When David Masters started experiencing fatigue, muscle atrophy and the loss of movement in his right pinky finger, he assumed it was symptoms of old age.
He was barely 30.
“I was the ever-shrinking man,” he said.
David learned in 2006 that he was instead suffering from progressive muscular atrophy, an incurable condition that causes muscle weakness, deterioration and paralysis due to the breakdown of motor neurons in a person’s spinal cord. It wasn’t good news, but David and his wife, Jodi, were relieved to at least have some answers.
But four years later, in 2010, doctors gave the Papillion couple the news they had feared: David Masters’ PMA had progressed to amyotrophic lateral sclerosis, or ALS. It is a fatal neurodegenerative disease that attacks and kills the motor neurons in the brain and spinal cord, according to the ALS Association. As those neurons die, the brain cannot initiate and control muscle movement. Patients lose the ability to move, speak, eat and breathe. They usually die of respiratory failure.
Jodi Masters is her husband’s caregiver, 24 hours a day, seven days a week. She dresses him, feeds him, helps him go to the bathroom and gives him his medicine, among other things.
“Even when he is sleeping, I am on call,” Jodi, 37, said. “He can’t roll over in bed by himself, so he has to wake me up to help him reposition. If I leave the house to run an errand, I have to make sure he can contact me in case of an emergency. If I am going to be gone for an extended period of time, someone has to be here to help him.”
Jodi said it would be difficult to have a hired caregiver come into the house to help, but knows that eventually, it might be necessary.
“Here is the person you love most in the world, an incredibly vulnerable person due to a really horrible disease, and you have to trust someone else to come in and take care of him,” she said.
For now, Jodi said, she tries to handle any caregiving situation that comes up.
The couple has different phrases, almost like code words, that describe what David needs that other people wouldn’t know. “Left-side squeegee,” for instance, means David wants Jodi to wipe on the outside of his nose from the top of the nostril all the way down over the opening of the nostril and then wipe over his lip.
Jodi helps David with tasks most of us take for granted: She turns on music. Helps him update a lengthy Facebook status. Brushes his teeth.
“We are both young,” Jodi said. “Neither one of us ever imagined we would be doing this at this time in our lives.” It’s difficult on both of them at times, she said.
But, Jodi said she has found ways to cope.
“I’m lucky because the things that keep me happy are easily accomplished as a caregiver,” she said. “I am a voracious reader and I love to play the piano. I keep in constant contact with my mom and sisters on Facebook. They are very important to my health and well-being, and help keep me going strong.”
She said the couple, with the help of her sister, hosts small monthly concerts at their home that features local musicians.
“This helps us not only stay social and meet new people in the comfort of our own home, but also helps raise ALS awareness in our community,” Jodi said.
Life expectancy for people diagnosed with ALS is two to five years. David, though, has a form of the disease that progresses more slowly — but the end result is the same.
“It’s very slow, which makes it a strange case,” he said. “But it’s not stopping. It’s like watching an ice cube melt on the counter. At the end of the day, I’ll be a puddle.”
About 20,000 people in the U.S. suffer from ALS, which is commonly referred to as Lou Gehrig’s disease after the famed New York Yankees baseball player who died of it in 1941. ALS typically strikes men between the ages of 40 and 70, according to ALS Association data.
Members of the military are twice as likely to be diagnosed with ALS than civilians, the organization said. David was in the Air Force when he was diagnosed with PMA. In 2007, he was medically retired early and worked as a civilian contractor at Offutt Air Force Base for the next three years. By then, he had lost use of his arms but could still walk. In January 2010, he had to stop working altogether.
Four years later, David fell in his driveway and chipped a tooth. He knew he could no longer work. Four years later, he started using a wheelchair. Jodi moves him from his bed or chair to his wheelchair and back.
“I was ready for it,” David said of starting to use the wheelchair. “You can be stubborn, or you can realize that once you do stuff like that it’s a lot easier to sit in a chair and know you are safe.”
David is now unable to move very well. He can still chew and swallow, so his wife feeds him. He drinks his morning coffee through a glass straw.
Jodi said it takes her about 45 minutes to feed David “because even though he can still chew, it’s difficult and takes a lot of concentration on his part so he doesn’t bite his tongue or swallow before his bite is chewed up, or aspirate small particles like rice.”
David is grateful he can still speak, though his speech is slurred. He uses his toes to type on his computer. He knows it’s going to get worse.
“We know it’s coming,” he said. “But we are fighting the good fight for as long as we can.”
Added Jodi: “It’s heartbreaking, and it’s hard not to worry. When I married David, he was a bodybuilding, street-racing, electric-guitar playing, alpha male. It’s been hard for us to adjust to him requiring help 24/7. But David has an amazing attitude and a great sense of humor.”
The Masters’ two youngest children, 11-year-old Radley and 9-year-old Sabrina, have never known their dad to be healthy. David’s 20-year-old son, Cody, was 13 when his father got sick.
“You have to focus on the good,” Jodi said. “Being parents of young children helps keep you focused because it doesn’t matter what kind of ALS day we are having — they still need us to be their parents. Thankfully, our children are kind and compassionate and are big helpers.”
Despite the hardships, the Masters family is determined to think positive and cherish every moment David has left. Jodi said she feels blessed for the constant support of family and friends.
“It’s a lot easier to face,” she said, “when you know you’re not alone.”