SHELDON—Steve Waldstein wants people to be aware that he has been diagnosed with a rare genetic disease.
The 47-year-old Sheldon man has spinal and bulbar muscular atrophy — more commonly known as Kennedy’s disease — which is a slowly progressive neuromuscular disorder with symptoms typically starting to appear in men who are between the ages of 30 and 50, according to the Kennedy’s Disease Association.
“I get a lot of questions,” Steve said. “Some people just know something’s wrong, but not really anything that’s going on. It’s not necessarily awareness for me, but it’s awareness to the disease and kind of what it’s like.”
According to the Kennedy’s Disease Association, the disorder brings about muscle weakness and wasting throughout a person’s body, which is detectable in the arms and legs as well as in the face and throat, and leads to difficulties with speaking and swallowing, serious muscle cramps and other symptoms.
“More than likely, I’ll probably have trouble eating certain foods,” said Steve, the dean of applied technology at Northwest Iowa Community College in Sheldon.
“It makes sense now because I’ve had problems for years where sometimes I just can’t swallow,” he said. “It’s almost like my muscles become paralyzed in my throat and I feel like I’m choking.”
Julie, his wife, said Kennedy’s disease is similar to the fatal disorder called amyotrophic lateral sclerosis, which is better known as ALS or Lou Gehrig’s disease.
“It runs the same course as ALS basically,” said Julie, a registered nurse at Sanford Sheldon Senior Care. “It’s just a much slower progression. ALS will progress very quickly. This doesn’t.”
‘Mine will progress’
Steve talked about what he was told by doctors after he was diagnosed with Kennedy’s disease during the fall of 2018.
“Mine will progress over the course of anywhere from five to 10 years,” he said. “They always say that this disease won’t kill me, but my quality of life is going to be diminished.
“A lot of people that have this will pass away due to complications from like pneumonia — things like that — but they say that the disease itself doesn’t kill you,” he said.
Steve recalled an incident that occurred about two years ago — before he knew he had Kennedy’s disease — after he and Julie had spent most of a day painting the exterior of their home.
“I don’t know how to describe it,” he said. “I was getting ready to go down the basement stairs. I was at the very, very top. My right leg just gave out on me. I thought it was in front of me when it wasn’t there and I fell headfirst down the basement stairs and broke my collarbone.”
Steve has had a long history of randomly falling down, but he and Julie always laughed it off, thinking nothing of it.
“For years and years, he’s fallen all the time,” Julie said. “I just thought, ‘How can he be so clumsy?’ We laugh about it all the time.”
“You’ve got to laugh about it sometimes,” Steve said. “Deep down, it really bothers me, but you’ve got to kind of stay positive.”
However, Steve started to wonder whether something was physically wrong with him during a home boys basketball game at Sheldon High School in December 2017.
He was the freshman head coach and an assistant varsity coach for the Orabs during the 2017-18 season when the squad qualified for the Class 2A state tournament in Des Moines.
“I couldn’t stand up off the bench by myself,” Steve said. “That’s when I really thought, ‘Something’s wrong here. Something is not right.’”
He mentioned he enjoyed the state tournament experience, but he also described as “terrifying.”
“I knew I was going to be walking, and I knew if I fell, I wasn’t able to get up on my own,” Steve said. “We sit on chairs that are down on the concrete and the playing court is two inches above that, so I was even down lower.
“I knew I was on TV,” he said. “So for me, I enjoyed it, but it wasn’t enjoyable, if that makes sense. I didn’t want to embarrass Sheldon or the team. I didn’t want to draw any attention.”
When the 2017-18 basketball season was over, Steve went to see Dr. Ryan Becker, a family medicine physician at the Sanford Sheldon Clinic, in March 2018.
“I could just feel something was not right,” Steve said. “I know some other people that are overweight like I am and they could stand up on their own. I was having issues, so I went to Dr. Becker and he said, ‘We’ll get to the bottom of it, no matter what it is.’ And that’s really what started everything.”
Steve was sent to the Sanford Neurology Clinic in Sioux Falls, SD, and underwent numerous neuromuscular tests conducted by Dr. Efrat Feldman, a neurology specialist, during the spring of 2018.
“I was poked and prodded and sent through some tests that I don’t ever want to do again,” Steve said.
‘It was hereditary’
He recalled a conversation that he had with his mother, Dianna — around the same time he was undergoing the neuromuscular tests — about a distant cousin of his who had been diagnosed with Kennedy’s disease.
Steve looked up the disorder online and immediately realized he probably had the same disease. He also thought his maternal grandfather, Herman Haack, must have had the disorder as well, although many family members thought he had multiple sclerosis.
“I saw it was hereditary, I saw the symptoms,” Steve said. “When I was reading all of this and knowing that the cousin who had it — his grandfather is a brother to my grandfather. It runs in the family.”
He told Feldman about what he had found out, underwent a genetic test for Kennedy’s disease and received the results later during the fall.
“It came back positive for Kennedy’s disease,” Steve said. “I knew I had it. I didn’t need a genetic test, but at the same time, I wanted to have a little bit of peace of mind.”
Since he found out he has Kennedy’s disease, he has made many adjustments in his life, including using a continuous positive airway pressure — CPAP — machine to maintain normal oxygen levels while he sleeps.
“What bothers me is my breathing is deteriorating quicker than what they want,” Steve said. “I can tell even in the last year that things are more of a struggle for me. That bothers me.”
He started using a cane in March.
“It took me a long time to use my cane,” Steve said. “I don’t use it every day. It’s not going to be a crutch. I’m not going to use it if I don’t have to. I’m learning to understand my body and what it’s telling me.
“Some days I wake up and I know as I get out of bed that I’ll be using my cane,” he said. “If I do that, I’ll use it in the morning, try not to use it midday if I don’t need to, but then I’ll use it again at night. It’s hit or miss.”
He is not a fan of steps, but he has access to handrails on both walls of the staircases inside his home.
“Stairs are rough; stairs are terrible,” Steve said. “I can still get up them. It just takes me two minutes to get up the stairs here because I can only go up with my good leg, which is really my left leg, but I’ve got to be hanging onto the handrails. I’ve got to pull myself up.”
There also are handrails and a bathmat that stays in place inside the couple’s tub at home that help him to get in and out of it easier. He also has a handicap parking permit for his red 2006 Dodge Ram 1500 pickup truck.
“We’ve been doing little things like that, just — I hate to say it — handicap-accessorizing the house,” Steve said. “We should’ve done it months ago, but I said, ‘No.’ I was very bullheaded. I didn’t want handicap handrails.”
One activity that he enjoys is doing the laundry. However, the washer and dryer being located in the basement of his home has made that task more difficult for him.
“We’re working on trying to get it moved up here to the main floor,” Steve said. “I might be doing five loads on a weekend. That simple task wipes me out. By the end of the day, I’m done.”
He loves to cook and bake, especially homemade apple pies.
“Just peeling an apple — holding it and peeling it — I can do one,” Steve said. “When it goes, it just falls and I literally can’t lift my arm up. If I go sit down for 10 minutes, then I’ll come back and I can peel another one, maybe two, and then it’ll just go again.”
‘That does help’
Another task he enjoys is mowing the yard, but that activity also takes a physical toll on him as does getting ready each morning for the day.
“It’s good exercise, so I try, but I’ll stop three times and take a 20-, 30-minute break and get back up and keep doing it,” Steve said of mowing the lawn.
“Just getting ready in the morning can take up to double the time. Showering and getting dressed will take it out of me. I need to sit for a little bit before I continue on.”
He has physical therapy twice a week with Kayla Kruger, a physical therapist at ProActive Physical Therapy & Sports Rehab in Sheldon.
“She really didn’t know much about Kennedy’s disease or what it was, but being the professional she is, she did a ton of research and phone calls and that does help,” Steve said. “I mean, it really does. I want to be able to get up on my own. We’re not there yet. I don’t know if I’ll ever get there.”
Since his Kennedy’s disease diagnosis, he has been grateful for the support he has received from his family, friends, co-workers, NCC, the Sheldon School District and other people who have the disorder he has met through online Facebook groups.
However, Steve — who grew up playing basketball and football and running track at Crestland High School in Early — has yet to come to terms with the fact that he has a disorder that brings about muscle weakness and wasting in a person’s body.
He is still embarrassed every time he falls down randomly because he cannot pick himself up on his own, even if Julie and their five children — Kody, 29; Taylor, 22; Coltan, 21; Brady, 16; and Luke, 13 — are not.
“I’m a social person,” Steve said. “I can talk to anybody. I love being around people, but I find myself not wanting to go to events if I know there’s going to be stairs, a ton of walking, anything like that.
“It doesn’t bother Julie if I fall or my kids even, but it still kind of embarrasses me,” he said. “I don’t want to fall in front of them. I think it embarrasses them even though I know it doesn’t; it’s just in my head.”