Some things haven’t changed.
Tim Schut still chooses a single word to focus on each year. In 2021, the word was “courage.”
“My word for 2022 is ‘optimism.’ It has ‘Tim’ in it,” he says with a wide, inviting smile.
As he has since 2010, he still identifies an individual who has made an impact on his life and takes a selfie to post on Facebook. For 2021, the individual was Gregg Brown, managing director of NAI Sioux Falls which specializes in commercial real estate.
“I started with NAI on June 2 and was diagnosed on June 21. Gregg was who I needed when I needed him. He is so supportive of me and my disease,” Schut posted with the selfie.
The diagnosis to which Schut referred wasn’t a run-of-the-mill disease with proven therapies and a hopeful prognosis. Schut was diagnosed with a rare neurodegenerative disease called primary progressive apraxia of speech (PPAOS).
Simply stated, he is losing the ability to speak. In time, he may experience other difficulties as well, such as an inability to swallow, but at present that is not evident. Instead, on what he identifies as ‘bad speech days,’ he struggles with multi-syllabic words in an effort to articulate what his sharp mind wants to communicate.
Schut, a 1995 graduate of Chester High School, has returned home with his family since receiving a diagnosis that was both good news and bad news. The good news was that he finally had a diagnosis. A year earlier, in June 2020, he began to have problems that concerned him.
“I was having trouble getting words out and that’s just not me,” he said.
His primary care physician prescribed speech therapy after an MRI came back clear. Six months later, his physician referred him to a neurologist.
“He tested me for everything under the sun,” Schut said. Although the neurologist had been practicing medicine for more than 40 years, he couldn’t offer a diagnosis and referred Schut on to the Mayo Clinic in Rochester, Minn.
“I begged and begged and begged to do ALS testing in Sioux Falls,” Schut said.
ALS – amyotrophic lateral sclerosis, better known as Lou Gehrig’s Disease – is a fatal neurodegenerative disease. That was one of the possibilities which was discussed when Schut was referred to Mayo.
“I was freaking out because I thought I had ALS,” Schut recalled. However, after tests were conducted at Mayo, that was ruled out and he received another referral – to a speech pathologist.
“Within 40 minutes, she had me diagnosed,” he said.
After a year of not knowing, and weeks of fearing the worst, he and his wife Jennifer finally knew what was wrong. Unfortunately, because the average onset of PPAOS is usually later in life – often in the late 60s or early 70s – and because it’s so incredibly rare, the long-term prognosis is unclear.
Because it’s a neurodegenerative disease – like ALS – Schut expects it to affect his life expectancy, but with the optimism which he is cultivating this year he sees a silver lining. Unlike those who die in a car accident or following a heart attack, he noted, he has time to bring closure in his life.
That being said, he’s not giving up on living just yet. He continues to work, traveling to Sioux Falls to work at NAI Sioux Falls a couple of days each week while also working at Signature Realty in Madison.
While he can still speak, Schut is talking with student groups and medical professionals about his experience, helping them to understand the disease from the inside. He’s also working on a book for his family and has plans to write a book about building and maintaining relationships in business, which has the working title of “Speechless.”
Schut admits that he experiences a sense of urgency at times, not knowing when his voice will go, but that has not affected his primary relationships. He still adores his wife, who was his high school sweetheart.
“My wife, Jen – it’s been hard on her, anticipating the future. We thought we would grow old together,” Schut said.
His relationship with his girls – who are in sixth, eighth and ninth grades in Chester – is no different than what other parents experience.
“Kids are kids,” Schut noted. “They still talk back to me.”
But he hopes he is being a role model for them. Schut said that people have a choice when life gets tough – they can react positively or negatively.
“I want my daughters to realize I handle adversity positively,” he said.