LEWISTON — When Joshua Kennedy’s months of drunk-like slurred speech were finally explained, the doctor cried.

While Kennedy had endured a battery of tests — for mini-strokes, heavy metal poisoning, lupus, Lyme disease and other problems — he had never worried that there could something even worse.

“They don’t tell you upfront it’s a possibility,” said Kennedy, a 33-year-old Iraq War veteran.

The diagnosis of amyotrophic lateral sclerosis — commonly known as ALS or Lou Gehrig’s disease — left him similarly puzzled. He’d never heard of it.

The fear set in when the doctor explained that there is no cure. Over years, the disease attacks the brain’s ability to command muscles until all voluntary movement ends. It is always terminal.

“I was in shock,” said Kennedy, who is married with three boys: Tyler, 5, Chase who is almost 4, and Drew, who is nearly 2.

He thought of them as he learned about the odds and the time he has left.

About 20 percent of people with ALS live for five years. Ten percent survive for 10 years or more.

“If I am one of the lucky ones that lives 10 years or more, I won’t live to see my oldest son graduate from high school,” Kennedy said.

At rest, Kennedy appears strong and fit. But when he tries to move, the image breaks down.

His speech is slow, sometimes stopping in mid-sentence until he can recapture control.

On his feet, he sometimes teeters precariously as he walks with the aid of a walking stick.

Meanwhile, his eyes blaze with frustration.

While the disease steals control of his body, it leaves his mind and his memories of a vigorous lifestyle intact.

Kennedy grew up in Cumberland and graduated from Greely High School.

He met his wife, Ernesta, about 10 years ago. The couple married just before Joshua left for Iraq in early 2003.

He spent more than a year in southern Iraq, working security at a fuel farm located halfway between Baghdad and Kuwait City. According to his official discharge, he earned a variety of ribbons and medals, including the Army Commendation Medal.

His service may also have planted the seed of his disease.

Men who have served in combat have a higher likelihood of contracting ALS than other men, according to the national ALS Association.

However, doctors are stumped to explain it.

“Although many questions remain unanswered, the preponderance of the evidence strongly demonstrates that something about military service increases a person’s risk of ALS,” the association said in a May report.

Kennedy read it, too.

“The rate is double,” said Kennedy, who earned an associate’s degree after Iraq and went to work as a corrections officer in the Androscoggin County Jail.

He had been there more than two years when the slurred speech sent him to the doctor last December.

At first he thought it was a side effect of some medications, so they were halted.

“He sounded like he was drunk,” Ernesta Kennedy said. “And it never went away.”

Doctors worried that he was having transient ischemic attacks, mini-strokes commonly called TIAs. He endured a battery of tests.

At the end of March, a neurologist gave the couple the news.

A second opinion by a doctor at Massachusetts General’s ALS clinic shut the door on a poor diagnosis.

“She just looked at the paperwork and said, ‘I concur.’” Joshua said. “It was pretty well set in stone.”

Since then, the couple has been navigating the medical bureaucracy, dealing with the VA, Maine State Retirement and the Army.

“It seems that ALS is fast-tracked everywhere,” Ernesta said. No one has let them down yet.

He is awaiting a medical retirement from the Army Reserve.

At the jail, Joshua was given a desk job to allow him to work several extra months. He finally left at the end of July. The Sheriff’s Department held a spaghetti fundraiser on July 31 to help the family.

Trips are planned for Disney World and Las Vegas. Meanwhile, the couple plans to sell their home in New Gloucester.

“There is going to come a point when I am going to need an ADA compliant house,” Joshua said.

He has enrolled in a clinical study with Massachusetts General and hopes for a miracle. But he knows the odds.

About 15 people per day are diagnosed with ALS in the United States, according to the ALS association. On average, they will live for two to five years.

Joshua’s age and fitness may buy him some time, he said.

“I’m strong,” he said. “They say that helps.”

There is no cure, though.

“I am terminal,” he said.

Meanwhile, Ernesta is trying to cope.

“I’m in denial,” she said. “I am slowly coming out of it. It’s hard for me to say, ‘Wow this is really happening to us.’”

dhartill@sunjournal.com

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