SHELDON, Iowa — Steve Waldstein’s unexpected falls in the hallways always brought laughs.
But deep down, as he laughed with his colleagues at Northwest Iowa Community College, Waldstein wondered why he couldn’t get up after falling for seemingly no reason.
“I was thinking about what was going on here,” said Waldstein, who at the time was dean of the school’s applied technology division.
As early as 2014, he got tired easily climbing a few 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 performed tests and referred him to a neurologist. During this time, Waldstein shared his symptoms with his mother, and she informed him of a cousin who was experiencing similar issues. She also told him about her father, who died before Waldstein was born and had been diagnosed with multiple sclerosis, showing many of the same symptoms.
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When Waldstein told his neurologist about his cousin and his grandfather, it all made sense to the doctor. The symptoms were a perfect match for Spinal and Bulbar Muscular Atrophy, a rare genetic condition that causes slow loss of muscle. Genetic testing confirmed that Waldstein had the disease, the result of a genetic mutation on his X chromosome.
The October 2018 diagnosis is not a surprise.
“I was relieved but at the same time a little scared,” said Waldstein, who had time to research his condition, also known as Kennedy disease to a doctor who diagnosed it. and studied. Related to amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, Kennedy’s disease progresses more slowly and is probably his grandfather’s disease.
Although there was no cure, Waldstein knew the disease would take longer to rob his muscles of their strength, forcing him to one day use a wheelchair and eventually depend on someone to care for him. him.
It’s been pushed since the diagnosis.
A native of Early, Iowa, Waldstein had taught industrial technology and coached at Dike-New Hartford and Armstrong-Ringstead high schools, combining those positions around private sector employment as an instrumentation instructor and chemical engineer at Emerson Process Management. He was named Dean of CNC Applied Technology in 2012, shortly before his symptoms became more frequent.
Looking back, Waldstein said the signs began to appear in his 30s, when he struggled to get up after squatting down to talk with his athletes while training. He attributed this to getting older and being out of shape.
But once diagnosed, Waldstein continued to work, exercising extra caution when walking around campus or visiting CNC’s business and industrial partners. In 2020, his neurologist encouraged him to consider becoming disabled so he could continue to enjoy the things he wanted while he was able.
Waldstein said he realized last year that he could no longer do the job to his full capacity. Sitting at his desk wasn’t a problem, but making off-campus tours was getting harder and harder. He elected to go on long-term disability and his last day in the office was June 3.
“It was one of the hardest decisions of my life, to walk away from something I love,” Waldstein said.
Now 51, he sees a physiotherapist and tries to stay active to delay the continued deterioration of his muscles. Like anyone with a chronic illness, he says, some days are better than others.
“Every day is a struggle to prepare,” he said. “Showering is a very exhausting task for me. I just can’t do certain things that I would like to do.”
He walks with the help of a cane or walking sticks. His wife, Julie, a nurse, pushes him to stay active, especially on days when he is still recovering from intense activity the day before.
“She gets the brunt of my frustrations sometimes. She’s the unsung hero of the house here,” Waldstein said.
He has found that coping with the disease is sometimes more difficult mentally than physically. It can be difficult to stay positive knowing that he will one day be unable to walk or take care of himself.
“Some days it’s really, really, really hard for me,” he said. “I strongly believe that God has a plan for me in this state of 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 residents of local nursing homes and working with technology students and teachers in Sheldon. These volunteer activities will allow him to get out of the house, stay active and pursue his passions for education and socializing.
Waldstein can no longer ski or hike, he said, but he will find other activities to do with Julie and their five children, such as strolling on the beach at a favorite Florida vacation spot using a wheelchair designed for navigating the sand. . This recent experience allowed him to overcome some of the embarrassment that his illness sometimes makes him feel in public.
He said it also helps him realize that all kinds of people face bigger challenges than him.
“I don’t want people to feel sorry for me. I have a great life and I always have big plans. It’s a big hurdle in the road that I have to deal with.”
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