ANNOUNCER: On this episode of Showcase with Barbara Kellar we're joined by Dr.

John Tew and Dr.

Robert Neel, two remarkable figures in Cincinnati's neuroscience community whose connection has taken on new meaning in light of Doctor Tew's recent ALS diagnosis.

Together, they share an honest and inspiring conversation about perseverance, purpose and the power of hope as they work to spread awareness and strength in the face of adversity.

Stay with us.

Showcase starts right now.

[music] KELLAR: Hi, I'm Barbara Kellar and welcome to Showcase.

Today our guests are Dr.

John Tew, eminent brain surgeon and beloved Cincinnatian.

And with him is doctor Rob Neel, a professor of clinical neurology and rehabilitation medicine at UC's College of Medicine and the director of the UC health ALS clinic.

Dr.

Neel works closely with patients and families navigating these challenging diagnoses.

We sometimes forget that doctors have doctors, and Dr.

Rob Neel is now Dr.

John Tew's doctor.

I'll let John start by telling you why they're here today.

John.

TEW: Thank you, Barbara.

We're of the opinion that we are somewhat embarking on a new opportunity or challenge for you in that you're not accustomed to having doctors and patients here at the same time, maybe even it's a little bit of a challenge to talk to two doctors at the same time.

So I'm going to let you off the hook.

You only have to talk to one because I'm not a doctor today.

KELLAR: Today you're just the patient.

TEW: I'm here as a patient, and like one of everybody out there subject to the vicissitudes and challenges of life.

Normally I would come to you a little bit better prepared than I am today.

What we're seeing here is vulnerability.

You said that I was a neurosurgeon, and neurosurgeons have somewhat of a personality, I hear, I've been told that, and it tends toward perfectionism.

Of course, if you're dealing with somebody's brain, you want to be sure that you've got everything together.

But I come to you today not having everything together, in a very vulnerable position.

Normally, I would be able to button my shirt, tie my bow tie, which I've worn bow ties for over 60 years, and principally because people say it looks really cool and I like to look cool.

KELLAR: Cool, you do and you are.

TEW: But I can't be cool today because I'm very weak.

My hands are weak.

My legs are weak.

Fortunately, I haven't lost everything.

I haven't lost my spirit.

I haven't lost my desire to be helped and to be helpful.

I'm still very vulnerable.

But in that state I'm here with you today and at your pleasure helping you and Dr.

Neel to tell other people about why it's important to be vulnerable and to be open to being helped and to be grateful for that help.

KELLAR: Well, thank you.

Thank you, John.

You are the impatient patient, normally.

But Dr.

Neel will tell us how you're doing and what you're doing.

Rob, tell us about what's happening to John.

NEEL: It's probably a good place to start to talk about what ALS is, because a lot of people are still learning about it.

Many people remember the Ice Bucket Challenge around 2014, and that was probably the first time that ALS, I would say, burst out of the closet, so to speak.

And it really brought a public eye to ALS.

ALS is amyotrophic lateral sclerosis.

It's a disease of our motor system, that's our brain and our spinal cord, and then the nerves that go out to the muscles in our body.

And that disease is where those cells that help you control motor activities, like your hands, your mouth, your legs, that is slowly going away.

And so it's a disease where you develop weakness and incoordination, where you normally had all sorts of strength and coordination.

For example, for Dr.

Tew, with his hands not being able to do small buttons or not being able to tie his bow tie.

KELLAR: Well, imagine going from being a brain surgeon.

NEEL: Which is, and it is unfortunately, it is a fatal disease.

It is not a disease that we have a cure for.

We've known about the disease for 150 years, and we still don't know how to stop it.

We can slow it down, but we can't stop it.

KELLAR: Most people my age know it as Lou Gehrig's disease.

NEEL: After the famous baseball player.

And many young people in this generation have no idea who Lou Gehrig is, but we -- They do still when we educate them and we talk about it.

KELLAR: But they should see, watch the video of Lou Gehrig's farewell at Yankee Stadium, where he started out by saying, "I'm the luckiest man in the world," and he sincerely believed that.

And I think that John Tew could say the same because he excelled at what he did.

And John has more than excelled at what he did and he's been helping people for so long.

And my friends, we never let anybody do anything to us seriously, without calling.

We get a second opinion from Dr.

John Tew.

And he is more than happy to take our call and guide us through the labyrinths of medical care, which can be very scary and mysterious.

And what you're talking about is as scary and mysterious as you could possibly get.

NEEL: It really is.

It is -- It is a slow stealing of function and things that you -- It can be faster for some people and slower for others.

You know, the average course of the disease is usually about 3-6 years, and some people are faster and some people are slower.

I have some people I get to be with for a year.

Other people I only get to, I get to care about for 20 years.

I have some patients I've been with for 20 years.

So everyone is a little bit different.

And that's one of the big things I tell everyone when I first make the diagnosis, because everyone the first question people usually ask is: when am I going to die?

Because most people have read enough to know about that.

And it's an interesting starting point for a lot of people.

But the function is usually where I tend to focus.

I told Dr.

Tew I'm a very direct person.

I tend to be more of a cheerleader, and I tend to be more of a golden retriever as far as a human being.

And my job is to keep people doing the things that they want to do as long as they can do it.

And I'll find a way.

KELLAR: Tell us some things about is -- I don't know if the word therapy is right, but what do you say to him?

What do you say to all the other John Tews in the world?

But for him, I hated -- John Tew is such a treasure.

He is somebody we count on, and his brain is still totally intact and does -- Tell us more about what's happening here.

He doesn't.

You don't mind, do you?

TEW: No, of course not.

KELLAR: You're here.

That's what we're here to talk about.

TEW: Of course.

Of course.

NEEL: A lot of things that we take for granted that we do every day, we take for granted our ability to fix ourself a meal, to brush our teeth, to trim our own fingernails, to put on beautiful jewelry, to put an outfit on.

KELLAR: Tie your bow tie.

NEEL: Tie your bow tie.

TEW: Yeah, but Susan depended on me to fix breakfast.

That was my primary responsibility in our home to fix breakfast, and I can't do that anymore.

KELLAR: Well, you could take the box of cereal and pour it into the bowls.

TEW: I cannot.

No.

KELLAR: You can't?

TEW: I cannot actually lift up my own glass of water without using both hands.

So it's a process.

But probably some people in the audience know that most of my life has been spent trying to be in great physical shape.

So, the biggest challenge for Dr.

Neel is to get me to slow down and not over exercise.

He says you only have so many liters of gas in your engine or in your tank and you can't use it all up.

Whereas I'd been taught by my trainer in the past just the opposite.

KELLAR: Yeah.

TEW: You can't make it stronger unless you stress it out.

KELLAR: You've been telling me that.

TEW: But now I need to go a different way.

But fortunately, one of the more important things he has taught me is a different type of exercise.

One that just holding the muscle.

It's called isometric exercise.

And his team has taught me so many other things, like stabilizing your breath.

One of the things I have to do for a certain period of time, like 25 times, do this.

Take a deep breath.

As hard as I can to build up my respiratory muscles, my diaphragm, to support my voice.

And not only does it support my voice, but it also strengthens my swallowing apparatus.

But what I don't quite understand is why I can do that exercise and it seems to build up my strength in the critical muscles of speech and swallowing.

Whereas I have to be very careful about the muscles in my arms and legs and the rest of my body.

That's a question for him.

Can I ask him that?

NEEL: So why do we advise?

We always talk about the bank account.

And you only if you've only got $100, where do you want to spend $100?

And so I always say, do you want to spend it in the parking lot, or do you want to spend it in the theater?

Do you want to spend it in the parking lot?

Do you want to spend it in the stadium?

Where do you want to spend it?

In our bodies, when we want to develop muscle, you do break muscle down to build it back up.

In this disease, you lose that build it back up ability.

So I always teach people when you feel the burn, then you need to back down a little bit.

Luckily, when you're doing the breathing test, you're not pushing very hard.

You're not using -- you're not adding extra weight.

You're using the force of gravity which most bodies can handle.

And we find that, you know, mild exercise really does help people, helps them live better, helps them live longer, and helps them live with a better quality of life.

But it becomes important for people to learn how to outsource things, which I think is an important skill set, particularly for someone who is type A, as most doctors are.

KELLAR: Well, if he's not Alpha... NEEL: But it's an important skill set.

And being able to say, "I need the help with this, where do I want to spend my energy?

I don't necessarily want to spend it on this.

I want to spend it on something else."

KELLAR: You mean like letting other people do things for you?

TEW: Of course.

Of course.

Having helpers or teachers, like strength coaches, they become more of a stretch coach because as your muscles get weaker, your joints kind of contract so that you get into this bent posture.

So stretching becomes very, very important to avoid getting into a posture that you don't like, bent over, limited arm motion and so forth.

So that becomes exceedingly important.

And as he said, doing these types of exercises that maintain muscle, but don't break it down and don't allow you to add any muscle on, but you're just trying to maintain what you have.

KELLAR: I think it's amazing, John, that you've always been the guy who gives the orders, and I mean that in the best possible way.

TEW: Well, I like to.

KELLAR: Well, you've spent a lot of years giving orders that everyone appreciates, but now you have to take orders.

TEW: Right.

Yeah, that's a challenge, isn't it, Barbara?

KELLAR: Yeah.

NEEL: In medicine, we talk about the relationship between doctor and patient, and it should be a relationship.

And for any of us who've been married, we know it's always a conversation.

At the end of the day, Dr.

Tew will get to do what Dr.

Tew wants, but I will give advice.

And understanding that, I think, is one of the key things in medicine is I am not -- I am not the final word.

I am just here to help someone maintain or do something.

And I've loved that about being a doctor.

It's been the best, the best walk I've ever had in my entire life.

KELLAR: How long ago were you diagnosed?

TEW: Do you talk about diagnosed by my doctors or diagnosed by yourself?

Actually, I thought that I had ALS in 2000.

KELLAR: Really?

TEW: I'm very suggestive.

I was at that time, I was caring for a patient or helping to care for a young patient with ALS.

And we were at Lourdes in France, and I was part of the team that provided care for him.

And it was a pretty stressful time.

And at that time, I noticed that I had a lot of fasciculations or muscle jerks, much like the patient did.

But actually, it's more complicated than that.

I won't go into this much detail, but I have an autoimmune disorder and a tendency, genetic propensity toward rheumatoid arthritis.

These are autoimmune diseases which many people in the audience will be familiar with, but perhaps not as familiar as they will be after this program.

So it's a disease where, strangely, your own body is seeking to protect you, attacks a part of your body, if you can imagine that.

And Dr.

Neel is a national, international authority on this type of process.

And you might want to tell people a little bit more about it.

But before we go to that, I want to point out one point, accentuate one point that he talked about is so important.

It took me a long time to learn it.

That it's much more important to respond to patient's request for advice, rather than to tell them what to do.

It is such a much better journey when you travel together and help to make a decision that everybody buys into, rather than being having it come down from on high.

Just a simple point, but I'm surprised it took me so long to learn that.

KELLAR: Yeah.

NEEL: I was teaching a class in the med school.

I teach in the medical school.

And I usually bring a patient once a year to come and talk to the medical students.

And I had gotten this gentleman a pair of braces for his legs.

So, because his foot would catch when he was walking and he would trip and fall.

And we're up in front of everyone.

And these medical students had never seen an ankle foot orthotic before.

And I said, "Let's look at this together."

And with the worst -- he had the worst grin on his face.

And he smiled at me, and he pulled his pant leg up and there were no braces on.

And I just -- And we smiled at each other and I knew and he's like, "I don't like those, Rob."

And I said, "Fair enough."

KELLAR: Okay.

NEEL: It's just advice.

KELLAR: Yeah.

NEEL: But it was one of those funny moments where the entire class laughed and he had a grin that made everyone else laugh.

KELLAR: Yeah.

Well, it should be a time when you sort of can do what you want.

I mean, you have the freedom certainly to do or not do.

TEW: Well, that's why God gives you a free will.

I believe that.

I believe that strongly that God gives you free will to exercise what we hope is good judgment.

Not everybody always exercises good judgment.

If we did, we'd all be a lot better off.

But it's a learning process actually.

And that's our role as physicians and that's one of the reasons we have him here today, is we all want to learn something that he has to teach, and I'm learning that also.

I'm in the process of learning about the disease that I have and helping him to teach other people out there in the audience.

KELLAR: Do you go with him on some of his lectures?

TEW: Well, I went with him on a walk ten days ago on a very hot day.

He had about 2000 people walking for ALS.

KELLAR: Oh, my gosh.

TEW: And they were very, very successful.

It was inspirational.

And they also do a lot of programmatic teaching with individuals.

And it's very impactful to see all the variations of the disorder in a room at one time.

And each person there has the opportunity to inspire others who are in the room.

KELLAR: Are these all people who live in Cincinnati?

Are there -- TEW: In our region, yes.

KELLAR: Are there a lot of people have ALS?

We don't hear about it.

TEW: Yes, about 6 or 7 per 100,000, I think, something like that.

NEEL: In the Tri-State, there's probably somewhere between 250 and 300 people.

And if you think of the Tri-State as 2.2 million people.

So it's a good number of people.

And then we have a regional clinic so we get people who come as far as Huntington, West Virginia, in rural Indiana, rural Ohio.

We even get people who come down from Lima who come down to see us.

So there are a lot of people.

KELLAR: Yeah.

Do they come to -- do you have a clinic?

NEEL: We do.

So, we started a clinic back in 2012.

The clinic is designed to be very patient centric, meaning the patient is in a room, and then all the people who are going to be taking care of that patient will go into that room.

Our team is made up of a doctor, a nurse, a physical therapist, an occupational therapist, a speech therapist, a respiratory therapist, a dietician, a counselor and a social worker.

KELLAR: Oh, my goodness.

NEEL: And so the patient actually is the priority.

It's very patient centered care.

And we just go around robin and then we meet at the end and talk about it.

And what's so amazing, we find that people who have multidisciplinary clinic care actually live better and live longer and we catch things and take care of almost all their needs much better.

KELLAR: Yeah.

How do you come to the diagnosis?

How do you?

I mean, knowing nothing about medicine.

You -- are the doctor who diagnosed?

NEEL: So I won't talk out of school, but I'll tell you a little bit about the science, because I think that's a good place to start.

So when we're born, we have a set of neurons in our brain, these nerve cells, and we have a bunch of cells in our spinal cord.

We have those cells throughout our entire life.

They're not like hair cells or skin cells.

They don't regenerate.

They're the ones you got.

And they're very important cells.

Around the age of 40, in normal people, those cells start dying off.

All of us, it doesn't matter who we are, they just start slowly dying off.

But for people with ALS, for whatever reason, that dying speeds up and it becomes logarithmic.

And so all of a sudden, you have this dying off faster than the body can accommodate.

And that's really what ALS is.

Most of us believe it's a neurodegenerative process, meaning that it's something in either the genetic code or something in the cell machinery inside of the cell that is malfunctioning.

And, you know, just in the short time that I've been practicing medicine we went from one gene that causes ALS.

We're now at 31 genes.

And so we know that these genes have an association and how they all affect ALS.

We are still working on the science, but we do know we'll get there because just in 25 years we've come this far.

And if we can figure out how to turn off.

KELLAR: That was going to be my next question.

NEEL: Yeah.

If we could turn it off, we might actually also be able to figure out aging.

A lot of us who are in this field believe that there is something about the aging process of those cells that if we could figure that out, we might be able to slow down the normal aging process as well.

I'm not sure if humanity is 100% ready for that yet, but the science is moving.

It is amazing.

KELLAR: And so there's no way to -- There's nothing that causes this.

NEEL: This is nothing that a person did or does.

The only real epidemiologic factors that we've seen so far are veterans are two times as likely as other people to get.

KELLAR: That has to be something.

NEEL: We we don't know if it's burn pits or what it is or it's overexertion.

We don't know.

We still have work to do there.

And then soccer players is the other.

And we, and it usually has to do with head trauma and head balls, we think, but we don't know.

It's again we've looked at things like chemicals, algae blooms.

We've looked at do you live under electrical wires near Fernald or near a nuclear plant?

We can't find one thing that is the real risk factor, which is still scary.

KELLAR: How do I thank you for coming today?

This has been -- TEW: It's a two way street, you know?

We thank you for giving us this opportunity to reach your audience, which is, of course, national and international, to do what so many other people have done in the past, try to educate our constituency about a problem that we now have direct experience with.

And that's what we're so grateful to you.

I recognize this is somewhat of a departure from the past, where you entertained artistic talent from all over the world, but we don't have much artistic talent, but maybe we have something else to offer.

KELLAR: Yeah, but you, you, not only in medicine, but your contributions to the city and the arts are phenomenal, and for which we thank you and Susan constantly.

And there's no way to overstate the importance of what you're doing, not just for yourself, but I know that you pass on, when you learn something, you pass it on, and you're the greatest giver.

And I'm sure you are, too.

I don't know you as well as John.

TEW: Yes, he is.

KELLAR: But you are givers.

And if someone wanted to talk to you or, I mean, they could contact me or -- And we could make that happen if there's someone who would really think they could benefit from talking to you about any of this.

TEW: You know, I don't want you to think that I'm alone in this process of being a teacher.

There are so many people working around the world now to do what we're doing here today in many different ways.

Like, people, the famous football player.

NEEL: Steve Gleason.

TEW: Steve Gleason, so impressive.

He was taken very early in his career as a player for the Saints, and he took that not as a tremendous loss, but an opportunity to help other people.

And his foundation has already helped so many people all over the world.

And in me particular, they called and said, we think you might need a wheelchair.

And I said, well, I don't think so.

And they said, yes, you will.

We're going to send you one.

And they're doing lots of things like that.

And that's just an example of what's happening all over the world.

And I know that Steve Gleason played a major role in helping get ALS recognized as potentially caused by head injury.

KELLAR: Yeah.

Well, thank you guys so much.

We could talk forever.

Yeah.

So thank you very much.

ANNOUNCER: Join us next week for another episode of Showcase with Barbara Kellar right here on CET.

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