Heroes Among Us: Thomasville Navy veteran lives with service-related ALS
THOMASVILLE, Ga. (WALB) - There are hundreds of untold stories of men and women in South Georgia who serve or have served our country, selflessly.
Each month, WALB takes time to recognize these “Heroes Among Us.”
A South Georgia Navy veteran is helping pave the way for others facing a debilitating disease.
David Young lives in Thomasville with his wife Susie.
They met at the bowling alley when they were teenagers, and got married in 1981.
That same year, David began his more than six years of service in the U.S. Navy, working as an electronic technician on the U.S.S. Nashville.
“They basically covered the Mediterranean sea. He did a deployment in 1982 and one in 1985,” Susie explained.
As the years passed, life became more normal for them and their two young sons, up until 2007.
Decades after his time in the military, his family started to notice changes in his body, including muscle twitches.
“We kind of dismissed it, but then he started tripping and falling down stairwells and he was never a clumsy person,” Susie explained. “Then, he developed a limp.”
Those signs led to a diagnosis that completely changed life as Young and his family knew it.
ALS also is called Lou Gehrig’s disease, named after the New York Yankee baseball player who lived with it until his death in 1941. This disease was first described by Dr. Jean-Martin Charcot in the 19th century.
ALS usually strikes in late middle age (the late 50s is average) or later, although it can occur in young adults as well as in very elderly people. Some forms of ALS have their onset in youth. Men prior to the age of 65 or 70 are slightly more likely to develop ALS than are women. In the US, 1 to 3 new cases of ALS per 100,000 people are diagnosed every year; this is believed to be the same worldwide.
“I just remember we were just devastated,” David’s wife said of his diagnosis. “We woke up every day thinking this is not real.”
Doctors diagnosed then 48-year-old David with amyotrophic lateral sclerosis (ALS).
“It was very hard, very hard on both of us,” she explained.
ALS is a nervous system disease that causes people to lose muscle control, eventually losing the ability to breathe correctly.
“Most people when they get a diagnosis of ALS, it’s pretty much a death sentence,” Susie said. “The life expectancy is three to five years without a ventilator.”
Over the next few months, she watched her husband’s condition worsen: he went from having to walk with a cane to a walker, to then being in a wheelchair within a year.
Around that time, the U.S. Department of Veterans Affairs (V.A.) began to recognize ALS in veterans as “service-related.”
The V.A. says vets are about twice as likely to get the disease as people who have not served.
Susie said they have a few ideas of what may have led to David’s condition, including military vaccinations, lead paint on his ship, being around radiowaves as an electronic tech and asbestos.
Because his condition is considered service-related, the V.A. helps pay for the medical supplies and services David needs to survive.
In 2010, his declining health led the couple to a life or death decision that few of us can comprehend having to make: whether to put David on a ventilator.
“We were just so devastated and desperate. He wasn’t ready to leave his family,” his wife said. “We talked about it, and we were both just scared of what was coming down the pipe.”
Circumstances, including the death of Susie’s mother and the birth of the couple’s twin baby granddaughters, led the Youngs to extend David’s life.
She said he simply wasn’t ready to die.
He went on a ventilator in 2010.
“It’s hard to let something mechanically cause you to breathe,” his wife said. “You may not want to take a breath but it forces you to take a breath.”
Now, he said he’s used to it.
He is 61 years old and has been on the ventilator for more than 10 years.
He can’t use a majority of his muscles, so he can only communicate with his eyes.
Using a tool with letters on it, he spells out every word to his wife, including his testimony he described to WALB.
“He spelled it, and I wrote it down,” Susie said, reading from notes she had taken the night before our interview. “’I now would not change the relationship that I have with my heavenly father for 13 “well” years.’”
They say that is how they get through.
“Things that have come our way have just forced us to be strong,” Susie said. “Nothing happens to us without going through His hands in the first place.”
They said they always go back to their faith in God to find that strength.
As others face the beginning stages of the disease, David serves as an example, and his wife serves as an encourager.
She said they try to share their experiences with others, advising them to trust God and take things one step at a time.
Susie said ultimately, her husband would have served his country even if he had known this diagnosis was a possibility.
“I don’t think it would have changed his decision at all.” she said. “Do you?” she asked her husband. He made a signal with his eyes. “That’s a no,” she explained.
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