Iraq veteran's family fighting shock and denial

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

Jose Leiva/Sun Journal

Joshua Kennedy of New Gloucester an Army reservist and Iraq war veteran pictured with Ernesta; Kennedy has contracted ALS.

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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Comments

 's picture

muscular dysthropy is not

muscular dysthropy is not ALS. you are not a nice person but I will pray for your soul to heal. God bless you tron.

 's picture

Muscular dystrophy is a group of neuromuscular diseases

of which ALS is one.

 's picture

muscular dysthropy is not

muscular dysthropy is not ALS. you are not a nice person but I will pray for your soul to heal. God bless you tron.

 's picture

ALS

I was geared of stage IV colon and liver cancer. I'm completely free of cancer. God can do all things. This is not hopeless. Get into a full gospel church. Talk to people who have seen and felt the power of God. He is real. He can heal you as well and you'll be attending all of your childrens weddings.
I'll be praying and will pass this along. God Bless
Gary Cormier
Los angeles CA

Jan Bachelder's picture

TRON

You are an ignorant *insert insulting phrase here with several colorful metaphors* POS. I am not usually inclined to wish ill will upon anyone, but the more I "see" of you, the more I think that perhaps some terrible fate should befall you and SOON. Bad Karma always boomerangs back to hit those who throw it. Go crawl back under your rock.
The firefighters are asking for donations for a great cause, to help the MANY people afflicted by this and many other incurable diseases. They are not "harrassing" anyone. And I'm sure that the Kennedy family is not looking for any handouts. They are going to need help, most certainly. But the GOOD Karma that this wonderful man has been creating all his life in service to his community and his country will hopefully come back to help him. God Bless you Josh, and your family. I'll keep you in my thoughts and prayers.

 's picture

This weekend the Lewiston firemen are going to

harass people at the balloon festival to donate to MDA. Since you've become an unfortunate possessor of this horrible disease, maybe they'll give you the proceed, which will undoubtedly be in the tens of thousands. I'll pray for you and your family to have the strength you'll need for the next few years.

Robert Mower's picture

Wounded warrior

You are in my prayers during this difficult time.
Be as strong as you can be and God will not turn his back on you (Faith).
Good luck soldier.

Jamie Dennett's picture

heartbreaking news

My thoughts and prayers are with this family. I'm sure they are thankful for a diagnosis finally, but what horrible news to have to face. Thank you for your service, Joshua Kennedy.

 's picture

Lou Gehrigs Disease

I am so sorry to hear that you have ALS. My brother also had the disease. He was never in the service though but I have heard lots of it is related to being deployed..Our thoughts and prayers are with you during this difficult time in your lives.

 's picture

I CAN ONLY SAY TO YOU AND YOU FAMILY,[WE BLESS YOU ALL]

GOD BLESS YOU ALL!!! LAW MAKERS SPEND AND [[WAISTE BILLIONS OF TAX DOLLARS THAT COULD GOT TO MORE RESEARCH FOR ALL RESEARCH FOR CURES]]]]]]]]]]] TIME TO STOP ALL LAW MAKERS //////////WRITE TO ALL LAW MAKERS SUSAN COLLING ,MISS SNOWEE LIKE BRIDGES TO NO WHERE ..WE NEED MORE RESEARCH.[NOT $5 HUNDERD TOILET SEATS OR STUPIT GOVERMENT PEOPLE LIKE IN CAILF GETTING HUGE WADGES ...........OPEN YOUR EYES PRESIDENT OBAMA STARTING TODAY EVERYONE SEND A HAND WRITTEN LETTER TO MR OBAMA ,TELLING HIM TO STOP STEALING IN GOVERMENT.BILLIONS OF THAT COULD GO FOR MANY KINDS OF RESEARCH DO IT NOW TODAY PLEASE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Veteran's als diagnosis

Very sad, good luck and God Bless, you will be in my prayers!

Laurie Bryant's picture

God Bless

I wish you and your family comfort and precious time together. Life is so fragile, and I hope that people realize that no one is immune to ALS or any other life-altering disease. Every moment regardless of perceived significance, is precious. I am glad that you are receiving the medical care you deserve and hope that your willingness to participate in clinical trials can advance the research surrounding ALS in the future. DO not take no for an answer---do not let bureaucracy hinder your treatment. Be strong, be persistent, and you and your family will be in my prayers.

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