Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
Episode 5: Dr. Mark Peterson and Dr. Jen Ryan
313 Plays2 months ago
Follow
Cerebral Palsy Foundation on Instagram: @yourcpf
CPGU on Instagram: @cerebralpalsygrowsup
Email Dr. Peterson: mdpeterz@med.umich.edu
Email Dr. Ryan: jenniferryan@rcsi.ie
Credits
Host: Alexa Orban
Producers: Katy Gaastra, Kyle Khachadurian
Executive Producer: Ashley Harris Whaley, Rachel Byrne
Graphics: Briana Raucci
Recommended
Transcript
Introduction to Podcast and Guests
00:00:09
Speaker
Welcome to Cerebral Palsy Grows Up. Join us as we explore the unique experiences and stories of adults living with cerebral palsy. We hope this podcast helps you feel a sense of camaraderie and community.
00:00:22
Speaker
Today we're joined by Dr. Mark Peterson and Dr. Jennifer Ryan, two of the leading researchers in the cerebral palsy space. Jen's research focuses on cerebral palsy and disability. Mark's research focuses on understanding health factors that impact individuals with disabilities. He also brings a personal connection to his work as the father of a teenage son with CP.
00:00:44
Speaker
I think we all have questions about what the research has to say and what life will be like as we age.
Exploring Research Gaps in Cerebral Palsy
00:00:51
Speaker
But I also wonder, what more is there for the research to tell us? What are the existing gaps? And what answers are we still looking for?
Clinical Practice Guidelines for 2025
00:01:00
Speaker
Join me as we dive deep with Jen and Mark on all of this and an inside look at the clinical practice guidelines coming in 2025.
00:01:08
Speaker
So, it's so great to have both of you today on the Cerebral Palsy Grows Up podcast. I'd love to kick off the conversation with a brief introduction.
Jennifer Ryan's Research on CP Lifespan Health
00:01:17
Speaker
um So, Jen, if you could start with introductions, that'd be great. Sure. i will Jennifer Ryan, I'm director of the CP Lifespan Health and Wellbeing Research Centre or CP Life Research Centre for short. and We're based in the Royal College of Surgeons in Ireland. and I've been doing research on CP for the past 15 years on both children and adults and and I suppose we look around what the health of adults with CP is, health services for adults and any research we do involving children is always looking at how we can and promote the health of children with CP so that they can live well as adults.
Mark Peterson's Work on Health Disparities
00:01:55
Speaker
And I'm Mark Peterson. I'm a professor in the department of physical medicine and rehabilitation at the university of Michigan. I also have been doing work in this area for about 15 years. and And the primary focus of our work is um to understand and reduce health disparities among adults living with cerebral palsy and other neurodevelopmental conditions. And um also of note, I also have a teenage son, 14 years old Marcus, who has CP. So this is both very, very personal as well as my professional life.
00:02:27
Speaker
Well, thank you both so much for taking the time to join this conversation today because it's a very important one. um And you both have really diverse perspectives to bring to the table.
Motivations Behind Adult CP Research
00:02:38
Speaker
ah We hear so often in the adult cerebral palsy community that there's not enough CP healthcare care specialists or people studying CP for aging, for example. um And what's your reason for doing what you do? And why do you care so much about changing this reality? Jen, I'll send it to you.
00:02:55
Speaker
and I suppose firstly I got into the area I was meant to do a PhD on children with CP looking at GATE and I read a special issue of one of the journals Mark knows well and developmental medicine and child neurology. So in 2009 I had a special issue around adults with CP. and So I went back to my supervisor and said well can we include adults in this too because there's literally no research around adults with CP.
00:03:21
Speaker
And so that's how I got into initially, but once I was in it, so when I started doing my PhD and met so many adults with CP, like we, we had so many interesting conversations. I met their families as well as in some cases. And, and they often had lots of questions that they didn't know much about their CP. They weren't told a lot as children.
00:03:39
Speaker
They weren't able to access health services. Some of them had terrible experiences with health professionals as adults. So, you know, they knew very little about CP. And I was really struck by how unfair it was and how they didn't have a voice. So often you hear like advocacy groups, well, they're typically talking about an ardent.
00:04:00
Speaker
ah for other conditions, you know, there's strong advocacy groups for stroke or diabetes. And yet I was really struck by how there was even less out there for adults with CP and no one was speaking up or ah listening to them. So that really motivated me to to focus on adults with CP and it still motivates me. It can be difficult trying to, right do you really want to make a difference in trying to translate your research into it and into something that's going to you know improve the lives of people with CP, but we keep trying. yeah yeah and Honestly, that's something you know from that personal experience that I've had, um that transition, it basically was leaving the children's hospital that I was at. They said, here's three podiatrists that we've worked with in the past. and so That trade-off, it wasn't something that I felt comfortable with after 22 years of being with a particular specialist. like
00:04:58
Speaker
You just gain such a rapport with that person. They know so much about your body. They know so much about your CP. um So the work that you're doing is so important. And I'm sure you've seen that time and time again um as many young adults transition into adult health care. Mark, I would love to um hear more for your reason of doing why you do what you do and why you care so much about changing this reality as well.
00:05:22
Speaker
It's hard to follow Jen and you. i um I had a very similar experience where you know after my PhD, which was mostly focused on you know how does muscle and bone change with age, um transitioning to physical medicine, I was struck by the lack of i mean complete lack of of ah ah information, especially especially published data on health outcomes in adults with CP. And in fact, at the time,
00:05:45
Speaker
about 2008, so not that long ago, there were there were literally no studies published. So um you know between Jen and I, we've we've kind of started doing this work. I was lucky enough to be a part of her dissertation committee and I mean, she's she's done so much great work and we've tried to weve tried to improve that sort of health outcome you know literature, but also improve ah access to care by improving education for for providers who might see adults with CP. so you know Often people will will claim and and and feel like they've fallen off a cliff once they've transitioned from there from their pediatric care coordination to adulthood. That is something that you know both of us have been really trying to do respectively in our and home countries. so i think I think we've made a nice footprint.
00:06:34
Speaker
Yeah, that's such a good analogy to fall off a cliff um because it it definitely is. It's like, and good luck. So I i know that's not ah an experience unique to to myself um as well. But Mark, I'd also love for you to tell us a bit about being a parent with it to a child with cerebral palsy and how that's impacted your career trajectory.
00:06:56
Speaker
Sure. I mean, that's, I didn't mean to neglect to say that, but that was about the same time my son Marcus got a diagnosis of CP was while I was scratching, I had to see if there was really anything about adults with CP. um And my department chair at the time, Dr. Ed Hervets was telling me, you know, there's a lot of issues that our adult clinical population faces that are What we would say are similar to like a premature aging. So if you're interested in aging related outcome, this might be a population of interest So, you know again about that time coincidentally my son got a diagnosis of CP So I very quickly became obsessed with the field just in general but for ah for obvious personal reasons to try to understand the condition but then also
00:07:43
Speaker
professionally, um if there was this enormous gap in the literature and information, then that became um quite fascinating to me, frankly. Yeah. and um Why do you think there is such a gap in the literature?
Reframing CP as a Lifelong Condition
00:07:57
Speaker
Well, mosts for first and foremost, um because it it's a condition that is diagnosed in childhood, usually before the age of two, um it's been considered and been seen and even defined by our CDC is ah as a childhood.
00:08:14
Speaker
a disorder a childhood disability And so as a result, virtually all of the emphasis in terms of empirical data and science has been focused in the pediatric world. So um as folks continue to grow and grow up,
00:08:31
Speaker
um they transition but it's still been considered a pediatric onset condition and so it's been largely focused on as pediatric neurology and pediatrics in general um from the scientific and and clinical communities.
00:08:46
Speaker
Yeah, so it's it's so interesting too to just hear that you know as a young adult, now almost 30, coming into that change of that perspective of healthcare and how they've labeled CP just as a pediatric um disability. And so, Jen, I mean, you've managed to mobilize so many adults with CP to be involved with your work um and your research. um How was that something that you were able to do? And what was it like being at the forefront of that?
00:09:16
Speaker
Let's just first see, go back to Mark's point as well, around lack of research in adults with CP, that I think it's a bit of a vicious circle where there's no health, there's no clinical services, and therefore it's very hard to access adults with CP to do the research, to inform clinical services. You know, it's much easier to do research on children because often they're done in the clinic, your children attend the clinic, they they take part in the study while they're there.
00:09:43
Speaker
So in terms of both mobilizing out of the CP to be involved in our research and and we involve adults in all aspects of our research from health to decide like what questions we should answer and what data we should collect, how we should share your findings, and but also involve adults as participants. It's been a huge team effort and I can't take all the credit for it. so and We're lucky to have and some clinicians who know adults with CP and and ah they Now when I was interested in Lake Martin Research, I often put them in touch with us and say they can make it in together. yeah And in particular my colleagues, Dr. Manjula Manikandan and Jenny Fortune, and on several projects they've led the involvement of adults. So they've really worked hard to develop relationships and,
Involvement with the CP Foundation and Guidelines
00:10:31
Speaker
you know, properly involve violence so that they feel like their voice is making a difference to what we do and and making sure that whatever we do, we go back to the people who've, you know, involved and said, this is what we did because of what you said. And this is how we're trained to make an impact now.
00:10:49
Speaker
And also on that point, it's we do the research and then we publish it and and it could just sit there. And so actually it's essential that we work with adults with CP because they're the ones who want no other adults with CP. So often they get the research to people we can never research reach. And then also for trying to get things into the media, people don't want to listen to us as researchers, but they will listen to and the adults that we work with who will share our research as well as share their you have to experience. Yeah, I love when you talk about that impact. It really is that ecosystem, right? Like it's the communities that you connect with, the people that you connect with, um and even organizations like CPF too. How did you both come to be involved with CPF and the Preventative Care Clinical Practice Guidelines for adults with CP?
00:11:40
Speaker
You know, I can't actually tell you exactly how I got involved with CPF originally. It just becomes a very small community. And so, you know, one of the things that that I should follow up with Jen's comments and mention is that historically in the United States, adults with disabilities just in general um meet exclusion criteria for most every single clinical trial that's been done and in terms of preventive healthcare.
00:12:05
Speaker
So, you know, that in and of itself is a good example of ableism and the reason why there isn't a good amount of research on specific populations who age with a disability. And so, you know, we have really tried to to to make that the the be sort of the center of our universe in terms of not only we're going to include, we're going to include only adults with disabilities in our research. So um as we continue to build our portfolios where it began to get attention both, you know, and
00:12:36
Speaker
uh, research audiences, but also internationally too. So the CBF is such a large organization, both in the United States, but also internationally that, um, um, you know, start to get attention and Jen's work started getting a ton of attention and overlapping at conferences, especially the American academy conference, but also other international organizations.
00:12:57
Speaker
the world just begins to shrink and the number of people doing work in the adult or lifespan space is is very, very, very small, but it has been growing over the last 10 years. And you can see that by the number of abstracts of meetings and and publications and in large mainstream medical journals even. So um that's how I became became aware of CP Foundation and and Rachel and the the great work that is going on. And so when it comes to the clinical practice guideline, we felt this though, you know without any kind of a toolbox or clinical practice guideline, you know how how do we change the landscape of clinical care for folks with CP so that they aren't treated just for their CP? They're treated as a human being with all of the same organs that everybody else has.
00:13:45
Speaker
um and as a whole human being. And so it became very, very apparent that without that type of toolbox, without that type of practice guideline, um it would be very difficult to inform our general clinical audiences on how to how how to look at the person with CP without reducing them to body parts and spasticity management, more of a holistic preventive medicine agenda. And that that's that's kind of how that was born and how that is going and where we're moving in hopefully the right direction.
00:14:20
Speaker
Jen, what would you like to add to that? The the way I got involved with it is through Mark. Mark emailed me and asked me would I be involved and when Mark asked me to be involved in things, I always say yes. so That's great. Yeah, and Mark, I think that's something that's from that perspective where you were talking about looking at the person coming in as a whole person because I've i've had the personal experience and I know um this is something, again, not unique to myself where it I almost feel like I'm reduced to that body part, right? So, for example, I went to a clinician who said I should have this specific surgery and was trying to set up the appointment almost like I was booking a vacation for a
Challenges in Adult CP Healthcare and Guidelines
00:14:59
Speaker
cruise.
00:14:59
Speaker
Like, that's how casual the conversation was. Like, this is a normal thing. And I didn't feel like it was part of my whole care. i didn't They didn't learn too much about my past. They didn't learn too much about my mobility. um And I think that that comes into play so much um when we talk about these guidelines, how to treat adults with CP.
00:15:18
Speaker
and looking at that whole picture because a lot of our experiences are so unique and diverse. um Having a ah foundation where there isn't one at all right now I think will be so important. So can we dive into these guidelines a little bit? Can you tell us what they're all about? How will they function and how will they be helpful to adults with CP?
00:15:38
Speaker
I mean, we're in the development at this point, but what the goal is, is, as I said, to create a toolbox about what health outcomes could arise in adults aging with CP, individuals aging with CP, kind of the timeline or the sequence of events that they may arise and some of the risk factors that go into some of the outcomes. And so we think about normal aging related ah chronic conditions. And what we're finding is that adults with CP also have these conditions and perhaps they have them at an earlier age. So without that type of information, clinical provider won't know necessarily that we should be screening for things like Um, you know, hypertension, maybe earlier than, than normal or low bond density, maybe perhaps earlier than normal or, you know, various different types of pain, um, that may be affecting an individual more so than just joint pain. Um, and so I think.
00:16:36
Speaker
you know, without getting into the explicit details of the actual domains that we're creating, um what we're trying to do is we're trying to create a guideline that allows for clinical providers to screen the appropriate, um you know, diagnostic screening algorithms at ah an appropriate age so that we can hopefully you know improve the the interventions that that can go into reducing risk for developing these chronic diseases through you know modifications and medication or lifestyle and behavior. um Even sleep is something that we're looking at. so you know It's really important to consider, again, the person as a whole person and they have risk factors for chronic diseases that align with aging just like everybody else.
00:17:22
Speaker
old and not only treat them as if they have CP and that's the only thing that brings the table. So the hope is that we can and improve just general practice for individuals so that we can reduce the burden of chronic diseases that they may see at perhaps a higher level than you know somebody without CP. yeah Jen, do you want to go into detail a little bit more on some of the guidelines as well?
00:17:48
Speaker
I think that they can be used in two ways or I see them have been helpful in two ways, one that and for adult adults themselves and to self-advocate when they go to see a health professional. Unfortunately, in an ideal world, you wouldn't have to advocate and health professionals would provide the best care at the right time. and But we know most health professionals don't know very much about CP and often put CP at the center and you blame anything on CP rather than thinking,
00:18:16
Speaker
you know, what else could be going on and that often prevents them from finding the best care at the right time. So I hope that it'll be a way for adults to feel, you know, well-prepared when they go to speak to health professionals because they have a good idea of the evidence out there and they can bring the guidelines with them and say, this is what I should be offered. to And then secondly, as Mark was saying, that it's making sure that health professionals have a toolkit. Now we know from our research and from talking to adults with CPE that they're also talking to health professionals that Often health specialists just don't feel confident in seeing adults with CP, and sometimes this means they don't they refuse to see adults with CP because they don't feel that they're comfortable or confident in working to provide care, and which is obviously shouldn't happen. But also, they're expected to know about a lot of different conditions.
00:19:06
Speaker
and And it can't be expected to read all the research in one area. So and this provides the which was a summary of the best evidence out there in a really quick format that's easy for them to understand and easy to implement. And they can make the best decisions for people with CP.
00:19:24
Speaker
yeah I mean, look, the the general practitioner in the United States and probably this is very similar, um a lot of other places, they they may have had a neurology um for a few hours when they were in medical school and residency. So they there is a good chance that they haven't thought about CP in their entire clinical career. In fact, I i i always say this story because I think it's such a great act is that yeah we We interface with a lot of adults with CP just as a part of the research process um for for stakeholder engagement and and input that is just invaluable. And I've been told by ah several people that doctors don't think that I could have CP because I'm an adult. So it's it's not just that there's a lack of information. it's like
00:20:08
Speaker
It's a desert and so desert of information out there. So this is hopefully something that we can do to reinforce just a one-stop shop, a trove of information for for clinical practice guidelines and also providers so that they they have something to go to as ah as a handbook of sorts that they they can use to treat an individual ah more holistically and in a preventive way.
00:20:37
Speaker
Yeah, and i I think also like coming from that standpoint, the providers having that information is so important, but I do agree, right? Like they are treating such a diverse spectrum of patients in general. So, you know, to be able to be well-versed on something that they might not see every day comes to that self-advocacy, say for myself.
00:20:59
Speaker
um and I'm going to a new GP and um you know I'd like them to know more. This resource is something I can learn from and and also give to them. But what's some other advice that you have for adults with CP who are trying to navigate the healthcare system?
00:21:14
Speaker
One of the things we're trying to get folks to understand is that they they it is it is important to, it is really important to advocate, it's really important to think not just about CP in terms of symptom management. um we' are We are having a huge impact on ah the research pertaining to mental health, for example, and I think that that is something that it doesn't just happen in adulthood. you know we We created and a lot of information about adults But a lot of this information is important to consider for for kids with CP as well. So when we say lifespan, lifespan really is indicative of the entire life, which, ah you know, ah starts in childhood. So, you know, if if we're foreseeing adults with CP who have perhaps they have some issues with mental health disorders, for example, depression, some of the risk factors perhaps could have, arise you know, rose in childhood. and so
00:22:07
Speaker
Addressing these things is is sort of a lifespan approach. where We think about what happens in adults, but there is some translation backwards to childhood, too. So we hope that the community of pediatric providers can benefit from these these guidelines as well, but also the research pertaining to health outcomes and health disparities facing these individuals, because it is a light it is a lifespan issue. It's not just things that happen with age.
00:22:32
Speaker
Yeah, and do you both see this as a critical research gap that we need to fill, or is there any other gaps that you'd like to see filled within the research for people living with CP? Jen, I'll send it your way. I think one of the areas that particularly we need to focus on, I suppose, addressing the challenges of the health services analysis, CP, I see kind of two-pronged approach that one we clearly need to improve health services for adults and we can't expect adults with CP to manage their condition when they can't access the right care at the right time because it just doesn't exist out there.
Healthcare Transition Challenges for Adults with CP
00:23:06
Speaker
So that's one thing we we obviously need to try to address and probably can address it collectively rather than individually. But then secondly I think ah and one area that needs work on and
00:23:17
Speaker
and could be better implemented as around supporting children to learn more about their CP and to know from an early age it's a lifelong condition and it needs to be managed and like anybody we need to do what we can to stay healthy but actually you know not managing your health and your life can have some utter consequences for people with CP that maybe people without CP don't experience so I often think When you ah we meet adults with CP, you say, well, you know our pediatric providers didn't tell us anything about what aging with CP would be like. And that's often because they they don't know it themselves. It's something I find really frustrating when and I meet pediatric providers saying, I've never met an adult with CP. But you should preparing them for living, you know, throughout life with CP. And so I think that's one area around kind of self-management, self-efficacy of managing
00:24:08
Speaker
your health and and you know knowledge of your condition and how best to to manage it. That's what we could improve in childhood. Yeah, and even here in the US, s there's there's ah there's a ah large percentage of adults with CB who are still seen by a pediatric provider because there is such a lack of so so exactly there's such a lack of clinical providers. So we're trying to really do this top down, bottom up approach of of not just doing the research, but also ah training and educating providers. and you know The number of adults with CP who actually are also going into medicine will help as well. and We've employed and then have a few people on our on our team who who have CPI, the medical student who has CP. um and and I think that that's actually a really awesome you know direction to be moving in as well, is is including folks with CP who are going into medicine to be good advocates for the field as well. um the other alexsa The other area gap, I should say, is is the transition phase. and so
00:25:07
Speaker
Perhaps one of the biggest reasons why this is a problem is that this beautifully orchestrated clinical care that is done during childhood does not transition at all into adults. So there's no continuity of care at all um where there's multiple providers and specialists that get this baton from childhood to adulthood. And so our adults do feel like they fell off their cliff um because they did have good orchestrated care when they were children and and depending on the state through, you know, their 20s. And then when they get to adulthood, they're either seen by orthopedic surgeon as a quarterback and clinical practice individual, or they have a, you know, a PMR doctor or just a general practitioner. So there isn't great coordination of care. So the transition phase, and then the coordination piece in terms of implementation is the two big gaps that still exists.
00:25:58
Speaker
definitely Yeah, and I can see that from a personal perspective. I mean, my new orthopedic, who is my primary um CP provider, they didn't receive their records from the children's hospital that I went to for almost two years. And I had requested them and requested them, so I had to start back at phase one. When I've gone to physical therapy, we start back at phase one. And this is a story I tell often.
00:26:22
Speaker
um I don't know why, but PTs always put a towel on the ground and they tell me to grab the towel with my foot and move it across the ground. I'm like, well, I'm 29 years old. I have never been able to do that my whole life. So I don't think that this PT session focusing on that is going to be what's beneficial for my care.
00:26:42
Speaker
Um, and so I think that, you know, filling that gap, it doesn't have to be perfect. And this isn't something that I don't think any of us, you know, I can speak for myself, but we'd like some sort of transition versus feeling like we're starting from square one again. Um, because that mental load, especially is something that's exhausting to add into life. Um, and so having some sort of transition where it's easier.
00:27:06
Speaker
you know records being um able to be accessed and researched before I think would be something that's so helpful. And you know something that i that I also think that we talk about because your research is so involved with many people aging with CP is what should we know about the aging process?
Aging and Chronic Diseases in Adults with CP
00:27:24
Speaker
We've brought it up a little bit, um but I'd love to hear you know some of the things that you found with your research.
00:27:30
Speaker
you know so I've been specifically told that a lot of my work is very upsetting um because what we have found is that um folks with CP seem to experience a significantly greater risk for early onset chronic disease um and function with functional decline.
00:27:51
Speaker
And so um that what does that mean? That means basically that some of the things that arise in middle to late adulthood in the general population seem to be happening a little earlier in the adult CP population. So um you know diseases of multiple organ systems happen at a higher rate and also earlier among adults with CP. That includes things like osteoporosis and metabolic disease.
00:28:16
Speaker
um and and you know kidney disease and things like that. The thing that I always go back to is that most chronic diseases are preventable. And so we think about our practice guidelines. If we can screen and identify people who are potentially at risk, there is an intervention for virtually every chronic disease that can prevent or forestall those chronic diseases. um And some of them are clinical interventions and some of them are lifestyle ah interventions like physical activity. um Because most folks with CP have done physical therapy for a very long period of time. They they don't like to do physical therapy as adults, but physical activity, especially leisure physical activity
00:28:57
Speaker
can be enjoyable and also extremely beneficial from a health standpoint. In fact, there's a whole movement to ah accept exercise as medicine um in the general population. And I i really think Old Gen and I have backgrounds in physical activity and physiotherapy. So we both advocate for healthy lifestyles, including physical activity. um And those those can really be a huge impact for virtually every organ system, including the brain. So, you know, we we continue to advocate for for physical activities of primary intervention to prevent some of these health outcomes.
00:29:32
Speaker
That's so great to put it into like that, again, like that whole person, whole health, um where you're starting at the care of what they need from a medical perspective, but also those lifestyle changes. I'm i'm a big um person to say that, like of course, medically, I have the professionals that I go to, but I also have a naturopath that's really supported and and helped my journey a lot with supplements to exactly help things like osteoporosis and you know making sure. like I do blood work often um and making yeah piece of my journey um and in order to stay healthy. So Jen, I'd also love to see um if there's anything else you'd like to add or what adults with CP deserve to know about the aging process.
00:30:12
Speaker
In Richmond, I often get told my research, I don't, it's just bad news. I don't want to hear it. But I think even though we found a higher risk of lots of different chronic conditions, the absolute risk isn't always that big. So although we know adults with CPE more likely to get it, not a large proportion of adults with CPE will actually deb develop like these conditions, at least and from the data we have in the UK and Ireland. So I think that's one thing to consider.
00:30:41
Speaker
I also and like what Mark was saying around promoting health. I often think when we meet adults with CP, one of the things that they find most frustrating is that they weren't afforded anything about how their CP were might change. and And we're kind of told once you discharge from Children's Services, you don't need to see people because your CP will remain stable. And particularly in you know decades gone, hopefully more recently, people are getting different information to that. So I think and one thing I'd like people to know about the aging process is you know your CP might change either you know for the good or worse at certain times during your life and it will fluctuate and knowing how to identify when you might need to seek help is really important and obviously it can take a long time to get help from the appropriate person so if you're able to identify um symptoms or signs about why you might need to to seek help
00:31:34
Speaker
at least you can go early. So things like having more falls than usual. Often I meet adults at CPEs who fall more often and say, or a tape is just part of getting older with CPE. Whereas I'd like them to be better informed in childhood that, no, if you start falling more as an adult, you should go and try to find a reason for it for that and try to find it. And I support and ah to Mark's point as well around physical activity and my background is in physiotherapy and I mean there's lots of research out there how adults have terrible and ah memories of physiotherapy or physical therapy in childhood. I think one thing that's really missing in in childhood is that link between physiotherapy and physical therapy, physical activity in the community. So there just seems to not be a good bridge between the two. So you do your exercise with physio but no one's supporting you to actually be more active in the community.
00:32:26
Speaker
And so we're working on that at the moment, that we want to better build a bridge between physiotherapy and community supports to be more physically active. And I think if we can do that, and and that's something that people themselves can work on in childhood, well, that's something that will, you know, stand to them as adults. Yeah, and I'd be really interested to see because I um have seen so many children with CP going to intensives, where instead of it being once a week, and then if you're on your own for that week until you go back to PT,
00:32:55
Speaker
you know, and and for coming from personal experience, maybe not doing the exercises you're supposed to do on the off time and then going back. Do you think that, you know, like these intensive programs can also benefit adults with CP for their movement? I definitely think it for both children and adults, I think intensive PT at certain times is really beneficial, but I think it needs to be supported by being active in the community. So we all need to be physically active you know, consistently. And at certain times in our life, whether it's, you know, post-surgery or post-injury, or maybe there's a time and in childhood or adulthood where you think, actually, we can really focus on, you know, improving function, this is a good window, then that's a time for intensive
00:33:37
Speaker
intensive therapy, but it needs to be supported by that holistic, you know, view of being active. Yeah, I agree 100%. You know, it's really, it's an experience that you have to put into yourself and maybe extra work and what other people might put into their day to day.
00:33:54
Speaker
um But personally, you know when I do push myself to do that, I want to be in my 60s and still being able to be mobile. and so Those are some of the drivers for for myself to keep moving on days that maybe I don't want to. um I would also love to learn some more about the
Impactful Research in the CP Space
00:34:12
Speaker
research. We've talked about your research a little bit. What research of yours in the CP space are you most proud of or do you think was the most impactful? Mark, I'll send this your way.
00:34:21
Speaker
That's a really good question. I always think like, what what have we done that's been impactful? But I think forward more than backwards. And i I'm really excited about the future. you know we've We've done some really good work and have published some great papers and and you know Jen and I have worked a lot together and have done some some great great scientific contributions to the field in terms of health outcomes and health access and health care utilization. But you know I think the future is is is really exciting because we're we're both working and in the the area of now pain. And I think that that resonates with a lot of folks. um And it has implications for not just you know ah you know pain management, but also mental health, physical activity, participation,
00:35:07
Speaker
um and virtually every kind of part of life. And so if we can improve pain in individuals with CP, um that that is that that will be a really important i think contribution to ah the community of folks living with CP. um And one of the ways we're doing that is we're trying to identify the mechanism of pain. If we can figure out the mechanism of pain and not just treat it as every bit of pain in CP is coming from the body parts, maybe some of it's coming from the nervous system and maybe some of it's coming from the brain, we can start to identify
00:35:43
Speaker
ah peripherally directed, but also centrally directed pain management strategies that will substantially reduce the pain experience, the pain intensity, and perhaps even pain altogether in folks with CP. And that is, um I think that's the thing that I'm most excited about that we're we're working on and trying to get funding for right now um going forward. Hopefully that will be something that we can accomplish.
00:36:07
Speaker
Yeah, I would absolutely love to see that work. I think that's so interesting. I have heard that um about pain management. You know, sometimes we we blame it on like the the muscular or, oh, I had surgery there, so that must be why. um But it's interesting to see why our body has those pain receptors in certain areas and also listening. Like, what are you trying to tell me right now? um Jen, I'd also love to hear some of um your favorite pieces of of research and some projects that you're working on.
00:36:35
Speaker
I think also I'm most proud of the research when and I presented to health professionals who work with children with CP. So when I've shared our research on you the risk of developing certain chronic conditions and and they said, I never knew this, you know I see children with CP every day and I didn't know this.
00:36:53
Speaker
and And I often think, well now you know it, so you can go back and support the children that you see to, you know, prepare for adulthood and and not leave them in dark about potential risk and advise them properly to manage their health. Another thing that more recently I'm proud of, and I should say I'm proud of my colleague, Jenny Forti, who led the work on this. and We were consistently frustrated by doing research and identifying the problems around, particularly around health services and transition and and making recommendations for how to improve it, and then nobody taking it for doing anything with it. So and Jenny has done a lot of work in the past few years to actually take our research and translate it into resources for people with CP and families. so
00:37:37
Speaker
and things like developing websites for transition and information that previously hasn't been given to to children with CP. him Jenny's working on an app at the moment to support that transition as well. So like what you were saying earlier about, hey, can we transfer some of the information from children's service to adult services in 2014? I mean, Ireland does really per electronic health records, so we're hoping it's going to be a kind of stopgap to give people that information themselves that they can then pass on to to help professionals and adults. Yeah. It's definitely empowering when you have the tools to make the change too. um on On both sides, you know, with the work that you're doing with the healthcare professionals and also for the people going to get the services. So I think it it goes both ways.
00:38:22
Speaker
Well, we have been saying this question to everyone, and I'm sure you will both have a very long answer. um But let's try to think of one.
Desired Healthcare Changes for Adults with CP
00:38:30
Speaker
um What's the number one thing you want to see changed about healthcare for adults with CP?
00:38:38
Speaker
oh Wow, that's tough to distill it down to one thing. you know i think I think one of the problems in the US is that our healthcare care system is is is a little fragmented, um especially for folks who have compliment complicated medical conditions. And so often people on Medicare or Medicaid won't won't receive the services, just generally speaking, because there are so few providers who are covered by those insurance benefit you know benefits. And so that that is one thing. If we can start to improve the healthcare infrastructure, healthcare care coordination, and also health policy around you know activity that improves these folks' care coordination and continuity from childhood to adulthood,
00:39:22
Speaker
That would be, that would be ultimately, I think, extremely beneficial for people. um We also have to start training more medical students. We have to have residents be in specialized programs. And I mean, there is not a single fellowship that I'm aware of that people can specialize in CP specifically in adulthood, but also other uh, neural developmental conditions across the lifespan. So there needs to be a much better, uh, education infrastructure as well, uh, for, for, for clinical providers so that they understand the unique needs for for folks who are, you know, aging with a disability.
00:39:57
Speaker
So I don't have the ability to distill it down to one single thing. That's impossible. um But hopefully we can we can continue this this movement and inform people. And even redefined CP is a lifelong condition. I mean, I think that is such an important thing. If we just start rewriting the definition, the operational definition of CP to not be a childhood onset disability, but a lifelong physical disability, that's going to go a long way to improve.
00:40:25
Speaker
um some of these things that we've we've discussed today. We have the same problem in Ireland with the lack of education and in the UK there's no training scheme. for yeah this no There's very few rehab and medicine consultants in Ireland and none of them specialise in CP. They specialise in acquired brain injury or an acquired disability.
00:40:48
Speaker
Um, it's differently in Ireland is because we have a national healthcare system. So, um, things should be less fragmented, but what I find really frustrating is because no services exist for adults with CP, we don't know who's responsible for developing them. So, you know, we can, um, talk about the, you know, the lack of services for children or that they're not adequate for children. And you know exactly who to go to, to, to say these need to be improved.
00:41:15
Speaker
But because there are no services for adults, there's nobody really with responsibility for developing them, which is very frustrating. hey And the one thing that I'd love to see and I think could make such a difference is providing proactive care to adults with CP. So in Ireland, adults can access services if they have an acute need, like you might be able to get physiotherapy for six weeks if you have an injury or you feel like it functions declining but after that you're left on your own again. Often people don't need health services for you know several months or a year but when they do need them it would be really nice to have a place for them to go where they know they can see specialists rather than trying to fight for a year or two to find a service that they can access.
00:42:04
Speaker
and And that could also solve the problem with transition. Like we know transition could be improved or there's good evidence if children meet the adult teen before they leave Children's Services that their experience of transition is much better. But unfortunately for a CP there's no adult teen to hand them over to. you So and but without that proactive care there's just so many gaps.
00:42:26
Speaker
and know And I'll say, I'll add to that too, Jen, is that you know groups like yeah some of the UK and Ireland groups, but the especially the CP Foundation, the advocacy that goes on with within the foundation you know to the community, but also to our government is extremely important and it's so much great work coming out of the foundation.
00:42:46
Speaker
to to do just that because if we can raise awareness around not just CEP but lifespan care for people with CEP, we can you start to advocate for actually more funding and funding is a huge part of the reason why therere there hasn't been a lot of research and and clinical changes is that there's very little funding um for CEP at the government level Um, so we're, we're constantly writing letters to the NIH and advocating, you know, in Washington about the need for improved, uh, health access and funding streams for CP specifically. Obviously we're, we're focused on CP, but other, other neurodevelopmental conditions as well. Um, because I think that's going to be, that's going to help with, um, allowing for better research more, uh,
00:43:30
Speaker
ah educational opportunities and ultimately better healthcare care access for for people living with CP across the lifespan. I think that was a mic drop moment there, Mark, too, like to just wrap it all up, um because it it is so true. and And all the work that you're doing, um it does start, right? like It starts when you kids are diagnosed with CP, and it's a lifelong disability. um So having those resources, having the care, and having the pieces in place that give a foundation of care for lifelong um availability I think is is so important.
Closing Remarks and Acknowledgments
00:44:04
Speaker
and um We appreciate your time today on the podcast. Thank you so much for joining us. Is there anywhere our listeners can stay connected with you or or ah stay connected in any way? I'm always available. So if you want to provide my email, please feel free. I love getting, I love getting email um from from folks in the community and researchers and and other folks. So good yeah feel free to share my email.
00:44:31
Speaker
Yeah. I'm not personally online very much, it but our research center has a website and is on LinkedIn and on X. You can share those links and ands the same as March and anybody, I often get emails and they're very happy to to speak to people over email. Great. Well, thank you so much for joining us today.
00:44:53
Speaker
Thanks for having us. thank you for listening to this episode of cerebral palsy grows up the podcast this show was produced by ashsterley harris whalele katie gasre and kle keidorian hosted by lex oran and its logo was designed by brianna rachi we'd like to thank our listeners for being a valuable part of our community and we'd also like to thank mark peterson and jen ryan for their time and their expertise don't forget to subscribe and rate sure holes it grows up the podcast from wherever you get your podcast And, please follow us through our polls that goes up on Instagram and TikTok to connect with the project and stay up to date. Thanks again for listening, and we hope you'll be back for our next episode.