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- Alright, Tim, anything you wanna do before we get started?

- Yeah, pray.

- Alright, let's do it.

(thoughtful music) - I've been praying with and for my friend Tim Scott, ever since he was first diagnosed with primary progressive apraxia of speech.

It's a rare condition affecting less than one in a million.

Tim is a savvy communicator and a business leader in Sioux Falls.

He's known in the business world for his charisma, his optimism, and his ability to connect with others.

He's been posting daily selfies with everyone he encounters to document his journey.

Tim often says speech is his superpower.

You'll hear that phrase a lot in the next half hour.

Let's get to know Tim in his younger years as he first began developing this, his superpower.

(instrumental country music) Tell me where you grew up.

- Next to St. Jacobs Church.

Then we moved to a farm by my paternal grandparents' place.

- So you grew up next to a church?

- Yes.

- What was that like?

- I had a chocolate milk for breakfast and watched "Top Gun" and then as the church, (church bells ring) they were bells ring, ringing.

We had to go church.

- The church, St. Jacob Church is just kind of like our second home.

In fact, I comment sometimes that all of our family pictures are taken at the church.

(laughs) The background is always a wall at the church (laughs) because we're here so much.

- One of the things you've been doing over the last eight months is you take daily selfies.

Tell me about that idea and why you do it.

- I started in November 10th, 2021.

I just came up with the idea myself, and I'm like, I'm gonna take a selfie every day I talk and no longer do it.

I wanna document my journey.

- From a young age, you could tell he was, he was gonna be a success in business because he was always coming up with these great money making plans with me.

One of the first ones I remember and I, again, I don't know if this might need to be cut, I don't know, 'cause it involves a crime.

- Did you have a name for this bootlegging business?

- (laughs heartily) Uh, T&L.

- We got some cheap, cheap blank tapes and we started running off copies of these tapes and we'd spend the afternoon write- You know, hands cramping up, writing the, the track listings on the tape and stuff like that.

And I had one of those nice briefcase style tape case and this gets used a lot in our money making schemes.

And we filled it up with whatever we were selling and we'd go to school and- - We didn't learn about Tim's illegal bootlegging business until we heard Jeff Lamberty tell us, "the other day at Buffalo Trading Post" again one of those things, we had no idea.

(laughs) (instrumental country music continues) I was gonna say, going backwards a little bit, one of the leadership things that I remember about Tim, he was president of our local 4-H chapter.

Again, he started at an early age with his leadership skill.

- Yeah, Tim was always a talker.

I mean he could always relate to people.

He could always talk through situations.

He wasn't afraid to go up and visit with somebody.

He was a real communicator.

- In your early days, what was your favorite speaking moment?

- Probably to state FFA egg sales champion.

I was that.

I sold with pride work boots and the judges said I was only only one to ask for the sale.

Yeah.

So that's kind of my pinnacle moment in my high school career.

It gave me the confidence that I could go to college and basic self sold.

No other person in our family had ever went to college.

- Tim graduated from Northern State University with a bachelor's in marketing in 1999.

During his tenure he flexed his unique social skills as student body president and became an excellent salesman at a local trade home shoe store.

- I was making 17, $18 an hour in the mid nineties.

I sold more than anybody else.

- What made Tim a good salesperson?

- He could talk and talk and talk.

That's what I, I'm so glad to be here doing this with you 'cause I want people to understand what a talker he was.

You know, just a persuader and he was really good at that.

And that's kind of what's being taken away now and that's the one thing that really hits me is how he is losing probably, besides being a good person, he's losing maybe his greatest strength.

- What made you such an exceptional salesperson?

It's more than just talking.

It's more than knowing a name.

Something sets you apart.

- It is my genuine care for people.

People are my drug.

I get a high of being around people.

Yeah.

People are my drug.

- I grew up in Chester Wentworth area on a farm close to Wentworth and Madison, lived there my whole life.

- I met Jen at Keyburn class.

- I sat next to him and I thought he was hilarious.

- I always give her a hug or ten because she liked me first.

I had a friend ask her if she'd be willing to go to homecoming dance with me and she said yes.

- So Tim, whose superpower is communication and sales, sent a designee to close the biggest deal of his life.

How does that make you feel?

- Yes, he did.

Now that you say it that way, that sounds terrible.

No, you know, it took him a while to hone those skills so we'll cut him some slack.

- Date number two was a football game.

Chester played.

Date number three, we went to Madison and went out for supper and then went to a movie and then when the movie got over, I asked if she wanted some ice cream and she said, "No, I'm still full from supper."

And I said, "Scott Rule, there was always room for ice cream 'cause it fill in the cracks."

(chuckles) - Alright and so when was the first kiss?

- October 23rd.

- And then you knew?

- Mm-hmm.

(uplifting music) - Jen's superpower is caring.

I notice that a lot.

(uplifting music continues) - Tim and his wife Jen have three daughters.

Mikayla, Caitlyn, and Alyssa.

They were living their best life in Sioux Falls with Tim as a real estate broker at NAI Sioux Falls, as well as serving as a board member of the Sales & Marketing Executives Incorporated and the Stockyards Ag Experience.

Then his life changed, as he worked with doctors in Sioux Falls and Rochester to realize his diagnosis, primary progressive apraxia of speech.

- (sighs) I think it's ironic that I'm going to lose my superpower, which is speech.

I can't believe this is happening to me.

- Seeing him every day, I didn't notice as much as other people probably did.

You know, we just have short conversations and it's pretty casual.

So he is not having to concentrate.

Other people noticed him just not, and he noticed it too.

You know, doing presentations and things that things were just not as smooth as they had once been when speaking.

- Just playing.

- Out.

- Good job.

- Bueno.

- So I went to my primary doctor.

He prescribed speech therapy and a brain MRI, the brain MRI was clear.

Six months later, no improvement.

So later referred me on to neurology, another brain MRI clear.

They tested me for every thing under the sun: Lyme disease, MS.

I even had sinus surgery in 2018.

So I went to my ENT doc and he couldn't find anything wrong.

They sent me to Mayo for ALS testing.

I got in on June 21st, 2021.

So, 7:30 that Monday morning we met the ALS doc and he's like, "I don't think you have ALS, we're going to continue to do the testing so we can check that off the list."

So he said, I want getting you in front of one of our speech pathologists.

She happened to open 9:30 that Monday morning.

Within four minutes, 40 minutes, she had me diagnosed with primary progressive apraxia of speech.

So, we took an early lunch and read up on it and just went to the car and just cried.

Our world turned upside down, in a minute.

It was very devastating.

We were at main little (indistinct), (clears throat) so very rare, less than one in a million.

They don't know what causes it.

There's no treatment, no cure.

Very devastating disease.

- You know, just like what are we gonna do next?

You're probably not gonna be able to work in the same capacity that you're working in, for we don't know how long.

But, what are we gonna do with our family?

What do we wanna do?

And a lot of the things were like, "Well, we wanna do all these things so we need to start doing them."

We don't know how long we're gonna have.

(sniffles) And the thing about this disease is we, they just don't know.

People progress differently, have different other symptoms than, so we just don't know.

And I think that's probably what is the most difficult is, we don't know how this is gonna progress.

(soft music plays) - The diagnosis, primary progressive apraxia of speech or PPAOS.

In order to really understand it, I wanna give you an example of what it takes to have a conversation.

First you have language and you select the right words that you wanna say, depending on who your communication partner is, knowing that they have a shared vocabulary and so forth.

So you select those words and then once you have your message formulated, you have to send a plan from the language center to the muscles that execute those words.

So when the problem is up here with the language center, we call that aphasia.

When the problem is with sending that plan down to have it properly executed, it's called apraxia.

Well, looking at, because PPAOS is a problem with programming, muscle execution, and knowing that language is usually intact, listening to his language and knowing that he was having no difficulties with language in his work, and then going through a speech examination, which really has two pieces, a perceptual exam.

And that's really listening carefully to the speech to pick up on any patterns that seem to be apparent.

And the second piece is a physical examination of the muscles of the face and the mouth.

And we're looking for the range of movement, making sure that things can move quickly, is it one side versus another or is it symmetric?

And what's the strength of those structures?

And most of those movements, except when I asked him to do complicated sound sequences, were pretty intact.

- It's a brain generative disease.

So the top two ways of dying are falling down and inability to swallow.

It starts with speech.

- Depending on the part of the brain that's malfunctioning, we can predict what symptoms that person is gonna have very accurately.

But there's also another level in terms of what exactly is actually damaging the brain and why does that process start in the first place.

And there we still have lots of questions that are unanswered.

The protein must play some role because we see a reliable association.

Some people think that the tau proteins directly are toxic to the nerve cells.

And in that view, basically what happens is as the tau proteins accumulate and maybe spread throughout the brain, it's causing damage.

And that's why you see progression of the disease.

Another common view is that the communication between the nerves themselves reach a point where it's so noisy and so dysfunctional that that damages the nerves.

And then the proteins accumulate as a side effect.

A little bit like if you have the city that is in disarray, there might be garbage that starts piling up.

But it's not that the garbage caused the disarray.

That's the sort of view that the second school of thought has there.

And the first one would be that the proteins themselves are driving the process.

And when that starts malfunctioning, that's when you start getting symptoms.

And then disease progression is really more and more of this global system going offline.

- I signed up for the study.

There are 20 people in the study.

I'm the third youngest one.

I asked Mayo, the ages of the youngest two, and they couldn't tell me because of privacy rules.

They discovered this condition, this disease in 2010 at Mayo Clinic.

So I'm in good hands.

Since then, since 2010, they have only had a hundred people in the study.

That's how rare it is.

10 to 15 years life expectancy.

- I think in terms of how a disease like PPOS may shorten someone's life, it is unsurprisingly not directly related to the speech problem.

Having a speech problem can be really frustrating and debilitating, but it is not in and of itself life-threatening.

And so typically as the disease progresses, if people develop problems with their balance, or with swallowing, those would be life-threatening things.

(gentle music playing) - My life changed in that moment because I realized that I was a ticking time bomb.

I was not expected to live as many years as I'd hoped.

I feel thankful that have this lead time because heart attack victims and cardiac victims don't have that chance.

I also did voice banking, which will already upload your voice to the cloud and then you download to the tablet.

So when I lose inability to speak, I can talk that way.

- Now, voice banking is the process of preserving your speech, if you will, by making some recordings when speech is still relatively easy to produce.

- I have trouble with my speech, so I use this computer to talk.

My name is Tim.

- From those recordings, they splice every sound out of a number of different contexts.

- I love you ladies.

- So 3,155 standard sentences, I-300 custom.

- I love you Alyssa.

I love you, Mikayla.

I love you, Caitlyn.

- What does a bad day look like for Tim?

- Well, he'll smile all the way through it.

(laughs) What we notice though, as far as the disease part of it for Tim, a bad day is when we're trying to communicate with him and his conversations.

There are sometimes we'll talk to him and go, "It's a bad day," because the communication is just not good.

- I feel both places, my head and my heart because it's just so frustrating to not be able to get any words out and I'm still able to get words out.

It's just that one day I know that I'll be unable to talk.

I never been mad or angry.

That's just not me.

I'm a very positive person by nature.

I've never been mad.

But one day I will become mad.

So I have one day bad day to every 100 good days.

(gentle music continues) - You can just see him deteriorating all the time.

Just every day is different.

You just gotta be happy for the things that you have today and not look so much toward the future.

- I'm also recording recordable books for my grandkids who I'm most likely never meet.

That tears me up inside (indistinct) that I won't get to meet 'em, that I love.

- Since his diagnosis in the summer of 2021, Tim continues to help the medical community understand this disease, as well as reaching out to others with a similar diagnosis.

His progression of PPAOS has moved much faster than expected, and Tim is no longer able to speak.

Those who know Tim well still think of him as a talented communicator as he connects us together through his journey of losing his speech, but not his character.

- He still does the things that he wants to do, but not probably the capacity that he'd like to do them in.

But being the light of the room was probably his thing.

Yeah, he's, he's still the same guy.

- I think his main superpower was more connecting people and he did so with his speech.

But I think he's doing that now by all sorts of other means.

I don't think Tim needs a new superpower for me.

I think he has plenty of superpowers.

- Tim's superpower is definitely his ability to communicate to people and talk through things and make situations better.

- I think that he can inspire people and make them believe in themselves as what, because he believes in himself.

- His ability to think and his ability to be a real, a glue in a process.

But I think most importantly is the ability to be Tim.

- He's gonna talk about his speech, but his superpower is connections.

- When Tim talks to people, they know, he's honestly listening and caring and he's truly interested in the conversation and what you've got to say.

- I think he's enthusiastic.

I think he is motivated.

I think that he is driven and wants to succeed and continually better himself and the world around him.

- He respects people for who they are, for their place that they're at.

He's a great friend to everyone.

- Once you meet Tim, you never forget Tim.

(gentle music continues to end)