All right, let's go ahead and get started. Welcome back, AAP Virtual Didactics. We are excited to host Dr. Ed Hurwitz today. We will, we've already kind of gone over most of our introductory materials, so we'll skip through the majority of that and discuss some of the goals and housekeeping again. We're going to keep everybody video and audio muted. Nothing personal, it's just about bandwidth and noise. So if you have any questions, there's our email address. That's Candice, who's also on this call. And then you can find us on Twitter. So without further ado, we're excited to hear from Dr. Ed Hurwitz. Thank you for joining us, Dr. Hurwitz. My pleasure. I need to share screen. Yes, sir. Go ahead and do yours and you can, you'll bump me off. Let's see. You know what? I'm used to blue jeans. Where's your screen in this function? Here it is. Are you able to see my screen now? Not yet. Okay. You should be able to click, there should be a mute, start videos. There should be a new share or a share screen option. Has shops swapped shared screen with videos? No, that's probably not it. Do you see a button that says remote control? Let's see. Switch to share. No, that's not it. Remote control. Sorry, folks. All right. This happens. Okay. Let's see. So give me another guess. There's a green arrow screen button at the bottom of the screen. Greener. Ah, there it is. Got it. Yay. Thank you so much. All right. Let's see. How about now? Yes. Okay. Excellent. All right. I knew we'd get there if we had faith. All right, everybody. Welcome. Thanks, everybody, who came. Thanks, everybody, for coming. I am Ed Hurvitz. I'm a professor and chair at the Department of Physical Medicine Rehabilitation at Michigan Medicine, the University of Michigan. And I'm here to talk to you today about growing up with autism. I'm Ed Hurvitz. I'm a professor and chair at the Department of Physical Medicine Rehabilitation at Michigan Medicine, the University of Michigan. And I'm here to talk to you today about growing up with cerebral palsy. That's why I like to call the lecture. But there's a lot we can talk about when it comes to the idea of growing up with cerebral palsy. What we're going to talk about today is really the medical care of adults with cerebral palsy. So we're going to talk about how you, the rehabilitation medicine physician, the physiatrist, can interact with an adult with cerebral palsy who comes into your clinic. Here is my disclosure information. I want to point out, I'm not talking about anything off-label. I am going to mention botulinum toxin, but it is on-label for spasticity in adults. And we are only talking about really adults today. So let's start with the Adult with Cerebral Palsy Clinic, which was founded at Michigan Medicine, University of Michigan in 2008. There's a picture here of Dr. Heidi Hopala, who's helped staff the clinic with me. And Dr. Mary Schmidt joined us a couple of years ago with an interest in what happens to children with disabilities once they grow up. So that's what the clinic is about for adults with cerebral palsy. The clinic has an adult focus. We talk about adult medical issues, as we'll review today. We talk about things like employment, higher education, relationships. And the goals of the clinic, pain is one of the big problems that brings people into clinics. So we do a pain assessment. We screen for common associated conditions, which we'll talk about extensively. We give education to our patients about aging with cerebral palsy, and we help them with community resources and social supports. So I hope everybody here is familiar with the International Classification of Function. And we'll talk about aging with a disability, especially a pediatric onset disability. Pediatric onset disability is different than aging with a disability that occurs during the adult years, like a stroke or a spinal cord injury that occurs after a person turns 18 because development plays a role. So muscle, bone, limb, and joint development is not what we'd expect it to be. It's not normal. And that has a lot of effects on what the adult with cerebral palsy looks like compared to the adult with an adult onset disability. This affects their activities, such as walking and moving and ADL. And then at the participation phase, there's decreased participation and decreased activity. From the environmental concerns, there is a lack of information out there in the environment about adults with cerebral palsy, and there's decreased access to healthcare and decreased access to participation in exercise venues, recreational venues, and this sort of thing. And then from a personal point of view, there's no life pattern of activity. Their activity from childhood has always been about physical therapy. They didn't go to gym class. They didn't participate with other children in activity. And this affects their levels of activity as they get to be adults. And children that grow up with disabilities in general have decreased social skills, and this will interfere with some of their adult goals as well. So let's start off with a case. Let's meet David, fictional case, with a real person pictured there, not his name. He's a 31-year-old man. He has some walking difficulty in that he has a gross motor functional classification scale 2. I'm not going to review that scale, but if you're not familiar with it, please Google it after the lecture. It means he's able to walk in an outside environment, but with some difficulty, can't do well on uneven surfaces. He has spastic bilateral seropalsy, or you might say spastic diplegic, but the SBCP is one of the more commonly used terms. He was born 31 years ago prematurely and had interventricular hemorrhage. 25 years ago, he underwent a procedure called a selective dorsal rhizotomy, which is a neurosurgical procedure where some nerves coming off the spinal cord are sectioned to reduce spasticity. He still has some spasticity, and so he has ongoing lower extremity botulinum toxin injections to help with the spasticity in his hamstrings and his gastrocnemius soleus groups. Socially, he's single, but in a relationship. He works in a community center. He's taking college courses, and he exercises once to twice a week. So he comes in today with several concerns, as most of my patients who come in in my adult seropalsy clinic do. He has chronic back and leg pain that we want to talk about once again. He tells me, you know, at 31, he's just not able to do as much as he used to do. He's struggling with his schoolwork. He tells me it's just exhausting. He's fatigued. I ask him about his interactions with his primary care physician and so forth, and he tells me he has no other doctor. He's not been able to find other doctors to feel comfortable working with an adult with seropalsy. And he has a question for me today about something called early aging, which he's seen about on the web, something where it talks about adults with seropalsy aging at a younger age than typically developing adults do. So we're going to talk about these things. So we go ahead and do some health screening. We look at his cardiovascular risk, his body composition. His BMI is right on the mark, 24.9. Concerningly, his waist circumference is 0.96, which is high for an adult male, more like 0.8 is the range, and his is high, even with his normal BMI. His blood pressure is 132 over 78, a little bit high in the systolic. He tries to get physical activity and exercise once or twice a week, and he doesn't find it satisfactory. He doesn't seem to be able to find an exercise routine that works for him, and he can't find anybody who can really tell him how best to exercise with some of the challenges that he has physically. We look at his lipids and his glucose. His HDL is 3.2, which is a little low, which is concerning, and his total cholesterol is 205, which is a little high. So he has some markers already at 31 of cardiovascular disease. We talk about bone health. His vitamin D is 19, which is low. As far as bowel health, I did a PAC-SIM on him, which is a measure of constipation symptoms, and it was 1.5, which shows that he has some mild constipation issues. And I asked him about how he's feeling, did a mental health screening. He had decreased interest in doing things, and he told me he was just generally feeling down. So these are some of the problems that he presents with. So let's talk about some of these things and how they relate in particular to adults with cardiovascular palsy. So the first thing is, let's imagine that this is his DEXA scan. So we do a DEXA scan on him, and the DEXA scan, we want to know about his bone health and his body composition. And the DEXA scan demonstrates that his BMI, as I mentioned, is right on the mark. It's in the normal area. It's 24.99. But when we look at his total body fat percentage, it's at the 90th percentile. He has way too much body fat, even though his BMI is normal. And we also see that his bone density is low, even though he's a fairly active ambulatory young man. So why is his BMI normal if he has such a high body fat? And the answer to that is because he has so much muscular atrophy. These are some images from a study that's published from our research group, and it shows significant atrophy of the psoas muscles. The psoas muscles are much smaller than you would expect for a person of the age where this MRI was done. Adults with cerebral palsy have significantly less psoas muscle cross-sectional area. And we also find that they have a lower muscle attenuation coefficient. So basically, they have lower muscle density. The other thing that they have, which I didn't show well in the pictures, is a lot more intramuscular fat. So their intramuscular fat adipose tissue content is much higher than individuals of the same age with the same body fat percentage. This is fairly common in neurologic syndromes, and it's something that's seen even in children with cerebral palsy. So our critical clinical question is, given the documented loss and absence of lean body mass, muscle and bone, and increased storage of his visceral fat, and as I mentioned, his muscular adipose tissue, is there an increased risk for chronic disease in cerebral palsy? And the answer is that there definitely is. We've published several papers that have discussed this risk, but this is a short paper that we published in JAMA back in 2015, and I think it just illustrates it well. The bars here are the blue for cerebral palsy and the yellow for typically developing individuals. And we see that in every disease that we looked at, diabetes, asthma, hypertension, other heart problems, stroke, emphysema, and joint pain and arthritis, individuals with cerebral palsy were at a higher percentage, a significantly higher percentage than the typically developing group. What's more, we found there were significant covariates, age, of course, but obesity. Obesity was independently associated with greater odds of the eight chronic diseases for the individual's cerebral palsy. Also the degree of physical disability and physical inactivity. So when we looked at obesity and physical inactivity in an individual's cerebral palsy, we found a significant association with their increased chronic disease risk above and beyond that of typically developing individuals. What's more, we looked at multi-morbidity in cerebral palsy. We looked at our own individual's cerebral palsy at Michigan Medicine, 435 individuals, 40 to 60 years old, seen in our clinic over a five-year period, and we looked at this list of chronic diseases, and we defined multi-morbidity as individuals who had greater than two, two or more, I should say, two or more chronic diseases. What we found was a very high percentage of individuals with multi-morbidity with more than one chronic disease listed, and we found that there was a difference whether the patient was obese and what the GMFS level of the patient was. Patients with a GMFS level of four and five, which is more severe motoric involvement, wheelchair use, and so forth, had a higher incidence of chronic diseases, whether they were obese or not, and individuals that were obese, like Graybar, had a higher prevalence of multi-morbidity than individuals who were not obese. Obesity and level of involvement of the cerebral palsy both played a significant role. We looked at this across amount of multi-morbidity, and we found it to be a pattern where we see over here the white bar being typically developing, the black bar being cerebral palsy, and the next two bars being the GMFCS1-3 and GMFCS4-5, and as you look down through the graph, you see that the all-CP bar and the GMFCS4-5 bar are consistently higher than the other bars. So we asked, is this the early aging? Is this what we're seeing where we see adults with cerebral palsy having this higher risk of chronic disease, and what's more, also having this higher risk of having these diseases at an earlier age? Let's talk about bone health. Adults with cerebral palsy had a high incidence of osteopenia and osteoporosis, even if they were ambulatory, and what we found particularly surprising is this happened fairly early. We looked at folks who were 18 to 25. Look at the high incidence of osteopenia that was recorded in these patients, and we think that it was under-recorded because we only found osteopenia by looking through charts and x-rays. Many patients didn't even have those findings. So even in our younger patients and even in our ambulatory patients, there was osteopenia, and then over the years of life, osteopenia converted into osteoporosis. 35 to 40% had decreased bone mineral density, and the older patients had osteoporosis with a higher risk of fractures. Now we have developed a line of research in our laboratory group that has looked at fractures, that would be associated with osteoporosis, fractures that are non-traumatic, and found that these fractures have a marked increased risk of higher morbidity and mortality. So this is a very significant problem. Here's something from a study that was published that looked at low trauma fractures increasing mortality, and we see that there is an increased risk of mortality when an individual with cerebral palsy has a low trauma fracture over time. So low trauma fractures lead to other problems. We also have studies that show low trauma fractures having a relationship with respiratory diseases, cardiovascular diseases, and so forth. So fracture prevention is a big issue in the adult with cerebral palsy clinic. All in all, musculoskeletal morbidity, you look at things like osteopenia, osteoporosis, and arthritis, we looked at that over time and over age. We looked at the odds ratios, and while we saw that the odds ratio increased with age, which was no big surprise, I think the thing that was most interesting in our findings was that the musculoskeletal multimorbidity, individuals who had more than one musculoskeletal diagnosis was at a fairly high odds ratio of average of two, and you see the range there, and patients were only 31 to 40 years old. I think most of us who are in their 30s don't expect to have multiple musculoskeletal diagnoses, but this is something that's facing the adult with cerebral palsy, which contributes to the other problems they have, which contributes to this phenomena that our patient was concerned about called early aging. Chronic kidney disease is another finding that we've had in our research. We have found that adults with cerebral palsy have a significant increased odds ratio for chronic kidney disease, 1.83, and you see the range there. We're not sure exactly what causes this. It's associated with other chronic diseases, and maybe certainly related to hypertension, which is something we found to be higher in adults with cerebral palsy. One other thing that concerns us about chronic kidney disease, and one of the reasons we think that chronic kidney disease may be something that has not been discussed in the worlds of adults with cerebral palsy, is because it may be that the way we're measuring for chronic kidney disease doesn't work for people with muscle atrophy. This may be something we need to think about with all of our adults with muscle atrophy and various syndromes that cause muscle atrophy, neurologic syndromes. Creatinine levels in these individuals may look normal when we do a regular screening. When the screening is done in their primary care doctor, the creatinine looks fine. But that's because their creatinine baseline, because of their low muscle mass, may be very low. An increase in their creatinine to what we would call a normal level might mean that their kidneys are failing. We have other studies going on right now to look at these issues and other measures of kidney function and how that might be affected and different in individuals with cerebral palsy. Pain and fatigue are common problems. There is quite a body of literature on pain and fatigue in adults with cerebral palsy. They're very common. Some of the numbers quoted, 54% to 70% reporting pain monthly or weekly, the back, the legs, the hips being most common. Pain has an impact on quality of life for the person and for the caregiver. Interferes with their work, their life. Some of these studies look at pain interference scores, 60% or more will say the pain interferes with their life. The pain may be underreported and therefore undertreated and therefore have significant effects on people's lives. For example, the patient may have lower cognition or lower communication skills, which are abilities I should say, which means they'll be underreporting their pain. The patient may grow up with pain. There are studies that talk about children with cerebral palsy having pain. Individuals with chronic pain, when they're asked about pain, they may feel that there's no change in their baseline level of pain so that they may say they're not having it. So they're underreporting. The signs of pain may not be well-read when patients, sometimes you have a patient with a cognitive impairment, you move their hip, it causes pain, they actually smile. So you don't get the sense that they're having pain. And the patients may have poor access to treatment. Some of the treatments that may best apply to them, the practitioners may be uncomfortable with treating them. You may get pain specialists who are uncomfortable with working with people who have disabilities, who are chronic wheelchair users, who have scoliosis, interfering with the ability to do epidural steroids. So this is an issue of access that may come up for these folks. Fatigue is also a common problem. It's reported in 30 to 60% of patients and has an effect in life. As we talk about these different things, I want you all to think about how they interact and how they play a role together. We talk about poor levels of fitness, body composition issues such as low muscle mass and high levels of obesity. And I think we can think about that in terms of their low levels of physical activity. And then when we tie in the idea of pain and fatigue, we start to understand why they might have low levels of physical activity. As well as some of the other things we talked about, some of the chronic diseases, cardiovascular disease, musculoskeletal syndromes that may play a role. Even chronic kidney disease may be contributing to some of their fatigue issues and some of their overall feeling of health. If it gets severe enough, it may cause a severe debility and contribute to other chronic diseases. It is a seropalsy clinic, so I wanna say a few words about spasticity management. I hope that everybody on the lecture has had a good training or is going to get good training in spasticity management, especially in seropalsy. So I just wanted to say a few words about spasticity management, which are lessons learned from the Adults with Seropalsy Clinic. So there are anecdotal reports out there about the increasing spasticity in adults with seropalsy and asking why does spasticity increase as people become older? And there are equal number of reports that talk about spasticity decreasing in adults with seropalsy. And the idea of the spasticity management is less of a needed issue in adults with seropalsy. Well, I don't have a great answer to this contradiction of reports that I have heard. In my experience, people have spasticity as adults with seropalsy. Certainly, some medical conditions may play a role in how much spasticity they have, making it go up and down. Certainly, some patients may have less spasticity, but more contracture as they get older, which may give the sense that their tone is increased. Some patients may interpret their growing weakness due to their muscular atrophy as they get older as increased spasticity. I think there's a lot of things that go into that, and it's not clear to me if we can make a definitive statement based on my patient experience and based on things I've read and things I've heard about whether spasticity goes up or down. And I think what we need to do is look at each individual patient and treat their spasticity as needed. Looking just briefly at spasticity interventions, oral medications, when you give oral medications, you have to understand some of the adult issues that you're dealing with. You're dealing with people that may be sedated, which may interfere with their ability to concentrate on their college or graduate school classes or their employment or their driving, or it may affect their relationships. There are reports of baclofen decreasing libido. I think that's something very important that we have to take into consideration when we're thinking about medicating someone for their spasticity. What are we gaining and what are we losing when we give them these medications? One of the things to watch out for with this is somebody may have been on baclofen since they're seven years old and now they're 25, and they've just always been on it. Think about giving them a drug holiday. Maybe the different drug like Xanaflex or Valium even would work better, but keep in mind all those issues like sedation and other issues. Botulinum toxin, there are some out there who would say that botulinum toxin should not be given to anybody who is say over 12 years old. I've heard things like that. I will tell you that we use botulinum toxin frequently. I have many patients who come in on a regular basis to get their botulinum toxin injections, and they tell me how much it improves their life and so forth. We're putting together a study to look at this a little bit better. But in the meantime, we continue to do the injections because they continue to be helping people. As far as surgical, intrathecal baclofen is fairly commonly used in our non-ambulatory patients. I haven't used it much in ambulatory patients. Others may have different experience. There are centers, at least one center that is doing selective dorsal rhizotomy on adults. That's not been our practice. I can't comment on adults who are non-ambulatory because there may be some benefits to them that we have not explored yet. In terms of adults who are ambulatory, I think that you really have to look at the benefit and the gain of having such a major surgery with the experience of it not really being well-known or well-understood in terms of how it can affect their quality of life. One thing we have found out, that children who have selected dorsal rhizotomy have better outcomes as adults. There's a couple of studies that we've published on that. But in terms of adults themselves having the rhizotomy, not sure that that's the best idea. Let's talk about mental health issues in cerebral palsy. This is a significant concern, which I've been hearing from families for years, but only recently we've actually been doing some studies looking at that. We have some studies coming out of our center looking at this issue. Depression and anxiety are very common in adults with cerebral palsy as are other psychiatric problems like manic depressive and schizophrenia. What causes this? Is it related to the decreased participation, sort of a situational depression? I think there's much more to it than that. It could be related to sleep problems, related to pain. It could be related to neurologic factors. We don't quite understand the physiology of a brain that was injured in the newborn period and how that might affect the brain chemical environment when they get to be an adult. This is something that needs to be thought about and studied. This is a study that we did and I'll highlight some of my collaborators here. This is Dr. Dan Whitney, who is a junior faculty member who joined us recently and has published quite a number of papers in our group about adult cerebral palsy. Dr. Mark Peterson has been leading the group for a number of years. He just became the Lytle Professor of Cerebral Palsy Research at the University of Michigan. He'll be installed this July when we're done with the COVID virus. Dr. Seth Warshowsky, of course, is a neuropsychologist that is well known in the cerebral palsy world for his work with psychological issues and cognitive issues in cerebral palsy. Dr. Camdar, Neil Camdar and Sophia Eng are statisticians. This study looks at various, sorry, hang on. This study looks at various psychiatric and psychological conditions. And just for an example, here's anxiety. CP has a prevalence of 28.6, without CP, 18. And that's in women. In men, it's 19.5 to 11. And all down the list, the prevalence is higher in adults with cerebral palsy and especially adults with cerebral palsy and other neurodevelopmental disorders like IDD or ASD. These conditions are higher. So mental health issues are an important consideration in the adults with cerebral palsy clinic. Well, let's talk about sleep. Poor sleep is common in neurologic syndromes and is increasingly recognized as a problem with cerebral palsy. It affects many aspects of health. I just hope that most of you have had some lectures or courses about sleep medicine. So I'm not going to repeat all those. But when we talk about pain and fatigue, when we talk about just the cognitive abilities, we talk about association with some of the mental health issues, sleep is a very important consideration and something that should be asked about in adults with cerebral palsy. And then referrals made to sleep clinic for evaluation to see if that can be helpful. Constipation in adults with cerebral palsy is something we always ask about. I mentioned the PAC-SIMS. I'm not going to review exactly what the PAC-SIMS is today in this lecture, but it is a way of looking at symptoms. We looked at 63 adults and 52% had symptoms. And so we wonder, what is the effect of constipation on pain, on fatigue, on overall function, on their ability to get adequate nutrition, all things that need to be considered. And constipation is an important thing to ask about and treat in the adults with cerebral palsy clinic. Well, let's talk about some things that are perhaps a little less medical, though things that we need to talk about as well, things like relationships. Adults with cerebral palsy are generally less socially active than their typically developing peers. Studies show the onset of dating is delayed and the frequency of dating is lower. Their level of sexual knowledge is lower, but there's no less interest in adults with cerebral palsy. I don't have to tell this group about the common perception that people with disabilities are asexual. Of course, it's completely untrue. And it's something that we need to think about when we deal with adults with disabilities, including cerebral palsy. When we talk about their level of sexual interest, level of sexual involvement, certainly physical function, their gross motor functional classification scale plays a role, but some of the things that may even play more of a role includes their self-efficacy, their self-esteem, their sexual esteem, their perceived attractiveness. All those things may actually be more important than whether they use a wheelchair or not as to whether they are going to be involved in a sexual relationship. When we look at other aspects of independence and adult life, marriage, independent living, employment, all of these things are lower in adults with cerebral palsy than their typically developing peers. I wanna take a second to talk about a particularly interesting issue is driving because the landscape of driving has changed so much in the past several years. Of course, driving is a big challenge for adults with cerebral palsy. Even high-functioning adults will have challenges with coordination, with processing, which means they'll have slower reaction time. There'll be visual problems. There'll be just issues with managing the car. We have patients that have a right These patients are complex. They have problems like I've talked about here that take much more than a pill or a shot to handle. A special category to talk about for healthcare are women's healthcare issues. Everything from a gynecological examination to a pap smear to a mammogram. Mammograms are very challenging for women with disabilities in terms of standing in the frames. There is good work being done with ultrasound for breast cancer screening that I think will help a lot with our population of adults with cerebral palsy. But again, in today's rushed environment, you can always tell the story about the woman GMFCS4 who was expecting a baby who went to her doctor's clinic in her wheelchair, was taken into the doctor's room and told, undress, get up in the table, put your feet up in the stirrups. When the doctor came in a few minutes later and she hadn't done any of those things because no one had assisted her, the doctor said he couldn't. So probably the most important issue to think about and one of the most important issues that concerns people, the thing that they really start to notice is what's called functional decline. They start to lose some of the ambulatory function. There are a number of studies that talk about this and document this functional decline. The one I always like to highlight is a study from Opime in 2009. It was a seven-year follow-up on a 1999 study which showed decreased walking function over that 10-year period for the population they'd started with. They'd gone from 39% to 52% of the patients had decreased walking function, including 37% with hemiplegia. The age of change, 37 years old for the spastic diplegics. I think that the idea that someone might be 38 years old, 40 years old, and start to notice that they're not walking as well as they used to is something that's pretty upsetting for most of us. We all imagine ourself being healthy and functional till we're 90 years old. But imagine if you were on your 40th birthday and you suddenly were feeling you just couldn't walk as much as you used to. And even for the hemiplegics, much mildly involved, in their 50s, they start to notice this. They associate this decrease in ambulatory function with pain and fatigue. So this aspect of their life where they start to lose ambulatory function, start to have more pain and fatigue, that's what they identify as early aging. So early aging, why? Well, they have pain and fatigue, but why? So it's the list of things we've talked about today. Decreased levels of fitness, the burden of multimorbidity and chronic diseases, musculoskeletal diseases, the fractures we talked about, cardiometabolic, the respiratory and renal problems, mental health issues, poor sleep leading to fatigue. And then to address these issues, it's difficult because they have poor access to healthcare, which all leads to poor access to participation. And one of the things I haven't really talked about today is neuromotor control in terms of their ability to control their body and control their muscles. It's impaired because of the cerebral palsy. And do they lose function with time? We all lose brain cells with time. If you don't have the reserve, do you lose more? So let's talk about a few take-home points. Well, the neuropathology of cerebral palsy is not correctable. The factors that we have discussed today can potentially be helped with intervention. There's a number of things that we've talked about today where we can intervene. And, you know, I sometimes tell people I can cure part of your cerebral palsy. I can cure 10% of your cerebral palsy, 20%. You know, the idea being that I can't change the cerebral palsy, the neuropathology, but I can change much of how it's affecting their life with some proper interventions. Importantly, we must integrate a healthy lifestyle approach in our practice and educate others about doing so. So where do we start? Well, first, talk to people about, I have your exercise, but now that I'm looking at it, I probably should have said physical activity. Physical activity is healthy and safe for individual cerebral palsy. Seems like an obvious statement, but there's some important considerations. One is that the lack of exercise, the lack of physical activity in individual cerebral palsy is worse, it's a worse outcome than those who are typically developing. There's that high risk of chronic disease we talked about. There are the poor levels of fitness compared to people who are typically developing, which leads to fatigue, contributes to functional loss. We talked about pain. The other thing that's not obvious for people with cerebral palsy is that exercise is good. Some people were told not to exercise. They were told not to exercise because if they got their muscles stronger, they'd be more spastic. Well, we found that that's not true. They've been told they will hurt themselves. And if they do it right, they won't hurt themselves. And the other thing they were told is they think that they can't exercise unless they're with a physical therapist. And you don't need a formal physical therapist to be physically better. So many patients come into my clinic and they say, I just feel weak. I feel like I need more physical therapy. And we talk about, well, have you tried to be more physically active without actually going to a physical therapist? One of the major issues about physical fitness and exercise and physical activity for adults with cerebral palsy is there's a lack of information. People don't know how to guide people who have cerebral palsy to more physically active. So that information is growing. Here is an information sheet from the American Academy of Cerebral Palsy and Developmental Medicine. A shout out again to my colleague, Dr. Mark Peterson, who contributed greatly to the development of the sheet. And it talks about aspects of exercise and physical activity for adults with cerebral palsy. Dr. James Rumer in Alabama has this wonderful website, the National Center for Health and Physical Activity and Disability. I recommend everybody be familiar with this website and talk about it with their adult patients, even their pediatric patients, but particularly their adult patients about increasing physical activity in all of your patients with disability, not just cerebral palsy. And the information base is growing. Here's an article that came out with our collaboration with a group in the Netherlands with the exercise and physical activity recommendations for people with cerebral palsy. One of the first articles that tries to take on this issue with very limited information, but we did the best we could. We looked at a series of studies that looked at physical activity in cerebral palsy. And you see the tall bars over here on the left is sedentary behavior by GMF-STS level. Even the GMF-STS1 have 75% or a little more than that sedentary behavior as part of their day and going up with the levels. And then we look at their activity going down for central behavior, lower level of physical activity, higher level of physical activity. So even just breaking up sedentary behavior is a good place to start. Get people to stand up more often. And I'm telling you with our recent work patterns with this pandemic, that's something that's great advice for all of us as well. So put physical activity on the checklist, review healthy behaviors. How much physical activity? What kind? What are the barriers? What are your concerns about it? Especially health-related like we talked about and your knowledge about it. It behooves all of us to be more knowledgeable about these issues with physical activity, with adults with cerebral palsy and other disabilities and talk about it constantly when we see patients. Monitor for risk. Over here, I have some images about taking a waist-hip ratio. I've talked a little bit about BMI and how BMI is not a good measure for individuals with neurologic disability and atrophy such as cerebral palsy. We did a study looking at waist-hip ratio and we looked at BMI and we looked at lipid levels. And the waist-hip ratio had a very nice correlation with lipid levels. So we suspect it will have a very nice correlation with risk of cardiovascular disease because of that. That's a study that we will be starting to work toward. But I recommend getting waist-hip ratios and looking at it against the normals, even though they may not be as correct for cerebral palsy, but that's a good place to start and using that to advise patients much more so than BMI. Look for other chronic disease risks. Look at lipid levels. As I've mentioned, even in younger patients, 18 to 30, even in GMFCS5, one of the things that we found was very interesting is that we had individuals that were full-time wheelchair users, non-ambulatory, very small, a lot of atrophy, completely looked undernourished. And when we did the waist-hip ratios, the waist-hip ratio was high, despite the fact that they were small and they had a small waist, they had even smaller hips and they had a higher lipid levels as well. So that's a consideration even in that population. We talked about looking at renal and we talked about the fact that the creatinines may not be accurate, but we still need to look at them. Screen for depression, screen for bone density. Remember, the risk of low trauma fractures from low bone density can be associated with a lot of chronic disease. One of the things to think about, and especially, I'm sure many of you were having the same experience we're having in Michigan Medicine, is that telemedicine has just boomed with the pandemic. It took off like an unexpected rocket. I did several telemedicine appointments just this morning. And there is quite a lot you can do with an adult with cerebral palsy with telemedicine. Again, I've given you a long list of things to think about treating an individual with adult cerebral palsy that go much beyond looking at the range of motion and their spasticity. So if you start them on any medications, be it for sleep, be it for depression, or maybe even be it for spasticity, although I've told you some of the issues with that, you can monitor their dosing with a telemedicine appointment. You can ask them about constipation and treat that over the telemedicine. Mood, talk about their equipment needs. And then all the health promotion issues we've talked about, encouraging physical activity, steering them toward resources, ordering tests for them and so forth. Telemedicine can be a great resource because these individuals may have transportation issues as we talked about. And just may have busy lives. They may be full-time employed, but it takes them that much longer to get dressed, to make their own food, to take care of their family. Coming to the doctor's office may just be that much harder for them. And so telemedicine is a great option. So this is my friend, Duncan Wyeth. Some of you may have heard that name if you're familiar with cerebral palsy. Duncan is an advocate, a professor, and an athlete. And he has been a pioneer in many areas. He came to speak at our Grand Rounds about adult cerebral palsy recently. And his message was, is that we have to spread the word about adult cerebral palsy. We have to reach out to primary care docs, PAs, NPs, and give them the information, because information is power. Tell, teach them how to teach their patients and how to help us, that is the adult cerebral palsy, not myself, but Duncan, stay functional and well. So here we are. That's what I'm doing here today, to talk to you about all of these things and to help you think about when adults with cerebral palsy come into your clinic. When that happens, make sure you have the time to talk to them and see them appropriately. Certainly your rehab doctors address the spasticity, the wheelchairs and the braces, but emphasize the quality of life issues, all the things we've talked about, cardiac health, physical activity, the whole list there. And then certainly at the top of the list is function. So that's what I wanted to tell you today about adults with cerebral palsy. We've left about 10, 12 minutes for questions. So let me open it up for that. Thank you very much. This is very helpful and informative. A lot to think about with regard to factors that will contribute to quality of life and health in general for the adult CP population. I think it's gonna be both clinically relevant and board relevant. We do have a couple of questions. One is going back to markers of renal function. You mentioned that in individuals with fatty atrophy, it may be inappropriate to look at creatinine as a marker of renal function. Are you looking at Cystatin C at all? We're talking about that. We're looking at that as one of the options. Let me say that creatinine is not inappropriate. It just may not be the best measure done one time. If you get a person in your clinic with a creatinine of 0.9, you may wanna know what their creatinine was two years ago. That may be important to do. If you don't have that information, to look at it serially and see if it's increasing for the measure. But we're looking at the other measures as well, including their GFR and other things to see what might be the best. We're teaming up with our nephrology team on some studies that are ongoing right now. Great, I know that's an issue in older adult populations as well. Yes, it is. Going back to the very beginning of your talk, you were talking about the rates of obesity. How did you define obesity? Were you looking at BMI, were you looking at fat percentage? So the obesity studies that have been done, including one we published a number of years ago, do look at BMI, which I mentioned to you is not the greatest measure. But the thing about BMI is that it underestimates obesity in adults with cerebral palsy for the reasons I expressed, that they have decreased fat-free mass, such as bone mass and muscle mass and so forth. So when we looked at our studies and we found increased rates of obesity, we know that it's even a higher increased rates of obesity. So that's what we've done. There've been other studies that have looked at DEXA scans and so forth and documented the increased body fat percentages. And again, more work needs to be done with that. I think what's interesting to think about these things is that we need to think about where the markers are. So if 25 is highest normal BMI in typically developing adults, maybe it's 22 when adults with cerebral palsy. We haven't defined the numbers. Similarly, when people do studies, they tend to look for aging issues. And you just mentioned about the creatinine being an issue in older adults. So the issue we have is that older adults with cerebral palsy may be 40 years old, as hard as it is to say. So typically you see studies that look at three groups, 18 to 45, 45 to 65 and then older. And I've talked to people about cutting their data points different, maybe 18 to 35 and 36 to 54 and then older for looking at adults with cerebral palsy. Thanks. So another thought for those of us who are kind of in the policy world, there's a lot of thought about the short-term, midterm and long-term implications of some of the changes that have gone on during the COVID-19 pandemic. One of those issues is telemedicine. So obviously there's been a broad loosening of regulations surrounding telemedicine and billing associated therewith. Are you aware of any groups that are currently advocating for broader use or broader uptake of telemedicine for adults with disabilities? I'm not aware of groups that are advocating that. I'm certainly aware of medical centers, my own included, that are saying that we have crossed a bridge that we're not planning to walk back over. We're at like 90% telemedicine business right now and we're not gonna stay there. But I think that we're going to set goals of 50 to 60%. The idea is that once people have tasted it, I talked to a patient today that lives a four-hour drive from Ann Arbor. And the conclusion of the visit was is that the patient was moving around well and needed new scripts for PT, OT and speech. That was plenty. The telemedicine visit was plenty adequate to make those determinations in that particular patient. And they said that was a pediatric patient. So the thought about asking that patient to drive four hours is certainly not something that we want to think about. And then the adult issues, as I talked about in my slide, that I think that you're going to be seeing that the medical centers themselves, even without advocacy groups, are going to fall in love with this idea of telemedicine. There's a constant fight in an academic medical center, and I'm sure in non-economic as well. I've just always grown up in economic. There's a constant fight about space. And all of a sudden we have all the space we need and much more, and we're still seeing patients. So I think it's going to be something that happens. What we don't know yet is what we don't know about it. And I talk about this a lot with anybody who's talking about telemedicine. I don't know what I'm missing. I don't know what I don't see. Somebody brought up something interesting in a pediatric appointment. You can't tell if there's alcohol on the parent's breath when you're doing telemedicine. So we have to see what we're missing by doing telemedicine, but there's so much to be gained that it's going to be a major force from here on in. What are the results of the pandemic? I agree. I think a lot of these things are exciting to think about moving forward. Some of them I see going back into place, like the 60% rule for inpatient rehab and that sort of thing. But telemedicine is definitely one I'd like to see stick around. One more question. Do you know, is there a where, or I'm sorry, is there a role for amantadine or modafinil to improve fatigue in the adult CP population? You know, it's a very interesting question. So I have not used those drugs, but I showed you a picture of Duncan Wyeth and he was starting on modafinil and he said it was a life changer. So it's a discussion that he and I had recently and I have to think more about that. So it's a question I think I need to put out to my colleagues in other medical centers because we have not used it much, but the modafinil, the long-term effects, how long can you be on it and so forth, can it be helpful? So it's a great question and that's all I can tell you about it right now. Okay. One more question about telemedicine. How would telemedicine work if the patient lives in a long-term care or residential facility? As a side note, we're seeing an increasing trend in CMS policy toward reducing the physician to patient ratio, whether that be by non-physician providers or in an academic setting, there's residents and fellows and whatnot. But one kind of side effect, I think, of broadening access to telemedicine is increasing the opportunity for oversight of more non-physician providers. And we even see a hint of this in the CMS proposed rule that just came out, what, this week or last week? Recommending that non-physician providers be allowed to take over the roles that are currently played by physicians in inpatient rehab settings. So any thoughts on how telemedicine might work in a long-term care or residential facility? Yeah, well, I think one of the first things to think about is that telemedicine capability should now be a new absolute requirement for nursing homes, SNFs, LTACs, and the like. And I think that when you talk about other providers, I think that there's tremendous potential there for a physiatric consult, rather than physiatrists visiting these places, physiatric consults for patients that need them provided through telemedicine, which nobody can spend a lot of time in places like this, but in terms of expanding access to care for people, for physiatrists, I think that the idea of having the PA or the primary care doc who's working with the patients in the SNFs and in the long-term care facilities being able to call the physiatrist. And so the really answered question is, I think in those situations, it works better. It works better because you have a trained professional rather than a parent or a spouse or something like that, whom you could work with in terms of helping you with the physical exam. So we haven't done it with adults as much because we don't have that many adults in these facilities that we have access to, but in school settings with kids, the idea of doing a telemedicine appointment, we've worked with Epsom with the idea of people that lives eight hours away from Ann Arbor, that we had the therapists in school doing telemedicine and helping us do the exam and that worked great. So the same thing could be done in these long-term care facilities and could really expand our reach that way. I think it's an excellent point. And similarly with assisted living facilities, kind of the stepwise care, obviously you're putting patients that may have limited mobility or may be at higher risk of falls and fractures at higher risk by marching them across the campus, putting them in a van and bringing them into your office. So that might be an opportunity there too. That's all the questions that we have for now. Thank you so much for joining us. We appreciate it very much. I am going to put your contact information here. Great. Okay. And you're more than welcome. And I was really pleased to be able to do this and please email me and ask questions. I'm happy to do that. So thank you very much, everybody. Thank you. We appreciate you joining us. My pleasure.

adults with cerebral palsy

spasticity management

mental health issues

obesity

bone health

chronic disease risk

telemedicine

long-term care

access to care