Tim Schut’s life took an unexpected turn when in June 2021, the Sioux Falls man was diagnosed with primary progressive apraxia of speech (PPAOS) — a progressive brain disease that affects the ability to speak and limits life expectancy to a 10-15-year span.
“Speech was my superpower,” said Schut.
Having cried for about an hour after he finally got the diagnosis, Schut decided to write a book about his life, goals, and lessons, to “put his life in a time capsule” for his three daughters – 16-year-old Makayla, 15-year-old Katelyn and 13-year-old Alyssa.
His other goal was to educate people about this rare disease, said his mother, Pam Schut. Tim Schut presented his book “American Boy: The Story of Tim Schut” on Monday, May 21, at Oak View Branch of Siouxland Libraries before a crowd of people.
The first signs of the disease can pass unnoticed even by the closest relatives. Schut’s wife Jennifer said she attributed the first manifestations of the disease to higher stress levels. Schut’s mother said she started noticing minor changes in her son’s speech patterns.
“I could tell something was different,” said Pam Schut. “He knew what he wanted to say, but it wasn’t coming out the way he wanted.”
At that time Tim Schut worked as a private banking manager. He had also served on the Sioux Empire United Way Executive Committee and other community organizations, as well as participated in the leadership programs, such as Leadership Sioux Falls.
“He’s just been super, super active,” said Pam Schut. “He’s always been a leader.”
The disease’s rarity meant that getting a diagnosis was challenging. Schut’s examinations began in 2020, and test results said that he was perfectly healthy. But his condition kept deteriorating, and in March 2021 he had to resign from his position in private banking.
In June 2021 after consulting with a speech pathologist at the Mayo Clinic, Tim Schut was finally diagnosed with PPAOS.
Mayo Clinic Neurologist Hugo Botha said PPAOS is a progressive brain disease that makes the patients lose their ability to make specific movements, such as articulating and later swallowing.
In the end, it harms cognitive, planning, and decision-making skills. The condition is diagnosed upon its clinical picture.
Although this disease is rare, the abnormal tau proteins that cause it are also involved in forming diseases, such as Alzheimer, as well as certain forms of dementia and Parkinson’s disease.
As PPAOS progresses over time, in best-case scenarios the patients lived with it for more than 10 years. In others, however, it fully developed within 5-6 years from the onset of symptoms.
“It makes it very hard in any individual patient to predict what might happen,” said Botha.
Botha noted that it is not clear why PPAOS affected some people rather than others, and no specific treatments for the condition had been identified so far. The clinical research in tau proteins, however, continues.
Tim Schut was sent home with recommendations to lead a healthy lifestyle, practice speaking often, and visit speech pathologists. He was left with the awareness that he was a rare case. As a man in his mid-40s, he was also younger than other people diagnosed with PPAOS.
Tim Schut had a habit of picking a word each year that he wanted to concentrate on. His words from earlier years included “intention” and “focus.” But his 2021 chosen word was “courage.”
“Courage is important when you are going through this battle,” he said.
With courage, Tim Schut started a new position in a real estate broker company, moved his family to the countryside that allowed his children to go to a smaller school district, and concentrated on making the most out of each day.
After that resolution, he wrote and published his first book, gave a TED Talk on losing the ability to speak at TedX Sioux Falls, and started his Twitter, Instagram, and Facebook pages — Speechless With Tim, which is also the name of his second book.
He also visited a handful of countries in Europe and said ancient Egyptian pyramids in Cairo were also on his bucket adventure list. Despite medical prognosis, in line with his words of 2022 and 2023, which are “optimism” and “perseverance” respectively, Tim Schut said his aim is to “beat this disease.”
“I’m a positive person,” he said.
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