VOICE-OVER:
Thank you for watching. And for a full transcript, visit www.fun4thedisabled.com. We hope you enjoy. When joining us for this video, you need to take some precautions as your health and safety are the most important. To avoid any injury or harm, you need to check your health with your doctor before exercising. See a fitness professional to get advice and formulate an exercise prescription for you. The information contained in this video is general advice only. Strategy for Access Foundation NFP, Dr. Shana McCormack and Dr. Kimberly Lin will not be responsible or liable for any injury or harm you sustained as a result of this video.
ABBY LYNCH:
Hi, I’m Abby. And today, we’re going to be discussing why exercise is so important for people with disabilities. Joining me today are two amazing doctors, Dr. Shana McCormack and Dr. Kim Lin. So Dr. McCormack is an attending physician in the Division of Endocrinology and Diabetes at the Children’s Hospital of Philadelphia. She’s also an assistant professor of pediatrics at the Perelman School of Medicine at the University of Pennsylvania. Her clinical interests are patients with endocrine dysfunction related to rare metabolic disorders, as well as children and all types of obesity and resulting complications. Dr. McCormack earned her M.D. from Harvard and MIT and her MTR from the University of Pennsylvania School of Medicine. Dr. Lin is an attending cardiologist in the Cardiac Center and the Medical Director of Cardiomyopathy at the Children’s Hospital of Philadelphia. She is also an assistant professor of pediatrics at the Perelman School of Medicine at the University of Pennsylvania.
Dr. Lin has expertise in heart and heart and lung transplantation, as well as pediatrics and heart failure. She works on research and exercise and heart disease in the rare disease Friedreich’s ataxia. And Dr. Lin earned her M.D. from the University of Michigan Medical School. Together, Dr. McCormack and Dr. Lin share a grant to study the role of exercise in the treatment of Friedreich’s ataxia. So thank you so much for being here today, both of you. I think we could get started. And could you please both talk about what your job entails on a daily basis?
KIMBERLY LIN:
I can start if you like. So I have the privilege to work clinically with children and young adults who have cardiomyopathy, so conditions in which their heart muscle is abnormal. And going along with that, I get to know a fair number of young folks who have Friedreich’s ataxia because in part of the diagnosis of Friedreich’s ataxia is a risk of cardiomyopathy as well. I also have a fair amount of time set aside to do research to, hopefully, you know, further improve the lives of the types of patients that I care for. And yeah, and I get to teach some, I get to teach residents and fellows and students who come through the Cardiac Center at CHOP.
SHANA MCCORMACK:
Thanks, Abby. Yes, so my day-to-day, just like Dr. Lin’s, is a mix of taking care of patients in the clinic, also seeing patients for research studies, because our research is pretty much all in human participants and then also training the next generation of physicians and researchers. So as you mentioned in the introduction, clinically, I take care of children with endocrine disorders. Notably, those include problems with weight gain. So for example, obesity, also problems such as diabetes or problems with blood sugar. And that’s how I came to be involved with patients with Friedreich’s ataxia, because folks with Friedreich’s ataxia have excess risk for blood sugar problems. One other endocrine problem that we also think about in folks with Friedreich’s ataxia that’s relevant for today’s discussion is fragile bones. So many folks with disabilities or neurologic conditions don’t have bones that are as strong as others might. And so that can make their bones more likely to fracture, to break, which can be really painful and really challenging.
So in the course of our clinical practice, we take care of those folks, and then in research, try to find better ways to manage them in the future
ABBY LYNCH:
Awesome. Well, you kind of both already answered this, but when working with all of your different patients, do you work with people living with disabilities often? What kind of patients do you work with?
KIMBERLY LIN:
Yeah, so I think both of us mentioned that we had the opportunity to work with folks who have Friedreich’s ataxia. I also have a relatively large number of young men with Duchenne muscular dystrophy that I see. And then there are other conditions that because cardiomyopathy does go along with several different types of more systemic disease, they’ll often come to see me to either screen their hearts or to help take care of their hearts if they have any degree of cardiomyopathy.
SHANA MCCORMACK:
Yes, so great points. I think many of the patients are shared patients and then individually in each of our clinics have disabilities of varying forms. So folks with Friedreich’s ataxia, of course, have ataxia, have difficulty with balance and walking. I also take care of a lot of patients who’ve had brain tumors. So brain tumors that affect the hypothalamus and pituitary can predispose folks to develop excess weight gain and also diabetes and bone health problems. Many of those folks, because of their tumors, have challenges related to physical disabilities. If, for example, they’ve had strokes as complications of their tumors or treatment or have intellectual and developmental disabilities as a result of tumors, or for some other children with different genetic or metabolic conditions, they have different disabilities that go along with their medical problems that we manage.
ABBY LYNCH:
Cool, so it sounds like you see a wide variety of different people even if you do have clinical overlap. So could you tell us how exercise plays a role in the work that you both do?
KIMBERLY LIN:
Yeah, so exercise is really important for overall health and heart health in particular. We know this even for healthy children and healthy adults that exercise is crucial to really optimizing a person’s health. In my field, it’s actually interesting. We’ve often focused perhaps a lot on how much to limit folks from exercising due to concerns that exercise might cause the problem, might stress the heart too much, or increase the risk of heart problems like abnormal heart rhythms. So for many years, we really have been so risk-averse that we’ve concentrated mostly on talking to patients about what they can’t do rather than about what they can do. I know. That pendulum is certainly shifting, and I can definitely feel it in my field in particular. So, you know, whereas we used to tell folks who had a form of cardiomyopathy called hypertrophic cardiomyopathy that they really should not exercise and that they should be afraid of exercise. Even our guidelines have shifted to say that, you know, the degree of exercise they ought to do should be a shared decision-making process with their physicians and their overall care team, taking into account both the potential risks with exercise, but also the potential benefits so that folks can actually try to strike the right balance and not just avoid exercise altogether due to fear or extrinsic limitation.
So exercise is certainly a big part of my day-to-day job, both in research and in clinical practice.
SHANA MCCORMACK:
Yes, I would agree entirely. And similarly in endocrinology, I think all folks know if they are familiar with kind of common forms of diabetes or osteoporosis, fragile bones, that exercise is incredibly important for preventing those health problems. So for keeping blood sugar in safe range and for keeping muscles and bones strong, exercise is critical. But then once folks are affected with diabetes or with fragile bones, I agree with Dr. Lin entirely. Historically, there’s been a lot of emphasis placed on safety, which is correct, but sometimes so much so that folks are reluctant or concerned about undertaking exercise because, for example, someone who has diabetes who is treated with insulin could have low blood sugars during exercise. And we’ve emphasized that, which is right, because we want folks to stay safe while they’re exercising. But I think we’re doing a better job these days of telling folks what they should be doing to keep blood sugar in a safe range so that they can exercise and take all the incredible benefits of exercise, both with respect to physical health, but also mental health and social function.
And I think we’re also getting better at integrating our ideas about the physical health benefits with exercise, along with the mental health benefits and the psychosocial benefits of engaging in activity, especially with peers or for fun. And as a way to cope with the stress that many folks face, including individuals with disabilities.
ABBY LYNCH:
Wow, that’s so interesting. I’ve never really thought about how, I guess, people could shy away from too much exercise or anything of the sort. And then because we always hear about exercise being to promote your health and I guess there’s many other considerations to take when thinking about different living situations and what abilities people have. So when interacting with patients, how do you communicate the importance of exercise and then also balancing all these different things to take into consideration?
KIMBERLY LIN:
Often, folks will come to my clinics, again, with a longstanding fear of exercise or the misconception that they can’t or they ought not let their child exercise. So I spend a fair amount of time deconstructing that and helping to frame what their relative risks and relative benefits are. We often will utilize our exercise lab that we have at CHOP to better quantify what a kid’s functional capacity is and what a reasonable amount of exercise might be for them, individualized to their ability, both physically and then from a specific cardiorespiratory point of view.
SHANA MCCORMACK:
Yes, I agree. I think the exercise lab is a great resource for us to help really drill down to be specific with patients and families about what kind of exercise they can pursue. Our physical therapy colleagues are also amazing allies because it’s easy enough for all of us as clinicians to say, “Hey, exercise is safe. We can make it safe. You should do it.” But there are so many different kinds of barriers to starting exercise. And when we say as clinicians, like, “Gosh, you should start to exercise.” Like, what does that mean for a given patient with a disability? Like how can she or he or they really meaningfully get started? I think we have to get specific, right? And figure out what resources people need. So that’s part of why Dr. Lin and I pursue some of the research we do is so that we can say, “Hey, we’ve got some experience. We’ve studied different forms of exercise in folks with specific conditions, and here’s what we’ve learned so we can give you advice that’s more tailored to a given condition or to a given person.”
ABBY LYNCH:
Well, that’s great that it’s specific because it really isn’t just a one size fits all. One exercise may not benefit one person and then something that wouldn’t be considered exercise for another person, it would be a great exercise for someone else. So that’s really cool that it can be personalized and, you know, benefit whatever that person needs. So are there specific kinds of fitness resources that you share with patients and their families or caretakers?
KIMBERLY LIN:
The specific resource that I have access to and Shana also is really our exercise physiology staff, honestly. They’re just so precious because they do actually take some of the time to work with individuals, including individuals with certain types of disability and try to help tailor exercise to their abilities. So yeah, I have that luxury of having exercise physiologists available to check in with to help our patients.
SHANA MCCORMACK:
Yeah, I agree. And physical therapy as well as exercise physiology. When we have the benefit of time, which we more often do in the research side but we try to do on the clinical side too to take a detailed exercise history and to hear from our patients and our families what they’ve tried before, what they enjoy doing, what they’re motivated to do. I think one factor that limits people from pursuing more exercise, aside from the fear factor that Dr. Lin mentioned, which is an important one, is that if they approach it incorrectly and or don’t perceive benefits, like if we’re not able to educate them around what benefits they might see, at what pace, from what exercise, then it’s work to pursue exercise. And if it doesn’t feel like it’s doing anything, well then they’re not likely to continue. So time is really our most valuable resource, truthfully, in the clinic to try to get at the specifics that will help folks see the benefits of the exercise that they’re pursuing so that they’re inclined to continue.
ABBY LYNCH:
That’s really cool.
KIMBERLY LIN:
Your question, Abby, is a good one because I do think that medicine in particular has fallen short at times in having specific resources surrounding exercise for young folks. And I think we could do better at that. And there are other fields that have done better at that, right? Even folks like the local YMCAs and, you know, certain organizations, the American Heart Association, for example, has recommendations on, you know, healthy amounts of exercise and what that might entail. But, you know, in our medical fields, we’re still working at that.
SHANA MCCORMACK:
I think I would agree entirely. And I think where we’re most successful is where we’re able to come up with either on our own as clinicians or more likely in collaboration with some of our other specialists with an exercise prescription, a very specific one. Like, let’s start with this particular form, with this particular heart rate goal or, you know, this particular duration goal. It’s something that’s a prescription the way you would prescribe a medication or nutrition or any other type of intervention. I think our colleagues in sports medicine also do a really good job with this. And as Dr. Lin mentioned, hopefully that culture is going to expand to other subspecialties because we all should be writing exercise prescriptions just as readily as we do, you know, pills from the pharmacy.
ABBY LYNCH:
That’s really great because then it’s a natural way to kind of broaden your horizons and also show awareness that people are individuals and deserve individually tailored advice and support. So do you think that people with disabilities have a different relationship to or mentality surrounding exercise and fitness in comparison to people without disabilities?
KIMBERLY LIN:
You know, maybe yes, but maybe we assume that and maybe they don’t. Because I think everyone, you know, comes to exercise or avoids exercise for a variety of different reasons, right? And I think many of us might assume that a person with a disability either can’t exercise or is not interested in exercise. And we’ve certainly found that to not be the case. Many of the folks we work with who have disability actually would really like to exercise, and sometimes they are at a loss for just how to go about doing that. But I don’t think that the relationship or the mentality is fundamentally different, except that maybe there are very concrete barriers to doing so that we need to make sure we help them to overcome. So, I mean, I guess that’s one way to introduce the study that Dr. McCormack’s leading and that I’m participating on with her. She was just talking about exercise prescriptions, and our nickname for the study is Ex-Rx or exercise prescriptions in Friedreich’s ataxia, right? Because she’s designed this study that is able to individualize that exercise prescription and also look at the effect of a particular supplement in terms of, you know, how folks with a particular disability, Friedreich’s ataxia can perform… improve, hopefully, their physical functioning and also their glucose tolerance.
SHANA MCCORMACK:
Yes, you know, Kim, I’m glad you brought this up, that they’re probably more shared than different with respect to how folks with disabilities approach exercise. Because folks without disabilities, there’s lots of barriers and misconceptions and challenges and needs. The impressions I’ll share in particular as related to the research study, first, I’ve found many of our patients with Friedreich’s ataxia or other brain tumor patients are particularly motivated to exercise because they really have particular goals, like keeping their heart healthy or avoiding diabetes or keeping themselves functional or improving their mood. They are often very well informed about their conditions and know that exercise may be helpful. The other point I’d make is we’re really grateful on this research grant. You know, Dr. Lin mentioned this is one I’m leading, but it’s very collaborative. And in fact, the idea for the exercise prescription formulation comes not from either of us but from Kyle Bryant, who’s an athlete with ataxia, who you are likely familiar with, but whose book I read and I know Dr.
Lin read as well in preparation for this grant and his approach, which resonated to me with respect to the barriers that folks encounter. I mean, the way he framed it is some of those barriers are just the way the world happens to be constructed, right? So some folks may or may not be navigating more easily in that world because of how it is. But if the world or resources are structured a little differently, like then folks with disabilities can absolutely participate in exercise to a terrific extent. So our goal with this study, as was mentioned, is to try to think about how to set up the resources in a way that allow people to be successful in pursuing exercise.
ABBY LYNCH:
That’s awesome. And this definitely leads to my next question about inclusivity for exercise and fitness. So you talked about a little bit, but I was wondering if you could expand more on how can exercise and fitness become more accessible and also inclusive for people with disabilities or any other challenges that they’re facing?
KIMBERLY LIN:
Shana already started by bringing up a person who’s been really inspirational to a lot of us. Kyle Bryant, you know, is a man who lives with disability, and he has not let that hold him back. He’s actually championed the idea that folks with ataxia can be very active and has inspired many, many folks to get into cycling in particular. And in the course of doing that, he’s helped to raise millions of dollars in research funds to help find a cure for a particular form of ataxia. So I think that form of exercise has actually engendered both, you know, individual physical fitness for many people, but also a sense of community and a sense of like, hey, we can be active and we can do this, we can do this together. We can even use this pursuit to, you know, create community and raise funds for a common cause. So he’s really inspired a lot of us to take the idea of, like, these barriers or these perceived barriers are really not necessarily absolute barriers, and we can punch right through them. Exercise and fitness can be accessible to many people.
And I also wanted to mention we’ve actually got other colleagues. Shana mentioned physical therapy as being one field that’s really important for helping people to stay active. We’ve got colleagues at the Burke Neurological Institute in New York who’ve been thinking about this for a while and actually put together a research study looking at tele-exercise for folks who couldn’t even come in for sessions, right? So could they program exercise for folks from home, folks who couldn’t necessarily do exercise that depends on their legs, but seated exercise that use mostly upper extremities? So there are folks out there being creative and trying to make sure that exercise and fitness are really accessible, inclusive for everyone, including folks with significant disabilities.
SHANA MCCORMACK:
Yes, I would agree. And we’ve had so many collaborators teach us interesting strategies. Like with a community, with technology, with creative folks, and with willpower, it’s absolutely possible to make exercise accessible. The term adaptive exercise was one I wasn’t familiar with before pursuing this type of work in more detail. And in many ways, all exercise is adaptive, right? Like each exercise, stimulus is ought to be suited for the particular person who’s engaging. But for example, Laura Prosser is a colleague in physical therapy who is an amazing researcher, and she helps a variety of patient populations engage in research, including like folks with cerebral palsy or young children who may have cerebral palsy or other neurologic conditions. And she’s designed for the little ones, in particular, like an amazing adaptive play environment so that they can have fun and engage in some of the activities that naturally build muscle strength that may or may not be as accessible without some of the unique structures and environments she’s designed.
And she’s taught us ways of adapting cycling equipment to help make the exercise more comfortable and more doable. So I’m really excited to have this kind of team approach to help us say, OK, well, you know, whose needs are we meeting? We know the current exercise study meets the needs of a lot of folks with Friedreich’s but doesn’t meet everyone’s needs so that we have to keep thinking about, alright, for those folks for whom this type of exercise is not a good fit. Like, what could we offer them in the next iteration, you know? Kim mentioned the Burke team and what their ideas were. And so we take this kind of iterative approach, right? Like we try and we get feedback and we work very closely with the patients and families and then say, alright, well, where are we? Where are we good, where do we need to do more? It’s very satisfying to be part of that process.
ABBY LYNCH:
That’s great.
KIMBERLY LIN:
I mean, just to be a little bit more specific for you, the main research study that Dr. McCormack is leading and talking about is one in which folks with ataxia. And these are folks who may also be even non-ambulatory, but folks with ataxia and who can still significantly utilize their lower extremities. They engage potentially in exercise using a recumbent cycle. So we have it put on a trainer so that they can complete exercise sessions in their home on a trike that’s placed on a trainer. But the fact that they have ataxia and the fact that they may not be ambulatory is not necessarily limiting for them to participate in this study. But as you know, not everyone has enough coordination and enough muscle strength in their legs to be able to cycle on a recumbent trike. So, you know, this study is hopefully just the start of, you know, several in which we can hopefully open up the area of exercise to more and more people regardless of their level of disability.
ABBY LYNCH:
That’s amazing and that’s incredibly helpful. And you definitely can’t underestimate the power of internal drive that people have and the spirit of community that helps them continue working for whatever their goals might be. So is there anything else that you both would like to add in general or exercise-related for the end of the interview?
SHANA MCCORMACK:
Well, I mean, first, I want to thank you and your organization for spreading the word and for pursuing this topic. I think it’s really important. I hope it encourages all the members of the community who might be watching from like patients and families, clinicians, therapists, exercise physiologists, all sorts of folks to continue to engage around this issue. Like so for folks who haven’t talked about their questions about exercise with their physician team, I hope they consider that because we really want everybody to be able to engage in something that’s so incredibly important for health.
KIMBERLY LIN:
Yeah, I’ll just echo that and say, we really hope that all folks, regardless of disability, will be able to engage and receive the benefits of exercise. And we hope we can be a part of bringing that to the community at large and especially to those with disabilities.
ABBY LYNCH:
Well, thank you both so much for being here today. I learned a whole lot and I hope everybody who watches this video does as well. It’s definitely very informative. So I just want to give a huge thank you to both of you for taking the time out of your day to talk about this really important topic. So thank you both so much.
KIMBERLY LIN:
Thank you, Abby.
SHANA MCCORMACK:
Thanks, Abby.
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