Honoring Darin's life
Tuesday, October 02, 2007By YVONNE BETOWTTimes Staff Writer yvonne.betowt@htimes.com

Former triathlete loses fight to ALS in 3 years

Rachel Kruse called it "torture." Her mother-in-law, Ruth Kruse, said it is "the worst disease anyone could get."

"It" is Amyotrophic Lateral Sclerosis (ALS), better known as Lou Gehrig's disease, which breaks down the muscles in a person's body, preventing movement and eventually breathing.



Since April 2004 when Darin Kruse was diagnosed with ALS, Rachel and Ruth watched their husband and son, a highly conditioned athlete and engineer, deteriorate to someone who could only blink his eyes to communicate.

Although his breathing was labored and the weather was unseasonably hot Sept. 22, Darin was determined to attend the Walk to D'Feet ALS at Alabama A&M University. Dozens of his family members and friends from work and Latham United Methodist Church turned out, wearing Carolina blue "Carin' for Darin" T-shirts to help raise money for ALS awareness. They took turns pushing him in a wheelchair.

The next morning, Darin Kruse died in his sleep at age 42.

"It's horrible watching him," said Ruth, two days before her only son died. She and her husband, Chester, made many trips to Huntsville from their home in Ohio to help Rachel and the Kruse's two daughters, Monica, 16, and Michelle, 14.

"They've been a godsend," said Rachel. "I don't know what we would have done without them."

Darin hoped to live long enough to attend one more event to help raise awareness and money for the local ALS Association - the Heel and Crank Duathlon on Saturday in his honor. Now it will be in his memory.

Darin was an outstanding triathlete (running, biking and swimming). His fellow triathletes and others who knew him wanted to honor him while helping raise money toward research for the disease that physically robs a person's motor skills yet never affects the brain.

"He could hear and understand everything, but he just couldn't communicate," said Deb Kohlhase, executive director of the Alabama chapter of the ALS Association based in Huntsville. "Nothing was going to stop him from coming to that race (Sept. 22). His attitude and determination kept him going."

Through a computer, Darin communicated with visitors two days before he died: "This is making my family feel special. I know the effects of this disease on my family."

Kohlhase said ALS "affects the whole family, not just the person who has it. Taking care of an ALS patient requires a high level of skill and not everyone can do it. But everyone can be a support system, which is what drives us."


After learning he had ALS, Darin turned to Nesin Therapy Services where Dr. Janine Nesin provided much-needed relief.

"The whole point of physical therapy is to keep the patient as mobile and strong as long as possible," Nesin said during a visit to Darin's home two days before he died. "Darin was so strong, which is what kept him going as long as he did."

"I didn't know how debilitating it was," said Rick Greif, who knew Darin as a fellow triathlete. Nesin and Greif joined hands three years ago to start the Heel and Crank Duathlon in Darin's honor. "Here was a great triathlete and a super nice guy and it made me mad to see that slip away from him. We just wanted to put on a race to help Darin and others like him."

Neither Greif nor Nesin knew much about ALS until they met Darin. Greif now serves as race director and Nesin's company is providing the financial backing.

Rachel, an engineer like her husband, introduced him to triathlons. They participated in their first triathlon together in 1987.

"He just took off and left me behind," said Rachel as she sat on the bed next to Darin's hospital bed in their southeast Huntsville home.

They moved here in 1991 from Rock Island, Ill.

Rachel said she coped with the disease by continuing to work while Shirley Paxton took care of Darin during the day. She gets angry when she thinks about the disease that claimed her husband's life.

"He did everything he was supposed to do," she said. "He ate healthy and he exercised a lot. But that didn't help."

She would like to see more government money be given toward research to find a cure for the disease that is virtually a death sentence when diagnosed. Only a handful of people have lived more than a few years after learning they have ALS.

"I get irritated when we spend so much money on some things and how much waste I see, not just with the war (in Iraq), but office waste and other things," said Rachel. "Stem cells are promising, but it's just a matter of how much we want to spend on research."

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