NICK HYTREK Sioux City Journal
SHELDON — Steve Waldstein’s unexpected falls in the hallways always provided a good laugh.
But deep down, as he chuckled along with his Northwest Iowa Community College colleagues, Waldstein wondered why he couldn’t get back up after falling for apparently no reason.
“I was thinking what in the world is going on here,” said Waldstein, who at the time was dean of the school’s applied technology division.
As early as 2014, he’d tire easily when walking up a couple sets of stairs. A doctor told him he was overweight and out of shape, but losing weight didn’t solve the problem.
The falls became more frequent, and Waldstein visited a new doctor, who ran tests and referred him to a neurologist. Meanwhile, Waldstein shared his symptoms with his mother, and she informed him of a cousin who was experiencing similar problems. She also told him about her father, who died before Waldstein was born and had been diagnosed with multiple sclerosis, having many of the same symptoms.
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When Waldstein informed his neurologist about his cousin and grandfather, it all made sense to the doctor. The symptoms matched perfectly with spinal and bulbar muscular atrophy, a rare genetic disease that causes a slow loss of muscle. Genetic testing confirmed Waldstein had the disease, the result of a gene mutation on his X chromosome.
The October 2018 diagnosis came as no surprise.
“I was relieved but at the same time kind of scared to death,” said Waldstein, who had time to research his condition, also known as Kennedy’s disease for a doctor who diagnosed and studied it. Related to amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s Disease, Kennedy’s disease progresses more slowly.
Although there’s no cure, Waldstein knew the disease would take longer to rob his muscles of their strength, forcing him to someday use a wheelchair and eventually depend on someone to take care of him.
He’s pushed on since the diagnosis.
An Early, Iowa, native, Waldstein taught industrial technology and coached at Dike-New Hartford and Armstrong-Ringstead high schools, sandwiching those positions around a private-sector job as an instrumentation and chemical engineer instructor with Emerson Process Management. He was named dean of applied technology at NCC in 2012, not long before his symptoms became more frequent.
Looking back now, Waldstein said the signs started showing in his 30s, when he had a hard time standing up after squatting to talk with his athletes while coaching. He chalked it up to growing older and being out of shape.
But once diagnosed, Waldstein continued to work, using extra caution when walking on campus or during visits to NCC’s business and industrial partners. By 2020, his neurologist encouraged him to think about taking disability so he could still enjoy the things he wanted to while he was able.
Waldstein said he realized last year that he could no longer do the job to his full ability. Sitting at his desk was no problem, but making off-campus visits was becoming harder. He chose to go on long-term disability, and his last day in the office was June 3.
“It was one of the most difficult decisions of my life, stepping away from something I love,” Waldstein said.
Now at age 51, he sees a physical therapist and tries to stay active to delay the ongoing deterioration of his muscles. Like anyone battling a chronic disease, he said, some days are better than others.
“Every day is a struggle to get ready,” he said. “Showering is a very exhausting task for me. I just can’t do some things that I’d like to do.”
He walks with the assistance of a cane or walking sticks. His wife, Julie, a nurse, pushes him to keep active, especially on days when he’s still recovering from strenuous activity the day before.
“She sometimes gets the brunt of my frustrations. She’s the unsung hero of the house here,” Waldstein said.
He’s found that dealing with the disease is sometimes more challenging mentally than physically. It can be hard to stay positive while knowing he’ll someday be unable to walk or care for himself.
“Some days it’s really, really, really difficult for me,” he said. “I am a firm believer that God has a plan for me at this state in my life. Some days I have a long conversation with him trying to figure out what that plan is.”
For now, his plans include visiting local nursing home residents and working with technology students and teachers in Sheldon. Those volunteer activities will enable him to get out of the house, stay active and continue to pursue his passions of education and meeting people.
Waldstein can’t ski or hike anymore, he said, but he’ll find other activities to enjoy with Julie and their five children, such as taking walks on the beach at a favorite Florida vacation spot using a wheelchair designed to navigate over the sand . That recent experience allowed him to overcome some of the self-consciousness his disease sometimes makes him feel in public.
He said it also helps him realize all kinds of people face bigger challenges than he does.
“I don’t want people to feel sorry for me. I have a great life and still have great plans. It’s a big bump in the road that I have to deal with.”
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