Cerebral Palsy Health by Jennifer Lyman

Cerebral Palsy Health by Jennifer Lyman

About this podcast
Photo of Jennifer Lyman and her son with the copy Cerebral Palsy Health by Jennifer Lyman across to the top of the image

Cerebral Palsy is a complex health condition that impacts each individual differently. As a result, finding information about what might help improve function, increase participation, and achieve health and lifestyle goals can be difficult. This podcast is a place for conversations with experts about issues related to cerebral palsy that affect health, fitness, function and participation. We will cover a range of topics including: treatments and therapies, nutrition, neuroplasticity, genetics, exercise and fitness, adaptive sports, accessibility, and new trends.

Episode 5- Wendy Pierce, MD: What Does a Physiatrist Do Anyway?

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.

Resources Discussed: 

Where to find a physiatrist: 

Where to find CP specific providers 

National Sport Center For the Disabled

TRANSCRIPT:

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.

Episode 4- Iona Novak, PhD and Madison Paton, PhD: What's the Deal with Stem Cells Anyway?

ABOUT THIS EPISODE

On this episode I talk with two of the world’s leading researchers… Dr. Madison Paton and Dr. Iona Novak on stem cell treatment for cerebral palsy. Stem Cells have been a hot topic in Cerebral Palsy for at least 15 years now, with many parents and researchers hoping that at the least, stem cells will lessen the impact of CP and at most hold the key to a cure. Dr. Paton and Dr. Novak will share their insider knowledge into this subject and help us sort through the hype and so we can hold onto our hope.

We discuss the various types of stem cells and how they might benefit those with CP.  We also discuss current research, Jen's experience with her son's stem cell trial, how to learn about other stem cell trials and where to find resources.  We also talk about stem cell tourism and issues to be aware of with these operations. 

Professor Iona Novak is the Head of Research for the Cerebral Palsy Alliance Research Institute, located at the Brain Mind Centre, in the University of Sydney (in Australia). Iona is a Fulbright Scholar, and has won the Western Sydney University Chancellor's Award for Alumni of the Year and The University of Sydney Award for Professional Achievement. She co-founded the Cerebral Palsy Alliance Research Institute for the purpose of: prevention, cure and treatment of cerebral palsy. Driven by an internal belief that healthcare truly has the potential to change lives, Iona has pursued projects and roles that will have the greatest possible impact on children and families in today’s and tomorrow’s world. She is passionate about evidence-based practice; knowledge translation, neuroplasticity; stem cells and neuroregenerative clinical trials. Iona leads a collaborative research team that is currently conducting the world’s largest ever, cerebral palsy early intervention trial, exploring whether harnessing neuroplasticity can reduce the severity of disability.

Dr Madison Paton is a Research Fellow at the Cerebral Palsy Alliance Research Institute. She received her PhD in 2018 investigating stem cell therapies to protect the developing brain. She has been working in the field of cell therapies and cerebral palsy for more than 7 years and has transitioned from working in the lab, to helping develop clinical trials that drive the research pipeline. Madison’s early work focussed on stem cells collected from the placenta and how we can best protect from brain injury occurring during pregnancy or around the time of birth. She now is interested in applying these therapies to treat babies and children with a risk of brain injury or cerebral palsy. Dr Paton is passionate about science communication, engaging with consumers, and sharing the best available evidence on stem cells.

Show Resources:

Episode 3- Amy Bailes, PhD, PT, PCS: ABC's of CP

ABOUT THIS EPISODE

On this episode with Dr. Amy Bailes, we discuss the Gross Motor Functional Classification System (the GMFCS), the Gross Motor Functional Measure (the GMFM), and the corresponding motor curves. The GMFCS is an important classification system that is relatively easy to understand and it helps create a shared language and framework for understanding a person with CP’s physical function. This can be very helpful for patients, families and providers of all sorts, especially as it relates to both and acceptance and understanding of the diagnosis  and family-centered shared decision making.

Dr. Bailes PT, PhD, PCS is a physical therapist at Cincinnati Children’s Hospital and an Assistant Professor in the Department of Rehabilitation Sciences at the University of Cincinnati. Dr. Bailes has more than 30 years of pediatric clinical experience and has been recognized by the APTA as a Pediatric Clinical Specialist since 1993. She began her career at Boston Children’s Hospital, moved to Los Angeles and worked at Children’s Hospital Los Angeles and has been at Cincinnati Children’s for 25 years. Her clinical practice focuses primarily on the care of children with cerebral palsy (CP) and other neurodevelopmental disorders. She also serves on the executive leadership committee of the Cerebral Palsy Research Network. With doctoral training in clinical epidemiology, her area of research focus includes health services and quality improvement with a particular emphasis on physical therapy intervention for individuals with CP.

Resources discussed on the episode: 

Episode 2- Mary Gannotti, PhD, PT: Fitness, Health and Function for across the lifespan for individuals with cerebral palsy

ABOUT THIS EPISODE

In this episode, Mary Gannotti, PhD, PT, discusses fitness, health and function across the lifespan for individuals with cerebral palsy.

Mary is a physical therapist and medical anthropologist whose personal life experiences and her professional experiences help shape her research in disability, especially cerebral palsy. She specifically looks at how personal and environmental characteristics impact disability status and treatment effectiveness. 

We discuss fitness and health recommendations for individuals with cerebral palsy including bone health, prevention, and primary care to prevent declines in function with age. Mary provides evidence based solutions to help those with cerebral palsy age in healthy way.

In addition, Mary discusses current patient driven research initiatives through MYCP (an initiative of CPRN) and arms listeners with her latest chapter in Freeman Miller's (soon to be published) book, Cerebral Palsy: A Complete Guide to Caregiving,  in which she and David Frumberg, MD provide an in depth look at the state of therapy services for adults with cerebral palsy and offer recommendations to optimize health and well being across the life span. 

TRANSCRIPT:

Jen Lyman (00:06): 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 Lyman (00:44): Welcome to Cerebral Palsy Health, conversations that count with experts who care. Today, we're talking about fitness, health and function across the lifespan but especially for adults with cerebral palsy with Dr. Mary Ganotti. This is an important topic as we're seeing declines in the functional abilities amongst adults with CP that are more significant than those of the general population.

Jen Lyman (01:03): Mary is leading the pack in research in this field and has evidence-based solutions to help those with CP age in a healthy way. Mary is a physical therapist and medical anthropologist who studies the experiences of people with disabilities and how personal and environmental characteristics impact disability status and treatment effectiveness. She's been Mary Switzer fellow for the National Institute of Disability Independent Living and Rehabilitation Research and a research fellow at Yale University School of Medicine.

Jen Lyman (01:30): She has published ethnographies, instrument validation, outcome studies, health services, research and perspectives primarily focused on clinical care and cerebral palsy. She's an editorial board of The Physical Therapy Journal and The Pediatric Physical Therapy Journal. Currently, she's a professor in the Department of Rehabilitation Sciences at the University of Hartford and a member of the scientific staff at the Shriners Hospital for Children. Her recent work focuses on the experiences and long term outcomes of adults with cerebral palsy and how that can inform current practice for children with cerebral palsy.

Jen Lyman (02:03): Welcome, Mary. I've been a huge fan of yours for a long time now. I appreciate your research because of its biopsychosocial approach. And you look at the whole person and I think a lot of physical therapy research becomes so clinical that it neglects to look at everything about the human that you're studying. That's what I love about you. That's what I love about your research. Welcome.

Mary Ganotti (02:22): Thank you so much for inviting me. I'm so excited. I've always wanted to have the opportunity to talk to people that want to hear this information, families and adults with cerebral palsy. Thank you.

Jen Lyman (02:38): Awesome. Well, I'm going to start out with a personal question. Why on earth did you get into this field and choose to do research for people with cerebral palsy?

Mary Ganotti (02:47): Oh, my goodness. I don't know if I had a choice. My family history is that my grandfather worked for the Harkness family in Connecticut. And they were a wealthy family at the turn of the century and their daughter had polio. Their mansion was completely wheelchair accessible and it was really unique at the time. What happened was my father poked his eye out and they paid for his surgery and sent my uncle to art school. And when the Harknesses passed away, their estate became a beach and a regional center for people with physical and mental disabilities.

Mary Ganotti (03:34): It was part of our family heritage. And then when I moved back here from California in the mid to late '70s, my teacher, her husband was the president. My father made the first inclusive school. It was just something that was part of my life all the way through.

Jen Lyman (03:53): Wow, it's in your genes. I love this. This is really awesome. So you grew up amongst people with disabilities?

Mary Ganotti (04:00): Yeah, yeah. And then in high school, I was always a Special Olympics coach, and in the summer, I was a swim captain for the camp for people with disabilities at the beach. And then my first job, I did a job where we did institutionalized 490 kids who had never lived in the community ages five to 21 in Oklahoma that was severe and complex disabilities.

Mary Ganotti (04:34): I have people in my family with complex disabilities. It was just always part of the passion to try and get people with disabilities more integrated into society and to have healthy long lives.

Jen Lyman (04:49): I really appreciate what you do because of how you humanize. It's the individual first, the disability second.

Mary Ganotti (04:55): Definitely.

Jen Lyman (04:55): Yeah. When I'm reading your work, I don't feel like you're trying to cure somebody or take away the disability, you're trying to enhance their quality of life and participation. And as a recreation therapist, that's obviously one of my passions. I've learned so much from you over the years, and I'm thrilled that you're on this podcast with me today. I think this is a very important topic because most people with cerebral palsy and we think of it as a childhood disability, but most people with CP grow up to be adults with CP. I think 75% of the population of people with CP are adults.

Mary Ganotti (05:30): 85%.

Jen Lyman (05:31): 85%. Okay.

Mary Ganotti (05:33): Yes. There's 11 million people alive today in the United States that have CP and 85% of that 11 million, so that's what? About 9 million people? Nine of those 11 are over the age of 18.

Jen Lyman (05:51): All right. And as far as... I read somewhere, that life expectancy for people with cerebral palsy is similar to their peers. It's that of the general population. We're not looking at... People are aging with CP and their aging to be the same ages.

Mary Ganotti (06:07): Yeah, in a Medicare sample, a nationally representative sample of adults over the age of 65 with and without CP, we actually found a higher percentage of adults with CP over the age of 90 than those without... It's not a true population sample but it was just sort of curious, funny.

Jen Lyman (06:33): Wow. Interesting. I guess you know my son, Bauer and he's 15 now. As he's getting older, I'm trying to do everything I can to optimize his health and his... I'm not so much thinking about function anymore as I'm thinking about his fitness and him being able to take care of his cardiovascular health and his muscular health, his bone health. I think as we talk today on the podcast, I know that you wanted to talk about power training and you want to talk a little bit about cardio and how adults with cerebral palsy-

Mary Ganotti (07:13): And bone health.

Jen Lyman (07:14): And bone health. Yep. Now, I've got a great story about that with Bower. We can get to that later, if you get there. Do you want to start out a little bit with power training and talk about your experiences with power training? I guess I'd like to know what it is. I really have no idea what power training is.

Mary Ganotti (07:33): Well, power training is essentially a different form of training your muscle. You have strengthening, but power training is really training how quickly you can generate a certain amount of force. So it would be how quick you could punch hard, how quick you could push your leg out straight, how quickly you could move something, one of your limbs or maybe even your trunk, but usually your limbs. And then control that movement back to the starting position which is a high level form of control, motor control, which is something that's not often obtained or strived for in cerebral palsy because we oftentimes don't have isolated voluntary movement where we can move one joint at a time. That's what that means.

Mary Ganotti (08:33): Where exercise purists would like to see you be able to really control one joint at a time before you go for powerful thrustful movements. But if you don't mind, Jen, I would just like to step back for a minute when you said that right now what you're concerned about for Bauer is his fun and fitness or his... His fitness and... Is that what you said? Participation, right?

Jen Lyman (09:04): Yeah, I'm looking at his fitness over function I guess is what I'm-

Mary Ganotti (09:09): His fitness over function.

Jen Lyman (09:10): Yeah.

Mary Ganotti (09:12): I want to step back to that. Now you say that he's 15.

Jen Lyman (09:19): Mm-hmm (affirmative).

Mary Ganotti (09:19): Now, I want to say that just like all children and you know this because you're a health professional, for all children, health begins prenatally. When moms prepare themselves to get pregnant, their weight matters, their fitness matters, their bone health matters, their folic acid matters, their mental health matters and that impacts any child and then when the baby is in the womb, that impacts the skeleton and the muscle. And then if the baby is born premature.

Mary Ganotti (10:04): So I want to challenge everyone in a time where we had a huge paradigm shift to function which I love, but I think it should really be participation and quality of life. But we need to know that participation and quality of life really hinge on health. Health begins with the mother and the prenatal environment and then what happens afterwards. We know that for muscle, bone and brain, there's critical periods in utero and if the child is born prematurely, given the gestational age, throughout that first year of development, there's critical periods for motor unit development, sarcomere development, if we're talking about muscles, the differentiation of muscle fibers and the myelination of pathways from the brain to the muscle and also how the bone is formed.

Mary Ganotti (11:17): We're talking about a bone-brain relationship that these structural features are formed in infancy throughout adolescence just like they are in typical children. But the system is challenged because we don't have the same mechanical strains that we do with typical children, getting up and walking. There's also some different physiological processes that have yet to be identified.

Mary Ganotti (11:51): But the point is, we need to be alerting families with newborn premature infants, with pre-pubescent children about the importance of exercise that stimulates brain growth, bone growth and muscle growth. And not wait till they're 15. And this is a shift because families are so focused on what can I do to minimize the disability, right?

Jen Lyman (12:27): You hit on a philosophy of mine and it is this fitness, its health over function. I'm not trying to minimize my son's disability but I am doing everything humanly possible to ensure that he's exercising and he's... He trains. He has a personal trainer, that he goes two or three days a week, he rides his tricycle, he goes swimming. I can provide these opportunities to him and I know a lot of families can't, and they rely on going to the physical therapist. I think physical therapists, your job is to focus on function.

Jen Lyman (13:06): So there's sort of a paradigm shift that I think physical therapists need to look at too, which is we need physical therapists to be looking at how can we take your work, your important work, and translate it to exercise and fitness and community based things that families who can't necessarily hire a personal trainer.

Mary Ganotti (13:30): I'm so glad that you say that because there's some things are a lot easier than you think. Although they're very, very challenging for a child with mobility impairments. Just by 10 minutes of cardiovascular exercise, you can reduce your overall risk by up to 15 to 20%.

Jen Lyman (13:54): Your overall risk of what?

Mary Ganotti (13:56): Cardiovascular disease. Just by 10 minutes of targeted bone stimulation, you can improve your skeleton.

Jen Lyman (14:08): When you say targeted bone stimulation, what is that?

Mary Ganotti (14:13): That would be for children that are in a wheelchair, seated, punching a heavy bag or throwing a medicine ball. Children that are seated in a wheelchair or able to walk using a leg press and doing on a stationary bike, 30 seconds quick, quick, quick, quick, relax. On a treadmill, quick, quick, quick, relax. If they can only do five seconds, build it up. 10 minutes of that. Short burst HIIT, high intensity training, this short burst high intensity training of 10 minutes.

Mary Ganotti (14:58): Nine minutes on a vibration pad three times a week. So I think there's some things that we can bring home to families. Not that... Believe me, my son does not have physical impairments, he has high functioning autism. "Ask me to do one more thing, I'm going to jump off a cliff."

Jen Lyman (15:19): I can see that. And it is, I've got a lot of things on my plate when it comes to all the expectations of the different disciplines, I guess you'd say that work with my son. What we've tried to do is incorporate everything into throughout the day. We don't stop necessarily and do... Okay, we're going to do 10 minutes of speech right now. We pretty much have everybody doing everything as kind of the natural daily routine and the natural environment, rather than trying to...

Jen Lyman (15:57): Because he'll clam up and not want to do it if we just say, "Okay, well, this is going to be your time that you have to just do your hand therapy." Or, "This is your time that you have to do your speech therapy." He doesn't like that at all.

Mary Ganotti (16:09): It's very demeaning. It's very demeaning. And then as my daughter with dyslexia says, "I looked it up, it's a brain disorder, you can't fix it." And so at a certain point, you need to send messages to the individual that you're a perfectly fine human being but you still need to do this stuff.

Jen Lyman (16:32): Right. We all have to. Right. We all have to work out. It's important. We've got regulations that the government says we shouldn't be working out 30 minutes a day.

Mary Ganotti (16:42): Yes. But if you could only do 10 minutes, for whatever reason, then that's okay. I think that physical therapists are becoming aware of this because we've been talking about it since 2014 with appropriate dosing, and appropriate dosing of physical activity across the lifespan for it to be targeted and for children with disabilities where time and effort is so high stakes and the importance of engaging in successful activities is so high stakes for mental health.

Mary Ganotti (17:29): If you ask your child to do something they can't do repeatedly, they're going to hate you. Really working critically to look at the evidence to say, what are the activities that are going to build some new motor learning pathways that are going to really build bone and the spine and the long bones to prevent fractures. What are the exercises that are going to improve, that are power training, that are going to improve the rate of force development, that's going to translate to functional changes?

Mary Ganotti (18:14): Because what happens in adulthood is oftentimes, it's a cascade of events that we all see with aging. But it happens much earlier because children with mobility impairments don't have the time to build robust bones and muscles and central nervous systems to combat just the decline of aging.

Jen Lyman (18:42): I guess to on that topic, with Bower, we have done everything. He stands in the standard, he uses his gait trainer. And despite all of that, when we've done a dexa scan, he still comes back as low.

Mary Ganotti (18:58): Of course. If you did a dexa scan, why don't you do a dexa scan? And why don't you see where you come out? Because 60% of bone mineral density is genetic.

Jen Lyman (19:10): Interesting.

Mary Ganotti (19:13): You're a very small lady. I would gander and your husband is not very big either of stature, that between the two of you, you probably have low bone mineral density in your cohort.

Jen Lyman (19:29): Interesting.

Mary Ganotti (19:31): But what you want with Bower is for him not to change his status. So he's 15. That means that he has had the most linear growth in his spine that he's going to have. That means that really his dexa should be as low as it's going to be because the way they calculate dexa is because of the linear growth and the overall volume. We would just want Bauer now from age 15 to 21, to 25 to maintain.

Mary Ganotti (20:09): And as long as he can keep his weight stable, I think that the biggest predictor of bone mineral density is weight. You're a very slight woman. So he has a Noelle's bone, I'm talking about another colleague of ours, Dr. Moreau, who... There's a lot of issues where you would have low bone mineral density, but what you want in adolescence, that is his best. We want to keep that now.

Jen Lyman (20:40): So we were looking at it and when we got the bone dexa scan back, the endocrinologist looked at it, spoke with a physician at [CHOP 00:20:54], and came back and said, actually he's okay. It's low. But his numbers come back in a way that is better than expected. So she's like we don't do anything. We don't do any preventative infusions.

Mary Ganotti (21:10): But his calcium is normal?

Jen Lyman (21:13): Yep.

Mary Ganotti (21:14): His testosterone is normal?

Jen Lyman (21:17): Yep.

Mary Ganotti (21:18): His FSH, his thyroid is normal?

Jen Lyman (21:22): Correct.

Mary Ganotti (21:24): You maintain his nutrition and his activity. And the research that's emerging has shown that adults with CP will maintain that. It's emerging, but that's what we're seeing. Continue that, because he still has time. For two years after his maximal height, he has two years still to accrue bone and this will last a lifetime. And that's why I'm really passionate about focusing on bone. Because what I see with adults with CP that becomes unmanageable are the issues related to collapsing spines.

Jen Lyman (22:13): So we're going to talk a little bit about that. We've skipped over a whole bunch of topics. But we were going to talk about the collapsing spines. I know you wanted to talk about stenosis and kind of what happens and what adults with CP should be looking out for. And perhaps what they should be talking to their physical therapists about. Can you explain it to us first?

Mary Ganotti (22:40): So one of the things that adults with CP complain about and unfortunately, even for the most mildly impaired adults with CP, that means those that walk was slight limps, we see this really, about age 27. By the third decade, there is an increased report of changes in the ability to ambulate, transfer and do the things that you used to do.

Mary Ganotti (23:14): Now, there are multiple reasons why this could happen. Could be strength issues and need for power training. It could be cardiovascular issues and need for general increased physical activity. We see a high report of autoimmune diseases in our national data sets, insurance datasets, along with other groups, Mark Peterson at Hurvitz Group. We see the autoimmune diseases and some mental illnesses, really high rates of psychosis which may impede participation and function.

Mary Ganotti (23:59): One thing that needs to be alerted to is spinal stenosis. What that is, is we just talked a little bit about low bone mineral density. And something that happens in really, really old adults and Americans is that when you age, your vertebrae collapse. And when your vertebrae collapse, the nerves get pinched. The spinal cord and the nerves. The other thing is for some people that may flop their head around a lot, the spinal cord is soft inside of a hard casing.

Mary Ganotti (24:45): After a while, the spinal cord gets a little tired of that and so does the bones. There are some inflammations and arthritic changes that happen in the bones and in the nerves. What the physicians can do is they can do an operation and they can relieve the pressure of the bones on the nerves and they can preserve the integrity of the spinal cord. What you need to do is if you feel like you're getting weaker, you need to ask your doctor to rule out any damage to your spinal cord.

Jen Lyman (25:30): So how would you address that with somebody who perhaps can't speak for themselves? And some of our people that are more significantly impacted by cerebral palsy? As they get older and they have poor head control, is that something that their caregivers should be saying, "Hey, maybe we should go to the orthopedic surgeon or to the neurosurgeon and have this checked out." Or should they be discussing it with a physical therapist?

Jen Lyman (25:58): Who would they go to in that situation?

Mary Ganotti (26:01): Okay, so I'm going to take a little step back when you talk about adults with cerebral palsy, with speech difficulties and maybe had control or even if they have intellectual disability. So one or the other. All human beings should go under regular physical examination. Unfortunately, some of the things that I have seen that have led to the passing away of my friends with severe cerebral palsy speech impediments or disabilities is the fact that they were not screened early for cancer.

Mary Ganotti (26:52): All regular examinations that are done with people as prescribed by the American Academy of Physicians should be done with people with cerebral palsy.

Jen Lyman (27:11): So their primary caregiver? I mean their primary physician, I apologize.

Mary Ganotti (27:15): They need to get screened for colon cancer, breast cancer, pap smears and the like. And the assumption that people are not sexually active is an inaccurate and increased risk, I think would exist for the colon cancers because of constipation and other GI motility issues. I think upper GIs and colonoscopies schedule would be modified. But additionally, people should be screened for stenosis.

Mary Ganotti (27:56): The recommendation that came out from the Weinberg Center up through the CP Academy was to start doing at age 50. Well at Yale, they started doing at age 40. But they've been catching cases as early as age 35. I think what needs to happen is that consumers and family caregivers need to be aware. If there's a change in function, they need to take a multi system approach. Look for autoimmune diseases, look for spinal stenosis. What was the-

Jen Lyman (28:32): Cancers.

Mary Ganotti (28:34): Look for cancers. Hydration is an issue.

Jen Lyman (28:39): Cardiovascular health as well.

Mary Ganotti (28:42): Sometimes people have reported side effects to medications. Sometimes medications that you take for your heart might make you feel weaker. Sometimes medications that you take for bone health might give you teeth problems. These are things that happen in the typical population. It becomes very complicated.

Jen Lyman (29:08): Getting back to adults with CP and ways that they can, in addition to having your primary care physician, do all of these screenings-

Mary Ganotti (29:18): Well, and these are questions that the caregivers and the consumers can just demand.

Jen Lyman (29:26): Right.

Mary Ganotti (29:27): Can I just tell you a very quick story? I have a lot of friends with CP because I've been in this community since I was in second grade. Cheryl, she's about 75 years old, she used to work for the Department of Rehabilitation Services, she's retired and she is a hemiplegic and she did in tensive exercise as a child. She talks about it in the basement with the weights with her father, how horrible he was. But he really, really saved her life.

Mary Ganotti (30:04): She lives independently in this gorgeous retirement home. But because she's hemiplegic, her other hip started hurting her. Of course, she's fractured the Hemi side. So her doctor told her, her orthopedist, "Well, you have CP and this is going to happen. We're going to wait a couple of more years." And she looked at him and she said, "Really?" And you know what she told me she did? "I opened up the phone book and got another doctor and got an operation."

Jen Lyman (30:38): Well, she's relying on the good hip, it's starting to hurt, what does she expect?

Mary Ganotti (30:43): So I would say that sometimes you have to take the license to fire doctor if you don't get what you want. So don't rely on your PCP, don't rely on your orthopedist. Rely on the judgment of doing what's the right thing for the person that you would do for anybody else.

Jen Lyman (31:03): Absolutely. Absolutely. What are your recommendations as far as ways that people with CP, adults with CP can get... What are your exercise recommendations? Is it the same as for the children that you see? Is it, let's do 10 minutes here and there. What are things that they can be doing to-

Mary Ganotti (31:24): Adults with CP have been responsive to all sorts of interventions. As my friends and engineering would say, "Oh, my goodness, they exercised and they got better." So yeah, they did. And although some of the randomized control trials and so forth don't necessarily always show the effect sizes that we want, I think it's pretty well, general knowledge that if you work out and if you work out with somebody, you're going to feel better about yourself, you're going to feel better about your condition, whether you're fat, whether you have MS, whether you have CP. You're just going to feel better about yourself and then you're going to be more active.

Mary Ganotti (32:10): So models that I would recommend, the best case scenario are really, really cool models that they have in Australia, in New Zealand that are pairing college university students with people with disabilities in their local communities. Now, we don't necessarily have things like that in the US. But I think the more that we can move towards people with disabilities being able to just be integrated into regular gems and included in regular activities, it was so fun to be at Keystone this February and see all the adaptive skiing and to see how integrated the adaptive skiing is and the resources available. And that if you wanted to ski, it didn't even matter if you had a ventilator, they were going to get you on the slopes.

Mary Ganotti (33:15): I understand that skiing is a resource intensive activity in terms of financially but trying to get that type of accessibility to the fact that every local gym, every school, every gym class like you said, wouldn't it be great if there was a punching bag and every kid in school could go punch the heavy bag for five minutes a day? Not just Bauer or kick it or jump off of a box or throw a medicine ball. I think that embedded school activities are what we need to push for and more inclusive gyms.

Mary Ganotti (34:01): I think it's a great opportunity for Allied Health students to partner and learn from people with disabilities. I think each local community should reflect on the resources that they have. The nursing programs, the PTOT programs and see how they can harness those students and pair them up with kids that need it.

Jen Lyman (34:24): To me, that's probably one of the easiest things we could be doing.

Mary Ganotti (34:27): Absolutely.

Jen Lyman (34:29): I feel like it's a model that works. Partnering with city recreation departments, they're already handicap accessible. They have to be by law. It would be, to me, such a great partnership to see more cities partner with the allied health colleges and have those physical therapy students working out with people with disabilities. It's a it would be a huge thing. I think it'd be so easy. It'd be great for internships.

Mary Ganotti (34:56): It's great for everything. At the Shriners Hospital for Children in Springfield, we created a program like that, where we call it Be Fit Power Pace training program. And we have seven minutes stations, like I said short bit burst high intensity. Whether it's vibration, running, medicine, ball jumping, whatever the kids are doing. They're paired with pre-med students, OT, PT, health professional, athletic training, rec therapy, athlete. Really wonderful and I think the students get more out of it than the participants. But we're evaluating their participants and they don't have anywhere else to go, because these are kids like Bauer, that are in a wheelchair for most of the day and have to use a gait trainer or a stander and they need the specialized equipment at Shriners.

Mary Ganotti (35:59): So that's another thing that some of the gyms and the community centers don't have what you need to make the exercise accessible. Partnering with hospitals or universities that can purchase appropriate equipment for the population as appropriate and making it available from birth to 99.

Jen Lyman (36:26): I was reading a beautiful chapter of a book that you wrote with Dr. Dave Frumberg, who I think the world of, he's orthopedic surgeon at Yale. And his sister in law has CP as well. So he has that lived experience. I think you probably wrote most of the article there because I recognize your writing. Can you tell me a little bit about the book? Because the chapter is phenomenal. And I think it's such an amazing guide for adults. And I'm hoping that it's going to be published for adults to read or for caregivers of adults to read. I'm fortunate to have it in my hands right now and it's wonderful. So tell me about it.

Mary Ganotti (37:06): So I hope that it's free, available online. Dr. Freeman Miller, who has been involved in the care of children with cerebral palsy for probably five decades, has written... He wrote a book, The First Edition Cerebral Palsy, which is on the care of kids with cerebral palsy, which is now I think it is whatever edition this is.

Jen Lyman (37:31): It was my Bible when Bower was born.

Mary Ganotti (37:34): Yes, it's a very, very good book. Now, it's in I think its third edition, where it's three volumes and there's one whole volume on therapy. I was really honored to write the chapter on the clinical services for adults with CP and what was I supposed to write because there's no clinical services.

Jen Lyman (37:59): Yeah, yeah.

Mary Ganotti (37:59): So we were able to pull together from the literature, validated tests and measures that are appropriate to use for adults with CP to measure changes in function and pain and other appropriate relevant things. And as well as interventions that work. I hope that you could put a link to it and that it would be accessible for consumers to bring to their providers.

Jen Lyman (38:29): Absolutely. It'll be a link in the show notes to this podcast. So it'll be easy for anybody to access from there.

Mary Ganotti (38:37): I think that Jennifer was going to ask me, how do you find PTs that work with adults with CP.

Jen Lyman (38:43): Yes.

Mary Ganotti (38:44): And what I would say to consumers is don't even bother. Look for CPs that are expert in the care of adults with neurological disabilities.

Jen Lyman (39:00): You mean look for PTs? You said CPs.

Mary Ganotti (39:03):

Look for PTs.

Jen Lyman (39:05): PTs. Okay.

Mary Ganotti (39:07): PTs. Sorry. Look for PTs that are expert in the care of adults with neurological disabilities. Adult, that means you're going to go to well, of course the Shirley Ryan Ability Lab is expert already in CP. But you would go to a place where in your community where they see stroke patients and patients with MS.

Jen Lyman (39:36): Okay.

Mary Ganotti (39:36): Okay. And then what you do is you give them the literature. If you need to improve your walking with power training. If you have pain issues, there's pain guidelines for all people. There are specific resources in the chapter to guide community therapists. And if you are skilled in the care of an adult when there are a logical disability, stroke, traumatic brain injury, spinal cord injury, multiple sclerosis, you should be able to apply your knowledge to the adult with CP.

Jen Lyman (40:20): Gotcha.

Mary Ganotti (40:20): I've been very effective in arming people with knowledge to train the therapist.

Jen Lyman (40:29): Awesome. One more thing that I'd like you to mention, could you talk a little bit about My CP and CPRN and this awesome online resource for adults and caregivers to participate in research?

Mary Ganotti (40:44): Yeah. And to also do something that the community is not doing for them. My CP is a forum of clinicians, researchers and consumers, people with CP. What it allows you to do, if you are a caregiver or an individual CP over the age of 14 is enroll your personal information. And given your personal information, we provide you with a menu of surveys that are appropriate for you. What these surveys allow you to do is report on your function, your treatment, your concerns and your issues. And then we can provide you with a printout of these forms that you can share with your providers to guide your care.

Mary Ganotti (41:52): And then on an annual basis, we can ask you these questions again so you can track changes in your child or yourself over time. But additionally, any information that's put in here, we want to disseminate to policymakers and really to consumers to get some action about issues that are not addressed in the community. The issues that are not addressed are interventions for children with severe impairment. We need some interventions to address the communication and the postural needs of these children.

Mary Ganotti (42:39): Interventions that are sustainable and meaningful, that really do something for adulthood. What are we doing to these kids in childhood and what really makes a difference in adulthood? I'm going to tell you, it's going to be things to improve your skeleton and your muscle mass and your cardiovascular status. And then we're also asking really important questions about pain that adults with CP have right now and what interventions work.

Mary Ganotti (43:11): We want to tease out the interplay between opioids, over the counter medicine and exercise and see if we can develop some more effective exercise programs for pain prevention. And see if these people in childhood had certain treatments that maybe didn't have so great outcomes in adulthood. It's a community based effort at this time, grassroots effort. We would just ask people, if you want to participate, if you want your voice heard, if you want to capture your own status, participate.

Jen Lyman (43:51): I think it's very exciting. I'm also going to have a link to My CP on the show notes as well. It's a multi-effort between the nonprofit Cerebral Palsy Now, CP Now, CPRN and the community. It's a very exciting program. I'm a participant and I love the online forum that it provides as a parent.

Jen Lyman (44:16): I get to read the blog posts from other people with CP and the responses from the researchers. It's really cool. So my last question to you, given all you know, Mary, you've been in this world for since second grade, is that what I heard you say? In everything, what do you think is going to have the biggest impact on cerebral palsy? Is it legislation, research, education? What do you think is the future for CP?

Mary Ganotti (44:48): Baby, we've got to do some policy change. I just read the most beautiful study protocol that's coming out of the New Zealand and Australia. If disability is not a medical issue, it's a social issue. We have to reconstruct our social environment to support folks. If we can harness university students, rec centers, hospitals, communities, to provide physical activity programs for all kids, kids from under-resourced homes, kids with behavior problems, kids with physical disabilities, we'd be doing a great thing for society.

Mary Ganotti (45:37): But first, we'll stick with our community. I think what we need to do is we have changed policy. We have to mandate that students have certain amount of hours with on-cap contact, training with people with disabilities. We have to mandate that the ADA is followed and that rec programs in each community are giving what they need and they're inclusive.

Mary Ganotti (46:01): We need to really do that. And it's hard because disability is always the first thing that's cut. Here's all this online schooling, but what about the moms with autism? With the kid that's nonverbal and incontinent and isn't a loper? What about moms like you with the kids in chairs and who's coming to do the program? Kids like Michelle and the social isolation and what that does for a kid who's already autistic or socially isolated anyways because they have a physical mobility? We're always the last to be thought of and it's put on the moms.

Jen Lyman (46:46): Right, right.

Mary Ganotti (46:47): So I think it's a cultural change that's going to happen because the community is large and the voice is growing.

Jen Lyman (46:58): Well, let's aim for it. We'll get to action. It's Mary Ganotti's call to action. Policy change. I love it. I love it. Well, I'm on it. I'm on it.

Mary Ganotti (47:08): Good. You're part of it.

Jen Lyman (47:10): Mary, I just want to thank you for being part of the podcast today. I think the world of you. You're a wealth of knowledge. We could probably go on for another two hours. We probably should stop here. I want to thank my producer Greg Tilton, who is somehow going to make me sound smarter than I am. I don't need Mary to sound any smarter than she already is. But somebody needs to make me sound smarter. Greg, thank you.

Jen Lyman (47:38): We will put this up on the website and I will have resources as well as show notes available. So thank you, Mary.

Mary Ganotti (47:45): Thank you so much for this opportunity. It was such a pleasure. It was so much fun.

Jen Lyman (47:50): Next time, I look forward to having you guys back to listen to Cerebral Palsy Health. I hope you guys found this a conversation that counts with an expert who cares.

Jen Lyman (47:59): 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 the show's description.

Jen Lyman (48:14): 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. 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.

 

Episode 1

ABOUT THIS EPISODE

In this first episode, listeners will meet the host, Jen, learn about her background, her son, Bower, and the reason for creating this podcast. Enjoy!