Jen:
Hi, and welcome to Cerebral Palsy Health. I'm your host, Jen Lyman, and today we are talking with Dr. Nathan Rosenberg, a physiatrist from Nationwide Children's Hospital. He's a dear friend, one of my favorites, and we're talking about one of my favorite topics, participation. So I hope you enjoy the show.
Jen:
Welcome to the Cerebral Palsy Health Podcast. We dive deep into health topics that impact people with cerebral palsy, such as stem cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility issues that could be confusing or controversial, and those that offer hope but might not live up to the hype. I'm your host, Jen Lyman. Join me in conversations with leading experts as we separate fact from fiction tackle tough to understand topics and try to shed light on how best to maximize and optimize health participation and quality of life for those with cerebral palsy.
Jen:
Welcome Nathan to Cerebral Palsy Health. And this is a podcast that I've been doing since the beginning of covid and it's been a lot of fun getting to interview people that I really enjoy talking to and I'm especially excited to have you here. And full disclosure for everybody who is listening, Nathan is actually here at my house, but we're in different rooms because we had very big time technical issues. Nathan is a pediatric physical medicine and rehab physician at Nationwide Children's Hospital, and he's also an associate professor of pm and r at Ohio State University. If you don't know what pm and r is, I'm going to have Nathan explain it, but it is physical medicine and rehabilitation. And when not at work, you might find him in his garden or his kitchen or maybe playing instruments or seeing live music like he's been doing here in New Orleans. And he likes to have fun and he finds it redeeming when his patients are also having fun, which I can completely relate to. So thank you so much for being here. One of my dearest friends, and I'm grateful that you want to do this podcast with me. And today, by the way, we're talking about participation and therapy and fun stuff like that in case anybody's interested in knowing what we're going to be talking about. So Nathan,
Nathan:
Welcome. Important detail, right? Good to be here. Good to be 30 feet away from you. So it's kind of online and kind of live in some of each, right,
Jen:
Exactly. It's fun to see my pool in the background and not be in the same room, which is, I don't know that I've ever actually asked you this, but why did you go into this field? And tell me a little bit about what led you on this journey and ultimately treating the patients that you do.
Nathan:
Yeah, good question. I don't really know, but I'll answer it. I think sometimes you, I feel like I'm just a pinball in a pinball machine and that it's been really fun to be bouncing around this pinball machine this whole time. And sometimes you just want the pinball to go somewhere, so you go there, and I grew up in a medical household, so when someone says Dr. Rosenberg, I'm like, where's my dad? That part. And then my grandfather too, both pediatricians. And so I've enjoyed that relationship and I admire that in them in both of them. And I discovered pm and r by accident in medical school when there was free lunch. So I went to the pm and r. So physical medicine, rehab, it's kind of an antiquated name for what we do, and we're function doctors. I like that. This guy, I was eating my free sandwich in medical school and this guy was telling me that there's a field of medicine where you can help people do things. And so it's not a curative thing. It's like you go and you help people do what they want to do, whether that's daily functions like moving around or using their hands. But then bigger than that is they set a goal. I want to play bocce, for example. Shout out to Paralympic bocce right there. Absolutely. I'm a big fan. All our folks. Yeah. Alright. Alright.
Jen:
I am.
Nathan:
I just signed up or I'm signing up to be a classifier for paralympic bocce. I'm so excited. So excited. Yeah, because that's participation. Yeah. Yeah. Please have my time please. So where was it? Oh yeah, do the thing that you love. And I think that for me, it hits home that if I have the capability to empower somebody or if I have a toolbox that empowers people to do the things they love, that feels good. Yeah,
Jen:
That's awesome. So that really led you down this path to pm and r. And now I guess you're at Nationwide, you've got a pretty large patient load and I think once you did say that you thought you have a child with a disability, but you have how many now,
Nathan:
Right? Yeah, ton of kids. I grew up thinking that I would have a child, and it was kind of a vague feeling. And I think parents out there, we can realize that there's always something not so neurotypical about all of our kids. So it's like I do have that. And then also I have a couple thousand other ones that they're not mine if I'm a person in their life, but it's what a joy to be that person
Jen:
And you get to help them participate and help them function. And it's a little bit different than a lot of the other fields. And I've always felt like if I had gone to medical school, this would've definitely been the path I would've chosen. This is the most fun. I always feel like the pm and r docs are the most fun and you guys are definitely, you've got the right idea. Definitely.
Nathan:
You have a bias subset of pm and r docs that you've too.
Jen:
That could be true. That could be true. I know a lot of fun.
Nathan:
Yeah, I've seen them at concerts. Yeah,
Jen:
That's true. Well, I wanted to talk to you today. I think you and I have presented on some of this stuff together, but I wanted to lead into it with how has it changed when you're seeing parents or seeing patients and when you first started your career until now and with parents, the advice that you give them when they're first starting this journey and they first get the diagnosis of cerebral palsy and they're looking for therapies and treatments and interventions to now and what you're seeing. And we can then move on to how to choose and what does participation look like and that kind of good stuff.
Nathan:
So I mean, when I started on my career, it was sort of you do what you're taught, which is the things in the books, which is the big thing. Figure out what people's goals are, start with their goals, and it shouldn't be your goals. They should be their goals. And I think that when a family comes to you with goals, and especially with a young kid with cerebral palsy, their goals are very much day-to-day function related or often, not always, but often in some frame of, we'd like for them to be the best they can, which I find valuable. And then when they break it down, it tends to be a few common categories. The most common probably is walking or some semblance of walking is mentioned often, and then caring for themselves. And we want them to be independent. And that in itself is a life full right there.
That is enough right there to say, okay, you're devoting the lives of many people likely to this process full whole lives. They're souls, they're everything. And it's been an interesting evolution over time as I discovered where this joy comes from and where I think about my patients that achieve this great level of joy. And you see parents with peace in their eyes. And something I realized was that that didn't happen when they achieved those early stated goals. That's not when I feel like I was observing that it was often when they weren't achieving those stated goals, but their kids were happy. So their kids were out doing things, they were participating, they were playing Miracle League baseball, they were playing Pokemon the card game. Don't get me started. Shout out to my guy.
Jen:
To your son. Yeah,
Nathan:
But, but I was just at a tournament with him and there were, I'm not going to go and diagnose CP with my eyes. I'm not going to do that at a tournament. But my estimate is a couple handful of kids with CP playing a game that requires a bunch of manual dexterity and doing it really well. That's awesome. And massively included in their community, nice to sit and talk with their parents. And the same thing. This is where the joy is coming from.
And I don't want to go back and say that if I'm in a clinic visit that I'm the person writing the script of that visit and I don't want to be that. But I do think that providers, medical providers of all kinds of types, therapists too especially have a unique opportunity to bring up participation early on as another potential goal. And not to say you should have this, but to say the people that I know that have been through this journey and that are on this journey that have teenagers, for example, will tell me that they wish they would've thought of participation earlier about leisure, earlier about community inclusion activities earlier. So I'm thinking about the young kid in clinic and something you say to parents where it's like what we just talked about, mobility and hand use and things. Those are really important and communication. Those are really important. If it's okay with you, I want to leave you with another thought and I want you to know that I can be with you on this journey, this participation journey, finding the things you love, that this is a place to come when you're ready. And I've found that to be really redeeming.
Jen:
Yeah, that's fantastic. And I know that we've seen this in our own lives, and I know when Bower was, and I was very fortunate though, I had a really amazing neurodevelopmental pediatrician who was always encouraging participation and making sure that he was always participating in everything that we do, but early on, going to all these therapies and things like that and realizing that, wait a minute, are we actually participating in the community or are we participating in therapy and is this all we're doing and is this life and kind of coming to this realization at a point where we were saying to ourselves, what is this all about? It's more fun and more engaging and he's going to have a better quality of life when he's out there doing things that he loves. And what is the point of him being in these places doing the same thing over and over again that's not real and not meaningful to him.
Nathan:
Meaningful big word. Yeah, meaningful. Yeah. Yeah. I've had parents tell me when they're making fun of me in a playful fashion that they do their impression of me and they're like, he says meaningful all the time. They're like, excuse, meaningful, because it's so essential to say, okay, here's your goal. What would a meaningful outcome look like? And I am a broken record with that specific term meaningful and just you said it so well,
Jen:
I know, but still, and I was talking with you a little bit about this earlier today, but I still feel like 18 years later we still ask that same question. What are we doing here? What are we doing? And is this meaningful?
Nathan:
Yeah. I hope you never stop.
Jen:
I know I won't. But for anybody listening, I guess it doesn't end even for your neurotypical parent. And I've got a sister-in-Law who always reminds me of that as well. And she'll say, Jen, all three of my kids, I do the same thing. And it's just a different journey, but it's the same thing and we're all asking the same question. And so I always do appreciate her reminding me of that.
Nathan:
Yeah. So wait, can I take an opportunity and flip the script on you? So you're the podcast host. I know,
Jen;
I know. Yeah,
Nathan:
I know. And I think the audience will likely agree with this that there's two things. There's knowledge and there's wisdom and knowledge that comes in the books and the wisdom comes in every time you talk to a parent of a teenager, the wisdom comes in. There's things that you, over the years that you've shared with me that have been meaningful. And so I hope it's okay that I'm doing this. My question, if it's okay if I turn it around on you is you have an 18 year old, what do you have? What would you tell to Jen that was parenting a four to eight year old Bauer? What would you say the wisdom you would want to send to yourself?
Jen:
The four to eight year old? That's a good one. I don't that I don't go down the four to eight year old as much. And I would probably, I think back to the younger years down to the three and younger, but I would say the four to seven, I would've focused more on trying to promote that inclusion in the school more and trying to, but honestly, we really had fun and we did so much with him and we were traveling. We went to Belize and we went to Costa Rica, and we were doing a lot of really good things during that time with him. And I think sometimes I feel like what I struggle with now is things that I feel like I was missing then. Was I not doing enough to help him with some of the essentials that maybe he needs now? And because we were having so much fun with him promoting his participation. So maybe I'm giving the wrong advice. Maybe, no way.
Nathan:
Well, I mean, I think you are underscoring a common theme in parents in general and parents of children that have cerebral palsy. That common theme of looking back and having not even, it's not as much regrets, but sort of questioning your own decisions. And so it's like you can't even necessarily, you're not actively sending yourself wisdom right now. The self-questioning attitude is a common thing and something that I think that should be validated to say that this is real, this is what you're doing. And I don't even know that it's necessarily a problem as much as it's a common theme that we have as we raise our kids, that people have as they raise their kids of how would my choice here or there have impacted this or that.
Jen:
Yeah, definitely. I do feel like that was a time in his life where I do feel like he really did benefit from having this a very, here we are in New Orleans, and he was getting out there and really actively involved in the community, kind of got a lot of the taste of who he is now and some of the weirdness that he is because of that.
Nathan:
I'm thinking of the specific vignette of watching him house crawfish on Mardi Gras.
Jen:
And can, I was not focused on his fine motor skills at that time. So he can’t actually do the peeling, he can't, but he does. He Participates. He participates. He's not going to be peeling his own crawfish and I never would expect him to. That was never a, that was goal. But he will raise his hand when he is ready for one.
Nathan:
I was there, it was great. That's how I got to know him actually. I saw a hand up and I said, all right, get to work. I mean context here, way off the scale of CP at this point is, is it an actual expectation of a person who doesn't live in New Orleans to be able to peel their own crawfish? It's not easy. No,
Jen:
It's not easy at all. It's definitely not. And you need somebody to teach you how to do it, and you do have to have some pretty good manual dexterity to do it. And you've got to have the guts to suck the head of the crawfish too, which Bauer enjoys as well. He definitely has all of it down and we all take turns making him piles of them.
Nathan:
That's great. So unintentionally completely off script here we are underscoring all of these participation moments and showing where the joy goes. And we haven't talked at all about activities of daily living,
Jen:
No
Nathan:
Communication devices.
Jen:
Well, for him, the one thing that he loves is FaceTiming with his grandmother or anybody really that he will tell me who he wants to FaceTime with and then we help him. So for him, it's not really about a communication device. He wants to be able to FaceTime with other people. That for him is his participation. So his interface with technology or zooming or something like that and is really about being able to talk to other people. And even though his communication skills aren't the best, he's very clear. There's no question what he wants to do and trying to help him learn or develop the skill to actually be able to do it independently is kind of his goal. That's really what he'd like to be able to, or that's what he's identified as something he wants to be able to do. Cool. Yeah. Cool.
And that's a neat thing for him. It's a frustrating thing for all of us because we've really struggled to figure out how to help him do that, but that's okay. We're working on it. I feel like I've got everybody working on it or that I could possibly think of to try to help. So I think he'll get there. I think the technology will change and we'll be able to make it simpler for him to do so he can make it and if it's a problem for him, I know it's a problem for a lot of other people too.
Nathan:
Yeah, I've heard those voices say, we want this to happen and we need this thing, need something to connect us to make this work. What's the hidden key? It's
Jen:
Not that hard or maybe it is that hard, but it's going to take an extra technology step that we just need to get to, and once we get there, he'll be able to do it. So we just need to be patient and along the way, he just needs an extra hand to help him get there. Yeah. So that's his big goal these days, I guess if you turn the table. And I don't really have good advice for that age range. I wish I did accept that. I do think that including him and loved, he loves to go to festivals and he loves to travel and he loves FaceTiming with his grandparents. And
Nathan:
Then maybe I'm hearing what you're saying, if it's okay if I summarize that this theme here that it's like you're saying something I did was start early with participation and focus on that. And if you're going out of town and if you're going to festivals, one thing you're not necessarily doing is doing intensive therapy programs, for example. Those don't necessarily coexist the two of these things.
Jen:
And I think, I guess that's where it's hard to separate and do you feel bad about it and which I struggled with, and if I'm going out of town or if we're having fun and doing all of these things in the community and we're not going to therapy, is he missing something? Is he going to regress or is he not going to gain skills and things like that. And I think there was a point in his kind of development where he had been to so much therapy that he didn't ever want to go back. And I'm like, I actually needed a physiatrist, one of my dearest friends who was like, Jen, that would stop the madness. He doesn't want to go, he's doesn't need to be here. He's not getting anything out of it. So we didn't, and I just needed that permission to just say, forget it, this is stupid. And ultimately what we found was that he really enjoys working out and he's at the gym right now. He'll be home in just a few minutes, but he's been working out three, four days a week ever since. And that's been wonderful for him and that's participating in the community and he's with adults and he's with people that are fun and he's not with a therapist who's trying to focus on some very specific thing, whereas he's working on strengthening, which he needs to be doing anyway, which we all need to be doing.
Nathan:
So there's some point where you made a critical decision where he was burnt out, this is what I'm hearing, and that the theme of therapy, therapy, therapy was there, but that at some point you needed to have a conversation with somebody to say, to give you permission to open the door to say, if you don't feel like this is right, it's probably not right.
Jen:
Yeah, exactly. Yeah. Yeah. Sometimes it's just helpful to have that extra and then if we need to go back, we can, or if we, it's okay.
Nathan:
This is interesting. I really, I'm having so much fun with this right now because I feel like I'm interviewing, you have all these great things to say for your own podcast, I'm loving this opportunity. Like can I ask you a follow-up question on your own
Jen:
Podcast? Podcast? Okay. What's your follow-up question?
Nathan:
Well, I wonder what, again, looking for your advice for listeners and parents of a, how do you know when your kid is burnt out with therapy versus just kind of like, I don't want to go there right now. How do you know they're burnt out and they're really not moving anymore? And how do you know when you need to either ask for permission or have that conversation or trust your gut? How does that decision point happen?
Jen:
I think with him it was just obvious. I mean, he just would go and I mean he clearly didn't want to be there. He wouldn't even respond to the therapist and it looked like a bump on the log and wouldn't try. And usually when you talk about the things that are therapy and all the fancy terms that they talk about, the child needs to be motivated and it needs to be mass practiced and you've got to have the fancy things that you want to talk about to help somebody learn a new skill. There was none of those he didn't try at all. So that's how you can tell that he's burnt out. There was no effort at all.
Nathan:
Did you pick it up right away or was it just weeks of just trying to tell what was going on?
Jen:
Yeah, it was a few weeks of, no, I knew what was going on pretty quickly, but I was like, well, it's just I will beat myself up long enough to, I'm a responsible parent, I'm going to do this, and I'm told that I'm supposed to be taking him to therapy. I will continue until somebody gives me permission to quit or somebody tells me it's okay, I need to stop.
Nathan:
So there you answered. Part two is just when you beat, when you beat yourself up enough, when you beat yourself up enough, that's the point when you'll know that it's really time to talk to somebody about stopping. Yeah.
Jen:
Is that right? In my situation, that definitely was, yeah. But I think there's other parents out there that are more direct or more direct with themselves and we'll see it immediately and be like, this is crazy. What am I doing? Maybe, I don't know. I'm curious what you see, what's the trends? What are you,
Nathan:
Because I overuse that word meaningful. There was a 17 year old that had moved to Columbus, and so I took on her care and she'd been going to therapy consistently for 17 years and I could list her hobbies. It's so much fun. There's big list of hobbies and things she loves doing. A lot of it is circling around frozen and Disney things, but also just that social participation thing being present. And within one or two visits, I looked at mom and I said, what meaningful benefit? I said, how's therapy going? She said, good. And I said, what's meaningful that's coming out of therapy? What can you hang your hat on right now? And she sort just stopped, said, well, they move her arms and legs. And I said, okay, and is this landing with your daughter? And she said, no, and it hasn't for years. We're just doing what we're told to do. And I said, I, well, do you feel like you need to go to therapy right now? Do you have goals and do you feel like you need to go? And she said, are you telling me you've got to stop? And she started crying too, and she said, are you telling me that we don't have to go to therapy?
It was like I'm sitting here and that something I love about my own job is actually as sadistic as it sounds, witnessing catharsis because if you get somebody to that point that they're able to take that critical leap that can change someone's lives. And she said, wait, you're saying we don't have to go to therapy? And all the medical things, we manage the big list. If you look at my note, it's got a list of 10 things that medical stuff we do. And she's a very direct person, this mother, and she said, she gave me direct feedback and said, I don't even care about all the other stuff you do. I don't care at all. The one day when you said we don't have to go to therapy was by far the most meaningful thing that I happened. So I don't think you're alone.
Jen:
At all. No. Yeah.
Nathan:
Well
Jen:
That's Go ahead. Go ahead.
Nathan:
I don't want to get away from the duality of things when sometimes there's so much benefit from therapy. We've been saying this a lot that sometimes therapy is not right. And then there's other times when therapy is incredibly right, and if you're a parent here listening and you say, therapy is the right thing right now, and I see progress and I love it, that also exists. And I don't want to be too much on one side of it because there are both those things exist at the same time.
Jen:
Well, I think we've talked about it and you and I have talked about it, we haven't mentioned it in this podcast, but one of the concept that had come up a while back was this concept of time toxicity. And I think I love the concept because it resonated with me, especially when it comes to therapy and a lot of other things for sure. And this idea and even these doctor's appointments, I mean, I can't tell you how trying to manage all of the multitudes of appointments that we have and taking him out of school and dentist appointments and the geometry of it all, and then having, if you add therapy on top of that and driving him back and forth and everything is consuming and what is the benefit versus your time? His
Nathan:
Time. Time and time is a side effect.
Jen:
And can you minimize the time and maximize the benefit? And what can you get rid of to eliminate some of this toxicity? And not, once you've been therapizing the person for so long, it's like start shedding it. And even thinking about scheduling and some of these appointments and trying to work with the hospital or work with the clinics to try to improve that for families too to
Nathan:
Don't get me started. Maybe do get me started though. I
Jen:
Don't know. Maybe that's part two of this podcast, how to improve the system.
Nathan:
We could do the podcast. It's one star, how to improve the system. People say, I can't wait to listen to this. No, maybe they do. Maybe they care. So on the topic of time toxicity, we give credit where credit is due. This is the concept that was it was delivered to me was from Dave Frumberg.
Jen:
Dave, yeah
Nathan:
Yeah. The great Dave Frumberg, who is an orthopedic surgeon at Yale and does CP surgeries for people with cerebral palsy, adults and children really has shared, I think, but with both of us, a lot of perspective about cost and cost being a time being a massive cost. A surgeon's perspective is really big on that, given how much time you devote to a surgery. And then the rehab afterwards, A little side note and something I encourage to everybody in the world when cerebral palsy meetings happen, Dave and I find a little time window in there and go in nature together and before or after the conference or something, wherever we are, and we'll find something wherever we are, that's when we could be talking about anything. We have a friendship, but what we end up talking about is these great deep concepts that have changed my practice and hopefully changed this too. And I want to advocate for that. Friendships within our world go a really long way, and I think they actually land in patient rooms and land with families. You can explore concepts that are deeper than what our textbooks say. And so time toxicity we explored on the way to Zion National Park. I think that was the one, and Dave's doing some really cool research in that. But the big point of that, say for example, a therapy visit might cost a family four hours and imagine, we think about what can we do for
Jen:
What, 30 minutes of therapy, four
Nathan:
Hours? What would you do with four hours if somebody handed you four hours right now in life? And so again, I don't want to write a script for people as much as just point out that these things exist and allow people to make their own family centered decisions
Jen:
For sure. And yeah, I think it is exciting. Some of the newer therapies or ideas, concepts that are coming out there and teaching new parents with some of the babies, these telehealth models and being able to do it at home, teaching the families how to do it themselves so that you're not driving back and forth and having to go to these multiple visits. You can just meet with a therapist over Zoom and they can teach you and you can do it all by yourself.
Nathan:
Are there research studies and things like this? Are there any that you know of that come off the top of your head?
Jen:
Yeah, specifically we've got the Apple's tele study that we're currently doing. So I think you are familiar with the Apple's study that was done and Nationwide was one of the participating hospitals. It was ultimately proven to be safe and effective. This is for babies with hemiplegia or asymmetries. But yeah, this one is really cool because it's looking at, it's testing the telehealth version of this study. So the families would actually meet with a therapist once and then they have weekly visits and then they can do it all telehealth. And there was another study that they also did, and it's just recently completed, but we're hoping to be able to show the results and then teach other people to do it as well, called three for the under three, and that was all telehealth as well. But yeah, apple's is really cool. Tele is really cool. And three for the under three is a really neat model as well that I think, Nathan, you're going to be hearing a lot more about with your Africa project.
Nathan:
Oh, I would love to. That's cool. And Apples is still enrolling.
Jen:
Yes, absolutely. So yeah, for the listeners, I know you're leading me into this. If you are listening and you have a baby who is between four months and 13 months corrected, you can contact me if you're interested in them participating in Apple's tele because I am the central recruiter for it. But I think it's a really neat study and if your child qualifies, it is a telehealth model. So
Nathan:
Yeah, love it. I think it's great.
Jen:
My little commercial, I think we
Nathan:
Right, this is a paid advertisement, right? Note to the audience is that this is unscripted, which is really funny. It sounds scripted because it's like, Hey Jen, why don't you invite somebody on who's just going to promote all these things that you do?
Jen:
It is, but when parents, I want to hear what parents are asking for these days. I know that there are a lot of things going on out there for families that they're trying, and I know it's really hard. It was hard for us when Bauer was young to choose treatments and therapies and we were keen to try everything. And some things are, I feel like as I've evolved, I'm looking for safe and effective treatments that are, I'm going to get the most bang for my buck. I don't really want to waste my time with things that aren't researched and that are just going to be endless and aimless and have no real goal. So unless it's fun and it's about participation in the community and he's a community-based thing, I'm not going to do it. I'm just not. And so somebody's not going to, you can't come to me and tell me, Hey, Jen Bower should try this So-and-so therapy, unless you've got a very good base of evidence that's going to show me how exactly it could potentially help him. So I'm just kind of curious how you help families make decisions. And I will say this, I also know that I'm stubborn and 18 years ago, I will try anything and if I know I have to learn the hard way too. So if I was just going to try something, if it didn't work, I needed to know that. So I think a lot of families probably feel the same way, even if there's no research to back it up, even if they're hearing about it from Facebook and some family whose child has nothing to do with, has nothing to do with their child's disability. If it worked for that one, maybe it would work for mine.
Nathan:
As I think about that, two people come to mind that they're speaking in one ear and one person speaking in the other, but saying similar things. And the first person that's saying something is Laurie g Glader, who is complex care physician, and
Jen:
She will be on this podcast to talk about complex care, by the way.
Nathan:
Yes, yes. You should turn this one off right now and listen to that one once he's ready, if they're both available right now, switch to that one. Lori's brilliant, and Lori is my model for shared decision-making for being the person in the room that does not tell. There's no paternalism, maternalism any of that in the room. As much as it is, let's figure out what your goals are. Here's the thing we're talking about. I will hopefully provide you some information and then together we can hopefully come to a consensus about the potential value of it with the knowledge. And another broken record thing. I say doctors don't predict the future. We do it poorly. There's great evidence to say that we are worse than a flip of a coin with the majority of things that we try to predict that there are exceptions. But in general, you flip a coin and then you say what the opposite is because it's actually more likely to be right in a lot of situations.
So I hear Lori there saying, make a shared decision, and then there's my own head saying, be humble because you don't know the future. And then the other one, the other voice I'm hearing is that of Iona Novak and specifically red light, green light, yellow light, things that Iona has presented visually to us to say, oh, hey, if I have an answer about this in one of her studies, a red light, green light, yellow light, then I can present that directly and say, we have recommendations about this. Now, I will say the vast majority of these deeper conversations tend to be things that aren't talked about in Iona studies and aren't studied well and are gray area things. And there's some good studies out there about how parents develop trust in their providers in high intensity medical situations and a lot out there about providing a balanced perspective without providing false hope. Those two phrases are common in a lot of qualitative studies when you listen to parents in these studies. So the balanced perspective, let's say we're talking about an intensive therapy program that uses a certain theme that I don't need to call one out, but it's one that is not well studied. The balance thing here is that I would say, I don't know if it's going to lead to a meaningful benefit. I don't know. I've had parents come back from these programs and the feedback they shared with me is, we found it meaningful, we're going to do it again. And I've had parents come back to me from these programs and six months later say, I don't know if we found anything meaningful, but we wanted to give it a shot. And that's a common theme. So those are both sides of a balanced approach. And then the avoidance of false hope is if it's a red light Iona Novak topic, let's just say for example, the light's almost perfectly read for hyperbaric
Jen:
Oxygen hyperbaric, right?
Nathan:
That one, right. You can pretty much go there. Yeah.
Nathan:
If we're talking about the evidence, but also I'm a doctor and that I'm a human and I don't know. So even when it's that red, I say, I don't know, but every bit of evidence that I've read says that's a red light topic, and I still don't predict the future. So here I am telling you what I know. And I think actually if they say, can you write a prescription? That would be another conversation, but can you give me a recommendation? It would be the evidence shows me that this is a, I won't think I'll necessarily use the term red light topic, but suggest against the benefit of it and strongly so.
Jen:
Right. It seems like that one's come up a lot lately. Again, I feel like it wasn't for years, it had fallen off the radar and the past few years it's suddenly come back into favor with families, and it's interesting to see it happening again. I'm like, do they just revolve? Is that a thing that happens?
Nathan:
I don't know. I mean, the earth spins and things happen, and I think all those things are going to come up. And it's interesting. You have to have enough trust for them to say it because usually they're not usually, but I think the common thing is that they go and do it, and then they come back and ask you if it was a good idea.
Jen:
I think the other part is we need more evidence-based therapies, we need more things that work and more things for parents to actually choose from that we know work and we don't have them yet. And so that makes it hard.
Nathan:
We can pitch your study again as a way to
Jen:
Evidence-based, but it'd be nice to have more out there and more that don't cost families a fortune to do out of pocket and that are covered by insurance or whatever.
Nathan:
Sure. Yeah, I agree with you too. Sometimes the, there's a feeling it says, I'm looking at what's in the toolbox for this question that you've asked, and I have a lot of gray area and I don't have anything. There's no tool that I can just grab and be confident about. And you be real about that
Jen:
For sure. I wanted to ask you, I like to ask this of everybody actually. So Iona was one of my former guests, and we did talk about her red light and green light. I want to have her back on to do the stem cell update. Again, I love having her on. And it's interesting because that's one that is it hyper hope for a lot of families, and we don't have a good trial, but families are still going, but there's more evidence. So as we move forward, there is more evidence for the umbilical cords and things like that. So we're moving forward. So having her back on to talk about that would be another good future podcast. But I know that I asked her this and I remember what her answer was, but I'm curious, what do you think is going to make the biggest difference for people with cerebral palsy in the future? It's a big one.
Nathan:
I'm sorry. I'm going to really poorly answer your question. It's a personal view thing. So the two academic things I like to spend time in, and one of them is cerebral palsy and participation, and the other one is prediction of outcomes prediction in spinal cord injury and brain injury and being humble about it. So it's a different world than cerebral palsy. And I'm sitting here in New Orleans, I gave a talk about that today in this town. And so it's fresh on my mind, and I've been reading a lot of books. I've been reading a lot of different books about the science of prediction of the future and the who's good at it and who's not good at it, and why would they be good at it, and how accurate are people in general. And everything I'm reading, almost everything I'm reading says we don't have any clue. And there's always going to be this curve ball that whatever you're thinking, it's like, maybe it's ai, we'll change it or something like that. It's 2023, so we might say it's ai, but that change is a multi-variable thing. And if I threw something out right now, I am basically guaranteeing myself to be wrong. And so here's my answer for you though. As people have studied, this is the one thing that is in the future is hope.
And because things have changed, and especially in other conditions in the last decade, things have changed drastically. Things I never thought I'd see in spinal muscular atrophy
Jen:
Yeah, yeah, right.
Nathan:
Yeah. The day we found out that you could treat that, and so that happens, and there was nobody predicting that future, or maybe there was somebody that was studying it, but we out here weren't saying that's the next thing. So I think what I can have is hope for the fact that change will happen and positive change will happen, and the inability to describe what that will be.
Jen:
You have inspired hope in me for sure. I definitely started out the day not a very hopeful mom. And I do sometimes get very sad for Bauer and just because I worry about his future and I worry about his participation specifically, and I know that I can always help him participate. And I know that our family caress deeply about his participation. I don't necessarily have trust in other people to help him do the same. And yeah, I woke up this morning feeling very sad about that, so I'm grateful for having you here today, and you inspired some hope in me, and it reminded me that at least we can still put one foot in front of the other and help Bower participate to the best of his abilities however he wants to, and he definitely lets us know how. So thank you. And thank you for doing it for your 1200 other kids too,
Nathan:
Someone else's kids that I get to hang out with. It's so fun. Yeah, thanks. I'm inspired. I'm inspired by this and I'm inspired by Bower being at the gym right now and working out, and I think you're doing it.
Jen:
I'm trying. I'm certainly trying. He's a cool kid, and I think there's a lot of other cool kids out there, cool teens, and they just want to be part of everything that's going on, and that's certainly my goal is to make sure that they are, and however I can help make that happen, what I'm going to do, so what we're here for, right?
Nathan:
Yeah. That's why we're here.
Jen:
Awesome. Thank you.
Jen:
Thanks for listening to the Cerebral Palsy Health podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcast and follow me on Twitter and Instagram. You'll find the links in this show's description. Please feel free to email me with comments, questions, and topics you'd like to learn more about at JB Lyman at Mac. That's MA c.com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it is not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast or any other medical concerns with their personal medical team.