After years of helping Fill the Boot, firefighter struggles with diagnosis of Lou Gehrig’s disease
By CHRIS VAUGHN

S-T/BRUCE MAXWELL
"The hardest thing is not being a firefighter anymore," Kelly Crush said. "To have that taken away has been very hard. I miss the camaraderie with the guys."



IRVING — For 20 summers, Kelly Crush stood on a street corner in Wichita Falls with a boot in his hands, raising money for the Muscular Dystrophy Association.

During his off hours from the Wichita Falls Fire Department, he volunteered on the Fill the Boot campaign, not knowing anyone with muscular dystrophy or exactly what the money went for, only that firefighters did it every summer, sort of like leading the Fourth of July parade.

"I can tell you firsthand that every year we’ve been doing it since he joined the department, he’s been dodging bumpers and sweating his butt off," said Corky Scarbrough, a Wichita Falls firefighter for more than 20 years.

Last summer, Crush finally met someone with a neuromuscular disease — himself.

On Sept. 5, four days after the Jerry Lewis MDA Labor Day Telethon, a doctor in Dallas gave Crush an explanation for the muscle twitching and fatigue he was experiencing and the ankle that kept collapsing on him. Crush had amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease.

In a few minutes, Crush went from a healthy 48-year-old who ran three miles a day and charged into burning buildings to an ever-weakening man with a death sentence, probably sooner rather than later.

"Firefighters are the biggest givers to the MDA every year," said Crush, who now lives in Irving. "I’m on the other side of the boot now."

The diagnosis

Each year, about 5,600 people in the U.S. are diagnosed with Lou Gehrig’s disease. They’re often in their 30s, 40s and 50s and never saw it coming. People in the MDA, which is the umbrella organization for all types of neuromuscular problems, refer to it as the "nice guy disease."

"It is cruel," said Carolyn Minnerly, healthcare service coordinator for the MDA’s chapter in Dallas.

Crush can still hardly believe that he is one of them, though he doesn’t doubt it.

He is reminded of it every second of the day — twitching and cramping all over his body, the 15 pounds he has lost the last few months, the cane he uses now, the wheelchair in the corner he expects to need at some point.

With ALS, the motor neurons that control the muscles die, which leads to the death of the muscles. Usually within three to four years, the diaphragm muscles that control breathing also fail, and the patient dies.

"Yeah, I was ****** off," he said of the first few weeks after the diagnosis. "I don’t smoke, don’t drink, never done drugs. I worked out, ate healthy. It doesn’t matter."

He struggled "trying to wrap my head around the fact that there’s nothing they can do. It only gets worse. I am not going to get better. It’s terminal. That’s a tough diagnosis."

He moved to an apartment in Valley Ranch in Irving to be closer to the University of Texas Southwestern Medical Center at Dallas. The ALS clinic there is one of three in Texas partially funded by the Muscular Dystrophy Association.

The clinic has neurologists, physical and respiratory therapists, nutritionists and other specialists to help with care.

He takes only one prescription drug — it is supposed to slow the effects of the disease — and he takes creatine to help with his strength.

"I hope that the research might answer a lot of the questions and provide a cure," he said. "It’s probably too late for me, but maybe they’ll come up with something tomorrow. I have to stay positive."

'The hardest thing’

When he can, he drives back to Wichita Falls, to the fire stations where he spent a third of his adult life. His last day at work, as a driver of Engine 8, was Sept. 4, and he is not quite over that fact.

"The hardest thing is not being a firefighter anymore," he said. "I couldn’t wait to go to work every day. To have that taken away has been very hard. I miss the camaraderie with the guys."

Scarbrough, Crush’s longtime colleague, said the diagnosis "was a blow to the gut" of the entire department, which is searching for ways to help beyond the annual Fill the Boot campaign.

"He’s raised his chin up and taken it like a man," Scarbrough said. "I’m sure he has his bad days, but he’s strong and hardheaded. We’re all amazed at his attitude, though not surprised, actually. He’s a hell of a fireman."

A few weeks ago, as Crush sat talking to the firefighters, someone asked him what he wanted to do. Crush said he’d like to travel, to go see some places while he still can get around.

"I’m a history buff," he told his friends. "I’d really like to see Rome. The Colosseum. The Sistine Chapel. The Vatican."

The next day, his friends in Wichita Falls called him and told him to pack his bags. They’d taken care of everything — airfare, hotel, tours and spending money. He left last week.

"It was overwhelming," Crush said. "I get emotional talking about it. I’ve fought fire and lived with these guys.

"They’re family."



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Lou Gehrig’s disease Lou Gehrig of the New York Yankees was diagnosed with ALS in 1939 and had to leave baseball. He died in 1941 at age 37. Other notable people who died from ALS were actor David Niven, Hall of Fame pitcher Jim "Catfish" Hunter, Sesame Street co-creator Jon Stone and photographer Eddie Adams. Physicist Stephen Hawking has ALS.

Fundraiser Friday The annual gala for ALS research will be held at 6:30 p.m. at the Hilton Anatole hotel, 2201 Stemmons Freeway, Dallas. Proceeds support the ALS Center and its research at UT Southwestern Medical Center.

Online: www.mda.org



CHRIS VAUGHN, 817-390-7547

http://www.star-telegram.com/northea...y/1225918.html