Don Koenig was just 43 when he found out he had ALS, or Lou Gehrig's Disease.
It wouldn't be long before the former sailor was losing the use of his body and, in 2005, his wife Carmen Morales-Koenig says they decided he should get a tracheotomy.
That was three years before the Department of Veteran's Affairs would change its policy on ALS. Now, veterans are covered at 100 percent disability. Then, Carmen says they had to fight harder to get care.
She says the VA wouldn't approve a tracheotomy for Koenig so she signed him out of the Durham hospital and wheeled him across the street to Duke.
"In order for him to qualify for a tracheotomy," Morales-Koenig said, "what they told me was, 'Don needs to stop breathing, go into respiratory distress,' and then they will wheel him in.
I walk into Duke Emergency room and said, 'They don't want me at the VA, he needs a tracheotomy because he's on a bi-pap machine 24-7, and they're like, 'OK.'"
She says that kicked off over a decade of hardships, largely driven by decisions made by the VA.
"We fight our battles as they come," she revealed.
Among the first of their battles was a special bed designed to reduce Koenig's bedsores.
"Don was in a wheel chair for two weeks before they said OK."
Then, it was a small ventilator with a longer battery life so Koenig could get out of the house for longer stretches.
"We go out to restaurants," she said, "we go out to movies, we go out to the grocery store. We have a life."
Morales-Koenig says Medicare came through on the ventilator where the VA did not.
More recently, it's been that bed again. The VA finally authorized one, but Morales-Koenig says it's broken a half dozen times in the last two months. And every time the tech comes out to fix it, she says her husband is in agony.
"His heart rate goes up like crazy, so he's very anxious. The pain is outrageous."
Morales-Koenig's life has changed too.
"Once we didn't have insurance anymore and I had to rely on the VA for our care," she said. "I had my first psychogenic seizure."
She says she gets seizures almost every day - sometimes up to 16 - on account of the stress.
"Every time all this stuff stacks up, I go into a seizure and I pass out."
And she says that should qualify Koenig for 24-7 care.
"We're getting 12 hours of nursing and eight hours of CNA, which still leaves us a four hour gap," she lamented.
Morales-Koenig tells a story of how, four years ago, she loaded her husband and his nurse into the car and drove to Washington, DC to complain to anyone who would listen at VA Headquarters
"I wheel him in there, we go through security and they're like, 'Why is he here?' And I was like, 'He has a complaint.' And they said, 'Oh, we don't see veterans here.' And I said, 'But you're the Veterans Administration and he's a veteran with a complaint about one of the other VAs that is not providing the care.'"
What did they tell her?
"That basically, I was in the wrong state."
Now, Morales-Koenig says it's all about keeping up the fight, albeit at a more deliberate pace.
"We live one second at a time; one hour at a time. We fight our battles as they come."
Because of her own health issues, Morales-Koenig says she takes it one battle at a time.
"When I'm down, he picks me up," she said. "When I'm at my worst, he holds me. I put my head under his hand and i feel the energy, the strength. And I feed out of that."
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