Zimmerman battles ALS with come-what-may attitude

At only 39 years old, Darrel Zimmerman is battling ALS, the terminal disease that affects nerve cells in the brain and the spinal cord. The Washington man who has a 3-year-old son and a 6-month-old daughter said he and his wife of four years have a deal: They don’t talk about “the end.”
Zimmerman, who likely began showing symptoms of the fatal disease in November 2016 but wasn’t diagnosed until Aug. 2, 2019, was given a 40-to-60-percent chance of surviving another 9 months.
Zimmerman said he is now focused on enjoying whatever time he has left, adding that the fact that he is so young – the average age at diagnosis is 55 – and is heavier set– he is 6-foot-three and weighs 330 pounds – are advantages.
“It’s all about saving muscle,” he said, adding that his muscles work themselves to death. “The muscles move all day and all night. They are working constantly, and they eat themselves of all energy and die. When they run out of fat, they eat muscle.”
He said that’s why he has an advantage with extra body fat, and doctors’ have him on a 5,000-calorie-a-day program to keep plenty of energy available for the overworked muscles.
Zimmerman said he eats to the point of getting sick to get all of his calories in each day, and, with a laugh, he added that he drinks muscle-building shakes just like body builders drink.
Zimmerman has a come-what-may attitude about the terminal disease that threatens his future.
“We try to have fun with it when we can,” he said of choosing to laugh about the obstacles that the disease has put in front of him.
Zimmerman and his mother spent minutes in a fit of giggles the day before the interview, he said, after his sometimes-uncontrollable muscles caused him to accidentally fling his glasses across the room while doing paperwork.
Zimmerman's mother, Judy (Zimmerman) Hill, was a former teacher at Concordia High School for 32 years, and retired in 2007.
“This disease is weird,” Zimmerman said in the slow and labored manner with which his speech has deteriorated to in only the past few weeks. “Every day you wake up and wonder, ‘What are we going to learn to do different today? Just this morning I had to use two hands to pour a gallon of milk. Yesterday I could do it with one.”
“Everything I do is that much harder now,” he continued.
“I carried the freezer into this house by myself. Now a gallon of milk kicks my ass.”
Zimmerman said he can no longer pick up his six-month-old daughter, Lily, who was born about four weeks after his ALS diagnosis last August, and he has to be careful when holding her because of his lack of muscle control.
“There’s all these little muscles in the wrist and hand you don’t think you need until they are gone,” he said as he held out his hands, adding that one of his thumbs is nearly useless now.
His walking has also become difficult. His slow and laborious walk across the room to answer the door leaves him in a sweat despite the use of a walker.
He falls more now and has trouble keeping his balance, his mother said, and he will soon need a motorized wheelchair to get around. As his muscle control continues to fail, that wheelchair will have to be controlled by eyeball movement.  
Last summer just after diagnosis Zimmerman spoke with Washington Rotary members about how he will one day have to communicate through a computer when he loses the ability to speak. The computer’s camera tracks his eyeball movement as he looks at letters and common words to put together sentences, and the computer speaks for him.
His speech will be one of the first things to go, he said, and it has already started to slip as his throat muscles weaken. Since January his ability to speak has deteriorated.
“Lily cries when I try to sing Winnie the Pooh to her now,” Zimmerman said during an interview two weeks ago at his home. “But when I play a recording of me singing the song from my phone that I recorded before my voice got like this she likes it.”
Zimmerman said he just finished recording messages to his children that they can have in the future. He said it was important for him to record his natural voice while he still had it so that his children would one day know what he sounded like when a computer has to speak for him.
Or for when he is no longer here.
Zimmerman said it was “hard” to record personal messages for his children.
“You are talking to your kids in the future about their wedding or graduation or about something you are going to miss,” he said. “Or maybe I won’t, I don’t know. But I won’t be able to talk to tell them these things in my natural voice.”
Zimmerman grew up in Concordia and was an accomplished athlete at Concordia High School. He was the 4A state wrestling champion, medaled in state discuss and was all-state 4A football, among other accomplishments. He graduated in 1998.
He played football in college where he met his first wife. They have a daughter, 22-year-old Tristan. He moved to Denver, Colo., where he went to tech school. He was “good” at computer programming and managing servers, he said. He became a software engineer.
After complaining to some of his coworkers about the hassles of dating, they set him up with their cousin, Ha. She lived in Vietnam, but they wanted her to come to America. After a long-distance relationship and travels to Vietnam, the couple married in March 2016.
The newly married couple visited his mom on the farm near Morrowville that Memorial weekend. As Zimmerman tells it, his wife instantly fell in love with the area. The humidity in late May reminded her of Vietnam, he said.
The couple moved to Washington by the Fourth of July that year after the tech company he worked for allowed him to work remotely.
“I wanted my kids to know this way of life,” he said of the farm and small-town living.
In addition to working on the computer from home he helped his mother and her husband, Rick Kruger, on the farm.
He loved helping on the farm, he said.
But it was while working on the farm that he began to notice odd injuries and disabilities.
He thought nothing of them, though.
He would frequently roll his ankle while working on the farm. He attributed that to his boots.
He also began to struggle to turn the key in the ignition switch and grip chopsticks.
There were also the muscle twitches in the arm.
But it wasn’t until a year ago – February 2019 – when Zimmerman shattered his ankle and broke his tibia while wrestling his high school nephew, Eyann Zimmerman, ahead of regional wrestling, that Zimmerman’s constant injuries began to be questioned. He was helping his nephew prepare for regionals because his nephew lacked someone big enough and tough enough to practice against, he said, but the wrestling moves in no way should have broken any bones.
When the leg failed to heal, Zimmerman was sent to a neurologist in May, just 10 months ago. It was after a round of tests there that he was sent on to KU Med in August where, after more tests, Zimmerman was told he had ALS.
But Zimmerman “knew in [his] mind” already in May that he had the disease, he said, so he was prepared for the diagnosis in August.
What he wasn’t prepared for was the reactions of his family. He had a two-year-old son, Levi, and his wife was pregnant the couple’s second child when the diagnosis came.
“We had long talks and prayed a lot,” Zimmerman said of discussions with his wife in those early days after diagnosis. “We don’t want to give up hope, but we want to be ready for the worst.”
He continued to work on the farm and drove tractor in the weeks after confirming his terminal disease about seven months ago, but he quit his computer job as soon as he was diagnosed. He said the company he worked for has been really good to him, and the health insurance has been important, but ALS patients instantly qualify for disability, Zimmerman said, and he needed to get his things in order.
He spent the rest of last year filling out hours of forms and calling insurance three times a week as he tried to get everything in order before his body failed too much.
“I worked non-stop from August to Christmas to make sure everything was taken care of so that I can enjoy the rest of my time,” he said.
He has his life insurance in place and has just finished making his own funeral arrangements.
“My dad died when I was 17, and I learned a lot,” Zimmerman said, adding that he didn’t want there to be anything left for his family to do when he dies.
“I know how hard it would be for everybody else,” he said of making the funeral plans.
Zimmerman says matter-of-factly that the day is nearing when he will require a feeding tube and trach. He chokes more and more, he said.
Zimmerman said he is “glad” he didn’t know about his ALS diagnosis any sooner than he did.
He said he hangs on to hope that maybe he can live many years with ALS like Steven Hawking, who was diagnosed with ALS at age 22 and lived to the age of 76 when he died in 2018. Many people with ALS can expect a lifespan of 2-to-5 years from the date of diagnosis.
“It’s hard to go from doing everything and helping mom and the family at the farm to almost feeling like a burden,” he said.
Zimmerman is applying for various trials and participating in as much voluntary testing as possible to help other people down the road.
“This disease is fatal,” he said. “You may as well be your own guinea pig.”