WILLMAR — When she took her vows 19 years ago, Deanna knew her husband, Troy Schiesser, as “always a go-getter, on his feet, running in every direction.”
“He talks with his hands,” she laughed, adding, “Type A.”
So she understood the surprise of friends and many others who knew her husband from his retail career in Willmar when they found him in a powered wheelchair at the Kandiyohi County Fair in August.
What surprised Troy Schiesser was that when he told them he had been diagnosed with amyotrophic lateral sclerosis, most admitted they knew very little, if anything, about the disease.
It has made its decision. Schiesser, 50, said he will spend a large part of his journey with this terminal illness telling people about ALS. He wants people in the area to know about ALS in the hope that this knowledge can help advance the research needed to find a cure for it.
ALS is just one of the medical challenges facing this Willmar family. 13-year-old twin sisters Lexi and Laci were diagnosed with hypertrophic cardiomyopathy when they were three months old. In her case, a genetic mutation causes the muscles in her heart to harden.
Her diagnosis at such an early age is unusual.
Deanna said she took Laci to the ER in Willmar for a respiratory virus, but also because, “As a mom, I just knew something was wrong.”
Soon the infant’s blood oxygen levels dropped and respiratory failure threatened. She was flown to the Twin Cities for specialized treatment. A doctor attending to her heard a heart murmur that eventually led to the diagnosis of hypertrophic cardiomyopathy.
The twins have since been implanted with defibrillators. Laci is scheduled to be evaluated for a heart transplant this fall. Her parents assume that Lexi and Laci will both need a transplant at some point.
The twins’ older and younger siblings, Courtney and Jaxson, have not yet been tested to find out if they could also have the genetic mutation that causes the disease.
Her father was going from work to the bank when his foot fell in a hole in 2020, leaving him with back pain that wouldn’t go away. Six months later, after various attempts to relieve his back pain had failed, he saw a local neurologist and was subsequently referred to the University of Minnesota.
In June 2020, more than 80 years after baseball star Lou Gehrig announced his diagnosis with ALS, Troy Schiesser was given the same diagnosis. On any given day, 450 Minnesotans are living with ALS, according to information State Senator Tom Bakk provided to the Legislature earlier this year seeking research funding. At the same hearing, Marianne Keuhn, vice president of nursing services for the ALS Association of Minnesota and the Dakotas, said an average of two people in Minnesota are diagnosed with the disease each week.
Troy Schiesser suspects he had symptoms of the disease at least a year before diagnosis. It weakened his legs. He can now take no more than 10 steps at a time. He also experiences a weakening of his upper body muscles.
He grew up in Ortonville, Minnesota and has since learned that three others who lived within 10 miles of his home had been diagnosed with the disease. Doctors told him that genes are responsible for a small proportion of ALS cases. Genetics is not the cause in his case.
He has made Willmar his home since 1990 when he began his studies at Ridgewater Community College of Business and Marketing. He is known to many for his career at Payless Shoes and later as manager of the holiday stores and service stations in Benson and Willmar.
Troy and Deanna said they were lucky enough to call Willmar at home.
For one, the community has the medical infrastructure to help them. Troy is regularly given IVs of drugs believed to help slow the progression of ALS. If the local cancer center weren’t willing to take him in, he’d have to go to the Twin Cities or Duluth for the frequent, six-hour IVs, Troy said. He couldn’t do that, he said.
The community, particularly members of their local First Covenant church, have also provided much volunteer help to the family at their home on Becker Avenue. The family is now awaiting a costly project to add a first floor bathroom and other features he will need as the illness progresses.
The Willmar schools offer distance learning for the Schiesser children.
Deanna dedicates her time as a caretaker. “Believe,” she and her husband answered when asked what helps them to master the challenges.
Troy said he and Jaxson and Courtney attempted to capture video of his symptoms and progression. They intend to develop a YouTube presentation to educate people about the disease.
Deanna admits that there are times when everything feels overwhelming, but recalls, “I’m the one who has to be strong for everyone else.” Her mother told her that special angel wings must be waiting for her in heaven.
The couple said they take things one day at a time. “You absolutely have to stay positive,” Troy said. “It doesn’t pay to linger.”
