On this episode, I have the honor of talking with Wendy Pierce, MD, a pediatric physiatrist at Colorado Children's Hospital about physiatry, also known as Physical Medicine and Rehabilitation. This fantastic field of medicine can be helpful for individuals with cerebral palsy across with lifespan, but it has a confusing name and sometimes a confusing job description. So we set out to help listeners better understand what a physiatrist does.
We discuss the history of physiatry, the conditions they treat, the types of medical interventions they utilize, and what the practice of physiatry looks like for individuals with cerebral palsy.
Dr. Wendy Pierce is board certified in Physical Medicine and Rehabilitation with a pediatric subspecialty. Her focus is on improving the function of children with chronic illnesses including cerebral palsy. She earned her medical degree from Northwestern University and completed her residency at Baylor College of Medicine. She started at Children's Hospital Colorado, where she completed a fellowship in pediatric rehabilitation medicine. Dr. Pierce began her career at Rady Children's Hospital San Diego then in April 2014 started at Children’s Rehabilitation Clinic in Colorado Springs. She is faculty at the University of Colorado.
She has served on several committees of the American Academy for Cerebral Palsy and Developmental Medicine. She is a member of the data review team for the clinical gait lab at Children’s Hospital and serves on the board of the Commission of Motion Lab Accreditation.
She and her husband Aaron have volunteered for the adaptive ski program at Children’s Hospital Colorado, which is how they met. She serves as bus staff and medical consultant. Her husband is a sit ski instructor for the program. Her husband is a mechanical engineer by training and now works for Numotion as an Assistive Technology Professional. They have 2 happy girls – Penelope age 4 and Abigail age 2 and 1 cat and 6 hens.
Jen Lyman (00:00): If you or your loved one has cerebral palsy, chances are that at some point in your journey you will be referred to a physiatrist, and chances are even more likely you will wonder what the heck a physiatrist is and what does one do anyway. I'm your host, Jen Lyman, and today I'll be interviewing physiatrist Wendy Pierce so that we can learn about what she does and why this medical specialty is a fantastic fit across the lifespan for individuals with cerebral palsy.
Jen Lyman (00:34): 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 can 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 Lyman (01:12): Dr. Wendy Pierce is board certified in physical medicine and rehabilitation, with a pediatric sub-specialty. Her focus is on improving the function of children with chronic illnesses, including cerebral palsy. She earned her medical degree from Northwestern University and completer her residency at Baylor College of Medicine. She started at Children's Hospital Colorado where she completed a fellowship in pediatric rehabilitation medicine. Dr. Pierce began her career at Rady Children's Hospital in San Diego, and then in April 2014 started at Children's Rehabilitation Clinic in Colorado Springs. She is faculty at the University of Colorado. She has served on several committees of the American Academy for Cerebral Palsy and Developmental Medicine. She is a member of the data review team for the clinical gate lab at Children's Hospital, and serves on the board of the commission of motion lab accreditation. She and her husband Aaron have volunteered for the adaptives key program at Children's Hospital Colorado, which is also how they met. She serves as bus staff and medical consultant.
Jen Lyman (02:16): Her husband is a sit sky instructor for the program. Her husband is a medical engineer by training and now works for New Motion as an assistive technology professional. They have two happy girls, Penelope, who is age four and Abigail, who is now two, one cat and six hens.
Jen Lyman (02:34): Welcome, Wendy. I am thrilled to have you on the show. I think I've known you for about six years now, when you were the chair of the advocacy committee for the American Academy for Cerebral Palsy and Developmental Medicine. Is that true, I think?
Wendy Pierce (02:47): That's correct. And I remember I met you as we were working on the community council. It was exciting. And I think I was pregnant with Penelope at the time, but we didn't know if she was a girl or boy. And so I'm just so excited that you have decided to create this podcast. I remember finding it on the website and just emailing you, going Jen, I'm so excited. This is such a wonderful thing that you're doing for the community, so congratulations. I'm so pleased.
Jen Lyman (03:17): Well, thank you. And I can't even tell you. I have been thinking about this topic, and the minute this topic came up, I was like Wendy is the perfect person to interview. I can't wait. We're always getting asked what does a physiatrist do anyway, so I'm curious, do you ever get asked what you do?
Wendy Pierce (03:34): Oh, all the time, and even my parents still sometimes have to confirm what I do for a living as well. Frequently, especially with new patients, they often will ask why they're here in clinic and what their purpose is, so it's a very common question.
Jen Lyman (03:51): So what is the funniest thing that somebody thought you did for a living?
Wendy Pierce (03:55): So the full name of the field is physical medicine and rehabilitation, and so sometimes, also with the name physiatry, a lot of people can get us mixed up with mental health psychiatrists, and then oftentimes with the word rehabilitation or rehab medicine, I often get asked about addiction, which I'm like that's actually a very different area of specialty that is different from what I do.
Jen Lyman (04:21): It was funny last night. My husband and I were talking about it and he was like, "Man, I thought physiatrists were like podiatrists." And I was like, I really don't think it's the same, Chris. And he's like, "Don't tell Wendy that I didn't know."
Jen Lyman (04:36): Before we get into what you do for a living and the nitty gritty of what physiatrists actually do, I'm curious why you got into this field and why you chose to work with people with cerebral palsy and other disabilities.
Wendy Pierce (04:49): So I would have to credit my mentors actually at Northwestern. So they have a very robust physical medicine rehabilitation department, and so even as an undergrad at Northwestern as a biomedical engineer, I started working with someone at the Rehab Institute of Chicago as it was formerly known. Now it's Shirley Ryan Ability Lab. So one of the mentors there, Dr. Todd Kuiken, was who introduced me to the field and it requires a lot of mechanical and critical thinking and it's a very goal-oriented and practical field, so that's what led me to find out about it as an undergrad.
Wendy Pierce (05:29): And as far as working with people with disabilities, that really solidified in med school, where I would volunteer at the Rehab Institute of... sorry. I keep on calling it by its old name. Shirley Ryan Ability Lab. And mentors such as Dr. Deb Gabler introduced me to the world of pediatrics and I really enjoy just the goal-oriented aspect of the field and working with people with disabilities. That's kind of their mantra, what are we doing? Why are we doing it? And I do get inspired by families and patients because they are on an uphill battle in society, and so I just really enjoy watching that journey as people are working through new disabilities or disabilities that they've had for years.
Jen Lyman (06:22): Got it. Well, I have to say it's really cool that Dr. Deb Gabler was one of your mentors. I think she's fantastic, and some day I hope to have her on this podcast as well. We'll have to find a good topic for her to talk about.
Jen Lyman (06:36): Well, let's dig into physiatry a little bit. The name physiatry, physiatrist, physical medicine and rehabilitation, PM&R, is there a preference? What do you guys like to be called?
Wendy Pierce (06:48): That's a great question. I think they are all great words, and sometimes that makes it harder because there are so many different names that you can call a physiatrist. I like the term physiatrist, but sometimes people don't then necessarily understand what I do, and so that's where I used the physical medicine and rehabilitation piece. And again, I think a lot of it is just personal preference of what you are used to. So I think that you wouldn't offend anyone by using one term over the other.
Jen Lyman (07:21): Well, it's funny. My mom has such a hard time pronouncing it. We were, I guess it was a couple Christmases ago, one of my close friends is a physiatrist here in New Orleans and he was over here and she was asking him to spell it and she was having him pronounce it, and finally we're like, just call it PM&R, mom. It's a lot easier.
Wendy Pierce (07:40): Yeah. I've done with my parents too. We'll just leave it at that.
Jen Lyman (07:45): So what does physical medicine and rehabilitation actually mean? It's a funny term to me, and when you think of a surgeon or orthopedic surgeon, I feel like some of these other medical specialties, their names sort of speak for themselves. But physical medicine is a little bit off. Can you tell me about it?
Wendy Pierce (08:06): So I get asked this question all the time also by my family too, and the history of it is physical medicine actually started in the 1930s and it was defined more as looking at the medicine behind challenges with movement. So it's a little different from orthopedics where there's bone and muscle, but I think it's more the action piece that defines physical medicine. And then the rehabilitation part came in primarily because of soldiers coming back from World War II, and so our specialty is really known for understanding the sequelae of various different types of injuries. So that's how the field came to be and came to create this name.
Jen Lyman (08:59): I got it. So I'm kind of throwing this in there, but what separates a physical medicine and rehabilitation physician from a physical therapist?
Wendy Pierce (09:12): So the therap- that's a great question. I get asked that all the time too. So the therapist is actually performing the weekly, bi-weekly or whatever frequency of actual therapy and movement, guiding that movement, whereas the physiatrist, or the physical medicine doctor, is more of the captain of the ship and helping to guide that direction. So we have the medical training to understand better what are the long-term implications of a particular process that is leading to the disability, whereas the physical therapist is actually working with the nitty gritty pieces of the disability itself. So we can prescribe medicine. We order x-rays and we can perform procedures that are separate from what a physical therapist can perform.
Jen Lyman (10:11): Got it. And what credentials do you all have?
Wendy Pierce (10:14): So we go through... it's a medical degree, so we all go through our four-year degree from med school. Afterwards there's, specifically in pediatrics there's two routes, but in general you do a one-year intern year, so that's your first year of residency, and then afterwards the training is for three years. For pediatrics, if you choose that route, you do another two years of fellowship, so that's a total of six years of training before you start working on your own. The other route that the pediatrics of specialty specifically can go through is actually, and you all might encounter this, is someone that's double boarded both in pediatric medicine and in physical medicine rehabilitation.
Jen Lyman (11:04): Yeah. I think that's one of the cool things about physiatry is that you can find some folks that are double boarded and who can see your loved one through the life span from pediatrics through adulthood and aging. To me, Bower's first physiatrist, he's 16 now, I think the first time he saw a physiatrist he was five, and I recall at the time there were so few. It was really difficult to find one, and I feel like over the past 10, 11 years it's become... I've made a lot of physiatrist friends maybe. I don't know if my world's getting smaller or the physiatry world is getting bigger, but it definitely seems like there's a lot more of you guys, which is great because I think the world of what you all do. Is it just me or is there actually a lot more of you guys around these days?
Wendy Pierce (12:02): I think so. I think that we're training more and more physicians and our academy is working really hard at educating, especially at the medical student level, just about what the field is because we're not that well known, and I tell my families that although we're not well known, when you need us, you really do need us, and you realize that after you've met one of us. But yeah, so now there are a lot more training programs and there are more people coming out, which is great, which is wonderful for the community.
Jen Lyman (12:42): Well, let's get into that. So the community, what is the community? What populations do you work with? What disabilities do you work with? It's a pretty broad field and I know this list is pretty long, but I think it would be helpful for people to know kind of who all you're seeing.
Wendy Pierce (13:00): So me personally as a pediatric physiatrist, I see kids who have a physical disability to, in general in children, they're more likely to be congenital, so due to things that they're born with versus something that's acquired. So cerebral palsy is the most common cause of physical disability in children, and so pediatric physiatrists see a lot of patients who have cerebral palsy. We also see kids who have spinal cord injury, spina bifida, neuromuscular disorders like Duchenne muscular dystrophy, and brain injuries in general, acquired brain injuries, physical disabilities associated with tumors. So you're right, it is a very broad field. We see concussions.
Wendy Pierce (13:55): On the adult side, they also may choose to see... may sub-specialize in sports medicine and see athletes, adults who've had strokes, also brain injury and spinal cord injury, amputees as well. So you're right, there is a large host of different causes of disability that we see.
Jen Lyman (14:20): That's pretty cool. I've had the privilege of working on inpatient rehab with physiatrists in my role as a recreation therapist, and I always felt like you guys got what I did as a rec therapist. You all understood... it was... you definitely understood the functional side of things, but you recognized that rec therapists really worked on helping people get back into the community and make friends and socialize and have fun. And the skills that occupational therapists or the speech therapists or the physical therapists were working on, we as rec therapists could practice with the kids or practice in a more social setting and in a setting that was more natural and less rigid, and we weren't as focused on things looking perfect. We were more focused on getting out there and doing stuff. I just felt like I was always... I always loved working with the physiatrist because you guys got that. You put the fun into function.
Wendy Pierce (15:30): Right.
Jen Lyman (15:30): It was kind of what I always think about you. But besides inpatient rehab, which is what I know best, what other settings do physiatrists work in?
Wendy Pierce (15:44): So we work in outpatient settings, either in private practice or academics. Some folks actually go into occupational medicine where they see folks who have been injured from workplace injuries. So there are those who are medical directors, so for example, one of the head physicians of the USA Olympic team, he's a physiatrist. So it can be anywhere from outpatient to also even... they can serve as physicians for sports teams as well.
Jen Lyman (16:25): That's super cool. Yeah, I was thinking about one of the settings that we went, and this was actually with Bower as a patient, at Kennedy Krieger. He went to, it was called a specialized transition program and again, this was run by a physiatrist but it was an inpatient program but it was in an outpatient setting. So he went on a daily basis and it was kind of kickstarting him back into kind of his real world. He recently had surgery and had burnt out from physical therapy and stuff prior to the surgery and needed to strengthen, and had been homeschooled because of the surgery.
Jen Lyman (17:07): So we went to this program and went in on a daily basis and he had all of his therapies there as well as a little bit of school, and it kind of kickstarted his world and transitioned him really well back into full-time back at school, and I thought that was a really cool setting that physiatrists worked in.
Wendy Pierce (17:34): Yes.
Jen Lyman (17:34): And I was also curious, at Colorado Children's, do you guys have any specialized programs that might be different or fun that you could tell us about?
Wendy Pierce (17:46): So I think what makes us unique is actually our adaptive sports program. We also do have lots of... and other parts of the country also have this too, just different types of intensive programs. We have hippotherapy. We offer hippotherapy as well through our hospital. And I would like to highlight our adaptive sports program partly because it was one of the reasons why my husband and I, who volunteered for it, have come back to Colorado. So the ski program at Children's actually was started in the 1960s where they had paired children with a VA amputee actually, and that was the kickstart of the program. So now it's evolved to both having summer programs and the popular winter program.
Wendy Pierce (18:43): And my story behind it, so I was starting training a fellowship and I didn't know how to ski. I'd actually never been to a ski resort before but I was like, I want to do this. I want to contribute somehow, and they said, "You could be a bus staff," and I'm like, I will do that because I cannot teach. And it was great. The first time... people knew on the bus that I was there it was the first time I'd ever been to a ski resort ever in my life. So arriving there with all the kids, it was interesting because the kids are all familiar with it. There were some kids who were there for the first time, but a lot of people who were there before. But it was the first time I'd seen anyone live skiing down a hill and they were like, really? Where have you been? Well, I grew up in California, so I didn't have that many opportunities.
Wendy Pierce (19:31): So I just found it wonderful and inspirational, and I always just impart on the fact that these kids have these skill sets and their winter sport capabilities, sliding down a hill, still continue to be better than mine and I always just humble myself and remember that. But it is a fantastic program, and part of that now also are a couple of camps that are also running through that. And our sports program is actually run by a rec therapist, so I wanted to put a shout out for recreational therapists out there.
Jen Lyman (20:11): Super cool. Super cool. Where is the program? Is it... what ski resort is it?
Wendy Pierce (20:17): So the program is at Winter Park, and what's unique about the children's program is... you can tell I talk about this a lot because I just love it. It actually involves five sessions. So they actually are watching kids progress, and at the start of the session they actually start with goals just like good rehab goals, and the goals can vary. It doesn't always have to be ski skills. Some kids decided that I want to meet a friend on a bus, so actually, the kids go up there on their own and just like the concept of rec therapy, promoting independence and social integration and so some of the kids' goals might just be social goals rather than just the skills of getting on a ski bike or sit skiing or being able to get off a lift or whatever. So I could talk about it for hours. Sorry.
Jen Lyman (21:07): I know. Well, I'm sitting here thinking we need to do a whole other podcast just on this program. I'm really... I am curious, is this program open to kids from anywhere? Could I go out to Winter Park and sign Bower up to go skiing out there?
Wendy Pierce (21:24): So this particular program is in partnership with the National Sports Center for the Disabled actually, so NSCD, which is based in Winter Park. This program is part of children's in particular, so there's different routes if you're from out of state. Most of the time, I think for the Children's program, they probably are prioritizing local patients, but I think that they would be open if you were interested. And then otherwise though, another route would be through NSCD, and the difference is, I would say it's almost like any typical person. You would be walking in for a ski instruction without knowing how to ski and they have volunteers there ready and trained. So I think there's different goals as far as whether you're going through Children's or directly through NSCD.
Jen Lyman (22:23): Yeah, it seems like the goals from Children's are more specific to rehabilitation, socialization, that kind of thing, whereas if you're going through NSCD, you are walking in off the street. It's not going to be as goal-oriented perhaps. It might be more about just making sure that you have fun and you learn to ski.
Wendy Pierce (22:40): And it probably depends on the frequency of you going there. So here we're going to see this progress versus if you go to NSCD and you're going multiple times, then you'll also see some of that as well.
Jen Lyman (22:54): Yeah. Well, we might have to sign up one of these days.
Wendy Pierce (22:57): That would be really fun.
Jen Lyman (22:58): I'm missing my skiing for sure. COVID has definitely put a damper on some of our trips this year.
Jen Lyman (23:06): Well, why don't we dig into one of the things that I think is super cool that you guys do. Basically, really just want to talk about what kind of treatments physiatrists provide.
Wendy Pierce (23:18): All right. So usually, kind of how my thought process goes, so oftentimes we'll see a patient and sometimes we'll be prescribing and initiating therapy services. We also are involved with treatments or splinting as well, so prescribing orthotics and then equipment. So we're very familiar with the needs and the insurance requirements related to adaptive equipment. We talked about that, all the fun things about adaptive equipment before. In addition to that also, is spasticity management, and that includes managing intrathecal baclofen pumps, using tools such as... the various different types of botulinum toxins that are there, alcohol or phenol blocks, oral medications. Sometimes too we are looking for the underlying cause of the hypertonicity. Sometimes it might just be constipation. So you might be like we're just going to prescribe stuff for constipation first and see how that treats the tone. So we provide that big picture experience of different potential treat... or I guess various treatment plans for folks with cerebral palsy specifically.
Jen Lyman (24:49): So I am curious about the differences between phenol and botulinum toxins. I do hear... physiatrists are probably the only... you all seem to be the only group that I ever talk about phenol with, so it seems like something that is a type of treatment that is unique to physiatrists and you all have fellowship training using phenol versus botulinum toxin. They both sort of do similar things, but they work in a very different way, so could you help explain that a little bit?
Wendy Pierce (25:28): Not a problem. So phenol and alcohol, they both work similarly. So some institutions may choose to use alcohol as a similar agent. It is a nerve block, so different from botulinum toxin, that's very specific to a receptor at the end of a nerve, phenol is a little bit less specific, and how it works is it actually... the term is denature protein. So basically reduces the signal that a nerve is sending to a muscle to reduce the impact of spasticity in a patient. The difference between the two is that phenol you tend to have to be much more specific as far as where you put it, because we do use a nerve stimulator to make sure that we're placing it in the right place. The phenol is also much cheaper than botulinum toxin, but again, it's less specific, and here in the US, we have the luxury of botulinum toxin. So there are other parts of the world where actually phenol and alcohol may be their primary form of focal spasticity management.
Wendy Pierce (26:36): The reason why we here in the US use phenol for certain muscle groups is because we're targeting nerves, what we try to do is isolate nerves that are directly going to muscle. So if we have a nerve that actually also has a sensory component, so it's going to skin, there is always a risk of then causing nerve pain, so that's why we specifically tend to use it for reducing tone in adductors or the hamstrings, for example, because those are isolated motor nerves versus a nerve that actually has a motor and sensory component. And you see it a lot more in pediatrics. Sometimes you will see an adult because we are limited in dosing of botulinum toxin, so that's sometimes why your physician may suggest adding phenol or alcohol, especially in younger folks where you just don't have enough Botox to go around, that is a frequent reason why your doctor may suggest adding that. I've also used it occasionally in the adult world too, again, for the same reason. We might not just... we are using a lot more Botox in this one area, and so then because of how much Botox we can use even in the adult setting, sometimes we'll switch over to phenol too.
Wendy Pierce (28:03): Couple of other things that work differently. For Botox, there tends to be a ramp-up period when you're using it versus in phenol you should be seeing the effects pretty much within, or start to see the effects pretty much within a couple days versus that waiting and that ramp-up period with Botox.
Jen Lyman (28:21): So with phenol, does it last longer than Botox?
Wendy Pierce (28:25): I think it depends. It can last longer than Botox. How it wears off, and this is a podcast, so you can't see my air quotes, is just that even though it's blocking a pathway of nerve, since we're not really damaging the actual nerve cell body, that wire then finds ways to work around the block, so that's when we see the effects wear off.
Jen Lyman (29:00): I see. So it creates a new pathway for itself. And can you... you may have said this or if you can maybe say it different way. Can they be used at the same time, a botulinum toxin and a phenol?
Wendy Pierce (29:14): Absolutely. They can be used at the same time, and sometimes, depending on how bad the done is, sometimes it can actually be used to target the same muscle group. Every once in a while your physician may choose to do that as well.
Jen Lyman (29:26): Interesting. Interesting. So can we talk a little bit about pain management and physiatry and pain management because that's another area that it seems like you all are taking over in a good way that I'm excited about.
Wendy Pierce (29:42): So yes. Pain is a very hot topic, and I think the challenge is always it's under reported in CP because there are kids who can't talk for themselves and so we... and you might have experienced this, Jen, where there's something acutely different about your child and it takes a while to try to go through the entire list of reasons why. And yes, physiatry is very integrated with treatment of pain and one aspect that we look at is just the physical aspect in regards to seating and positioning. So some of the basic things that we can potentially alter with probably fewer side effects, and then also medication too. We think that contractures and high muscle tone may cause discomfort, so that's an area that we address as well as just taking a step back and looking at the broad system of potential etiologies for pain in CP.
Wendy Pierce (30:55): And we see it a lot also in the adult world, and I'm sure I can hear a bunch of people out there saying hallelujah to that, and it is so challenging. Sometimes too, it may not be muscular either, and that's also somewhat... that's so challenging to try to both figure out and treat effectively.
Jen Lyman (31:21): So with CP, because kids grow up to be adults and as a physiatrist seeing children transition to adulthood, are you seeing that pain can get worse over time with your CP patients as they get older?
Wendy Pierce (31:38): I think it can, and again, some of it is looking back to see the reasons for it. There's the aspect of aging, so all of us are getting older and tighter and losing muscle mass, and so that can contribute to pain. I see kids also with, at least to the best of our ability, we think it's something related to the GI system or the bladder. So we've had patients that have had chronic bladder spasms or chronic constipation, really probably related to more a true motility issue. So sometimes that can also cause quite a bit of discomfort, and I feel like I see that a lot more so in kids who are older versus younger.
Jen Lyman (32:26): Yeah. Yeah. I know with Bower, one of the issues that we still haven't been able to figure out, and it's hard because it's been chronic and ongoing, is leg spasms. These crazy leg spasms that he has in the middle of the night that wake him up and it's incredibly painful and it's like getting a charlie horse or something.
Wendy Pierce (32:52): Yes.
Jen Lyman (32:53): We've looked at constipation. We've looked at hydration, just making sure that he's got enough to drink and we've tried various medications, baclofen and neurontin and Valium, even a baclofen pump, and these are all things that have been managed by a physiatrist. It's definitely been a challenge. It's just heartbreaking too because you can feel it. I physically can feel it. I can go in and his legs are rock solid and it's just give him a little massage and it goes away, but it's definitely been one of his pain challenges for sure.
Wendy Pierce (33:25): Yeah, and I think it's hard because sometimes it doesn't go... we have a patient where he comes in regularly for Botox and you can just... same thing, you can see that rock right there. The mom's like right there. Put the needle right there. Okay.
Jen Lyman (33:37): Exactly. I know. So yeah, we're trying. I bring up the phenol because that's one of our next routes to see if maybe that will help with these leg spasms that he has, and I hope it does.
Wendy Pierce (33:54): Me too.
Jen Lyman (33:56): Whatever we can do to help him out, and for all the CP patients that you have, it's certainly... just watching it with my own child, and I can only imagine what it's like to see hundreds and hundreds and hundreds of kids all having different forms of pain and presentations of their spasticity or their dystonia and you definitely have your work cut out for you for sure.
Jen Lyman (34:28): Well, where... we're kind of coming to the end of the podcast, and I'm curious where you would recommend somebody find a physiatrist, if they're looking. I, again, highly recommend finding a physiatrist if you can to manage your care, manage the team, and for my adult friends with cerebral palsy, I think that physiatrists are absolutely the way to go. They're great at just communicating with everybody and looking at the whole picture from equipment to what therapies you're going to need and even things like just practical resources like transportation resources and community re-entry resources. Just me plugging physiatrists.
Wendy Pierce (35:17): Appreciate it.
Jen Lyman (35:18): I will plug you guys, but for those folks that are listening that have never... now know about physiatry, where would you recommend they go to find a physiatrist?
Wendy Pierce (35:28): A couple places. I would start with the AAPM&R website, so that's American Academy of Physical Medicine and Rehabilitation. So that is our professional society of physiatrists and so that is a great place to look. In the pediatric world, you can always go to the American Academy of Cerebral Palsy and Developmental Medicine as well. So they have a great site for finding a provider, and I believe there's also a link through the CP Foundation as well, which I think links to the American Academy of Cerebral Palsy and Developmental Medicine website. So those are some great places to start.
Jen Lyman (36:13): Awesome. And I will make sure that I put those in the show notes, so if somebody's reading this show, they can also click directly to it through here.
Jen Lyman (36:25): So Wendy, so close things out, I'm curious, with all of your experience with cerebral palsy, what do you think is going to have the biggest impact for individuals with cerebral palsy in the future?
Wendy Pierce (36:37): Oh, that's a great question. I think that... I guess two things. As I'm thinking through the lifespan, so from the beginning piece is actually now all the work on the genetic causes of cerebral palsy.
Jen Lyman (36:56): Absolutely. Yeah.
Wendy Pierce (36:57): And I think that there are so many potential exciting treatments now and getting a better understanding. I'm sure there are folks who are listening right now where your child may have cerebral palsy and no one knows why. So I think that the genetic piece is going to provide a lot for the future. And on the other end, like you were mentioning, Jen, is just different avenues for pain management and looking more into that. I think from a quality of life standpoint, I think that addressing and being able to look for and really thinking about it and recognizing that pain is major issue in cerebral palsy. I think the fact that there's an increased awareness among practitioners I think also will create a big impact for folks specifically as they're living with cerebral palsy.
Jen Lyman (37:51): Yeah, I'm with you on both of those, and it is very exciting to see the genetics research and information coming out right now. And definitely on the pain front as well, just on a personal note, that's definitely something that's always at the forefront of my mind for my son, and I'm sure that the other parents out there listening feel the same way. So thank you for what you do. Thank you for pain management and for thinking about these things and helping our kids out. It's an amazing endeavor and I also want to thank you for participating and advocating for the ski program and the camps because those are so cool and fun and that's what really improves the quality of life for our kids. I also think those kinds of programs, they highlight how much our kids, and individuals with disabilities in general, are able to participate and be part of things and the more we can get people out there doing cool things like this, I think it's just going to create a more inclusive society. It's awesome that Colorado Children's has this program and that you're a big part of it and Aaron's a big part of it.
Jen Lyman (39:04): Thank you and I hope some day the girls will be a part of it. I bet they already are. They're probably carrying their own little skis now.
Wendy Pierce (39:13): A little bit. And they like helping and they come on the ski bus with us too.
Jen Lyman (39:17): That's so cute.
Wendy Pierce (39:18): Yes. It is fun.
Jen Lyman (39:20): Super cool. Well, hopefully I will get out there and we will see you on the slopes in Winter Park one of these days, and hopefully some of the families listening to this podcast will take my hint and get out there too.
Jen Lyman (39:33): Wendy, I want to thank you. I really loved having you on the podcast today and thank you for everything you do. It's definitely been a pleasure. And then I would like to thank my producer, Greg Tilton, who makes everybody sound a little smarter and a whole lot better. Thank you and thank you for listening to Cerebral Palsy Health. I'm your host, Jen Lyman. Until next time, have a wonderful day. Thank you.
Jen Lyman (40:04): 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 podcasts and follow me on Twitter and Instagram. You'll find the links in the show's description. Please feel free to email me with comments, questions and topics you'd like to learn more about at jblyman@mac, that's M-A-C, .com.
Jen Lyman (40:24): 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 does 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 and/or any other medical concerns with their personal medical team.
I do get inspired by families and patients because they are on an uphill battle in society, and so I just really enjoy watching that journey as people are working through new disabilities or disabilities that they've had for years.