless right arm could not propel him, and he could only make it a few strokes before having to flip over to his back and float. He tried again, but he listed badly to the left while stroking with only his left arm.

When he completed the lap, he asked Hunter to grab his fins. Creasy fitted him with a flotation belt to help him stay above water. Within minutes, kicking mostly with his fins, Kelley was swimming straight and true.

He completed eight 25-meter laps and exited the pool confident that he could swim at least part of a triathlon.

Back in the locker room, Hunter had trouble pulling the wet, stretchy vest over Kelley's head.

"Man suffocates," Kelley said, anticipating the headline. "Didn't drown in pool. Drowned getting his wetsuit off."

Kidding aside, Kelley is grateful for the outpouring of support from friends such as Hunter, a retired teacher who now takes time off from a job at Wal-Mart to help him.

Kelley claims not to be an overly religious person, although he has delivered his personal testimony at several churches, including his parents' church in San Diego. He and Carol flew there in late February to deliver the news of his illness to his mother and father, both in their 90s.

When he does think about God and fate, he thinks he has a theory for why things happen the way they do.

"Maybe God gives people disease as a test for other people," he said. "A test to see how they react. Maybe this is all a test for the human race. Animals do not have that type of compassion. Only people do."


Still pedaling, part two

On a recent mild Tuesday evening, Kelley hopped on his road bike at his house and pedaled downhill to Mountain View Road near the Blue Ridge Parkway. His cycling buddies were doing their regular Tuesday night ride, which passes near Kelley's home.

Eventually, about 20 riders stopped to greet Kelley and ask how he was doing. They chatted for a few minutes, then the group prepared to complete the ride. Kelley decided to join them.

He mounted his bicycle and pedaled up the slight grade, his weakened legs pumping as hard as they could. He could have coasted up a hill like this once. He was always good at uphill battles.

One by one, his buddies rolled past and gave him thumbs up. Looking good, ****!

"I wish I had my legs like I had last year," he said later, the competitive embers still smoldering. "I'd have hopped on back of them and drafted off them. We'd have raced all the way back to Roanoke."

He rode about a mile, stopped and watched his friends ride off into the looming dusk.

To donate to the ALS Association in honor of **** Kelley, go online to web.alsa.org/goto/richardkelley



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