Josh Blue Uses Humor to Ease the Stigma Around Cerebral Palsy

Episode Transcript

Dr. Correa:
Saludos and hello. I'm Daniel Correa.

Dr. Nath:
And I'm Audrey Nath.

Dr. Correa:
We're two neurologists and fellow brain geeks hosting the Brain & Life Podcast. This show, the Brain and Life Magazine and website are all brought to you by the American Academy of Neurology.

Dr. Nath:
We're so glad you're joining us. We'll be here each week for conversations and interviews with community members, celebrities, and experts on brain health and living with neurologic conditions. Now let's get to today's show.

Dr. Nath:
Today on the Brain & Life Podcast, Daniel, I am still pinching myself because I got to talk with the comedian, Josh Blue. He is a comedian with cerebral palsy, and I guess he's pretty popular amongst pediatric neurologists because I've been following his work for years and I am fangirling hardcore.

Dr. Nath:
In this episode, we talk about comedy and cerebral palsy and Josh's love for learning languages and all of the people who have helped him along the way. Shout out to Josh Blue scribe from grade school. Daniel, did you know that he played soccer on the Paralympic team?

Dr. Correa:
I didn't. It's amazing. I love playing soccer. I actually was a referee for soccer in high school and in early college. So a big fan of the football.

Dr. Nath:
Fair. He talks about being in college and kicking around a soccer ball as he walked to each of his classes. So I think you guys would be friends. Let's listen now to comedian, Josh Blue.

Dr. Nath:
Welcome to the Brain & Life Podcast. Today, we are speaking with Josh Blue, who is a world famous comedian. Who's known for turning ideas about disability upside down. He has cerebral palsy and isn't afraid to make jokes about his own disability or even use his weaker hand as a prop during comedy set, and it's hilarious.

Dr. Nath:
He was the winner of NBC's Last Comic Standing competition, and he's currently on tour. Go see him. And in addition to all of that, he's also an ambassador for the Cerebral Palsy Foundation, was on the Paralympic soccer team.

Dr. Nath:
He speaks three languages and is a father of two. So I am fangirling so hard right now. You are really popular amongst the pediatric neurologist demographic. Josh Blue, in his own words, putting the cerebral in cerebral palsy, welcome to the Brain & Life Podcast.

Josh Blue:
Oh, thank you so much for having me. I'm so glad I could be a part of this podcast and neurological pediatrics. I've definitely had my fair share of help from you all, so.

Dr. Nath:
Hopefully good memories or neutral memories.

Josh Blue:
Can you bend this way? Nope. Can you bend this way?

Dr. Nath:
And I'm going to tap you over here. Does it hurt?

Josh Blue:
Not yet. Try a little harder doc.

Dr. Nath:
Yeah. That's us.

Josh Blue:
Yeah. Perfect. Well, thank you for your service.

Dr. Nath:
I have so many questions for you. I mean one is about with your comedy. Sometimes you write a set, and you put your whole being into it, and it's a joke that just doesn't land. And so I'm curious early on in your career, would you feel defeated if an audience didn't resonate with a joke that you made about your disability?

Josh Blue:
Yeah. Well the thing about my comedy too, is that I don't ever write anything down. I've never written any of this down.

Dr. Nath:
Are you serious?

Josh Blue:
I just come up with an idea and then I go up and just try it. And then if it gets a laugh or even if it doesn't get a laugh, then I try it again the next show and see how to tweak it. So I'm basically writing on stage all the time.

Josh Blue:
So then with that style, I kind of understand that it's not going to work every time, and I'll keep trying it till I can either get it to work or I put it on the back burner. And then what's been happening now is I'm remembering jokes that didn't work from eight years ago that are now surfacing, and I'm able to make them work now.

Josh Blue:
So I never try to get too down on any joke not working. There's obviously some jokes that I really like. And I'll tell them even if you guys don't laugh, because they're for me, that was for me.

Dr. Nath:
Oh, that's amazing. Yeah, for sure. And that's who you are. I'm curious though, with a longer set, do you have little notes of the main ideas or you really don't write anything?

Josh Blue:
I've never written any of it.

Dr. Nath:
Holy cow. I'm really impressed. You've spoken before about how spelling is not really your biggest thing. And I was reading about this. So you have cerebral palsy, and you have a weak arm, and you are cognitively intact. Intact is the doctor word. But I mean you're doing amazing. You speak three languages, you write comedy, but it sounds like you were placed in a special education class before the fourth grade. Before, I guess it was clear that you were not cognitively impaired.

Dr. Nath:
I was just wondering about that. Was that experience part of why spelling wasn't really emphasizing your early education? What happened in special ed and how did you feel about it?

Josh Blue:
I mean, when I was in elementary school, that's just what they did with the disabled kids. They didn't know there were different levels, and it took him four years to realize like, "Okay, this guy legitimately can hang in the mainstream courses."

Josh Blue:
I just needed some extra aids and stuff. So I had a scribe, a woman that would go class to class with me and sit in the desk next to me and take all my notes and do everything.

Dr. Nath:
Oh, through high school?

Josh Blue:
Yeah. All the way through high school.

Dr. Nath:
Oh nice. Awesome. The same person?

Josh Blue:
Yep. Rosa Marie Daniels. That definitely contributed to me not spelling because I never needed to spell anything. She just wrote down what they said. Then she wrote down what I said. I never had to do the physical act of spelling it out. So I just never got the practice.

Dr. Nath:
Oh. But that's fascinating. Okay. And so now you can dictate things, I suppose, if you really have to.

Josh Blue:
Right. I mean, I've been using voice recognition software since college. Although I did have a scribe in college as well, they're provided. They'd pay a student to write down my notes, basically just photocopy their notes they took and then the school provided someone to help me do my homework and stuff and write for me and all that. So I never had to do it through my whole schooling. So that's a big reason.

Dr. Nath:
Probably beefed up your memory too. My goodness.

Josh Blue:
Right. And that's why I'm able to do my stand up the way I do it, is just because I always... I mean, back in the day, I never even had a calendar. I just remember Wednesday I have to go to there at this time.

Dr. Nath:
I think that's incredible. I think most people have trouble with that, but you've had to just work on that and accommodate.

Josh Blue:
Yeah. But again, it's a product of the environment. So I just wasn't able to physically write. And so I just learned to do it my way.

Dr. Nath:
Did you ever have trouble getting accommodations? Was it ever a fight with the school with you or your parents?

Josh Blue:
I was one of the first disabled kids to go through the Minnesota Public School being disabled. I want to say this, I remember my mom coming down to school quite often and making teachers cry like, "All right, you just don't understand. He's smarter than most of these kids in the class. He just can't do it the way you want him to do it. Look outside the box that you've been doing..." And again, the teacher had been there 20 years. They're just doing what they know how to do. And it was hard for them sometimes to see, yeah he gets to the right answer, it just takes a different path. But again, the school provided Ms. Daniels for me.

Dr. Nath:
I'm curious, you now have two children of your own. What would they say about your disability if they're asked or has that come up?

Josh Blue:
They're very funny about it. And I feel like as a comedian and the amount that I talk about it in my show that they hear me talk about palsy all the time, and I'm very comfortable with it. And ultimately I'm just dad, you know what I mean? I'm sure dad does it differently or whatever, but they don't know that's different. They don't have another dad. You know what I mean? So they just understand what it is.

Dr. Nath:
Back in the eighties, there weren't a lot of people with disabilities in cerebral palsy in the media. Did you have any role models or adults with CP around you when you were a kid in the eighties or not so much?

Josh Blue:
Remember the Facts of Life, there was a lady on there, her name's Geri Jewell is the actress, but she really had cerebral palsy. And I remember watching it and be like, "Hey."

Dr. Nath:
Oh cool.

Josh Blue:
But besides that, I mean, like you said, there wasn't any of that, but you wouldn't even see a blind person on TV. It's just kind of a taboo thing to even, "Oh, we can't display this in the media." And now I feel like we've just been chipping away at it, and now it's not taboo to have a disabled person on your sitcom or any of that. So it's pretty cool. We've come a long way.

Dr. Nath:
Absolutely. Have younger patients with cerebral palsy approached you or talked to you after shows and that kind of thing?

Josh Blue:
Yeah. I mean, every show I have at least one or two palsy folks in the crowd and...

Dr. Nath:
Oh, that's awesome.

Josh Blue:
Well, what's more interesting to me is it's not just palsy, it's all disabilities and all people that are different in some way or whatever, just coming out like, "Hey, I can really relate to what you're saying, and I can really just empathize or laugh with you more than anyone else just because I've had the same experiences," or whatever. Yeah.

Dr. Nath:
Yeah.

Josh Blue:
Yeah. It's pretty cool. It's also weird, you know, but...

Dr. Nath:
I wanted to know about your time playing soccer on the Paralympic team. What was that like?

Josh Blue:
Yeah, I mean, it was a pretty amazing experience. I didn't play any sports all through school, and I did try out for soccer when I was in junior high. And then they cut me from the team, and it broke my heart so bad. And-

Dr. Nath:
Oh no. You made the team and then they were just kidding?

Josh Blue:
Well, it was tryouts. So then they just decided I didn't make the team and in my humble opinion, just no one should be cut from a team at that age. Just let us come to practice, let us be part of the system, let us see how it works and all that.

Josh Blue:
And that didn't stop me from loving the game and kicking the ball. And I just kept playing. I was always the guy on college campus that had my soccer ball with me, just dribbling around the campus and just like-

Dr. Nath:
It's a pretty unwieldy thing to carry.

Josh Blue:
Yeah, just put it at your feet and you don't have to carry it. You just have to get used to it being at your feet at all times and getting comfortable with it and rolling it around. And I mean, every break we'd circle up in the main square, and people would come and kick the ball with me and the circle would get bigger or smaller.

Josh Blue:
And people walk by, and we do all kinds of fun psychological experiments. Somebody walks by, and you just kick on the ball to see if they'll like kick it back, or if they'll get out of the way.

Josh Blue:
And then once I got out of college, I honestly didn't even know what the Paralympics were. I never heard of Paralympics before I graduated from college. I knew what Special Olympics was, and I knew that wasn't for me.

Dr. Nath:
No.

Josh Blue:
So I worked at a summer camp, and there was a woman there that had cerebral palsy, and she said she swam for the US Paralympic team. And she saw me because I had my soccer ball and she goes, "You know there's a team for you, right?" I was like, "Really?" And then she gave me the email of the head soccer coach of the national team.

Josh Blue:
And it was on a little gum wrapper, tiny little gum wrapper. I remember I carried that thing around me with me for months. I was terrified to email. I was afraid to just get the rejection that I got in junior high. So then I found the comedy scene in Denver, and mind you, this is all the year after I graduate from college. And I did a couple of shows in the Denver comedy scene, and it got me some confidence. And then I emailed the coach and I was like, "Hi, my name's Josh Blue. I'm 22 years old. And I'm a damn good soccer player."

Dr. Nath:
Yes.

Josh Blue:
And he wrote back, "Hey, Josh Blue, nice to meet you. It's always good to meet damn good soccer players."

Dr. Nath:
Yeah. Oh, this is way better than middle school.

Josh Blue:
Yeah, for sure.

Dr. Nath:
Actual life.

Josh Blue:
Within three weeks, I was on a plane flying out to DC to try out for the team. And I wasn't usually a starter, but I was pretty much always the first sub into a game.

Dr. Nath:
Oh, awesome.

Josh Blue:
I never looked back. And then I've been all over the world, eight countries playing soccer for the US and was in the '04 Paralympics and pretty cool to get to say I played in the Paralympics.

Dr. Nath:
I mean, it is cool. Yes. I've had patients with cerebral palsy tell me that because they have a physical disability that people may assume that they also have an intellectual disability just like when they're out and about. Does that still happen to you?

Josh Blue:
Oh yeah. Every day.

Dr. Nath:
Oh God, sorry. Do you just get super angry? I'm angry on your behalf. God.

Josh Blue:
I don't because I'm very fortunate in the fact that I have comedy as an outlet for that so I don't get upset. I just take it to the stage and show the world how dumb people's perception is. And it's funny, like most of the time when someone's being condescending to me, I just revel in the fact that I know that I'm a lot smarter than they are, and then I just have fun with it. I have this saying that you can either educate or perpetuate, and I choose perpetuate because it's more fun. It's fun.

Dr. Nath:
There we go.

Josh Blue:
Yeah. If you are going to treat me like I'm an idiot, then I'm all too happy to play an idiot.

Dr. Nath:
And then you got your stand up set ready and you don't write them down. So it's already written too, basically.

Josh Blue:
Done.

Dr. Nath:
It's done.

Josh Blue:
Yeah. Done.

Dr. Nath:
Oh, wow. Okay. This is something that patients tell us about. And I'm just heartbroken every time but that is really a kind of cool way to turn that on its head that, "No, you know what, I do know better. I have a firm internal confidence that I know who I am." You can say whatever you want.

Josh Blue:
And what sucks is that I know that everybody doesn't have this gift that I'm able to deflect it like that. So I do feel the pain and don't get me wrong, I've had my fair share of very frustrating interactions with folks. But I also feel like I'm doing my standup in the world, and the world seeing me tell you that you're doing it wrong.

Josh Blue:
And that way, when you leave my show, whether you know it or not, you have a different perspective of disability and maybe don't talk slow to that person or maybe don't... So I feel like through my comedy, I'm able to educate the world in a way that's not... Like if I say, "Don't do that." You wouldn't hear it. But if you hear my jokes, then like, "Oh, he really got to me."

Dr. Nath:
Yes, exactly. Oh, this is a real person. Wow. Which I guess some people just have to see an experience. Along those lines, tell me, is there anything new happening with your ambassadorship, with the Cerebral Palsy Foundation you'd like us to know about?

Josh Blue:
Just like I said, just doing what I'm doing and just spreading the word and educating as many people as possible. So it's just easier for our people to get a fair shake in the world. And like I said, not just palsy, it's all people with disabilities. They kind of clump us all together. So it's fun to break us apart, but then show everybody that we're all united in this way too.

Dr. Nath:
Right on. Well, thank you for your time, Josh.

Josh Blue:
My pleasure.

Dr. Nath:
I'm still amazed I got to talk to you today. I'm sure our listeners will feel the same way. Thank you so much for joining us.

Josh Blue:
Avec plaisir. Merci beaucoup.

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Dr. Nath:
If you don't live in the US, you can still enjoy Brain and Life online @brainandlife.org. To help us understand more about cerebral palsy, we caught up with Dr. Bhooma Aravamuthan, MD, DPhil. She's both a Ped's Movement Disorder clinician and a neuroscience researcher who's tried to come up with new diagnoses and treatments for cerebral palsy.

Dr. Nath:
In addition to being the total triple threat, an amazing clinician, prolific researcher and passionate educator, she was also my best buddy in residency, and I couldn't pass up the opportunity to talk to her. Welcome Dr. Aravamuthan to the podcast.

Dr. Aravamuthan:
Thanks so much, Dr. Nath. Great to have this reunion here today.

Dr. Nath:
We can't keep calling each other this. We can do first names, right?

Dr. Aravamuthan:
I know. Could can we switch?

Dr. Nath:
Yes, please.

Dr. Aravamuthan:
Great.

Dr. Nath:
So, Bhooma tell us, I know you study mechanisms and rat models, but in basic terms, what is cerebral palsy?

Dr. Aravamuthan:
So cerebral palsy is formally defined as a non progressive motor disability due to a disturbance in the developing brain. And what that means is any sort of abnormality or change in how a baby's brain develops that leads to permanent problems with moving is cerebral palsy.

Dr. Aravamuthan:
So that's pretty broad. And there are a lot of people that meet criteria for a cerebral palsy diagnosis, just like there are a lot of people that meet criteria for an autism diagnosis or an epilepsy diagnosis, and then tons of different things can cause CP.

Dr. Aravamuthan:
So we're learning more and more about what the things are that cause CP. And the more we learn about that, the more we can learn about CP itself.

Dr. Nath:
When we talk about causes of cerebral palsy, one that pops to mind is babies who may have been premature and may have had some sort of injury to the brain as a result of blood vessels in the brain maybe not being completely done yet and having little bleeds and things like that. Are there other causes, potentially genetic causes that have nothing to do with what happen when you were born?

Dr. Aravamuthan:
Yeah, absolutely. So there are lots of different causes, and the word in the formal definition is disturbance, and it's intentionally vague to include all of these possible causes.

Dr. Aravamuthan:
So like you mentioned Audrey, prematurity is probably one of the most common causes in high-income countries. It's different in lower-income countries in LMICS, but in high-income countries, prematurity is one of the most common causes.

Dr. Nath:
For reference LMIC refers to lower-and middle-income countries.

Dr. Aravamuthan:
Other causes can be an infection that you have after you're born. It can be trauma that you have after you're born. It can be genetic causes. It can be really anything that changes how a baby's brain develops. So lots of different causes can lead to CP.

Dr. Nath:
It's interesting that you say that since our guest, Josh Blue was born in Cameroon West Africa, and I don't know what sort of medical care was present at the time of his birth back in the eighties. So it is interesting that prevalence rates can differ depending on where you're born.

Dr. Aravamuthan:
Absolutely. Prevalence rates, what can cause your CP that shifts depending on where you're born, and what we do after the diagnosis is made is largely shaped by the society that we live in. So all of these things change depending on that flip of the coin where you end up being born.

Dr. Nath:
When you mentioned that these kids have some sort of motor disturbance, you're referring to issues with the limbs, but also perhaps in how they speak and the muscles of the face as well, right?

Dr. Aravamuthan:
Absolutely. A lot of the time even beyond motor. So even though you have to have a motor disturbance to have CP, many people with CP also have other issues that they deal with. And that includes things like epilepsy or seizures, cognitive issues, attentional issues, problems with eating, getting enough nutrition, problems with their musculoskeletal system, so how well their body moves, bone health, lots of these things. So it's not just the motor problems that everybody thinks about. It's all of these things.

Dr. Nath:
Josh Blue talked about how when he was a kid, that his parents would cart him off to physical therapy and occupational therapy. What are the goals of these treatments? And is it possible that the brain rewires a little bit?

Dr. Aravamuthan:
Yes. So I'm going to take the two parts of that question separately. So is it possible the brain rewires a little bit? Absolutely. And the adage that we think about in neurology is time is brain. And we use that in a lot of different contexts.

Dr. Aravamuthan:
So when we think about stroke, if you think your loved one is suffering a stroke, getting them to a hospital as soon as possible, starting treatment as soon as possible, going through rehab as soon as possible.

Dr. Aravamuthan:
And that time is brain concept is really kind of well ingrained in who we are as a neurologist, and I think more and more the community is aware of it. I don't think the community is aware of how important that concept is for CP.

Dr. Aravamuthan:
So when you make a CP diagnosis, there's a growing push to make it as soon as possible and to get people in therapies as soon as possible because the young brain is very what we say plastic, so it's easier to mold a young brain than it is an older brain. So the earlier you get someone into therapies and start that rewiring and remolding process, the better the outcomes.

Dr. Aravamuthan:
And there's more and more data to support this. That early diagnosis and early therapies, early treatment for CP yield better outcomes. The second part of your question the goals, that is really tailored to the person being treated and for our youngest patients for children also, it's tailored to the families.

Dr. Aravamuthan:
So anytime I see someone in clinic or anytime any of my colleagues sees someone in clinic, we start out the visit asking what are your goals for this visit? What are the next big milestones you're hoping to achieve? What do you feel are impediments to you doing the things that you want to do in your life?

Dr. Aravamuthan:
And all of our treatments are then geared around those goals. So we're not just treating the things that I see. I might see a problem with you moving your hand. But if that's not affecting how you're living your life and what's really affecting how you're living your life is the problems you have with speaking, maybe we need to focus more on your speech than we do about the hand that maybe really obvious to me, but is not actually affecting your quality of life.

Dr. Nath:
And when you talk about treating things, so there's medicine, and there's surgical procedures too that some of these kids undergo. What are some of those?

Dr. Aravamuthan:
Yeah. So there are therapy options that we talked about. There are bracing options. So things like orthotics to keep your range of motion in different joints to the full extent that we can keep it. Because one of the biggest issue the people at CP have is high tone. And when you have high tone and your hands want to fist and your arms want to bend in, you want to be able to keep those arms and those fingers stretched to maintain your range of motions. So bracing can help with that.

Dr. Aravamuthan:
Medications, so we have a lot of different medication options to help decrease tone. And we use that depending on the type of tone that you have. And then when thinking about surgeries, there are different surgeries that you might consider for each of those different forms of high tone as well.

Dr. Aravamuthan:
And there are different qualities or different goals that people are looking to achieve that make them good candidates for those different kinds of surgeries so you know what to ask for, if you think these types of tones are affecting you.

Dr. Nath:
What do you think is on the horizon for the future in CP diagnosis and treatment?

Dr. Aravamuthan:
I think with the push for early diagnosis, I think early diagnosis and intervening before a lot of these symptoms set in is one part of the future. And that's part of what I'm working on. I'm very interested in the lab and detecting this type of high tone called dystonia as early as possible, and then intervening as early as possible to prevent it, to kind of hit it when it's the most treatable.

Dr. Aravamuthan:
And then I think the other aspect that we're going to be learning more about is the other end of the age spectrum. I think the other thing we're going to be working on is optimizing quality of life, optimizing functional goals in adults with CP and a big part of that I think is going to be pain and learning how to treat pain in adults with CP.

Dr. Nath:
What new diagnoses or treatments are you working on in your neuroscience lab?

Dr. Aravamuthan:
Right. So like I mentioned, I'm very interested in dystonia, and that is a type of tone that is present in a lot of people with CP that most people with CP don't know about. So it's a form of tone that varies throughout the day. It's triggered by an attempt to move and can cause kind of these sustained twisting positions that can be very, very painful.

Dr. Aravamuthan:
And if you think about the functional impact of that. Every time someone tries to move, their tone gets worse. It's heartbreaking to think about that functional impact. But in addition to that, thinking about how variable it is, you can see how it can be difficult to diagnose. It looks very different depending on the person who has it, depending on the cause of that person's CP, depending on the movement they're trying to do that causes the dystonia to show up, and on top of that, can be affected by stress. So if you're in a doctor's office, that's not typically the calmest situation to be in. So your dystonia can look very different in a doctor's office than it does at home.

Dr. Aravamuthan:
So some of the things I'm working on is optimizing dystonia diagnosis in CP. And I'm looking at quantitative motion tracking to do that, both in our animal models of CP in mice and also in people.

Dr. Aravamuthan:
And what we're really trying to do is connect the two to make sure that we're studying things that when we study mice, we're studying things that are important to people.

Dr. Aravamuthan:
And the idea is that the earlier and better we are at diagnosing dystonia, the better we can understand it, and the better we can do the experiments that we need to do in mice to figure out what's actually causing the dystonia after the brain injury that causes someone CP.

Dr. Nath:
Josh Blue talked about how he wasn't meeting his milestones on time with sitting and rolling and standing up. And that's what led to his diagnosis of cerebral palsy. Is that usually what happens?

Dr. Aravamuthan:
Yes, but I think we're shifting to being a little more proactive now, particularly for kids that we think are at high risk for CP. So that means babies that had to go to the NICU after they were born, babies that were born premature, babies that we think did have low oxygen around the time they were born.

Dr. Aravamuthan:
We are much more vigilant about looking for signs of CP in these babies very early and doing imaging like an MRI, coupled with doing standardized motor exams, which have been validated, and we have tons of data on it this point.

Dr. Aravamuthan:
You can make a diagnosis of CP in someone at high risk at less than a year old now, which is crazy to think about and is not something that I necessarily thought about as a trainee. It's something that's emerged with time.

Dr. Aravamuthan:
So I think as time passes, we're going to become less reactive to seeing someone who's maybe not meeting the milestones that we might expect and instead start proactively tracking babies that we think are at risk for CP. So we can get them that early diagnosis and early treatment.

Dr. Nath:
I think there's a number of people listening to this podcast right now that might be family members or somebody with cerebral palsy or maybe parents of a baby who is just diagnosed, what would you like to tell them?

Dr. Aravamuthan:
I think it's really important to be a part of a community. I think the CP community is very strong. And I think after you've been given a diagnosis like that, it can feel maybe initially very isolating. So I would encourage people who may have just received that diagnosis to ask their medical practitioners for help finding that community. And there are lots of resources out there to do that. Many cerebral palsy foundations. There are two that I work with Hope for HIE and the Cerebral Palsy Research Network, which are very involved in reaching out to people with shared experiences.

Dr. Aravamuthan:
And I think that can be really powerful as you start kind of your journey in the process of being a person with CP. I also think getting a CP diagnosis is the beginning of the whole process. And it's the beginning of the diagnostic process. Because just because you have a diagnosis of CP doesn't mean that you know exactly why, and finding out why can be helpful in a lot of ways.

Dr. Aravamuthan:
It can be helpful for treatment if there's a genetic cause, it can be helpful for thinking about family planning, screening for other associated conditions.

Dr. Aravamuthan:
So making sure that your medical practitioner has told you why you have CP in addition to just telling you that you have CP is important.

Dr. Nath:
There's physical therapy, occupational therapy, there's medications, there's potentially surgeries, there's keeping track of different types of movements and how they change during the day and reporting that to your physician. How would you recommend for families to advocate for their own care, and what strategies to use to not get overwhelmed by it all?

Dr. Aravamuthan:
That's a tough question, because honestly, I look at some of our families in clinic, and I don't know how they do it all. It feels like a full-time job sometimes. I think that one aspect of it is the community that I talked about earlier.

Dr. Aravamuthan:
I learn a lot from people with CP and their families, and I think they teach each other a lot about what's available. I also think finding a practitioner that can be your kind of care quarterback is important.

Dr. Aravamuthan:
And if you feel like you're not getting that, if your practitioner seems like an island, that's often not enough for taking care of all of the issues that someone with CP might face on a day-to-day basis. So if you feel like your needs aren't being met with your current practitioner, asking for a referral to someone who you feel like can be that quarterback.

Dr. Aravamuthan:
And it doesn't necessarily have to be some Ivory Tower specialty center. It could just be finding another pediatrician that really knows how to coordinate those moving pieces. And some level of that again is going back to community and seeing who they've had the best experiences with. I also think that for young people in school, thinking about having a social worker involved and a school advocate is really important.

Dr. Aravamuthan:
And in many states there are free services that can assign you an advocate, a school advocate to help go to therapy assessment appointments at your school for when individualized education plans are set and help with that sort of thing.

Dr. Aravamuthan:
So these resources are available. Finding them can be tough. So asking the person who's treating you, your medical practitioner and asking other people in that CP community, I think can be really helpful.

Dr. Aravamuthan:
And I would say the last thing is also kind of giving yourself some grace that it's a lot. And I think trying to figure out a way to have some respite for yourself as a caregiver or some respite for yourself as a person with CP, from having to deal with all of the moving parts for some short period of time is valuable.

Dr. Aravamuthan:
And I think for the case of caregivers, that's where social workers can come in and think about how to figure out respite care. For people with CP that respite can come in different ways and different activities that I think bring you joy and give you a chance to step away from a world that may not be as friendly to people with disabilities and give you a chance to just kind of be yourself in a safe place is I think important to do every once in a while.

Dr. Nath:
For families out there listening and patients with CP, what do we define as a quote, "good outcome" with cerebral palsy?

Dr. Aravamuthan:
That of course is going to defer depending on who you talk to. For me, a good outcome is when I'm able to work with a family or a person with CP to set an achievable goal and then do everything I can to help them achieve it with minimal side effects.

Dr. Aravamuthan:
So that's kind of a vague answer, but it's also the real answer, because I think that if you take two people that on neurologic exam are totally identical who have CP, what is a "good outcome," quote unquote is going to be dramatically different for those people.

Dr. Aravamuthan:
I think for me as a doctor, I would feel happiest if I am able to help that person define what they best need to succeed, and if whatever I'm doing helps them achieve that, that to me is I've done it. I feel like I've made it if I can make that happen.

Dr. Nath:
Thank you. Oh my God. Thank you so much. We had such a great discussion with both cerebral palsy expert, Dr. Bhooma Aravamuthan, as well as comedian Josh Blue. Josh told us about his experiences with being underestimated and how he navigated the school system to help him thrive as the incredibly intelligent person that he is.

Dr. Correa:
It was so refreshing to hear from Dr. Aravamuthan about not just the new diagnostic and treatment possibilities for CP on the horizon, but also the importance of finding an entire community to help navigate resources with children with CP.

Dr. Correa:
Also, she really spoke to me when she said, what matters most to her is that the people she takes care of get the opportunities to meet their goals.

Dr. Nath:
Absolutely. That is the goal at the end of the day. And to find links to the resources that we discussed in this episode, please see brainandlife.org to find links as well as additional information about many neurological conditions, including cerebral palsy.

Dr. Correa:
Together we look forward to learning along with you about many more ways to live better with neurologic conditions. Thank you for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episode. You can also sign up to receive the Brain and Life Magazine for free @brainandlife.org.

Dr. Nath:
Also, for each episode, you can find out how to connect with us and our guests along with great resources in the show notes. You can also reach out by email at blpodcast@brainandlife.org.

Dr. Correa:
Follow me and Audrey and the Brain and Life Magazine at your preferred social media channels.

Dr. Nath:
Special thanks to the Brain and Life team, including...

Dr. Correa:
Nicole Lussier, our Public Engagement Program Manager.

Dr. Nath:
The amazing Clayton Stansberry, our Digital Media Production Editor.

Dr. Correa:
And Andrea Weiss, our Executive Editor for Education and News Publications.

Dr. Nath:
We are your hosts.

Dr. Correa:
Daniel Correa joining you from New York City and online @neurodrcorrea.

Dr. Nath:
And Audrey Nath, beaming in from Texas and on Twitter @audreynathmdphd.

Dr. Correa:
Thank you to our community members that trust us with their health and everyone living with neurologic conditions. We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Nath:
Follow and subscribe wherever you get your podcasts.

Dr. Correa:
We really appreciate it if you can give us five stars and leave a review.

Dr. Nath:
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Dr. Correa:
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Josh Blue Uses Humor to Ease the Stigma Around Cerebral Palsy

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