The Many Faces of Cerebral Palsy with Micah Fowler, Phoebe Rae Taylor, and Kelsey Cardona

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katie Peters. And this is the Brain and Life Podcast. So Daniel is back in NYC and I can just imagine that he gets to enjoy all the amazing theater and the arts in New York City. So Daniel, what have you enjoyed recently and did you catch the Tonys?

Dr. Correa:
I did get to catch the Tonys. Marin and I have been to a few of the shows that were nominated. So we were excited to watch the award show, to see which performers and shows were recognized. And after we saw the feature of the Buena Vista Social Club Musical as one of the ones that was nominated, we immediately went online and bought discount tickets for Friday in July. So I'm really looking forward to that show. But whichever type of performance you like, I think the arts are an essential part of our lives and just helping us see things from a different perspective. It's one thing I really like about both music and dance and visual arts. It's just one of the reasons I love being in New York and getting a variety of it.

Dr. Peters:
Yes. I always say that there are troubadours, they need to entertain us and to keep us laughing and happy and well. And I'm always impressed by people that act on stage or the screen. And if you have maybe a neurologic challenge or an illness that might be perceived as being hard to be in those spaces, it's great to see actors that really rise above, achieve and excel in the acting space. And the reason why I brought this up is we have three actors speaking with us today. The first we have is Micah Fowler. He's an actor best known for his role on ABC's Speechless. He started to pursue acting at the age of five. He had roles on Blue's Clues and Sesame Street. And on his 18th birthday, he found out he got the role for JJ DiMeo on Speechless. He has cerebral palsy, and when he's not acting, he's an ambassador for the Cerebral Palsy Foundation. And who also joined us, who is also an actress, was Micah's sister, Kelsey Fowler. She began her acting career at the age of 10. I'm just amazed at these people that start working at these young ages doing amazing things. But she's performed on Broadway, acting in television commercials and film, and she even performed in four Broadway productions. And then-

Dr. Correa:
That's much more challenging than a lemonade stand.

Dr. Peters:
I know, I know. I could not do that. Just to be able to do it and have that attention span. And next we have Phoebe Rae Taylor. She is the lead actor in her breakout performance on Disney's Out of My Mind. She Melody Brooks, a middle school student with cerebral palsy who also has a photographic memory. I wish I had that. She also, like Micah Fowler, has cerebral palsy. So we'll hear from her. And then later on, we'll hear from one of my favorites, Dr. Ann Tilton. She'll be our medical expert that will share all the ins and outs of cerebral palsy.
Hello, Brain and Life Podcast audience. Again, I am Dr. Katie Peters, your co-host. And I have got a duo today. I'm so excited. And it's an acting duo extraordinaire. So first off, we have Micah Fowler. He is a actor best known for his role in Speechless on ABC. He started acting, if you can believe this, at the age of five. He played roles on Blue's Clues and Sesame Street. And on his 18th birthday, he got booked for the role of JJ DiMeo on Speechless. Micah also has cerebral palsy. And when he's not acting, he has another hat. He's actually ambassador for the Cerebral Palsy Foundation, also known as CPF. And also joining us today, because it's a dynamic duo, it's his sister Kelsey who just got married. She is also an actress. She began her professional acting career at the age of 10. So amazingly these young actors. And she performed on Broadway and has acted in TV commercials and film. Kelsey also appeared on Broadway for six years performing in four Broadway productions. So thank you, Micah and Kelsey, for coming to the podcast.

Micah Fowler:
Thank you so much for

Kelsey Cardona:
Hey, so just as a heads-up, sometimes when Micah is meeting new people, he has a little bit more trouble than usual getting his words out, and he needs to be reminded to stop for a second, take a breath, and reset. So if you hear me giving him a reminder at all during this podcast, that's what it's about.

Dr. Peters:
Absolutely. So Micah, I know I gave you a little introduction. Can you tell us a little bit more about yourself and where you're joining us from today?

Micah Fowler:
I am from New Jersey.

Dr. Peters:
That's great. That's great. So you're in New Jersey. I'm in North Carolina. We're just covered in pollen. And Kelsey, where are you at today?

Kelsey Cardona:
I am joining from New York City.

Dr. Peters:
Oh, wow. So you guys are... I don't know if you know this, podcast audience, but we're Zooming on all the screens today. Absolutely. So Micah, tell us, when did you, I mentioned that you started acting at the age of five, how did you like being on Blue's Clues and Sesame Street?

Micah Fowler:
It was a fantastic experience and it was so much fun.

Dr. Peters:
One of the things I think about with, at least with Sesame Street, there are people that are the actors and then there are people that are the puppets and you had to interact with both of them. How is it different to interact with a puppet versus an actor?

Micah Fowler:
It was amazing to meet the actors behind the puppets.

Dr. Peters:
They have to be pretty skilled to do that. Absolutely. And Kelsey, you also started acting. When did you start acting?

Kelsey Cardona:
Yeah. And it's funny, Micah and I both got to be a part of different episodes of Sesame Street.

Dr. Peters:
Really? That's great.

Kelsey Cardona:
Yeah, at different times. And it's wild. I mean all of your childhood is in front of you and you're like this is insane. And you see a person, but you see a puppet and the voice is coming from the person, but you're looking at the puppet. It's like the coolest every kid's dream I think. But I started acting at the age of seven in community theater. And then by the time I turned 10, I was acting professionally. When I started, Micah was not really about it. He did a show or two with me in community theater. And we were Munchkins in The Wizard of Oz together and I wheeled him on stage. And he stole the show of course because he was very endearing, but he didn't really like live theater. He was like, "I get too nervous, I don't really like this." And so he didn't do much again until he started doing stuff with TV.

Dr. Peters:
That's great. It's nice that you guys can share that. Now, Micah, you were in the ABC show Speechless and you had a character whose name was JJ DiMeo. And I know that your character didn't really speak, but you're really a talker, so you are not the character that you played at least, right?

Kelsey Cardona:
Micah, how did JJ communicate?

Micah Fowler:
JJ used a laser pointer and an aide to communicate. So I had to compensate physically extremely expressive with my facial expressions and body movements to convey many different thoughts and emotions.

Dr. Peters:
And I think that that is so important. Micah, I'm a neurologist and I have patients that can't necessarily speak or have different ways of communicating. So I love that you had a platform to show that there's different ways to communicate. Plus you got that cool experience to act on TV. Now, I know that you've really enjoy acting. Do you have another project in the works right now?

Micah Fowler:
I've been auditioning for film and television. I'm looking forward to a film, an upcoming project in August.

Dr. Peters:
Oh, well, that's awesome. How about you, Kelsey? What's next for you?

Kelsey Cardona:
Well, I just got married here in the city and I haven't been auditioning too much lately. I've been doing some voiceovers and hope to get back into it soon actually. But COVID was kind of crazy and my life has taken a few turns, I think as many people's have. But I love telling stories and so it's always a part of my heart. And I love getting to help my brother do it. Watching him grow the last, I mean, gosh, I'm trying to even think how many years it's even been since Speechless, since he started Speechless now, but almost seven or eight maybe. And watching him grow over the course of the last few years, even since Speechless has been off the air, has been just such a joy. Because like you said, he didn't get to speak in Speechless and I don't think he's had many auditions since Speechless ended where he doesn't have to speak. Most of them do require him to say lines and to articulate emotion in a way that's a little bit more stretching I think for him than... I mean Speechless was no easy task for sure. But he's had to deal with a lot of dialogue in the last few years and it's been so cool to watch him do that.

Dr. Peters:
Now, I hope you guys get a project where you guys can do something together.

Kelsey Cardona:
Yes. We should write our own stuff, buddy. We talked about that a long time ago. We should do it.

Micah Fowler:
Yes, absolutely.

Dr. Peters:
So I'm just going to make a plug out to our audience. Hey, let's write something.

Kelsey Cardona:
Yes.

Dr. Peters:
Let's get a pilot going. I think that would be a great idea. I'd be happy to watch. I'm not an actress. I like to talk just like you, Micah, so maybe I could be help with promoting it. Now-

Kelsey Cardona:
I could write a neurologist in there somewhere, right?

Dr. Peters:
Yeah, I'm happy to. Now, I know that, Micah, you're an ambassador for the Cerebral Palsy Foundation. Can you tell me a bit more about that role?

Micah Fowler:
I absolutely love working with CPF on educating and increasing both awareness and understanding of cerebral palsy.

Kelsey Cardona:
Yeah. Cerebral Palsy Foundation is awesome. And when Micah was younger, there wasn't really any kind of resource like that for my mom and for my dad and as they were guiding Micah. And they've got websites that have, their website has a ton of resources and they have an app for families. And they even do a lot of stuff with siblings of kids who have CP because that's a whole dynamic too, and of siblings of anybody who has a disability, that's something to walk through and a very specific path. And so anyway, they do a lot with early intervention, they do a lot with diagnosis and treatments and AAC devices and it's great.

Dr. Peters:
I love that you bring up that sibling point. That is something that we've brought up with some other groups that we've talked to. We talked to somebody who was a mother and she talked about her, not just her child that was afflicted with the condition called Prader-Willi, but also the siblings and how they're affected. Because at the end of the day, you're brother and sister and it's really important to have those relationships and connections and have them grow. So I appreciate that you brought that up because it is so critically important. And Kelsey, since you are a sibling, how can we be better allies to people that have cerebral palsy?

Kelsey Cardona:
When I think about siblings of people who have disabilities, I think often about the people that Micah and I got to meet when Speechless was on air. And be it through different kinds of conventions or whatever, we would have people who would wait in line to meet Micah who loved the show and who just wanted to say hi or get a picture or whatever. And my mom and I were always just so in awe and moved that... Micah's story is so beautiful and so amazing because when you grow up with a child or a sibling who has a disability, you want the world for them. You want everybody else to see them the way that you see them through your eyes, with no limitations. And so when he was able to star on this ABC sitcom that aired weekly, we were just like, this is more than we ever could have dreamed or imagined would happen for him.
And so all of these people would come and they would wait and they'd want to talk to him. And my mom and I were always like, "We have to talk to these people. They're waiting in line for so long. I can't believe that." So we would go up and down and we would meet a lot of these siblings or a lot of these parents. And I always think of one story that so impacted us and I tear up every time I tell it. But this mom was talking about her kids and I think she had three kids and one had a pretty severe disability similar to JJ. He couldn't communicate with his words and he used some communication devices. And she was telling us how Speechless changed their life and changed their family's dynamic. And she was saying that her able-bodied kids used to be ashamed of their brother. And friends would come over to the house and they wouldn't want them to see the brother. And once Speechless aired and they started watching it together as a family, the able-bodied kids were like, "My brother's just JJ on Speechless. You've got to come meet my brother."
And we sit there and we listen to those stories and we're like tears streaming down our face, like how incredible is it. The power of representation I think is something significant. But when we're talking about siblings, I think the best way to encourage a sibling of a child with a disability is probably just to help guide their perspective about the disability. My parents would have, every now and then, I don't even remember a specific moment or conversation, but I do remember just kind of asking my parents questions about Micah growing up like will he ever be able to do this or will he ever be able to do that? And they were always honest but didn't put a cap. They would always say, "We don't know. We don't know what might be in store for your brother. Typically, this might be, could be what the doctor say is going to happen, but you just never know. If he works really hard..." And he has been, he's worked so hard and he's been so diligent. So I don't know. I have many more thoughts about it, but I think that's the most distinct one.

Dr. Peters:
Talking about getting to know people, Micah, I'm going to ask you and I'll ask Kelsey the same question, who would be sort of your dream person to I guess get to know in acting or to act with? What actor would you or actress do you want to get out there and act with?

Micah Fowler:
Oh, wow. My all time favorite movie of all time is Star Wars and I am a big, big fan of Mark Hamill.

Dr. Peters:
Oh, okay. Mark Hamill. It's out there. We're going to manifest that.

Kelsey Cardona:
Micah has a few pictures with Mark Hamill too. He got to go to a few of the Star Wars premieres.

Dr. Peters:
I agree with you. I'm a big fan. So Kelsey, you get to choose now. Who would you like to act with?

Kelsey Cardona:
It's so funny. I've always kind of dreamed about playing maybe his daughter, Hugh Jackman. I think it's kind of a random choice, but I think he's super talented and I'll tell you what I love about him. He started as a theater guy and he can sing and act and dance and pull out the stops in a Broadway show and he can also be a superhero and he can also play a dad who cares. And I just think he's super dynamic. And so I'd love to act in something with Hugh Jackman one day.

Dr. Peters:
Okay, we're going to put that out there too. I just want to thank you, Kelsey and Micah, for joining us today. This was a really fun conversation. And I hope to talk to you again and I hope that you continue to do all the wonderful things you're doing in the acting world and also what you're doing for the Cerebral Policy Foundation.

Micah Fowler:
Thank you so much for having me on. It was so much fun.

Dr. Peters:
It was fun.

Kelsey Cardona:
Same. We really appreciated it. It was great to be here.

Dr. Peters:
Thank you, Micah and Kelsey. And now we're going to hear from actress Phoebe Rae Taylor. She is the lead actor in a breakout performance in Disney's Out of My Mind. I actually checked out the trailer because I don't have Disney Plus, so I checked out the trailer and I'm going to get Disney Plus because I have to watch it. She plays Melody Brooks, a middle school student with cerebral palsy who also has a photographic memory. And she's here to talk to us today about her acting in the movie, Out of My Mind. So Phoebe Rae, welcome to the Brain and Life Podcast.

Phoebe Rae Taylor:
Hello. Thank you so much for having me.

Dr. Peters:
Of course, Phoebe Rae. This is wonderful. And tell us a little more about yourself and where you're joining us from today.

Phoebe Rae Taylor:
I'm 16. I come from England, as you can hear by my accent. I'm currently in my most important year in high school, which is quite scary. And yeah, that's it really.

Dr. Peters:
So tell me, when did you start acting? Because oh my gosh, you're only 16, you're the lead actor/actress in Out of My Mind. When did you start?

Phoebe Rae Taylor:
I actually never acted before I got the audition for this film.

Dr. Peters:
Wow.

Phoebe Rae Taylor:
Which is crazy because I've never even thought about acting. I've never been into an acting class. So it was all quite sudden and random. But as soon as this opportunity came to me, I absolutely fell in love with the whole acting idea and getting to become an actor. And yeah.

Dr. Peters:
Well, that is amazing. So how were you discovered?

Phoebe Rae Taylor:
When I was 10 I think, my mum signed me up for a modeling agency in London with adults and children with all different types of disabilities. And I was young, so I don't know this story off my heart or I'm not sure if it is, but I think they found me through there and asked me to send in a video of me just talking at the time. And it was a long process because of COVID knocked it back and all different types of issues. So it took a long time as I'm 16 now, so it's been like six years really.

Dr. Peters:
Well, I admire your tenacity to keep it going. And I guess this is your first movie, you're the lead actress. And now I guess the next step it's going to be to I guess win a, is it a BAFTA, would that be?

Phoebe Rae Taylor:
Oh, yeah. Well, hopefully. I'm hoping.

Dr. Peters:
You're hoping?

Phoebe Rae Taylor:
Yeah.

Dr. Peters:
I like that. I like that attitude. So where did you film Out of My Mind?

Phoebe Rae Taylor:
We filmed in Canada, Toronto. Because we were meant to film in New Jersey, but because I've never worked before, they couldn't get me a visa or whatever to go out to America. So we had to move the whole entire project to Toronto. And I'm so grateful we did that because Toronto was the most beautiful place I think I've ever been. I loved it.

Dr. Peters:
Oh, I'm so glad you got to go to Toronto. It's a great city and I'm so glad. So tell me what were your favorite parts of filming?

Phoebe Rae Taylor:
Oh, it's got to be the people. People expect me to say get my hair and makeup done every day or something like that. But I love the people so much because I've not been used to nice people, and that sounds quite sad. But when I met these people on the set, oh my God, they were so loving and caring and hilarious. We never stopped laughing on that set.

Dr. Peters:
And it sounds like Jennifer Aniston actually plays your voice. Did you get to meet her?

Phoebe Rae Taylor:
Not yet, but I'm hoping because Jennifer Aniston, ever since I was tiny, she's been like my idol. I've been like, I'm called Phoebe off of the show Friends. So Friends has always been a massive part of my family and my house and me growing up. And Rachel's always been my favorite character. So it was just insane to find out she was a part of this project.

Dr. Peters:
I know. I think it's great. And again, I saw the trailer, I haven't seen the full movie. I cannot wait to see it. Totally getting Disney Plus so I can check it out. What was your favorite part of the story?

Phoebe Rae Taylor:
I read the story when I was seven or eight in school. And I remember coming home with my little book and I was so excited to tell my mom. I was like, "Mom, there's a character like me." Because I'd never seen a character ever in a wheelchair or with cerebral palsy. So I just love how inspiring it is. And I think it's such a magical story everyone should hear.

Dr. Peters:
So can you tell our audience sort of the general premise of the movie?

Phoebe Rae Taylor:
Out of My Mind is about a sixth grader called Melody Brooks who is nonverbal and has to find her voice. And in that way she gets a talking device. And she's very smart, insanely smart. And the story is about how you can never judge people on how they look and get to really know the person because don't judge a book but it's cover, as they say.

Dr. Peters:
I totally agree. And I know that it was debuted at the Sundance Film Festival. Did you get to go?

Phoebe Rae Taylor:
Yeah, I did. That was my first ever film festival and my first ever encounter of these big celebrities, so I was in awe of everything and everyone. And we got to go to Utah and Utah is so beautiful.

Dr. Peters:
I agree with you. Utah is so cool. It's like another world when you go out there. It really is. I'm so glad that you got to visit. Now, you are of course an actress. What is your next project that's coming up?

Phoebe Rae Taylor:
Well, I'm not sure. I'm open to anything. But I've got to say if I were to choose anything, any project I could do, I'd love to do a rom-com because I'm all about, I love romance. I'm a proper cringy person. So I would love to get to fall in love on screen and do all that.

Dr. Peters:
Yeah, I love a good rom-com, especially those ones with Drew Barrymore. I think she's great.

Phoebe Rae Taylor:
I love her.

Dr. Peters:
Yeah, she's a lot of fun. I think we should get an opportunity to meet her, don't you think?

Phoebe Rae Taylor:
That would be insane.

Dr. Peters:
Yeah, I think you need to Drew Barrymore and Jennifer Aniston.

Phoebe Rae Taylor:
I saw a clip of Drew talking about Out of My Mind and I almost literally died. I was so excited.

Dr. Peters:
That had to be so cool. What'd she say?

Phoebe Rae Taylor:
It was interview of her and Rosemarie, which she plays Diane, Melody's mom. And she went on Drew Barrymore and they were just chatting. And I was watching it like, oh my God, Drew Barrymore knows about...

Dr. Peters:
Well, I think that that is so cool. And I just know that you're going to get to that rom-com. I'm like I can't wait to see that.

Phoebe Rae Taylor:
I'm hoping.

Dr. Peters:
Fingers crossed. Now, we know you have cerebral palsy. Okay. What is that? Can you tell us a little more about what cerebral palsy is?

Phoebe Rae Taylor:
Cerebral palsy is a condition caused by... This is literally the exact quoting Out of My Mind. Cerebral palsy is a neurological condition caused by damage to part of the spine that controls how you may move or you may talk. There's all different types of cerebral palsy. I've got quadriplegic, which affects all my four limbs. There's all different, no one's exactly the same cerebral palsy. And it affects how I may sound or I may do things a bit differently.

Dr. Peters:
There is a lot of differences in people that have cerebral palsy. I recently got to interview Shay Hammond. He has an Instagram page. He has cerebral palsy and he's a soccer player here in the States.

Phoebe Rae Taylor:
I've got my best friend, I've got a really close friend called Tia and she has cerebral palsy, but hers is completely opposite to mine. And it just amazes me how different we all are.

Dr. Peters:
Yeah. But it's just like how everybody else is different too. Right? There's going to be diversity. Now, what is your hope for people that have cerebral palsy? Because it is considered a disability, but you're thriving and acting and doing everything. What do you hope for the future?

Phoebe Rae Taylor:
No one with cerebral palsy should ever have to put up with something that they shouldn't. Because the numbers times I've gone to places and I can't get in because there's no ramp or someone else who's already in there in a wheelchair. But I just think the world should be more accepting and less judgmental. Because my whole life, I've been judged by how I may look and how I may talk, and that's really changed me as a person. So I don't want any other kid or person with any disability to have to go through that because it's not fun. It's not something I'd do again.

Dr. Peters:
So what would you say to somebody who's maybe about six years younger than you? What would you tell them? What would your message be?

Phoebe Rae Taylor:
That it might be hard sometimes and no one can really stop it from being hard, but to never lose yourself and to never change yourself for other people because you're perfect just how you are and you shouldn't want to fit people's standards. I think it's stupid. Don't take criticism from someone you wouldn't be friends with, if that makes sense. And yeah.

Dr. Peters:
It makes total sense and I completely agree. Well, I want to thank you so much, Phoebe Rae. This was so much fun. This is actress Phoebe Rae. You need to check out her movie, Out of My Mind. I can't wait to see it. And you should check it out on, it's on Disney Plus, right?

Phoebe Rae Taylor:
Yes.

Dr. Peters:
Thank you so much and thank you to our audience.

Phoebe Rae Taylor:
Thank you, guys.

Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.

Dr. Peters:
We just heard from Micah Fowler, Kelsey Cardona, and Phoebe Rae Taylor, all actors. And now we are joined by our medical expert, Dr. Ann Tilton. Hello, Brain and Life audience. We're very excited today because we've got one of our favorites coming back, one of our favorite experts, Dr. Ann Tilton. She's going to talk about the many faces and facets of cerebral palsy. With more than 30 years of experience as a pediatric neurologist, Dr. Ann Tilton is a professor of neurology and pediatrics at LSU Health in New Orleans. She is certified by the American Board of Pediatrics, the American Board of Psychiatry and Neurology, with a special qualifications in child neurology. She has combined broad clinical academic interests with a strong devotion to studying and implementing in practice the diagnosis and management of heritable and acquired developmental disabilities. And in particular what we're going to talk about today is cerebral palsy and how it can have varying presentations and varying outcomes and lots of people that can also thrive with cerebral palsy. So I want to say welcome to Dr. Tilton again to our podcast.

Dr. Tilton:
Thank you. I'm thrilled to be here.

Dr. Peters:
And I am thrilled also. It's always a brighter day when we get to talk with you. So I mentioned that you're from New Orleans. Are you there today?

Dr. Tilton:
I am, I am. It's warm.

Dr. Peters:
Great. Great. Is there anything else you want to share with us before we start talking about cerebral palsy?

Dr. Tilton:
No, except that I'm thrilled to be here too and I finished one of those clinics just a few hours ago. Anyway, I'm thrilled that cerebral palsy has come to awareness, more awareness, and awareness that it's not just a childhood disorder but one across the lifespan and one that's variable, like you said, and that someone can be very productive and do well and have a very rewarding life.

Dr. Peters:
Absolutely. So it is the most common childhood motor disability that we see. Can you just tell us the basics of cerebral palsy?

Dr. Tilton:
It's interesting. It's sort of changed over time in the sense of what's the real definition. And of course definitions are important because if you're comparing groups and research and even talking to someone about it, you've got to be saying the same thing when you use the terms. And it's really kind of an umbrella term. I always tell parents that migraines, you may have a headache twice a year or you may have a headache every day. And cerebral palsy may be one aspect of it someone has or they may have everything someone looks up and reads about. But what's important about it is that the fundamentals are that it's an issue with movement and posture predominantly, not that that's the only thing, due to injury or damage to the developing nervous system early in life. Part of the debate is how early. It could be prenatal, no question. It could be at the time of birth, no question. But how far after is the question? And typically it's under two years. Originally it was said three, whatever. But under two years of age is kind of where the working is right now.
The things that are important about it is that it's a permanent injury. Now that sounds kind of sets you back, but the bottom line on it is it's not progressive. It should not get worse. It should not change dramatically other than things that follow, for instance, you're tight and therefore your muscles are tight and you might develop orthopedic issues. But you should not fundamentally get worse than what it is currently. The other thing is, as I mentioned movement and posture, early onset, and the variability, but one of the definitions that came in now probably 10, 15 years ago is don't forget that other things can be affected, and that is associated vision, hearing, learning, epilepsy, all of these other things.
And so when we see someone, the first thing we say is, let me examine you, but be sure your hearing is good, your seeing is good, you have support systems for speech, all of these other things. So it can be for a number of reasons. It could be because you had some medical issue or the mother had some virus early on, or it could be now people are saying even if it's a genetic disorder, and a lot of them are, or some injury that happened or rarely but it happens, luckily rarely at the birthing process or something that happens after that under the age of two. So it's got a lot of faces. It can be a lot of different things.

Dr. Peters:
So I've always been curious about the term palsy. It's such an interesting term. And it's really a very, to describe something that has so many different causes to have really a pretty albeit generic term. What do you think about the word palsy and what it means and as a descriptor?

Dr. Tilton:
That's interesting. I think it's very old. We used to use the terms someone has a palsy. I mean, we think of palsies as a weakness. And I suspect these terms, I mean descriptions of this go in the 1800s and earlier because obviously people had problems back then. So I think it was probably connecting the brain and the weakness and saying that was the origin of it, which it is. And it again was very broad. And I'm sure things that they thought were weren't and things that they thought weren't were. I just think it's probably an old term. When I first started doing this work and even when I was a fellow or a resident, we were not allowed to say the word cerebral palsy.

Dr. Peters:
Really?

Dr. Tilton:
Mm-mm. We were only to say hemiparesis, like one side of the body, or quadra, all four, weakness, paresis, all that. So we would talk to a family and say you have this or you have that, but never use the words. And sure enough, when a few years later I'm in practice and parents would come in and say, "I know my child had spastic quadriparesis," which is a much deeper statement, "But you never told me they had cerebral palsy." And I'd be, "Let's back up here." And it was really interesting because that was much more of a descriptor that people understood or knew than obviously the technical stuff that we were taught that we had to say.
The problem is that if you say without going into the detail, you have cerebral palsy, then grandma and aunt and uncle and everybody else has this visual image. And I don't know if the patient on the other side of the door, my next patient who has cerebral palsy runs on their toes to first base or if it's someone who some people will think of who's in a wheelchair, dependent, lots of other support systems. So it's such a big term and that's why we did the final terms. But I spend time every time I see someone to say this is what it is and this is what you're going to hear.

Dr. Peters:
And I love that. It is many faces. Because I spoke with Micah Fowler and Phoebe Rae Taylor. They're both actors, they both have cerebral palsy, very different patterns. And then we also talked to, we have another episode with a soccer player named Shay Hammond who started CP Soccer, Cerebral Palsy Soccer. He's playing soccer. So really they can have this moniker, but it doesn't necessarily mean that everybody's going to look the same and that the disability can prevent you from doing what you want to do.

Dr. Tilton:
Absolutely. There's also a comedian, and I was trying to think of it a minute ago, the woman's name. And one of her famous lines, very paraphrased here, is I have a hundred problems and one of them is cerebral palsy. It's down on the list. That's hardly an issue. And she's a comedian with the diagnosis who just says, "Yeah, that's what I've got, but I also have to pay the light bill," or whatever the other inconveniences are. But it's not, to her, it is just the way I am and the way it is and she used it to her best ability.

Dr. Peters:
Absolutely. And you mentioned that you were just in clinic recently seeing these patients. So when they come to clinic, what are they coming to see you for? Is it for the diagnosis? Is it for the management? What are those patients coming to see you with?

Dr. Tilton:
Well, if it's a new patient, often they've gotten sort of mixed messages or the family suspects something's different and everyone is just sort of fingers crossed that it's just a variation in development. So I spend a lot of time on the new patients deciding obviously if I think that it's consistent with that diagnosis and talking to them about it. So some are diagnosed. Once they've been diagnosed, we often talk about all those associated things to be sure they have their best advantages, going to school, seeing, hearing, all of those. They may well need an orthopedist as well. They may well need other support systems that you connect people. Now we have a cerebral palsy clinic where an orthopedist's there, physical medicine is there, PT, OT. And we look at what equipment do you need, what do you have? So options. This was what was really fun when I was doing neurology and why part of the reasons I went into it was because now it's not just you wait for a while, then you have orthopedic surgery, and that's kind of what happens.
That's not what it is because we have other things, botulinum toxins. When I first heard from an orthopedist, "You need to get into botulinum toxin," I'm like, "Toxin? Back up." I knew what it was, but it was like really? But it really has made a tremendous difference in the course because people don't have to have a surgery every birthday. They can wait until they're older because you're maintaining length and distance in the muscles and that sort of thing. Baclofen pumps, which I do. Just different things that turn that dial down of particularly the motor and posture tone issue and then work on the other, support the school systems to do whatever we need to do. And sometimes they're coming back in for refills on medications and they can have associated seizures and things, but not everyone does.

Dr. Peters:
And what do you do as far as do you need other tests? Do you need imaging? Do you need genetic tests? What other tools are you using other than your neuro exam?

Dr. Tilton:
Well, the exam puts us on the path. The history puts us on a path. And to be honest, if the history doesn't fit, that really puts us on a path because it's like this doesn't fit. I need a history of something that can account for what I see. Born prematurely, this was an issue, that was an issue, whatever it may be to account for problems with the legs or whatever. So the thought now is that what you want to is the history, imaging should be somewhere between 89 and 90% abnormal in some way. So maybe, again, prematurity isn't the easiest one to talk about because about half the patients had that. And they may have evidence of the difficulties being born early with maybe a hemorrhage or maybe something else, sometimes neonatal strokes, sometimes other things, to account for what we see. And then if it doesn't and the patient still has spasticity, you go, okay, what are the mimics of cerebral palsy, particularly if it's progressive? That's a different issue, but that really sends off fireworks. So we now have genetic tests that test, I'm going to pull this out, forgotten if it's 60 or 160 different genes looking for things that can look like cerebral palsy, and we pick up things every now and then that aren't always expected.

Dr. Peters:
I think that's so important to have that wide net because you'd hate to miss something that potentially you could even intervene on. Because there's so much going on with gene therapy and new ways to rehab patients, new ways to diagnose things.

Dr. Tilton:
Absolutely. And I think of one patient I had, and of course this was like, well, I know he doesn't really have cerebral palsy. But he used to walk and then he started tripping and then he was falling and then he went all the way to a wheelchair, but his exam looked like cerebral palsy, but his history didn't fit. And I'm bringing this particular case up because MRIs are normal, that doesn't fit. There were a lot of things, test, test, test, and finally went, wait a minute, and the exam had some inconsistencies in it and we put him on a medicine and it reversed him. That's rare but it was dopa-responsive dystonia. And so it was a genetic disorder that responded to medication at low dose and they look totally different. And every one of those kids I've diagnosed look different too. But at any rate, he was billed as cerebral palsy. And we're like, no, it's something else. We don't know what it is, but it's something else.

Dr. Peters:
And I think that's really important for, and this is the reason why that parents should have their children seen by neurologists like you, so that if there are questions, that they can take the appropriate steps. And you mentioned sort of that multi-D clinic. I think that's a great idea. Now, what are sort of the exciting new areas I guess in research for cerebral palsy?

Dr. Tilton:
It can be as fundamental as really defining it. Again, what is the definition? What are those movements? I mean we've always seen them, but what I may call one thing, someone else may call another. Defining things more so that research can go on and look at things. Some of it is diagnosis, more and more genetic work, more and more sort of on that diagnostic side that we're now realizing the things we couldn't diagnose before with genetic testing. And particularly the whole exome, I don't know if you've had any talks about that, but where you can actually look in much more detail even than just those ones I ask about. Instead, you can look at it in a much bigger view and pick up diagnosis. That has tremendous implications for the reasons you said. Maybe there's a treatment. Maybe there's something else to be done.

Dr. Peters:
Yeah, I think the idea of next-generation sequencing with looking at genetic signatures and whole exome sequencing is so important. And I think that if you can find an illness where you could potentially do something early. Because is there an opportunity to even intervene? I mean, do we know what could potentially cause this in utero? Is there an opportunity to intervene before a child is born?

Dr. Tilton:
Yeah. Well, I think that's the brave frontier there.

Dr. Peters:
I agree

Dr. Tilton:
Because we always think about it, well, when they're born, but you know that whatever this process was had to have been going on in order for you to see it when they're born or at least on a minor scale and then... So it is true if we can screen. We're seeing that now more and more with newborn screening where we're picking up asymptomatic patients that we know have the genetic abnormality and can watch them much more closely or treat them. We do, on some of the muscle disorders, we treat them at four days of age with a gene factor.

Dr. Peters:
That's amazing. I think that is really the cutting edge and that gives us so much hope because it's not just the patient, it's also the family and the care partner team. And it's so enmeshed with the parents and then also the siblings. We were really lucky because when Micah came to talk to us, he's an actor, he actually brought his sister with him and she sort of helped with the interview as being sort of like a co-interviewee, which was a great interview to have that sister there. So what can we do to help support those care partners and also the siblings?

Dr. Tilton:
Well, I'm glad you said siblings. I'm going to start there. And that's because I think they're often forgotten. Particularly, I mean any disorder that, any of them where there's a child that has special needs for whatever reason, then those others who don't are kind of, everyone of course cares and does, but there's so much energy devoted to what's going on. And so that support system I think is incredibly important. It's also for the family, the parents, because tremendous demands, alters how they really live their lives. Does someone have to quit work? Does the financial stuff on things happen? You're going to go to therapy three times a week. Even just getting to therapy, getting here, getting there is asking a lot. And so the more we can integrate it in, the more we can say do this at home and just get monitored, first of all, it's better because you do it every day, but in addition, just recognizing that there's a lot of weight. It's very difficult often for the nuclear family to maintain because of the demands, and that makes it even more difficult.

Dr. Peters:
What do you think, as medical providers, we can do to help those families? Do you think that we're the education light switch or do we plug them into advocacy groups? What can we do the best?

Dr. Tilton:
Number one, listen, understand, explain, educate. And although I don't think any of us feel like we're doing as well as we could, to plug them into other things. For instance, the Child Neurology Foundation has a peer support group. So people can refer the parents to them and they talk to other parents. They can get the diagnosis things. This is just one that I'm very much aware of. But that peer support, they train people, then have them as peer support, is very important because people often feel like they're on an island. And that's why the disorder groups, if you have a rare disorder, just to talk to someone, because there may not be one in your city or there may not be someone you know or there may not be someone in the school. And when we think about the siblings probably could use it and the kids themselves, the teenagers, we connect and have them talk to each other. And I think it's incredibly important.
I'm working on a project right now and I'm really going to tap into the parents and ask them, what are 10 things you wish your doctor knew? What are 10 things I wish they had told me call this for cerebral palsy? What are 10 things I should have told the... All of those, those sort of things. Just in fact, anyone who's listening, I would love to get their input because to me, that's where the heart of this is is to find how we can best help. Technically, I get to walk out the door and they get to try to accomplish everything we hope we can do. I mean, I never leave without leaving with the kid in my heart, of course, but they come with me, but it's still different.

Dr. Peters:
Well, that is a challenge to our listeners, a challenge to our care partners and our parents. What are those 10 things that providers can do? What are those 10 things that we should tell you to expect and to... I think definitely, so that's our challenge. We always are asking for advice from our listeners. So I'm glad that you reached out to them.

Dr. Tilton:
I would love every piece of it, and please. And it will be, with your permission, placed into a pool of what are the things that were most consistent and we need to do this. And I would be forever grateful.

Dr. Peters:
Well, I am forever grateful for you joining us today. Thank you, Dr. Tilton. And thank you for our listeners, and we can't wait to hear from you.

Dr. Tilton:
Okay. Well, I want to hear from them.

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Dr. Correa:
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The Many Faces of Cerebral Palsy with Micah Fowler, Phoebe Rae Taylor, and Kelsey Cardona

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