Allan's battle: Dunlap man facing ALS thankful as community rallies behind him

Sunday, June 1, 2014

photo Allan Carr watches as workers build a pond in the backard of his Dunlap, Tenn., home on May 17. Carr suffers from an aggressive form of the disease ALS, and the group Ponds of Hope constructed the pond in his yard.

UNDERSTANDING ALSAmyotrophic lateral sclerosis -- commonly known as Lou Gehrig's disease and outside the U.S. as motor neuron disease or Charcot's disease -- is a progressive neurodegenerative disease that attacks motor neurons in the brain and spinal cord and affects muscle function. Muscles cells waste away, and accumulated loss of motor neurons eventually makes it impossible to control normal muscle function. Symptoms of ALS can include twitching and cramping of muscles, stiffness in muscles, increasing loss of motor control in hands and arms and legs, weakness and fatigue, slurred or thick speech and difficulty breathing or swallowing. In most cases, ALS patients do not experience significantly impaired sensory neural functioning, intellectual reasoning, vision or hearing. Eye and bladder muscles, along with sexual function and drive, are not normally affected. To learn more, go to www.alsa.org or teamgleason.org.

DUNLAP, Tenn. - His wheelchair is his chariot.

His smiling sense of humor and spirit, a sword and shield holding a terminal disease at bay.

Allan Carr is a warrior in a war he knows he cannot win, but he fights every day with "overwhelming" support from his army of family, friends, co-workers, neighbors and strangers from all over.

Carr, a 46-year-old single father of two from Dunlap, was diagnosed in March 2013 with amyotrophic lateral sclerosis -- also known as Lou Gehrig's disease -- after having symptoms for about a year.

The disease is progressing rapidly.

Carr was working as a carman for Norfolk Southern in Chattanooga and recovering from an unrelated procedure to implant a stent when he started having symptoms.

He was losing weight, doing physical therapy and getting in shape, but his hands starting getting weak and something was wrong with his speech.

"It was about a year before we got it figured out," he said, sitting on the couch at his home north of Dunlap.

After a "blur" of a few weeks telling co-workers, friends and family about the diagnosis, people started swarming to help.

The family, their friends and community have left their marks on the Carr home in the form of a "man cave" in the backyard, a new wheelchair and high-tech communications device and a wheelchair-accessible bathroom. Neighbors take out the trash for them, surprise them with money to help pay expenses, lend encouragement and prayers. Ponds of Hope, a foundation dedicated to making lives easier for those with terminal illness, built him a pond in front of the man cave.

He even got a letter from former New Orleans Saints defensive safety Steve Gleason, who also suffers from ALS and founded the support organization Team Gleason.

Because the people who helped have gained such a positive impact for themselves, Carr said he wouldn't go back and change the diagnosis, even if he could.

"It's like when I got this, they got it," he said. "That shows you what kind of community it is."

At first, Carr found it hard to accept help, but a close friend told him that turning it away was "robbing them of their blessings," he said.

"We wouldn't have ever known about all the goodness and love if this hadn't have happened," Carr said. "I think this has been good for everybody around. It's made them think about living every day without taking things for granted; really, what life is supposed to be."

Carr's co-workers at Norfolk Southern have not let a day go by without words of encouragement and phone calls to see what he and his family needed, he said.

"They started 'Team Big Al,'" he said with smile.

His sister, Melissa Rosson, says that nickname came from his football-playing days at Sequatchie County High School, where he remains an avid fan of the school's athletic teams.

The diagnosis that March day hit the family hard, but it didn't take long for her brother to bounce back, Rosson said.

She recalled a stop at a Logan's Roadhouse restaurant as she, Allan and their mother, Mildred Carr, made their emotional return home from the facility in Nashville.

'We were sitting there, all real quiet," she said. "He looked up at us both and he said, 'I ain't gotta go to work no more.'

"We all just started laughing. That kind of humor has helped us a whole lot, and he keeps us laughing," she said.

Carr said he gets spiritual strength from God and his church family and is inspired by an uncle he calls a "tough old bird" who "walks the walk" in his own battles against some similar disabilities.

"I ain't going to lay down for it," Carr said.

While a parent's role is to get the most from his children, Carr said he's spending his time laughing and loving daughter Lindsay and son Gage.

Lindsay, 17, bounced into the room fresh from school with a kiss for her dad.

The reporter in the house, he told her with a sly grin, was there to do a story on her and her messy room.

"I forget about it sometimes because we're always laughing and joking," Lindsay said of her father's illness. "I think he inspires a lot of people with his positive outlook; the way he doesn't feel sorry for himself and the way he puts everybody else first."

Carr said his battle has opened Lindsay's and Gage's eyes to other people's problems. They have seen the impact community support has had on their family and what it could do for others.

On Sequatchie County High's football team, lifelong schoolmate Kenneth Ewton was an offensive guard playing beside Carr, who played tackle. The two played defense, too, with Carr a lineman and Ewton an outside linebacker.

They've always had each other's backs.

About a year before the diagnosis, Carr called Ewton to see about a job with the railroad and the two were teamed up again at Norfolk Southern.

Norfolk Southern workers often take up philanthropic efforts to help people in need, but Carr struck a special chord because of his selfless nature and relentless positive attitude.

"He's always somebody who's just fun to be around. He's always cutting up and cracking jokes," Ewton said.

For those who have helped, "it's a reality check. Anybody could be in this same situation. You need to always be thankful for what you have," he said.

His friend's battle with ALS has strengthened his faith and Carr's faith, too, Ewton said.

"The good Lord has really picked him up and ushered him through this," he said.

Called "Coach Carr" by members of the Little League football team he coached, Carr said even his youngest supporters have responded with such heart that he's inspired.

"I always told them to go hard till the whistle blows. It's time to practice what I preach," Carr said. "I've had so much support there's no excuse for not fighting."

Contact staff writer Ben Benton at bbenton@timesfreepress.com or 423-757-6569.