Rusty Hilst is fighting for his life with ALS and was grateful for all the support he has received from the community since learning of his diagnosis in December.
“I am humbled, appreciative and overwhelmed by people’s generosity,” said Hilst who was diagnosed with bulbar-onset ALS on Dec. 14. “It meant a lot to me. There have been a large number of students who have been willing to help.
“I’ve had an incredible life,” Hilst said. “I’ve had a job I love and have never had to work a day in my life. I’m looking forward to what adventures are out there for me. As for the illness right now, I’m trying to be as positive as possible and try not to dwell on it. I plan to go day by day and hope tomorrow is as good as today.
According to the ALS Institute, amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that attacks motor neurons in the brain and spinal cord, leading to wasting muscle and loss of movement.
Unfortunately, ALS is also called Lou Gehrig’s disease, after the New York Yankees Hall of Fame baseball player. Gehrig, who played 17 seasons for the Yankees, died of ALS on June 2, 1941, 17 days before his 38th birthday.
Although progression varies from case to case, bulbar-onset ALS tends to progress more rapidly than limb-onset cases.
Early symptoms include slurred speech, difficulty chewing and swallowing, excessive choking, and weakness or spasms in the muscles of the face, jaw, throat, and vocal cords, especially the tongue.
“It takes your muscles off one by one,” Hilst said. “He might lose his voice. This is the scariest part. I’m working with an ALS team in Wichita and they’re going to provide me with a speech adaptive device that looks like an iPad. I hope I don’t need it for a while. My life right now is pretty normal. I have to sleep in a recliner because my legs are cramping.
“About 6,000 people are diagnosed each year (with ALS) out of 300 million (Americans),” added Hilst.
Hilst said ALS is an extremely expensive disease to fight.
One of the prescription medicines Hilst takes is called Relyvrio (sodium phenylbutyrate/taurursodiol), which costs $162,000 a year. The co-pay costs $48,000 to $49,000 annually.
“It will help me fight the disease more effectively,” Hilst said. “Extend your lifespan by another 3-6 months and delay symptoms a little longer. I’ve talked to many people. It’s hard to talk about how terrible the disease is.”
In addition to dealing with ALS, Hilst also battled COVID-19 for 10 days. He said the COVID-19 pandemic forced his retirement from the courtroom.
“That put me down,” Hilst said. “I was a super popularizer and gave it to four or five people. They are all healed.”
Hilst is currently renovating his home as he expects the illness to put him in a wheelchair and the home will need to be wheelchair accessible. He just hopes the renovations won’t affect the landscaping work he’s been doing on the outside of his home.
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“The plan is to help me stay in my house longer,” Hilst said. “They (the workers) have been working on my house for two weeks and it will take another three weeks to finish.”
Hilst has had an outstanding career as a teacher, coach and sports presenter. He estimates that he has covered more than 5,000 games in more than 50 years.
“I taught for 54 years at Hutch High — 53 in the same class,” Hilst said. “I taught math to high school students. I have followed Hutch High and HCC men’s and women’s basketball and Hutch High and HCC football for 50 years. I coached golf at Hutch High for 31 years.
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Hilst also worked with the Kansas Golf Association for 47 years. The KGA merged with the Kansas Women’s Golf Association and the Kansas City Golf Association to form Central Links Golf. He is also associated with the United States Golf Association and has provided scoreboard calligraphy at USGA tournament events.
“I’ve worked with a lot of people at golf tournaments, mostly junior golf programs,” Hilst said. “I’ve had the opportunity to meet a lot of people.”
Hilst is getting support from a GoFundMe fundraising page set up by her brother Kent and six others. As of Thursday afternoon, the GoFundMe page has raised nearly $55,000 towards a goal of $125,000.
To view the GoFundMe page and donate, visit https://gf.me/v/c/yrpt/rally-for-rusty-hilst-vs-als
Read more about the Battle of Hilst on his Facebook page at https://www.facebook.com/profile.php?id=100089066334953
“It wasn’t my idea,” Hilst said. “It brings tears to my eyes what people do when someone is in trouble. The goal is to remain as optimistic as possible and be mindful and realistic about the end result. I don’t dwell on anything. I have few regrets. I’ve had a very good life.
“Life is a terminal disease. This led to the trial. I hope I can handle it gracefully. I hope I can play some golf this year. I bought a new driver just in case.
