This interview is from SDPB's daily public-affairs show, In the Moment, hosted by Lori Walsh.
Today we're going to bring you not only one man's story, but we're going to play something that, before too long, no one will hear again: One man's voice saying the words he wants to say.
Maybe you've heard a bit of Tim Schut's story. He's from Chester. He's worked in financial services and real estate and retail and business. He's a son, a husband, a father of three, a community leader. He also has a rare brain disease. And that disease is progressively robbing him of his ability to speak. Eventually he'll use an electronic device to express himself. Even so, doctors have projected he has just 10 to 15 years to live.
It's an extremely rare disease, and its extremely rare that a man in his mid-40s should face it. No one knows why Tim Schut has been handed this deal, but he's decided use his diagnosis to connect with others. He stopped by the SDPB Kirby Family Studio in Sioux Falls.
(The following transcript was auto-generated and edited for clarity.)
Lori Walsh:
Tell me what voice banking is.
Tim Schut:
It's uploaded to the cloud and then downloaded to a tablet. A speaking device, if you will, in my own voice, 3,155 standard sentences. I'm almost done with the custom sentences. Like, "I love you, Jen. I love you Makayla." That's my wife and daughter's name.
So I love you, Alyssa. I love you, Katelyn.
Lori Walsh:
When the day comes when you can't say those sentences with your mouth-
Tim Schut:
Right.
Lori Walsh:
You'll be able to say them by touching the button. Were those the first sentences that you wanted to record?
Tim Schut:
Yes. Yes.
Lori Walsh:
I love you.
Tim Schut:
Yes.
Lori Walsh:
What else?
Tim Schut:
My mom asked for me to say, "Hi mom," because every time I talk to her, I say, "Hi mom."
Lori Walsh:
And then is there a process of words you'll be able to put together that don't make sense to you now that might in the future-
Tim Schut:
Right.
Lori Walsh:
Through artificial intelligence? What is the medical process of voice banking?
Tim Schut:
It's really quite simple. There's three dials: volume, rate, pronunciation. I have no trouble with volume. It's pronunciation and speed that I struggle with.
Lori Walsh:
And you're recording stories as well.
Tim Schut:
Right.
Lori Walsh:
Tell me about some of the things you're doing to preserve your voice and your words for the future.
Tim Schut:
I'll probably never get to meet my grandkids. So I bought "The Night before Christmas," three copies for my three daughters and recording those.
Lori Walsh:
And then you are having conversations like these, which can end up in surprising places. Once this is broadcast on the airwaves, who might hear it? Are you already hearing back from people who have heard your story?
Tim Schut:
Yes.
Lori Walsh:
Yeah. Tell me how?
Tim Schut:
Inspiring.
Lori Walsh:
Yeah.
Tim Schut:
I've had 10 or 20 people come up and say you're inspiring.
Lori Walsh:
Do you want to be inspiring? (laughter)
Tim Schut:
(laughs) Yes. Yes.
Lori Walsh:
Okay.
Tim Schut:
Yes. I want to be inspiring. My one word for 2022 is optimism.
Lori Walsh:
Right.
Tim Schut:
So I want to be inspiring. I want my daughters to see how to handle adversity.
Lori Walsh:
You're from Chester, and now you've moved back to Chester.
Tim Schut:
Right.
Lori Walsh:
But let's go back to when you lived there as a child. What was it like growing up in Chester, South Dakota?
Tim Schut:
Chester's a special place, special community. I grew up on a farm. I was involved in everything from basketball, baseball, FFA, jazz band, swing choir, chorus, National Honor Society.
Lori Walsh:
Wow.
Tim Schut:
I was active. And that continued on through my time at (Northern State University) and through my community involvement here in Sioux Falls.
Lori Walsh:
Tell me about your parents. Let's start with your mom or anyone else in your family growing up. What was Tim like as a child?
Tim Schut:
Right. I was good child, I think. I'm a rule follower. My parents both worked full-time jobs in town and farmed full-time. That's where I got my work ethic.
Lori Walsh:
What did you learn from your parents about adversity or optimism? You're trying to inspire other people, but at one point, you were inspired by others.
Tim Schut:
My mom is a very optimistic person. So I owe her credit for that.
Lori Walsh:
Did she do that with her words or with her actions?
Tim Schut:
Yes. Both.
Lori Walsh:
Give me an example.
Tim Schut:
She was the church secretary and she was at every funeral. And she was so giving. A few years later, she worked at Dakota State University. She was always volunteering us to move professors in and out.
Lori Walsh:
Really?
Tim Schut:
Right, right.
Lori Walsh:
Lift this ...
Tim Schut:
Yes. Yeah.
Lori Walsh:
Carry this ...
Tim Schut:
We had our own moving company.
Lori Walsh:
I like that.
Tim Schut:
Mm-hmm (affirmative).
Lori Walsh:
She saw a lot of funerals in a community like Chester.
Tim Schut:
Right.
Lori Walsh:
And most of those would have been for people she knew, families she knew.
Tim Schut:
Right. Right.
Lori Walsh:
How did you walk through grief as a family and as a community in small town, South Dakota. What is that like?
Tim Schut:
Everybody looks out for each other. People bring hot dishes, cakes. The small town community is really fantastic. They support each other.
Lori Walsh:
Once you found out that your life was going to be shorter than you thought it was going to be, because this diagnosis is giving you maybe 15 years to live, is that why you wanted to go back to Chester?
Tim Schut:
Yes.
Lori Walsh:
How come?
Tim Schut:
Well, my wife and I are both from there. We're high school sweethearts. And so when we were at (the Mayo Clinic), Jen said, "I think we should move home." And I said, "I agree." We were planning on spending our retirement years there. So I'm living my retirement years now.
Lori Walsh:
So you're at Mayo when you finally get this diagnosis. Let's stop now and tell people what exactly you were diagnosed with.
Tim Schut:
Primary progressive apraxia of speech. Let's take that word by word. Primary means affects the speech first, progressive means doesn't get any better. It just declines. Apraxia is I know what I want to say. The words just don't come out.
Lori Walsh:
Can you write?
Tim Schut:
Yes.
Lori Walsh:
You can read, you can listen-
Tim Schut:
Right.
Lori Walsh:
And process everything fine. But in your brain that connection between thinking and speaking -
Tim Schut:
I'm totally normal, except for the speech.
Lori Walsh:
You're in the car, you're researching this disease. You are weeping with your wife. And then you say, "Let's move home."
Tim Schut:
Yeah. Right.
Lori Walsh:
And that was the right thing to say.
Tim Schut:
Mm-hmm (affirmative). Right. Our girls love Chester.
Lori Walsh:
How come?
Tim Schut:
They can be involved in so many things, just like I was.
Lori Walsh:
Yeah. How did you tell them?
Tim Schut:
We were at Mayo for the whole week and Friday night we just said, "Daddy has a brain disease, eventually he'll go mute and die from complications of the disease." And then we had them listen to the John Meyer's podcast that I did in October. And then that's when they heard that 10 to15 years.
Lori Walsh:
Sure.
Tim Schut:
Yeah. Because I wanted them to hear it from me versus someone at school-
Lori Walsh:
Right.
Tim Schut:
Saying your dad has 10 to 15 years left to live. Right. So I just wanted to be transparent about to my girls.
Lori Walsh:
Yeah. How old are they now?
Tim Schut:
12, 14. 15.
Lori Walsh:
Okay. So they have a good concept of time.
Tim Schut:
Right.
Lori Walsh:
And they're smart enough to know that's not tomorrow.
Tim Schut:
Right.
Lori Walsh:
But it's not what they had planned either.
Tim Schut:
Right.
Lori Walsh:
And so how have they been handling that? What part of that would you want to share with the world?
Tim Schut:
Right. Kids are kids. They still talk back to me.
Lori Walsh:
As they should.
Tim Schut:
Right, right.
Lori Walsh:
They still have a job to do.
Tim Schut:
Right.
Lori Walsh:
How did you meet your wife? You said you were high school sweethearts. Tell me about the first date or the first dance or something that you'll remember.
Tim Schut:
We are in same keyboard class-
Lori Walsh:
Keyboarding music or keyboard typing?
Tim Schut:
Typing.
Lori Walsh:
That's what I thought.
Tim Schut:
So she actually liked me first, which I never lived down. So October 2nd, 1992 was the homecoming dance. And it was between Jen and another girl. And I chose Jen.
Lori Walsh:
Yeah.
Tim Schut:
And the rest is history. Right.
Lori Walsh:
Did you know what you were choosing? Like when did you know you were choosing more than just a dance? You were choosing your future.
Tim Schut:
Right. It took a few years. Oh, when I was in college, I really thought that she was the one for me.
Lori Walsh:
But she didn't go to Northern.
Tim Schut:
She went to State.
Lori Walsh:
She went to State.
Tim Schut:
Right.
Lori Walsh:
How you stay together? Lots of people fall apart at that point.
Tim Schut:
It was just meant to be.
Lori Walsh:
Yeah.
Tim Schut:
I spent significant weekends in Brookings- And vice versa.
Lori Walsh:
Did you ever live outside the state?
Tim Schut:
No.
Lori Walsh:
South Dakota born, raised, will stay.
Tim Schut:
Yes. Yes.
Lori Walsh:
Travel sure, but we're going to stay. What do you love about South Dakota? Why this place?
Tim Schut:
I just think this is a special state, I did Leadership South Dakota three years ago. And I just have a love for this state.
Lori Walsh:
Let's talk about Leadership South Dakota. John T. Meyer on the Lead More podcast talked about different kinds of leadership, right? What did you learn from Rick Melmer and the Leadership South Dakota cohort, that you are still applying today as you're faced with this new leadership challenge?
Tim Schut:
Right. That's a good question. Everyone has their story and people go through adversity. That's one of the things I learned in Leadership South Dakota, everybody really has adversity in their lives.
Lori Walsh:
What's one of your favorite places in the state? Like where do you go? Because I want to talk about, if you're willing, this idea of community and how many people are banding together to say to you, "Let's take a selfie, let's record you talking, what do you need, when do you need that casserole or whatever." But there's also private places that you go to get away. Tell me some place that you and Jen or you and your kids or you by yourself just like to escape to in this state.
Tim Schut:
It sounds pretty simple, but my woodworking shed. The girls are Pinterest junkies, and they come up with projects, create crafts. We, three years ago, did an Eastern South Dakota vacation, inspired by Leadership South Dakota. So we went to Argonne. It's by Howard, it's abandoned, it's a ghost town. And then we went to DeSmet and did the Laura Ingalls Wilder thing, and then Watertown, Fort Sisseton, and then Aberdeen. And we got to tour campus, my alma mater. And then we went down to Pierre and then Vermillion and then Yankton and back up.
Lori Walsh:
It's like this whole tour.
Tim Schut:
Right.
Lori Walsh:
What have you learned about the people in South Dakota since you started to lose your ability to form words in the way that you used to?
Tim Schut:
Right.
Lori Walsh:
What have you learned about your friends, your family? Community?
Tim Schut:
Right. My friends are very, very supportive. You find out who your true friends are in this situation.
Lori Walsh:
And people are showing up for you.
Tim Schut:
Right.
Lori Walsh:
Do they talk to you differently? I didn't know you before. It's the first time we've met. It's the first time I'm hearing your voice. But somebody else knows you at a different pace, with different enunciation.
Tim Schut:
Yes.
Lori Walsh:
Can you tell on their faces?
Tim Schut:
Yes and no.
Lori Walsh:
Okay.
Tim Schut:
My friends know what's going on and family and community in Chester, they know what's going on. It's strangers that I talk to who wonder what's going on with my voice, whether I'm drunk. I had to get a letter from my doctor stating that I have a speech disorder, in case I get pulled over by cops.
Lori Walsh:
So you can say, "This is why I'm speaking like this."
Tim Schut:
Right.
Lori Walsh:
Have you experienced any discrimination or a change in how you've been treated?
Tim Schut:
No. I haven't experienced that yet.
Lori Walsh:
Yeah.
Tim Schut:
Eventually a time will come when I'm tableting, right? So.
Lori Walsh:
Mm-hmm (affirmative). You have your tablet in front of you and somebody's, I mean, I'm sure you've thought about this, unless you're like a world class, non-worrier, unless you are a person who never worries about the future. When you can no longer speak in a way that people can understand, what do you want them to know about your brain?
Tim Schut:
That it's totally normal. I'm sharp as a whip.
Lori Walsh:
Yeah. "I have things to say."
Tim Schut:
Yes. I have things to say.
Lori Walsh:
You're into public speaking.
Tim Schut:
Mm-hmm (affirmative).
Lori Walsh:
In fact, this is how you first started to realize that things were not as they should be.
Tim Schut:
Yes.
Lori Walsh:
Tell me a little bit about some of the earliest indications and the work that you were doing when you realized something was wrong.
Tim Schut:
Right. So it started in June of 2020. I'm going to tell you the whole story.
Lori Walsh:
Yes. Please.
Tim Schut:
So I went to my dentist buddy, and I said, "Does this have anything to do with my teeth, my tongue, my mouth?" He said, "No, you need to get that checked." Literally two weeks later, I was at my primary care doctor. He prescribed speech therapy and a brain MRI; the brain MRI was clear. Six months later, we thought it was just stress. So I quit my job. So another brain MRI: Clear. They tested me for everything under the sun: Lyme disease, MS, everything. So then they referred me to Mayo for ALS testing.
Tim Schut:
My original appointment was scheduled for August 17th. I called every day 8 a.m. to see if there were any cancellations. So finally I got in June 21st, which was two months earlier than I was originally scheduled, because I just wanted answers. At 7:30 Monday morning, they ran me through series of tests. And then the ALS doc's like, "I don't think you have ALS, but we're going to continue to do testing." He said, "I'd like you to get you in front of one of our speech pathologists. And she happened to have opening 9:30 that Monday morning. Within 40 minutes she had me diagnosed: Primary progressive apraxia of speech. They discovered this condition at Mayo in 2010.
Lori Walsh:
Wow.
Tim Schut:
So relatively new diagnosis, they were just misdiagnosing it before.
Lori Walsh:
And the reality is there are so few people who have this. that impacts how much research has been done on this disease. And you're really young-
Tim Schut:
Yeah.
Lori Walsh:
For this.
Tim Schut:
Right.
Lori Walsh:
Tell me a little bit about how this usually affects people and at what age?
Tim Schut:
Two thirds of people are diagnosed over 65.
Lori Walsh:
Okay.
Tim Schut:
So I'm part of that third.
Lori Walsh:
So on the other hand they really don't know-
Tim Schut:
No. They don't-
Lori Walsh:
... in a young man, necessarily, how this is going to develop.
Tim Schut:
Right.
Lori Walsh:
You're like a unicorn!
Tim Schut:
Mm-hmm (affirmative). Yes, I am a unicorn.
Lori Walsh:
And speaking ... is that good for you.
Tim Schut:
Right.
Lori Walsh:
"Keep talking."
Tim Schut:
They said four things at Mayo: exercise, eat right, stay social and talk a lot.
Lori Walsh:
Yeah? How's that going?
Tim Schut:
Fantastic. I don't have any trouble with talking or exercise.
Lori Walsh:
Right.
Tim Schut:
It's the eating right, that I have trouble with!
Lori Walsh:
That's the hard part.
Lori Walsh:
You have an opportunity before you, that you could embrace or walk away from.
Tim Schut:
Right.
Lori Walsh:
Nobody says that you have to become a poster child for a brain disease. You don't have to be a poster child for adversity or overcoming hardship. You could stay in your woodworking shed, talking into the air.
Tim Schut:
Right, right.
Lori Walsh:
You could talk with your wife, talk with your children.
Tim Schut:
Right.
Lori Walsh:
And other than the benefits of being social, you don't have to be public.
Tim Schut:
Yes.
Lori Walsh:
And yet you are public.
Tim Schut:
Right.
Lori Walsh:
How come?
Tim Schut:
That's just who I am. I always dreamed of writing books and speaking. And it's ironic that I have to lose my voice to speak and write books.
Lori Walsh:
Okay. So that makes me think about something you said a few minutes ago about leaving your job. If your job was so stressful, and you were experiencing so much stress that you thought this thing that's happening to me could possibly be related to stress.
Lori Walsh:
That's a lot of stress. That's not: I need a vacation. That's a lot of stress. And now you are embracing this idea of, well, I needed this big crowbar to the head, to write the book that I really should have been writing all this time.
Tim Schut:
Right.
Lori Walsh:
Talk about that stress and what you are learning through this process. This disease is not caused by stress. This cannot go away by reducing your stress. Sorry it can't, but yet you have learned so much about stress. Tell me about that.
Tim Schut:
Right. I'm doing all the things I want to do now. It's just less stress.
Lori Walsh:
You journal?
Tim Schut:
Yes.
Lori Walsh:
Like how? Like do you have a routine, do you have a ritual? Journaling is really important to me. So I'm always curious what other people's journaling practices are.
Tim Schut:
So every night before I go to bed, I write stuff down. It's really interesting. My great, great aunt. We have her diary from 1931 through 1938. It's typed up. And it is just amazing to read the stories.
Lori Walsh:
There's some adversity within those pages, isn't there.
Tim Schut:
Right, right.
Lori Walsh:
Did she talk about her adversity?
Tim Schut:
Yeah. It's started before she dated her husband and it ended when they were married.
Lori Walsh:
Wow.
Tim Schut:
So the whole courtship was documented.
Lori Walsh:
Any tips in there for you and Jen? Are there things that you're learning?
Tim Schut:
No.
Lori Walsh:
No. Not necessarily relevant now! Going through something that's hard impacts your partner a lot. What are some of the things that you want people to know Jen needs and some of the things that she really doesn't need.
Tim Schut:
She needs love and support. She doesn't need pity.
Lori Walsh:
There's not much to pity here with the way that you present this. There's not a lot of pity. There's no self-pity.
Tim Schut:
Yeah.
Lori Walsh:
Although no one would fault you for having a few days of anger or whatever. Are you still faithful, still a church goer? Is faith part of this for you?
Tim Schut:
Yes.
Lori Walsh:
Did you get that from your mom?
Tim Schut:
Mm-hmm (affirmative).
Lori Walsh:
Yeah. What do you want to do next?
Tim Schut:
My business book called Speechless.
Lori Walsh:
Nice.
Tim Schut:
And tomorrow we leave for the Daytona 500. My dad's taken all three boys to the Daytona 500 and then-
Lori Walsh:
Your two brothers?
Tim Schut:
Right.
Lori Walsh:
Okay. Yeah.
Tim Schut:
And then next week we're going to Turks and Caicos with our girls.
Lori Walsh:
Nice.
Tim Schut:
And after that Summit League, my mom's the office manager for the Summit League.
Lori Walsh:
How important is it, because we've been through (and are going through) this pandemic. We're recording this in February 2022. February is just a month that's hard for a lot of people, because of South Dakota, because of winter. And then you throw in pandemic, winter slowly its grip, and hardship, adversity, loss. How important is it for you to have something every day to look forward to?
Tim Schut:
Yes. Very important. I try to schedule something to look forward to every day.
Lori Walsh:
Yeah. Give me an example.
Tim Schut:
For example, last night my daughter played basketball up in Arlington and that was something I looked forward to.
Lori Walsh:
Tell me about each one of your kids. Just a little bit, something about them.
Tim Schut:
Makayla is my oldest. All of our kids are very smart. They're all in band. When we first went through the birthing class at Avera, the instructor said, "If you had one thing that your kid could inherit, what would it be?" And I said, "The dimple on my chin." And sure enough, she has a dimple on her chin.
Lori Walsh:
Oh nice!
Tim Schut:
Katelyn is my quiet one, but now she's out of her shell. She's a natural athlete as an 8th grader, this is her first year of playing basketball. The high school principal came up me and she's like, "You wouldn't know that it's Caitlyn's first year of playing basketball." Because she picked up playing basketball so quick.
Lori Walsh:
Yeah.
Tim Schut:
And then my youngest Alyssa, she's rowdy! (laughter) She's rowdy. She's very athletic as well.
Lori Walsh:
They make things out of wood with their dad inspired by Pinterest-
Tim Schut:
Yeah. Right.
Lori Walsh:
And the world. Right. And they keep you running.
Tim Schut:
Mm-hmm (affirmative).
Lori Walsh:
Anything else that you wanted to cover today?
Tim Schut:
Well, I'm just thankful for this lead time, because heart attack victims and car accident victims don't get a chance to say goodbye.
Lori Walsh:
Everyone will have your voice. Recorded. For a long, long time to come.
Tim Schut:
Right, right.
Lori Walsh:
Tim Schut, thank you. Come back. I think these things that we go through ... it's like a prism. We're going to see it through a different angle at a different time. And then the prism will turn and there'll be a different angle at a different time.
Tim Schut:
Right.
Lori Walsh:
And I hope that you keep recording your voice and your thoughts. And you're welcome to do that for the listeners of South Dakota, public broadcasting. Anytime.
Tim Schut:
Thank you.
Lori Walsh:
Thanks.
