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.
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.
"We need 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."