One Step at a TimeOct 22, 2023 02:03AM ● By Mike Whye
Photo by Bill Sitzmann.
Almost anyone who visits the gym operated by Daryl Kucera near the Millard Airport might think it's a regular place to work out. Its large, bright, and airy rooms have exercise machines, various weights, and thick pads for floor workouts.
Yet, this gym isn't simply full of athletes striving to be faster and stronger for sports events; the majority of the people here are staving off conditions that are slowly robbing their bodies of normal lives, like multiple sclerosis, Parkinson's, and ataxia, among others.
When Kucera opened the gym in August 2001 near 149th Street and Industrial Road, he called it Fast Forward and intended it to be for middle school and high school athletes desiring to improve their speed and agility for athletics. A Columbus native who’s long held a passion for strength training, Kucera was a director of credit risks at First Data Resources when he created the gym as a side job where young athletes could work out safely.
"Just seeing 300 to 400 athletes in a weight room with just three to four coaches," he said about school programs before pausing. "Something bad was going to happen."
Kucera wanted to teach the kids proper strength training, plyometrics, and speed training with safety and proper form at the forefront.
However, a month later, Kucera lost sight in one eye…then the other. When a spinal tap confirmed multiple sclerosis was tearing through his body, he and his wife Pattie, a registered nurse at the Veterans Administration Hospital, closed the gym.
Despite the onset of MS, the couple thought about re-opening the gym, but physicians warned Daryl.
"They said, 'Your MS is going to get worse; your symptoms will get worse. You're going to get tired,'" Kucera recalled, adding that no one really knows if MS will worsen or stay mild on a case by case basis.
Sticking with his job at FDR, Daryl went ahead with reopening his gym after a couple months and worked out there with the athletes. When his sight returned, Kucera believed his MS was under control. It returned in March 2002.
"It took out my entire right side," he said.
Eventually, he wound up in a motorized wheelchair. Once more, he closed the gym and reopened it after another two-month absence. Determined to not let MS get the better of him, Kucera returned to working out. As he did, he noticed something—the workouts didn’t cancel out the symptoms of MS, but they appeared to slow them down.
Kucera mentioned this to Mary Filipi, a nurse practitioner who was caring for him at the University of Nebraska Medical Center.
"He told me, 'I've been going to the gym and working out and that's what's improved everything. It worked for me, do you think it would work for anyone else?'" Filipi remembered, who noted that doctors were saying that a person with a neurological disease should not stress their body, exercise, nor get overheated lest they accelerate symptoms.
Wondering if Daryl might be onto something, Filipi, who has a PhD in neurological science, sent six people with MS to Kucera’s gym. There, with the aid of a physical therapist, he modified workout programs for them. Most importantly, Filipi told Kucera that he must monitor how everyone fared. Gradually, Kucera upped the ante by encouraging 20 people to participate in the program, then he had 36 people and, after a year, participants numbered 96 in all.
Kucera’s records showed that those who exercised did much better than those who didn't, observed Filipi.
"So, I would send my patients there," she said. "There were a lot of people and providers, even today, who say you can't do that but Daryl showed them you can do that and you should do that. He's held fast to this belief and that's why he did what he did.”
At the time, Kucera began to wonder what happens to individuals with MS once their therapy is complete. Insurance companies tell people with MS that the individuals don't have any more coverage after a while, he said, and the therapy departments tell the patients there is not much more that can be done for them.
"So, we modified our gym and began working with individuals with MS in May of 2003," Kucera said, who left FDR shortly after.
He renamed the gym MSforward to stress its new emphasis and made it a 501(c)3 entity. Now, it's the only facility in the nation to handle MS like this.
About 75% of the people using the gym during the daytime have MS or another debilitating disease. The gym, which is open six days a week, was relocated to a strip mall at 13530 Discovery Dr. in Millard in 2016, and still works with athletes in the evenings.
As he spoke in the gym recently, Kucera was occasionally nuzzled by his white lab, Vander, who has something of a soothing old soul personality which endears him to those visiting the gym. Because of what he's been through, Kucera, who's 60, said he can relate to anyone who comes into the gym.
"The illness wants to take you down, down, down," Daryl explained. "Maybe you can lift five pounds, six pounds and now seven pounds. Even if you're at five pounds for 20 years and you maintain that. Then we've done a good thing."
Patrice Gorup began going to MS Forward last October to help with his primary lateral sclerosis, an ultra-rare disease that affects about 2,000 in the U.S. He was officially diagnosed in 2018, although he had sensed earlier that it was subtly affecting his balance, dexterity, and strength. On Mondays, he has a private one-hour session at the gym with a trainer.
"We work on eye-hand coordination, cardio (exercises) and I'm working at getting stronger so risk hurting myself or breaking a bone if I fall," Gorup said.
He also attends a Friday group session.
"We do an exercise and always have a group share," Gorup continued. "There's a social component to what we do. You share your stories, tell about what helps us, muscle tightness, baths, and so on."
Evaluations show Gorup is holding his own against PLS and has improved in some areas.
"That's highly unusual for a degenerative disease and I attribute that to my attitude of being positive and grateful for what I have,” Gorup said.
He said is also grateful for what Kucera has done with the gym—plus the physical therapists, occupational therapists, and occupational therapist assistants who work at MSforward.
After hearing about MSforward, a woman from Texas who could not stand or walk came to exercise in the gym.
"After two weeks, she stood without help and took a few steps,” Filipi said. "She was crying, her husband was crying, everyone was crying."
Meagan Murphy, who graduated this spring from Creighton University with a doctorate of occupational therapy, said that she was attracted to work for the gym by the positivity that exists there.
"There's a passion that shines when you walk through the facility, how unique and different it is," the Minnesota native said. "It's different from how health care practitioners think."
Kucera said, "Our biggest component is the person. Everyone else, be that the doctors, the pharmas, they look at the illness. We treat the person, not the illness. They need laughter, community, and they need much more than just working with their illness."
MSforward has broadened its scope beyond its original dealings with MS, expanding to help people with dementia, Parkinsons, ataxia, and sight impairment. The gym also hosts video conferences to reach people across the country.
While insurance does not pay for MSforward to help people, the gym has raised money to help, tallying up $500,000 over the past four years, Filipi said, who writes grants and helps with fund-raising. MSforward also works individually with patients about expenses.
Beyond grants, Mary has enlisted University of Nebraska–Lincoln engineering students to design exercise machines to augment what's at the gym. Recently, they won a competition held by the International Consortium of MS Centers with three inventions: a wheel chair with flippers on it to "kick" the ball, a horizontal hip sled which is a workout machine, and a cardio-exercise machine that accommodates wheelchairs.
"Nobody had anything like them in the world," Filipi noted.
As for what Kucera has done in the last 20 years, Filipi said, "He's very special, not just to the world but to MS. He said people with MS don't have disabilities. They have challenges. He's also said your day is not complete until you have done something for someone who can't pay you back."