Our 3rd Virtual Town Hall highlighting the latest updates in care of children with Cerebral Palsy with experts from the Shirley Ryan Ability Lab and Northwestern University.
Rachel Byrne:
Welcome to tonight's New Horizons, the cerebral palsy town hall series. This evening, we are going to joined by the teams from Chicago, from Shirley Ryan Ability Lab, as well as Northwestern University.
Rachel Byrne:
This evenings panel is going to really be looking at how we can provide families with the best evidence and practical guidance to optimize muscle function and performance in children with cerebral palsy. And we'll also be looking at how spasticity affects both mode of function as well as performance.
Rachel Byrne:
This evening particularly, we would love for you to make sure that you put questions in the comment section. The comment section can just be found on the right-hand side of the video. And please, as we go, put in any questions that you have for our speakers this evening.
Rachel Byrne:
This panel is actually going to be broken up into two different sections, the first being our expert panel and the second being a family panel. So we are really looking forward to bringing you all of this information this evening.
Rachel Byrne:
I would also like to say thank you to Ipsen Biopharmaceuticals, who is the sponsor of our town hall series.
Rachel Byrne:
Now, first up this evening, we're going to have Dr. Deborah Gaebler-Spira. She is a professor in pediatric physical medicine rehabilitation. And we are so fortunate to have her speaking with us this evening. We are also going to have Dr. Sardash Dayanidhi, who is a researcher and a scientist and a physical therapist. We will then have Kara Omali, who is a pediatric physical therapist, and Teresa Mouton, who is also a pediatric physical therapist. And we are so excited for this panel. And then, for our family panel, we're going to be joined by the Johnson family. So, to get started, I would like to welcome Dr. Deborah Gaebler-Spira.
Dr. Deborah Gaebler-Spira:
Good evening, and thanks for attending the virtual town hall meeting. I wish we could be in person, but this is the way we are performing all of our functions these days. It's my good fortune to work in a team that includes not only physicians, physical therapists, occupational therapists, but we also include the families. So we are going to be talking about how science includes families, and in particular we'll be focusing on muscle.
Dr. Deborah Gaebler-Spira:
Just to get us on the same page, cerebral palsy is a group of disorders and disturbances of movement and postures, which means that the children will have difficulty moving. It's attributed, or it's said to be caused by, a non-progressive or static or an unchanging injury or abnormality to a developing brain. It also has to impact activities. And it can be accompanied by sensory abnormalities, issues of behavior cognition, but not always, epilepsy. And the reason we frequently see children at Shirley Ryan is with the musculoskeletal issues. Now, cerebral palsy has been known for many, many centuries, but this is a current definition.
Dr. Deborah Gaebler-Spira:
How this changes a perspective, is that this creates an emphasis on activities and not just on impairments. A lot of people will think about cerebral palsy as the brain injury, but really it's a performance issue. It creates an inclusion of other issues that can affect performance. And it attributed some of the co-morbidities for prognosis. CP is a diagnosis that is caused by many conditions and many reasons, there can be many reasons for the brain injury. So this is why there's never two children with CP that look exactly the same.
Dr. Deborah Gaebler-Spira:
The way we organize in rehabilitation is that we look at certain paradigms of outcomes. And this is known as a World Health Organization's International Classification of Function. We're very fortunate that we have all aspects represented tonight, body structure and function. This is what's happening at the tissue or at the muscle level. Activities are those things that create the mobility, self-care, speaking. And then participation are those activities that are meaningful to the child and meaningful to everyone to be able to do. It's also modified by the personal factors and the external environment. And we're really happy that we've got the personal factors represented tonight as well.
Dr. Deborah Gaebler-Spira:
So you want to know: how do you create a team of people to work in the context of cerebral palsy? It's like building a snow person. The center of the snowman is the parent and child. Generally, all children have a pediatrician. And so they determine if there is a delay in movement. Frequently that initiates early intervention. And early intervention will start with a physical therapy, any other therapies, and care coordination. This allows family to begin the process of looking to set goals and how to map the future.
Dr. Deborah Gaebler-Spira:
Frequently, at this point, physical medicine and rehabilitation or pediatric rehab is involved, because we're also advising. And we'll be that longitudinal trajectory for children through their lifespan. Early intervention, since it terminates at three, there's generally a handoff then to the school system.
Dr. Deborah Gaebler-Spira:
Because cerebral palsy has all those other possible conditions, it's really important to add on the medical specialties that are going to enhance outcome. And the first, really, rehab goal is medical stability. So frequently you'll be involved with a pediatric neurologist to determine the etiology, or the reason for the injury. And that will put some definition around it. As well as pediatric orthopedics, which will begin the process of looking at the alignment in the bone.
Dr. Deborah Gaebler-Spira:
Very important is that there can be some sensory abnormality, so ophthalmology, hearing. Everything has to be medically managed beautifully. If you think about a pediatric practice, if you have 2,000 children in your pediatric, as a pediatrician you only have two to four children with cerebral palsy. Whereas, the pediatric physiatrists, if they have a population of 1,000, 600 of those, to 700, will have cerebral palsy. So it's very frequent that pediatric rehab specialists will have a lot of contact and knowledge about who are the specialists to be involved with.
Dr. Deborah Gaebler-Spira:
Nursing is extremely important in this early age group, because they are the glue and it's very important to know who to call in any system. As the children move into the next phase of school, and you add on the school, the educators, psychologists. And importantly, it's at this time where you develop autonomy. So we're looking at the school-aged children to develop the adaptive sports or recreation, and to begin even thinking about vocational efforts. It's never too soon to think about getting a job, and it's always better to get into that process of thinking about that early versus late.
Dr. Deborah Gaebler-Spira:
Of course, then, in the teenage years, you really expand your horizons and transition into the adult world as well. We're very fortunate, Shirley Ryan, we have the extension into the adult physiatrist. So we have the ability to follow children from very young to the older ages.
Dr. Deborah Gaebler-Spira:
And a person who is not in the clinic room at any one time, but is always on my mind, is the jewel and the crown at Shirley Ryan, which is the researchers. The researchers are involved in every aspect; from early diagnosis, to musculoskeletal to transition. And so we're very fortunate to have research tonight, to come and talk about some of the exciting things that have been going on at Shirley Ryan in muscle.
Dr. Deborah Gaebler-Spira:
This is a shot of our beautiful gym. And you can see we have robotics, we have early mobility, we've got a lot of nice light and beautiful surrounding. And welcome anyone to come and visit with us. Next.
Dr. Deborah Gaebler-Spira:
This is our tentative agenda for you, so that you can walk away with understanding: what is muscle, gain some knowledge about the evidence behind the strengthening endurance and flexibility. We're very fortunate to then get a personal perspective. And I can say that Lark and her family have been participating at all levels of our opportunities. And we certainly want to give some practical suggestions about how to accomplish the goals of therapy. Next.
Dr. Deborah Gaebler-Spira:
We talked a bit, in the beginning, about the cause of cerebral palsy is an injury to the brain. And there is a lot of emphasis about neuroplasticity. However, we're going to change the direction and talk about one of the most malleable and adaptable tissues in the body, which is muscle.
Dr. Deborah Gaebler-Spira:
So, at this point, I'd like to trade over to the real muscle man in the crowd, who is Dr. Sudarshan Dayanidhi. Sudarshan is a physical therapist. He has extensive experience in motion analysis. And he is currently working on a lot of very interesting muscle studies for us. So, please take it away, Sudarshan.
Dr. Sudarshan Dayanidhi:
Hi, I'm here to talk to you about muscles. All of us think of skeletal muscles, think of things that we do with muscles, that I'd like to talk a little bit about: what do scientists think about when they talk about muscles?
Dr. Sudarshan Dayanidhi:
So when we consider muscles, all muscles in our body are skeletal muscles. And our body are made up of similar structures. They might be slightly different in their size. They might be slightly different in the length, in terms of the way they're oriented, things like that. But overall, all muscles are highly organized.
Dr. Sudarshan Dayanidhi:
With the niche muscle. You have a lot of these muscle bundles or muscle SLES surrounded by connective tissue. And within each of those bundles, you have a lot of these muscle cells or myo fibers. And, and we think of a muscle contracting. We typically are talking about these muscle fibers or myo fibers contracting.
Dr. Sudarshan Dayanidhi:
And when we talk about contraction, what we actually are talking about are these molecular motors, which exist within each of those, my fibers, which are the Sarra mirror and these molecular motors, we have millions of them within each of the muscles. They are at their proteins that interact with each other to be able to create force. So they use a lot of energy to be able to do this. But when you talk about muscle contraction, we're talking about what are the SAR commanders actually doing in terms of the way they're interacting to be able to generate force. And that's a force that lets us do all to move and do all the things that we do in this world and similarly for other mammals. And when we think about postnatal development, broadly speaking, what happens is that these muscle cells are increasing in length and they're becoming bigger in size.
Dr. Sudarshan Dayanidhi:
And so they're adding more of those. So mirrors or more molecular to be able to generate more force and to be able to allow further muscles, to have complete excursion at our joints in cerebral pals, in many situations, this growth along the length, as well as in terms of is affected, meaning that if they're not able to increase the size of those myo fibers, those myo fibers are muscle cells are smaller and consequently weaker. And if they're not able to add more proteins along the length of the fiber, then the fiber prevents the muscle from being able to do a complete excursion at the joint and secondary to this piece. In many children, we see what we call muscle contractors, meaning that the muscles are that the muscles are not growing properly. And due to the improper growth, the muscle kids are walking with their hips and knees inflection, or they're walking on their toes.
Dr. Sudarshan Dayanidhi:
And these kinds of situations are potentially related to impaired muscle growth combined with other factors such as [inaudible 00:14:47] now, when we talk about muscle growth in general, what exactly are we talking about in terms of cells? Because our body is essentially made up a lots and lots of different issues made up from different kinds of stem cells. So everybody has heard of stem cells. You have walk in the different stem cells. You can, you have mechy stem cells, you have mural stem cells. You have hematopoietic stem cells. All of these stem cells create certain kinds of cells. And they also maintain themselves meaning that they have, they maintain this capacity to be able to create more cells. So for example, if you consider hematopoietic from cells, hemato cells are responsible for creating all the different cells we have within our blood.
Dr. Sudarshan Dayanidhi:
And let's say you go and donate some blood. You are able to re that blood that you donated thanks to these cells, which exist within our body. And when we talk about muscle, we have a different kind of cells within the muscle. So most people have a understanding that muscles are very plastic muscles are able to increase in force or increase in size muscles are able to train, to be able to do all kinds of hero activities like triathlons and marathons and all kinds of other things that human beings have been doing forever. Now, when we talk about the satellite cells, which are our muscle STR cells, these are call satellite salts because they hang around in the PEY of those myo fibers or muscle cells. And they were first discovered in 1961 by Alexandra Maro. And I guess that was the space age of ER.
Dr. Sudarshan Dayanidhi:
So he thought that they're like satellites, they're hovering around the, my fiber. And hence he called them satellite cells. Now they're to understand how these cells work. Let's think about what happens with a situation that most of us are familiar with in one way or the other, which is that let's say that unfortunately, due to this pandemic or due to a Chicago winter, you're stuck at home for a long while. And then it's a beautiful spring day and it's 70 degrees and you go out for a short run and then you get excited and you just keep running for five miles or something. And then it's a great run and you come home and life is good again. And then two days later, your muscles start complaining. They're they're painful. Every time you sit, stand, everything is constantly hurting. And at a couple of days later, those muscles recover perfectly fine.
Dr. Sudarshan Dayanidhi:
So, and then it seems that nothing happened at all. So the way that happens is because of these cells. So typically these satellite cells are sitting around complacently, meaning that they're not doing anything they're just chilling. And then when we have a situation such as an unexpected long run, which cause all kinds of micro terrors within the muscle, these cells will detect those signals from it and they'll get activated. They will increase the number they will fuse, and they will go to the regions, the muscle, which need to be repaired. And they will Fu with that and repair those particular aspects of the muscle. And a similar thing happens during muscle postal development is that these cells are responsible for postnatal development. So let's imagine a muscle is growing. The bone is applying stretch on the muscle. When the bone applies a stretch, the muscle, the muscle response by activating these cells and the cells will increase in number.
Dr. Sudarshan Dayanidhi:
They will fuse with each other and they will create more muscle material, which will go and combine with the existing part of the, the myo fiber and increase it in good as well as increase it in length. So scientists here at earlier and ability lab, as well as other scientists across the world are interested in trying to understand what happens to these cells in children's cerebral. And secondly, trying to understand how exactly can we use the region rate of capacity of these cells should be able to increase the capacity for muscle growth in children's service policy. And as you can imagine, this is hard to do because we are not able to understand what's happening within these cells, unless we get a biopsy from kids. And typically we get, we are only able to get a biopsy from kids when they're undergoing surgery. And so we support this, these, this understanding by doing experiments in mice, which are special mice in the sense that their genetics have been changed.
Dr. Sudarshan Dayanidhi:
So we can actually treat them with a drug to be able to get rid of those satellite cells. And then we try to see how that changes the way they respond. So, for example, if you think about, if any of you have had a fracture and you had your arm or leg in a caste, you know that when the cast comes off, your muscles have become smaller, but then after a couple of months, your muscles are back to normal. Your muscles are strong. You can do whatever you are able to do earlier. So that, that process of atrophy or making the muscles smaller and then letting and allowing the muscles to grow back, that's sort of what we are trying to study here by using this cast on our mice to create that atrophy. And then we try to understand what's the role of satellite cells, you in how that muscle will regrow.
Dr. Sudarshan Dayanidhi:
And similarly, we also are using these models or these mice to be able to make them run on a treadmill, to get them to do exercise, and then see how that exercise might be altered or different if they don't have the satellite cells that I was telling you about. And then finally, I want to talk to you about another component, which is very important with muscle. And this is one you all everybody knows about and that's mitochondria. So mitochondria, every high school student or everybody has at some point in their life heard this thing that, oh yeah, mitochondria powerhouse is the cell. And the mitochondria exists in all our cells across the body, not just muscles. But with that muscle, there are a large number of mitochondria. Because if you remember, I said that the [inaudible 00:21:23] mirror, the molecule motors, every time they're contracting, they are using a lot of energy.
Dr. Sudarshan Dayanidhi:
So pretty much all the food that we eat, whether it's carbohydrates, fats, proteins, they all get broken down within the mitochondria. Similarly, the oxygen that we are breathing, it trickles down within, into the mitochondria and the mitochondria have these really cool evolutionary structures that we are essentially using to create energy, but what those structures are doing or what those protein complexes are doing is that they're taking the food that we are eating and oxygen, that we are breathing to create a sort of a battery or a charge, if you will, and using the charge they're able to create energy and as you can imagine, if you need a lot of energy, you need a lot of mitochondria. And so a lot of us, when we train for events, we sort of like, let's say we are training for a marathon or a half marathon, or we sort running more.
Dr. Sudarshan Dayanidhi:
These mitochondria will increase a number and that's sort of what allows us to be able to go from being couch potatoes, to being marathon runners. And these are very important organelles within muscle to be able to generate energy. And if these mitochondria are not able to keep up with energy demand or are not able to create energy efficiently, then that is going to lead to problems with our ability to be able to move without using a lot of energy. So I'll leave you with...
Theresa Moulton:
Wonderful. Thank you so much for the opportunity to be here, Dr. Omali and I are delighted to take our mitochondria to the big stage and think about what happens in humans as we exercise and thinking about specifically intensity and frequency of exercise, that is how hard do you exercise and how often do you exercise? So we are going to start with the first slide is the most complicated slide we're going to show you tonight. This model is basically a lot of the things that we think of as physical therapists when we're deciding how to best treat somebody with cerebral palsy. So tonight we're going to talk a little bit about the muscle and how we make impacts on that. And dose of exercise is one of the ways that we have a direct impact and Karen, and I just want to point out the importance of family here because the family is going to have a direct impact on the dose that is received as well as the community context. Next slide please.
Omali:
So we kind of want to build on what Surdashan was discussing and talk about some different ways that you might hear your therapist describe muscle. So some of those words might be strength, power, length, and endurance, basic strength refers to how strong are you. Can you pick up 10 pounds or can you pick up 20 pounds? Power has a little bit more to do with how quickly you can do that movement. So it's both strength and speed. So can you pick up 10 pounds in five seconds or do you have a little bit more power and can pick up 10 pounds in one or two seconds as Surdashan mentioned, when we talk about muscle length, we're really looking at how long a muscle is from the beginning to the end. And the way that we measure that is by looking at how far our joints can move. So is our elbow stuck a little bit in a bent position or can it get all the way straight? And then finally looking at endurance of our muscles. So can our muscles work for a prolonged period of time? Oftentimes we might think, can we run for five minutes or can we run for a half hour or going back to the 10 pound idea, can we pick up 10, three times or can we pick up 10 pounds, 15 or 20 times? And that's looking at the endurance of the muscle.
Omali:
So the next slide we're going to specifically look at muscle strength and muscle power. So how much can we pick up and how quickly can we do that? If you want to think about it that way. When we think about muscle strength and power, oftentimes what we're thinking about is resistance training or weight training. That might be the words that you're more used to hearing. There's been a lot of studies looking at strength and power training in children without CP. And these have consistently shown that it's safe to engage in weight training or resistance training, and that children can build muscle mass and build muscle strength and power in children with CP. There's also been a lot of research that's been done. It's not quite as consistent, but overall it does show that individuals with CP can still get stronger or build increase their muscle power. So there's kind of a busy slide, but basically these are the recommendations published by the national sports and conditioning strength and conditioning association for typically developing youth without CP.
Omali:
And currently the proposal is that this is also what individuals with CP use. When they're thinking about engaging in strength or power training, a couple things to point out here is the duration is up to 20 weeks. So that's five months. It's a pretty long time. And then the intensity is also fairly high. We use something called a one repetition max to determine how much or what the starting point should be. And this is something that your individual therapist can really help you figure out and determine for yourself. The last thing I want to point out on this slide is just the difference between training for muscle strength versus muscle power. When we talk about training for muscle strength, it's really about moving in a slow and controlled manner. And when we talk about training for muscle power, it's thinking about moving as quickly as possible. In individuals with CP it's been proposed recently that muscle power might be a little bit more impaired than muscle strength and that potentially we want to think about focusing on muscle power improvements in muscle power to see more effects, more functional changes. So if you're struggling going up and down the stairs, or if you're struggling getting up out of a chair, it might be more important to think about training for muscle power. So we'll move on to the next slide and go a little bit more practically speaking, what does this mean if you want to start weight training or resistance training? First, it's going to be important that you talk to your therapist about any modifications that might need to be made to ensure that you're able to do this safely and effectively, and also talk to them about determining what resistance might be right for you. As we saw, it may take up to 20 weeks or longer to see changes.
Omali:
So strength training or power training is good to be something that needs to be moved out of therapy, out of clinic hours, and be something that you can feel comfortable doing in your community or in your school or in your home. And this is also something that your therapist can help you figure out and problem solve. And then finally, there's... As Sudarshan mentioned, research is continuous, ongoing. So over time, there may be changes to the current recommendations. So just continuing to touch base with your local therapist may be a good idea in terms of determining what the right training regimen is for you is specifically to address your specific goals.
Omali:
So after looking at strength and resistance training, let's move on to looking at muscle length. So as Sudarshan mentioned as we grow, our muscles also grow in length, and it's very common in individuals with CP to develop contractures over time or to develop joints that don't move as far as they should. So knees may be stuck in a bent position, ankles may be pointed downward a little bit, and we need to figure out ways to help with that. Some research has shown that therapy or therapeutic interventions can have positive effects on muscle length and either preventing some of these contractures or improving some of these contractures over time.
Omali:
One intervention that's been looked at is use of a stander or standing frame. When all of the research was looked at that had addressed using this intervention, when it was all compiled together, the recommendation that came from it was that you would need to use the stander for 45 to 60 minutes, five to seven days a week to see improvements at the knee and at the ankle, at the hip so that they're getting straighter and on a better position over time, but you would need to do it for basically every day, 60 minutes a day, to see those effects, which is a lot. There's also been some research looking at combining passive range of motions. So that would be like someone else or a robot stretching you. And then also active motion. So you moving your elbow or your knee or your ankle on your own.
Omali:
One of the studies that looked at this implemented a program of 60 minutes a day or 60 minutes at a time, three to five times a week, where a robotic device would move a child's ankle up and down for about 20 minutes. And then that child would have to move their ankle on their own. And it was a cool system that was actually developed partly by Dr. Gaebler, it's called the intelligent stretcher. So the kids got to play little video games with their ankle while they're moving it around, but they saw some positive effects of ankle range and motion with that as well. So that was a lot of information, but again, what does it mean for us? We'll go to the next slide and kind of talk about that just a little bit more the practical side of it.
Omali:
So as a therapist, when I think about how to really work as hard as possible on preventing or improving contractures, what I want to think about is how do I build this into someone's daily life so that they can get in an ideal position as much as possible? So instead of encouraging maybe 10 to 15 minutes of stretching in the morning, instead, what I would encourage is that you try and wear the braces that have been recommended to you for 10 or 12 hours, or that you think about when you're sleeping, what position are you sleeping in because that's another 10 hours of your day. And that positioning yourself in these resting positions is going to be more important than getting that little bit of stretching in. Then also looking at the idea of actively moving, I think that's going to be also an important thing that I encourage my patients to do.
Omali:
So are there activities that you really enjoy doing? Is it maybe dance class, karate class, going to a swimming pool where you are moving your body through bigger ranges in motion in order to improve upon that? And then finally, I think what's really important for us to remember is that at this point in time, despite your best efforts of doing everything that your therapist tells you positioning yourself in really great positions throughout the day, you may still need surgical intervention at some point to optimize the position that your body is in or what you're able to do. And that's not in any ways a failure of those activities, it's more that we just need to keep learning more about how muscles in individuals with CP respond to stretch and what's going to be best over time for them. So let's go on to Theresa and she's going to talk a little bit about that endurance part of it.
Theresa Moulton:
Yeah. And I get to talk about out one of the most important muscles in our body, which is our heart, and thinking about endurance and cardiovascular health and movement and how that is related. And so we like what Kara did with some of the other muscles of our body, we start by thinking about what is recommended for any kids. And so as you may be aware, a number of professional organizations have recommended 60 minutes of daily activity for any kids, kids with diagnoses, kids without diagnoses. That's just part of being healthy as a kid. And there's a couple of ways to do that. So you could either do that in moderate ways where you might be swimming or doing lower impact kinds of activities or more vigorous ways. Maybe you play on a sports team or you run cross country or something like that where you're really losing your breath and maybe sweating a little bit.
Theresa Moulton:
That's an example of something that would be considered more of a vigorous activity. And so you have options for the kinds of ways that you like to move and like to have fun to get these kinds of exercise in. The caveat to this or something to think about is if you're starting from a place where you're a little de-conditioned. So we might say out of shape, or maybe it's not something that you've done as much before if you're trying to make some changes. If you're starting from that place where you get tired pretty easily, or you get out of breath pretty easily, we don't start with 60 minutes right aways. We would rarely recommend going from zero to 60 just like that. So you might start from 20 minutes or so, and thinking about more of the moderate kinds of activities that involve pretty big movements with lots of big muscle groups.
Theresa Moulton:
So things like swimming or even walking or hiking or something like that. And go to the next slide. So for adults, we also have recommendations and our recommendations are not quite every day necessarily, but thinking more about the week as a whole. Because we know as you start to have a job or do things, your weekdays and weekend might look a little bit different as you become an adult. And so we have some guidelines as far as minutes of activity. Again, kind of broken down if you do really vigorous activity where you work very, very hard, you don't necessarily need to do quite as many minutes in the week. If you like to do things that don't make you sweat quite as much, you have to do that for a few more minutes for the health of your heart. And really the bottom line especially for us adults that spend so much of our day sitting, oftentimes just move more and sit less.
Theresa Moulton:
I think it was a public health campaign recently that said that sitting is the new smoking. Now that we've gotten so much better about having the smoking rights in our country a lot lower. Now we just need to stand up and move a little bit more as some general recommendations. And then on the next slide, we also have some specific recommendations for individuals with cerebral palsy, aerobic activity. And so these are published guidelines, not by me, but by other experts in the field as well that take some of these activity recommendations for anybody and try to tailor them a little bit and just say that this is what is still a good idea, even if you have cerebral palsy. So those recommendations are two to four sessions every week, at least 20 minutes in the session and a moderate intensity. So maybe not fully out of breath, but losing your breath a little bit and feeling like you're working.
Theresa Moulton:
And really at the end of the day, reducing that sitting around. We classify that or call that sedentary behaviors. So that just means where you're not getting your heart rate up at all. You're not doing a lot of movement. And so the bottom line is doing something is better than nothing. And the reason that there is no duration on this, I didn't say do this for 20 weeks. Like Kara said, do strengthening for 20 weeks to get stronger is because we really see these as lifestyle changes. If you want to keep your heart healthy over your lifespan, you want to be thinking about making these changes for the rest of your life. And on the next slide, we just have some general recommendations and kind of take home messages and action plan. What are the couple steps that we should all be thinking about taking in terms of those lifestyle changes?
Theresa Moulton:
And so I would really think that the first thing to do is think about what you like doing to move. If you like doing something, it's a lot easier to do it every day. So what kind of movement do you enjoy? Kara talked about things like dance or karate. Maybe it's more social when we're not in a pandemic and you like to meet other people to exercise together. Maybe you like to lift weights and do that more regularly, or go to the park with somebody. So thinking about what you like doing, and then what your family likes doing or what your friends like doing and making it a joint venture. Habits can be easier to change when you know you're in it with somebody else. Aim to move every day and try to get out of breath every once in a while, and maybe more than every once in a while, a couple times a week. And then just keep at it, keep doing those things to keep your active lifestyle going for long term health benefits.
Omali:
So then the final slide kind of builds on what Theresa was just discussing there, but really for all of us, if we want to improve our physical fitness, if we want to get stronger, if we want to be healthier, we really have to think about lifestyle changes. So the recommended dosage for a lot of these things, it's going to be way too much to complete just during therapy sessions. It really is things that have to be done at home, at school, in your community and become a part of our daily lives. So then the big question is how do we do that outside of therapy sessions? I think we all know it is a little bit tougher right now being stuck at home or being in a position where you're really not interacting with other people as much. So it's a good time to think about are there some virtual classes that you can join or does your family as a whole maybe go for a bike ride together?
Omali:
There's some really great adaptive bike equipment that you can look at getting that there's some different programs or different grants that you can look through. And actually Shirley Ryan Ability Lab has a program every year where they help to look for some of those bikes and what might be best for you. And then also in addition to kind of building up the physical fitness part of it, when we think about our muscles and improving the length of our muscles, that's also another really good chance to build it into your daily routine of are you coming home from school or finishing virtual school and watching half hour of TV, would that be maybe a good time to get in your stander or wear that knee brace for a little bit longer?
Omali:
We're really lucky to have Lark and their family talking a little bit later, and I think they will hopefully have some really great ideas and suggestions for us as well. And then I think we also so have a little bit of time right now to maybe come back as a panel and answer any other specific questions and hopefully address this a little bit more.
Rachel Byrne:
Hi, and thank you and welcome back to all our speakers. Thank you so much for such wonderful talks and we are actually getting lots of questions in so I hope you're ready to answer some of these. One of the first one that has come in is talking about muscles. And the question is how does spasticity affect muscles? How are my muscles different compared to if I didn't have spasticity? Dr. Gaebler, can you just kickstart us off with that question?
Dr. Deborah Gaebler-Spira:
Right, I'd be happy to. Spasticity is easy to say but it's a little bit harder to get a handle on. The definition is that spasticity is a velocity resistance to stretch. So when you have a muscle that has spasticity, when you move quickly, that muscle will react in a way that is a little exaggerated. So what you would feel as a person with spasticity is that when you start to move quickly, your muscles may appear as if they're not as able to have a greater range of motion or as greater range of motion and they also may feel tight. It used to be that there was an old adage that you couldn't strengthen a spastic muscle, but that's now been very much debunked.
Dr. Deborah Gaebler-Spira:
So we know that muscles that have some spasticity can have the benefits of exercise, but typically the spasticity will affect the movement because it will not allow as smooth a trajectory and will have a reduced range of motion when the child is or when the person is moving. So let's say, for example, you start to run and if you're starting to try to have a heel toe, you may start running just on your toes, or you might have a more narrow base of support versus a wider base of support. And that's what will sort of affect the movement. I'm going to ask maybe Sudarshan to comment a little bit more about his exploration on the microscopic or the tissue level changes if he knows, or if it's in development.
Sudarshan Dayanidhi:
Sure, I can do that. Thanks, Deb. So I mean, the short answer is we don't have a clear idea of the level of microscope things, the things I was talking about. What we know is that there are changes for sure that happen because when we look at muscles from kids from having surgery that had spasticity, that are taking spasticity and yet there are contractures. In some cases, [inaudible 00:45:26] they need surgery. And so the two things which Dr. Gaebler mentioned is in terms of movement, the muscles becoming bigger and the range of function, those things I think might have an impact indirectly at their [inaudible 00:45:43] and how they're functioning. But there are people looking into it and hopefully in the next few years, we'll have more answers. There are people in Belgium who are trying to do some of the biopsies in the younger kids who are not having surgery to figure out what it actually looks like. And so hopefully within a few years we'll have that answers of how that changes as kids are growing.
Rachel Byrne:
So I think that leads actually very nicely into the next question, which is, does therapy or does exercise and all these different things that we've spoken about with movement, is that leading to changes in the muscle or is it leading to changes in the brain? Dr. Gaebler, I might let you start that one as well.
Dr. Deborah Gaebler-Spira:
I would say it's probably going to be both. I know that we can absolutely talk about the impact of muscle, but we know that the brain is also very adaptable. And in terms of motor learning, in learning a skill that is consistent that even the oldest on this panel can still learn motor skills. And so that you can affect the change at a brain level, or at least at a learning level. And certainly the idea of neuroplasticity is something that is very important. And Theresa, you might have comments on the neuroplasticity and then maybe we could bump it to Sudarshan on the muscle.
Theresa Moulton:
Sure. Yeah. So definitely, as you mentioned, Dr. Gaebler, if you take up a new activity, your brain needs to respond differently and change in order to become skilled at that activity. So as we develop motor skills, whether or not we have cerebral palsy, as we get better at them, that's a reflection of our brain doing a better job and our nervous system becoming better at being able to do that task. And so we have as a scientific community, different opportunities to kind of look at that using different kinds of imaging. And so there are a wide range of studies that have looked at how the brain changes when we exercise more. And so I think that it is very encouraging that what we need to do is continue to keep moving and keep moving in ways that we can sustain because this is again where dose comes up, the more that you do something, the more potential you have to impact those brain changes.
Rachel Byrne:
I think that's so important. And I just want to remind everybody if you've got any other questions, please put them in the chat function because we are here to answer as many for you as possible. And so Sudarshan, just expanding on that a little bit when it comes to muscles and the change that may be occurring in them through therapy. I know that we are still sort of at the forefront of some of this research, but where are we?
Sudarshan Dayanidhi:
So I think a lot of people are looking at what happens to muscles after therapy. So even though I would be talking at the microscopic level, people are measuring things in other ways using imaging for example or other ways in which you can measure strength and power. And clearly therapy has a impact on muscle and the brain obviously is controlling the muscle as well. So I would say in terms of some of the therapies, the goal is to actually help [retro 00:49:18] the right muscles to be able to make the muscles bigger. So from a therapeutic point, it's pretty much the same thing that I was talking about. You're helping the muscles grow in some days and prevent contractures from that.
Dr. Deborah Gaebler-Spira:
Rachel, I'd like to add one more thing that I don't think you can underestimate the impact of the mood boost, and also the feeling of wellbeing. There have been many studies especially in adults in terms of fatigue and pain that that can be reduced after exercise. And I think there's a lot of overlap with the release of improvement of wellbeing. So I think that's an important aspect that we don't want to ignore.
Rachel Byrne:
Absolutely. And Kara, actually, I might go to you for this next question because it sort of is leading on from that as well is how can someone with cerebral palsy exercise at home during the pandemic? I know you spoke about some potential different options, but it is really hard right now. And as Dr. Gaebler just said, how important is our wellbeing for our mental health to make sure that we still are exercising? What are some of the options for people when they're at home?
Omali:
Yeah, so there's a plethora of options as the easy answer for me. But I think if we're talking about specifics, maybe one arm is stronger than the other or one hand is functioning better than the other and you can't necessarily use dumbbells in both hands. You can think about filling a sock up with rice and putting it around your wrist or getting some cuff weights to use. You can think about going outside with your family and just going on a walk around the block, you can... What are some other modifications? Sometimes we'll use a backpack and put some books in the backpack and use that as a weight instead of using weights at a gym.
Omali:
And they can do some strength training with that. If you're in a wheelchair, you can definitely do a lot of the strength training activities as well. And then you can build that endurance piece up by thinking about, all right, normally you might go outside and you do two blocks. So can you slowly build that up to three blocks, four blocks. Even during the winter months, I know in Chicago that's a little bit harder to do. So it may be that you think about doing a little bit more the strength training piece of it in your home during the winter versus that getting out and doing some endurance stuff, Theresa, maybe you have some other specific suggestions as well?
Theresa Moulton:
Yeah. One thing I think about this pandemic, there's a lot of things that we could say negative about it, but there is some silver linings in what is available remotely. So there are a lot of organizations that have online training options. So in our community, I know the Great Lakes Adaptive Sports Association is one example of a community based program that has continued in the pandemic and is connecting in ways that mean that you don't need to go to their gym, that they can find ways to help you train while you're there.
Theresa Moulton:
Also, remote healthcare is continuing so you can still ask your physical therapist, "For me, what are the muscles I should be working on and problem solve?" Like Kara said, I have rice, I have a sock. I don't need a gym to do that one exercise that we talked about. So I think it's about kind of deciding what it is that you need. And then there are some options that are kind of ready made available. And then there are other ones that you can get support from your healthcare provider to see how to tailor some of those things. But it has really been nice to see how many things have emerged that you don't necessarily need to leave your home for.
Omali:
And I also know there's been some organizations that maybe aren't typically geared towards exercise groups or activities to do at home. I know there was a ballet program that doesn't typically do home programming, or even in person programming, but they had time. So they set up a couple different dance experiences with Broadway dancers, specifically targeted towards individuals with CP or individuals that aren't able to move quite the same way that other people are able to move. So, as Theresa said, I do think with the pandemic, if you do some searching, there's some really cool organizations that are opening up some unique experiences for everyone right now.
Rachel Byrne:
Yeah. I think it is really amazing. I'm excited that you actually brought up the ballet because I think that is for everybody as well, because there's questions coming in and Theresa, I'm going to ask you this question as well. We've spoken a lot about mobility and a lot about movement and these questions are coming in, what if my child is in a wheelchair and is unable to stand? I know Kara, you touched on it briefly, but could you just expand a little bit further about some of those activities that you can do if you are in a wheelchair or if you have some more severe mobility difficulties?
Theresa Moulton:
Yeah. Thanks. I'm so glad that question came up because when we consider exercises, I think sometimes we have a particular image that comes to our mind and it doesn't fit everybody. So some examples that I think work great, even for individuals that use a wheelchair for their primary mobility, is anything that can make movement a little bit easier, such as swimming. So when you get into the water, it's a little bit freeing, it's easier to get your arms and your legs to move in ways that it might not if you tried to stand and walk across a room. So that's one example.
Theresa Moulton:
Something that's a little bit less widely available right now that I'm really excited about is a running frame. So it's kind of a supportive way to be able to exercise in a pretty rigorous way, a vigorous way, where it's kind of like a tricycle without pedals. And so you have trunk support, you have ways to keep your body safe, but you can still move your legs quite quickly. And it's not about running form per se, you can move them however they to move yourself forward. And so that's an example of a device that provides an adaptive way of moving and participating in the community that I'm pretty excited about right now. And I'll turn it over to Kara for some other comments.
Omali:
Yeah. I was just going to comment as Theresa said, a lot of people are still-
Omali:
Yeah, I was just going to comment, as Theresa said, a lot of people are still receiving or able to receive some of those therapy services through telehealth right now. So it's a really good question to ask your individual therapist as well, and going forward. If it's not something that you're looking at, how can we do right now, but how can we do in three months from now, how can we do in four months from now? There's lots of adaptive equipment that you can look at getting. So, as I mentioned before, there's different adaptive bicycles, and there's some different grant programs that can help to pay for those, different gait trainers.
Omali:
So, support of walking devices that insurance can sometimes pay for. And then also, as Theresa kind of mentioned in her slides, any increase in movement is good. So it doesn't necessarily have to be picking up a weight. If your child is a little bit more impaired and really needs more help to move, could it be something as simple as when they're sitting in the wheelchair, you toss a ball and they just even move their arm through small ranges to kind of hit that back to you, really any movement that's more than they typically are doing can count as exercise.
Dr. Deborah Gaebler-Spira:
And Rachel, I want to mention, I've seen studies in adults in Japan, where they do ballroom dancing in wheelchairs and they can, create a cardiovascular response. So I think that there are options. Another option I know for folks that aren't able to stand can even be horseback riding there's... I think it's just, it's sort of adaptive, but also things that call to the person that really feeds their... As I say, it isn't just to move, movement should be joyful. So you have to find something that sort of, it's like spark joy with your movement.
Rachel Byrne:
And I think we've spoken a lot about movement and the different types of exercise. We've had some other questions that have come in, that are more about sort of some of these intensive therapy options. And one of them in particular is asking, "So what are some of the nonsurgical options?" I know in one of the slides, we talked about some surgical different procedures that may actually have to end up happening, but what are some of the other surgical options that you might pair with some short term therapy? Dr. Gaebler do you have any sorts of overviews of what people can do particularly [crosstalk 00:58:32] was about, if I have spasticity, how does, what do I do?
Dr. Deborah Gaebler-Spira:
Right. Typically, for the rehab doc, you're always in communication with the team. So it's never just a unilateral decision; the parent, the child, and the therapists and the surround. What do they need to be able to do? So I think that in terms of options, modalities, I think modalities can be very helpful, vibration, that there's sometimes cold that will help muscle tone. There are a lot of oral medications to consider if side effect profile doesn't impact. And if you feel that it would improve a goal. There are neurolytics in terms of specific focal injections that can be done with some of the alcohol funnel toxins. And I think that even things that... I think exercise itself can reduce the stretch reflex, and can improve the reactivity of the muscle. So I think that there are a lot of options to reduce muscle tone to gain more range of motion, so that you have a more complete ability to move the limb or the extremity.
Rachel Byrne:
This next question's just come in. And it is in relation to botulinum and toxin and using botulinum and toxin in combination with, say serial casting. Does anyone want to sort of comment on that as a sort of a mode of actual treatment?
Dr. Deborah Gaebler-Spira:
I would, I'd like to say that, I'm very big on heavy muscles to be strong and muscles activate. So this was one of the reasons we investigated looking at a stretching device that would train the muscles and strengthen the muscles, and not just immobilize the muscles. It is clear that you can gain range with serial casting or with a botulinum toxin. And the question is, what is the most effective for each individual child? I love to keep the muscle out of immobilization, so that the muscle's always moving, but it obviously not... If there is a contracture, then a certainly a serial cast is an option that may delay or even avoid a surgical procedure to that joint.
Rachel Byrne:
And Sudarshan, I'd like you... If you could just elaborate a little bit more when we're thinking about what's happening to the muscle during a stretch. When we're thinking about serial casting, that's what it's doing. It's sort of stretching out that muscle and trying to do it, or if we are trying to even think about it more active device, like similar to the one that Dr. Deb Gaebler was talking about earlier.
Sudarshan Dayanidhi:
Yes. So when I was talking about satellite cells, I was talking about activation of satellite cells, and you're talking about re running or whatever activities cause [microtage 01:01:48] But in reality, when you think about muscle growth, what happens to your bones growing. The bones bring a stretch on the muscle, and the muscle responds by activating these satellite cells. And so stretch is a very strong activator of satellite cells and that's well known. So, that's sort of partly the way we think muscle growth is using that stretch response.
Rachel Byrne:
And so this next question I want to ask actually to Kara, because we talked about telehealth and all these different options that are available. And obviously, in Chicago, you also have a lot of wonderful pieces available. Are they... Can people access that right now? What's actually happening if they want to be able to access some of these programs?
Omali:
Yes. So if you are in the city or near the city, Shirley Ryan AbilityLab is open for treating inpatients and outpatients currently. And some of the things that we have, our main site that are pretty unique. We have the Lokomat, which is kind of like a full body robotic system over a treadmill that can help you simulate walking in a better pattern. We have prosthetics and orthotics available still. So looking at different brace options or different, looking at fabricating custom braces for you. There's within outpatient, we also have some different things to work with younger kids. So we have something called the Go Baby Go evaluation. So looking at developing, using power wheels to create early mobility devices for some of our youngest patients, two and three year olds, which is maybe a fun thing to do in your home, maybe not. We have functional electrical simulation, so different devices that we can attach you to, to specifically target particular muscles in your legs or your arms that are connected to virtual reality gaming or different programs like that.
Omali:
And then there's multiple outpatient sites that are also still open. They're taking precautions. So seeing less patients at a time than usual and making sure everyone is masked and spaced out. But they still are open for you guys to come in and get therapy treatment in person right now. Some of the therapists are also doing a combination of telehealth visits and in person therapy, depending on what each individual needs. And then also as I mentioned, looking at equipment that might be helpful for you to have it in the home, whether that is a device that will help you walking, if your wheelchair needs an upgrade, that we're still having a clinic open for that. So, if there's a piece of equipment that your physician thinks that you need, then you're able to come in and be evaluated for that. Sometimes in person, sometimes over telehealth, depending on what type of equipment it is.
Rachel Byrne:
And for those who are watching who are outside of Chicago. Right now, is there an...does Shirley Ryan AbilityLab for example, have sub labs anywhere else across the country, or are they able to access any of these pieces?
Omali:
So we're primarily located in Illinois, but there are great rehab facilities all over the country that I'm sure if you talk with your physician or look online, you'll be able to find some really really great resources in your community. And then I don't know if maybe Dr. Gaebler or Theresa want to talk about some other resources online that you could access that aren't necessarily Shirley Ryan AbilityLab specific, but maybe some other resources that might be helpful.
Rachel Byrne:
Theresa, would you like to elaborate on some of those other resources that people can access if they're from other parts of the country?
Theresa Moulton:
Yeah. So I guess in terms of activity and movement, is that what you're asking about or in terms of services?
Rachel Byrne:
Oh, well, both really. I think the question came through just saying, "Okay, I'm not in Chicago," but obviously they love what they're hearing, how and where can they access some of these things?
Theresa Moulton:
Yeah. So there is the national, like it starts [NCHPA 01:06:18] The National Center for healthy... Dr. Gaebler can you help me on the last part.
Dr. Deborah Gaebler-Spira:
[crosstalk 01:06:30] We decided you could never remember how to say it.
Theresa Moulton:
Yes. I don't know the correct way to say the acronym or currently what the acronym exactly as far, but they're actually based in Alabama, but they are really focused on having a network of opportunities for people that might need adaptations in order to access healthy living opportunities, as it relates to exercise. And so, they actually have some really nice advocacy resources. So even if, they may have locations that you could go to that are already set up. But they also have information about how you can talk to your gym about what your needs are in order to be able to access that space. And so that's the one thing that I might add as like another opportunity to perhaps create what you want in your own community, if you don't happen to live in Chicago and, or have access to a metropolitan area with that type of a system.
Speaker 1:
And we'll make sure that any of the resources or anything that we've spoken about during the panel, we'll make sure that you can share them. We'll put them either in the description of this particular video, and we'll also share them over our social media. Now I've got two more questions before we move to the family panel. Because, I think they're both really important. One of them is actually about sort of intensives. So, we've spoken about trying to change the muscle. We've spoken about doing all these different things and we've spoken about dose. What about, I suppose, what is the evidence to show that intensives work or don't work? And, when I talk about intensives, I think they're talking about like a two week intensive therapy block, for example. Kara, would you like to start with that one?
Omali:
So I think it kind of depends on what your current goals are. So, I work a lot in inpatient rehab where it really is intensive therapy. So three hours of therapy a day, six days a week. And typically we would recommend that after a big change. Individuals with CP typically come to us after surgical intervention. So whether that's muscle lengthening or bony surgery, they come to us after they're out of their cast and everything. And we see them for two to three weeks, two hours of PT, an hour of OT every single day, they're up, they're moving. And in that case, I think, the idea of as much as possible, right after surgery they capitalize on those gains and really prepare you for going back home, is going to be important.
Omali:
And then, in terms of research and evidence of should you do four weeks of therapy three days a week, or should you do three months of therapy once a week? It's pretty mixed based on what you need. So it's going to be something, a conversation that you really are going to need to have with your individual therapist, with your individual physician to figure out what the right thing for you is.
Rachel Byrne:
And this is a question, and I was actually going to ask Sudarshan, but I think his connection's just being lost. So Dr. Gaebler, I'm going to actually ask you this one. Is, when we are looking at this, so we've done an intensive we're seeing some gains and some changes, are they long lasting? Like how long would some of these changes last?
Dr. Deborah Gaebler-Spira:
Well, we hope it's a feed forward mechanism that as you are obtaining skills, you're continuing to praxis practice and continuing to use them. And I think that the brain does act if you use it or lose it, you want to use it and perfect it. And, so that whatever you have gained, you need to continue on. Now, the issue for the kids is as they grow, there may be a change in body mass and the change in alignment that you all always have to be attentive to so that you can continue that progress. I think that there is a natural history of improvement that we understand, and we know, and sometimes a fight is just not to lose a skill. And so, I think it's very important if you have gained a skill and if you start to lose it, that that's a perfect time to reconsider your program and think, do you need to intensify, do you need to change a medication or do you need for further intervention?
Dr. Deborah Gaebler-Spira:
So it's very, it's a very difficult question, but I think that we want to see maintenance and continued use of skills. One thing I think that as I said early on, when we're thinking about the kids that we see in adults, we always want to consider what are the research studies that are available to them so that we can try to push that envelope. I can tell you a 100% we're always trying to do more intensive programs and not just in motto, but in speech and language. So to do that, it's really, it takes a team that such as what we've put together here tonight. I think... I thank you guys for coming out-
Rachel Byrne:
Absolutely. I can't thank you all enough, actually being here this evening and before we move on our family panel, cause I'm very excited to introduce everybody to the Johnson family. Is there any other final thoughts Kara, Theresa, that you might have?
Theresa Moulton:
I have one thing that I'll just mention and to piggyback off of what Dr. Gaebler just mentioned about. The gaps that we still have and the importance of continuing to partner with people with cerebral palsy across the life span to really understand, where we should be intervening, how what we're doing right now is working how we can make improvements and what we should change about the way that we approach individual situations. So another hat that I wear is helping to coordinate the cerebral palsy research registry, which is just a way to kind of matchmake. People that want to know more about research and get involved, with the scientists that are doing it and the clinicians. And so I think that's the way that we're going to continue to move forward is by working together. To find good answers to the right questions.
Rachel Byrne:
Absolutely. I think that's perfect. Almost ending if you have, Kara, obviously-
Omali:
No, she wrapped it up perfectly.
Rachel Byrne:
Right. In saying that I have just had one more question come through and I want to make sure it gets answered because obviously we do have such wonderful people who are joining us here this evening. And it's a question for the panelists, thinking about physical therapy based on fascia manipulation. So, looking at the fascia and looking at manipulation of the fascia. Kara, any comments or thoughts on that.
Omali:
I think every part of your body is important, and we need to address all of the components. So looking at skin, looking at fascia, looking at muscle, looking at bone. I don't have specific experience, and I have not looked into the research of that recently. I don't know if Dr. Gaebler or Theresa have other input, but I think, I have not done very much with that, but it's a part of your body. So it's a okay thing to look at.
Dr. Deborah Gaebler-Spira:
Yeah. I think that there's quite a bit of understanding about the collagen being stiffer for children with CP and also adults. And so that fascia manipulation, I'm not sure what the mechanism is exactly, but it is used for pain relief. And especially in trying to redo you some of the tightness and Theresa, you may have other thoughts about it.
Theresa Moulton:
My comment was just going to be that I think that is a perfect example of something that we really need to understand more about. That there is perhaps some promising case studies or anecdotal reports. I have not seen, we talk about levels of evidence. I haven't seen the highest level of evidence for that kind of an intervention. And so, I'd be cautiously optimistic that if you're being recommended or if you're seeing benefit that it's real, but we just don't have enough information to say one way or the other at this point.
Rachel Byrne:
I think that is actually such a real, important thing. And actually before we move on and I'm sorry, the Johnson family is waiting and I really do want to get to them, but it, the whole concept of the best level of evidence and being able to judge what is and what isn't. Theresa, can you just elaborate that on a little bit more, because it's really hard for everybody. If they're on the internet, they're searching potentially a therapy or something that you've seen. How do they know what level of evidence is backing up those claims or behind what's being said?
Theresa Moulton:
Such a wonderful and important question. And I'll try to keep... It could be a big topic, so I'll try to keep it on a basic level. So it kind of spreads a spectrum, from, my next door neighbor said that their friend benefited from this, to, we have thousands of people that have received this intervention. And we understand that if you have these characteristics, you will benefit and you will get better. And then everything in between. And really we don't... We have very very few things if anything in cerebral palsy, that's of the thousands of people have done this, we know for a fact it works. And we have kind of word on my neighbor's aunt did this. And so we just want to push ourselves in the direction of randomized control trials; are the things that we really need to be able to stand over.
Theresa Moulton:
And that means that you have a group of people and you randomly decide, do you get an intervention or don't you? And in a blinded way at the end of it, you have somebody say, "The thing that we wanted to make better, the people that got the intervention, they all got better. And those that didn't get the intervention didn't." And that's really the best that we would be looking for is, if you see something that has passed the test in the rigor of a randomized control trial, that's what I would be looking for in the interventions I'd be considering.
Rachel Byrne:
Well, I just want to say thank you again to Theresa and Kara, and obviously Sudarshan who unfortunately dropped off there at the end. But, I just want to say a huge thank you for spending the time with us this evening, and giving us such a wealth of knowledge and so many new things. I'm sure everyone has been enlightened as of I. But now, I would actually like to invite the Johnson family and I'll invite Dr. Gaebler to stay on with me as well. And we are really excited for the Johnson family to be joining us. We have this evening... We've spoken about obviously a lot about the different things that are happening when it comes to the physical things, as well as what's happening in the clinical setting or what's happening in a research setting. But, we really want to know, well what's actually happening in real life.
Rachel Byrne:
And I think that's some of the most important things that we can actually discuss. We can talk about all of these things potentially in a theoretical framework, but we want to know what's happening in real life. And the Johnson family is a family who is, has been very involved, obviously in research actually from the very beginning.
Rachel Byrne:
But yeah, we'd love to have them join us if we can. And very excited to have... And I'll do an introduction, here. So on screen, we have Luck in the middle. Luck, thank you so much for being here. We have mom Angela, and then we have dad, Amand. And then we have, to just out of frame, their little brother Asaf. So thank you so much for all of you being here. And actually Luck, I'm going to start off with you because you've listened to what we've been talking about this evening and you have participated in a lot of these different, I suppose, research studies and you are living what we're talking about. How has your experience been within research? What are some of your experiences, actually before that I'm going to take a step back. Can you just introduce yourself to everybody and let them know, who you are and what you love to do?
Luck Johnson:
Sure. Hi, My name is [inaudible 01:19:37] Johnson. I'm 16. I am in Clinton High School. I'm currently involved in ballet and horse back riding.
Rachel Byrne:
And I really love that you're involved in ballet and horseback riding, because we've heard obviously from everyone on our panel, just how important [inaudible 01:20:00] Can you dive into a little bit deeper? How did you get involved in ballet?
Luck Johnson:
I was involved in ballet to get through Dr. Gaebler, she was the one that recommended to my mom and my mom took me.
Rachel Byrne:
And so when you are doing ballet, and I've heard that you are actually not just good at doing ballet, but also a wonderful choreographer. When you are doing ballet, what's some of the most... What are the benefits that you've seen? Have you had any physical benefits that we've spoken about this evening?
Luck Johnson:
The benefits school ballet are stamina, strength and the freedom to express myself through movement.
Rachel Byrne:
And I think that's, wonderful to hear actually coming from you to say, "Yes, when I'm doing ballet, these are the things that are happening and this is what's changing in my body and how it's making me feel." Dr. Gaebler, obviously, you have been a part of the Johnson's Family life and Luck's life for a very long time. Angela, I'm going to go back to you and get you to sort of introduce yourself as well. But, let's start back at the beginning around when Luck first got her diagnosis of cerebral palsy.
Angela Johnson.:
Yes. When Luck first got her diagnosis, it was, I think she was about nine months old, prior to us actually having a specific diagnosis. She was already receiving services through early interventions because she had not made her various milestones. She had excessive drooling. She wasn't holding her head up. Once we got the diagnosis, husband and I we had our 24 hour pity party. And the very next day we looked at each other and said, "Okay, time to roll up our sleeves and dig in and see what this thing about cerebral palsy is and what that means for us and for our daughter." And we assembled our entire family, grandparents, aunts, uncles, cousins, godparents, friends of the family. We were fortunate to have our early intervention therapists come. And we just had a whole discussion about is cerebral palsy. What would life look like for Luck?
Angela Johnson.:
Because none of us knew it was all brand new to us and they gave answered questions about what cerebral palsy was, what certain expectations we could have from Luck. At that time, of course, it was too, she's too young to truly know what the future would hold. And then from there that led us to getting in touch with Dr. Gaebler. Dr. Gaebler became her doctor. And a lot of the things that were mentioned tonight, we've tried. We've tried the horseback riding, ballet, swimming, yoga. We take walks as a family. We do running together as a family. To supplement speech services, she's currently taking voice lessons to help with her articulation and voice control, breath control. So yes, we've done it all. It's hard to know exactly what one specific thing was the thing.
Angela Johnson.:
Personally, I think it's been a combination of everything. Not only has it helped her as an individual with cerebral palsy in terms of her physicalness, but also her mental health, giving her activities that are comparable to what her peers are involved in. And just giving her a social life as well. There's some of her very good friends that she's met through some of the activities that she's been involved in and just keeping her.
Mrs. Johnson:
Involved in and just keeping her moving. And I think it's just been overall beneficial for her. It's been beneficial for us too. It keeps us moving as well.
Rachel Byrne:
Absolutely. I love how connected you are as a family and really how much of this team that is behind you. And Dr. Gaebler, I might hand it over to you actually, because you know, obviously, the Johnson family far better than I do. You've known them for a very long time.
Rachel Byrne:
When you first looking at... When you first met Lark, and you were thinking, "All right, what is available for her? How can I give this family what they need?" What were some of the first things that came to mind?
Dr. Deborah Gaebler-Spira:
Well, I think I always knew that Lark was never going to be lonely. Because there was rarely a visit that didn't include at least three or four adults and a couple of others. So, we had a lot of great input. And even though we're talking about activity, I'm looking at the whole child. So I'm also thinking, "Is this going to be a child who does their homework? Are they going to get up and be independent? Are they going to be able to fix their own meals?" And from the beginning, I had the sense that there was a lot of motivation that was internalized within the group.
Dr. Deborah Gaebler-Spira:
So for me, it was almost, and I don't know if I've said it, "Oh, you don't have to do so much." That there is such a robust enthusiasm, that it's contagious for me because I'm very happy when I have someone who's motivated to say, "Oh, well, did you know about the Nutcracker? And they're going to be having kids in the Nutcracker. And can I have you talk to my..." At that time we had a researcher in dance. I think you even did our dance research with [inaudible 01:26:06]?
Mrs. Johnson:
Yes.
Dr. Deborah Gaebler-Spira:
Yeah. Yeah.
Mrs. Johnson:
Yeah.
Dr. Deborah Gaebler-Spira:
And so that, for us, it was a very natural connection to say, there are some families where I may not offer every research study or every intensive camp that we do, but judging by the family and Lark's ability to handle the volume and the complexity of a program, it was like the dream team.
Rachel Byrne:
So we talked about the dream team, Lark. And obviously, you kind of do have the dream team around you. Obviously you've had Dr. Gaebler as your physician. You've got an incredible mom and dad that are sitting either side of you. So I do have to ask one question though, because Dr. Gaebler did mention, do you do homework? Because that was her priorities. And I'm sure that that's happening.
Lark:
Yes. I do do my homework, and my dad can testify that we have [inaudible 01:27:10] every night.
Mr. Johnson:
Yes.
Rachel Byrne:
Yep. And you're at that age, I suppose, where you are thinking about lots of different things, but I want to ask you, what has it been like being part of research? You know, it's a very unknown thing for a lot of people because they don't get to experience it. But what's that experience been like for you?
Lark:
I enjoy being a part of research. I enjoy changes and to find more information about cerebral palsy that can help other kids that come after me.
Rachel Byrne:
I think it's such a wonderful thing to be sort of giving back, as you have, to so many people, and we don't know enough as we've learned this evening. There's so much more for us to learn. So we actually can't thank you enough for participating and doing all those different things. It really is wonderful to give back. Have you seen in their research studies as well, have you seen a personal benefit? Has there being the changes that the research was hoping to achieve? Did you see any of that in yourself?
Lark:
Yes. I have seen changes from the research study. I have gained and enjoy from the research study.
Rachel Byrne:
If there was one study that you could pick that you would love a lot of other people to have access to, or you would love to see become part of commonplace when it comes to therapy, what would it be?
Lark:
That's the aha one. But I would have to go with ballet. I would love for there to be more opportunity for kids with disability, to be a part of ballet research. The Lokomat [inaudible 01:29:34] the Lokomat.
Rachel Byrne:
And can you just describe for the Lokomats, for those of you, and I know, I think there brought it up as well, the Lokomat or maybe it was Kara, as an option. Can you explain what the Lokomat is? So for those that who haven't experienced it, what that sort of therapy looks like?
Lark:
The Lokomat is a treadmill that helps kids walk and while they are walking, they are able to play like interactive games and the games actually improve the kids' walking.
Dr. Deborah Gaebler-Spira:
And Rachel, I can say that is a randomized controlled trial that we're working with the Canadians between Toronto and Glen Rose. It's a randomized controlled trial. And Lark was lucky that she got the Lokomat because the other arms are conventional, wait list or a combination of Lokomat and more conventional physical therapy. So, that is a very important study that Lark helped us with.
Rachel Byrne:
[crosstalk 01:30:52] study right now. So we're talking levels of evidence that Teresa was talking about earlier. It's one that's in the process of looking at what evidence is behind this and we'll be able to have, hopefully, those results shortly.
Dr. Deborah Gaebler-Spira:
Right.
Rachel Byrne:
Now, we've got some questions coming in. They want to hear from dad. They want to be like, all right, what's your [inaudible 01:31:16] been like? How have you been, and I think a lot of the time, obviously as mothers, we do get to go to the appointments and do all these different things. How have you been involved with all of the different research and appointments?
Mr. Johnson:
Well, from day one, even when Lark was a baby, we would just kind of get on the floor and just work on movement. And those were some of the things that were mentioned to us that we just, we start early, if you start early and you kind of incorporate a routine of movement and stretching, it gets the body used to that type of movement that is not naturally doing. Aside from being daddy Uber, in house tutor, doctor appointment, dad is here, we're here. And we're focusing on trying to make things as much normal as possible. We teach life. We were teaching Lark life lessons through everyday living and just normalcy in terms of getting up in the morning, brushing your teeth, fixing your own breakfast. These are life skills that Lark has actually incorporated on her own and that she's doing now. So we try to continue to encourage that type of independence.
Rachel Byrne:
And so I'm going to ask this question of both you and Angela. If you could give any advice to your, I suppose, your younger self. So when that diagnosis was first being given, and if there is a father who's watching this for the first time and who just hasn't nearly diagnosed child with cerebral palsy, what advice would you give?
Mrs. Johnson:
I would say to remain diligent. It's not always easy, but to stay encouraged. Over the years, there's been some challenging times, but we just continue to press forward. Look into everything that you can. We've looked at parenting magazines, we've done Google searches, we've talked to people, just walking down the street, asking questions if they appear to have a child that had some challenges similar to ours. There was no path that we didn't at least explore and inquire about. I would certainly say to gather a team. We had Dr. Gaebler pretty much all of Lark's life and the various therapists that we've interacted with over the years. We still refer to some of them for information. And our family has been an amazing support to us, support to Lark all her life and I'm sure for the years to come.
Rachel Byrne:
Ramon, what advice would you give for a family who's maybe early on in the CP journey?
Mr. Johnson:
Starter early with therapy, as soon as possible. As soon as you get your diagnosis, find out what you can do at home, because that's the key as well. Aside from going out to the rehabs, going to your doctors, there are certain things that you can start to incorporate in their lifestyle every day at home that doesn't cost you anything. For example, every night, and Lark may not even remember this, but every night I would put her on the floor and just roll around with her. And then as she got a little older, we would crawl on the floor together. And then as she got a little older and she started liking horses, so she tried to get on my back. And so the biggest key is to start early, identify where their weaknesses are physically, and then try to incorporate in-home techniques as well as seeking out outsource physical therapy.
Rachel Byrne:
I love that advice. I think it's so important because-
Mrs. Johnson:
One more something. Unfortunately, there were some families that we've interacted with that had a hard time embracing the diagnosis of cerebral palsy. And we viewed it as a blessing, if you will, in that we knew what our daughter's specific challenge was. We had a name to it because there were some months that we didn't know what was going on with her. Once we got the diagnosis, it was like, okay, now we know exactly what we're dealing with and we know how to move forward. There are some families who they don't want to really accept the reality of cerebral palsy and what that is. I think if you just go ahead and embrace it and make the most of it, then it's easier for you to move forward and make the best of life for your child.
Rachel Byrne:
And Lark, we have so many questions actually now coming in for you. They want to know what's happening with you? What are your plans after school? What do you want to do in your future? Big questions actually for a 16 year old? I think that's pretty [crosstalk 01:36:25]. But what are some of the things that you would love to do or what do you potentially see yourself doing in the future?
Lark:
[inaudible 01:36:35] High school probably to study dance at college, to become a choregrapher.
Rachel Byrne:
Can you expand a little bit on your love, obviously for dance and ballet? I think that's clear now to everybody, but wanting to be a choregrapher. Did that come from actually participating in the research? Is that where you think your love started was in that first research study?
Lark:
It actually came from being in the [inaudible 01:37:09], and seeing all of the behind the scenes action and realizing that there is so much behind the scenes.
Rachel Byrne:
Hm-mm (affirmative). And I think it's so important, when we talk about the future and what's possible for all the families that are listening, how important is to encourage and have expectations and do all these wonderful things because, Lark, there is no doubt that I have that you'll be 100% successful in anything that you decide that you want to do. There's no doubt about that. Now, there's actually another question that's come in. They want to know what is your favorite subject at school?
Lark:
My favorite subject is [inaudible 01:37:57].
Dr. Deborah Gaebler-Spira:
Oh, Chicago.
Rachel Byrne:
And we see little brother on dad's shoulder there. How would you describe your relationship with your little brother?
Lark:
[inaudible 01:38:23] relationship.
Rachel Byrne:
Do you fight a lot or do you, you too close?
Lark:
We're close.
Rachel Byrne:
Yeah. Yeah.
Mr. Johnson:
Very close.
Lark:
Very close
Mrs. Johnson:
They do horseback riding together. And over the summer they Asa helped Lark train in a running program she participated in with Teresa.
Rachel Byrne:
Well, that's amazing. And Asa, how do you feel like when you're participating in those things with your sister?
Asa:
Good.
Rachel Byrne:
It's so much fun. I know. I wish I was horseback riding. That sounds amazing. I want to do more of that. Now, next question's that come in and, Lark, everyone wants to know all the fun things that you do. I think that's really what all these questions are about. But besides dance, what's another favorite physical activity? You've talked about horse riding. Can you just talk a little bit more about that?
Lark:
I enjoy going horseback riding and I enjoy being on horses and [inaudible 01:39:27].
Rachel Byrne:
And Dr. Gaebler, can you actually expand on that a little bit more, because people may have not heard of different horse riding that's available. There's horse riding for therapy, so there's something called hippotherapy and then there's horse riding, obviously for recreation. What is sort of some of the... Is there evidence to back up horse riding and what it does?
Dr. Deborah Gaebler-Spira:
Well, that's a wonderful question because we actually have a robotic horse study going on now for those who can't get to the horses, because we are interested in the idea of how the movement of the horse affects the trunk because it acts like a trunk perturbation. In theory, that is the sort of evidence that has been brought forward, that horseback riding can improve the trunk control and walking. And, I should let Teresa take the question about the exact level of evidence, but I think that it is fairly respected that it can have a positive impact. And I was going to say that there is a stoplight system for all the interventions for cerebral palsy. And I'm not sure if the Cerebral Palsy Foundation has that up on the website?
Rachel Byrne:
And it's actually been already shared in the chat tonight. So, that's-
Dr. Deborah Gaebler-Spira:
Oh, wonderful. Wonderful. Great.
Rachel Byrne:
CPResource.org has all these wonderful resources on it, but that one particularly, when you're thinking about the traffic light paper, last year, 2019, so it is very relevant and it has all the therapies and interventions that have their different levels of evidence. And it's sort of easy to understand, I suppose it goes green, which means it's got very good level of evidence. So as Theresa was talking about, is it a randomized control trial? Does it have thousands of participants that have shown that this is effective. The yellow, which is, yes, there's some stuff on it, but we need to learn a lot more. And then there's the red, which is sort of pretty much saying potentially, do you know what, that's something at this time we probably shouldn't be doing. There's evidence to show that it isn't necessarily effective or it could actually do harm.
Rachel Byrne:
So that link is actually in the chat and we will also make sure that we share it later on as well. Now I think there's a few more questions. So Angela, there was a comment that you made before about drooling. So when Lark was younger, that there was potentially an issue with drooling. It's just a mother that's written in is, is what did you do about that? Were you able to do things about that?
Mrs. Johnson:
I can't remember exactly what age we started giving her a medication called Artane. I think that may have been in the either kindergarten or first grade. Prior to that she wore bibs because the drooling [inaudible 01:42:40]. And so she started taking Artane, probably about age five, six or seven. Dr. Gaebler, maybe you can remember when.
Rachel Byrne:
I apologize everybody that there's some people trying to get into contact with me. But the question there, I suppose is, Dr. Gaebler, when it comes to drooling and thinking about potential different interventions, obviously there are many medications potentially but there's other things that you can do as well.
Dr. Deborah Gaebler-Spira:
Right? I think that for me, drooling becomes a practical problem when you need to have really good enunciation or at least as helpful as you can get. And also you don't want to have the social stigma of drooling when you're a smart kid. So medications can be considered. You can, if it's severe enough, there are the injectables, the neural toxins for saliva control. And then there are some speech therapy techniques that can be helpful as well. And I think that it's usually with all of the ideas about medication, you try the therapies and you escalate as you need to, if you need to go to the medications. There's also surgical sort of a re-route of the glands as well, but that's usually for just very severe cases.
Rachel Byrne:
And this actually just brings up another question, that's come through. This was more for the panel, but it's come through asking when we are looking at medications, actually for spasticity, you've just spoken about toxins potentially for drooling, but for spasticity, how long should they be given? Is this something that can be given throughout somebody's life or is this sort of a one off?
Dr. Deborah Gaebler-Spira:
I think it really depends on the goal of the medication. I think it's always worthwhile to have a drug holiday to see if you really do need the medication, so that you have the opportunity to re-engage then on the benefits. I think there are some medications that are used very long term, including Baclofen, some of the other medications for muscle tone. So it is again, as Teresa says, these are things that we don't really have a very good understanding of in terms of the benefit or the impact, but we do feel that they do little harm long term.
Rachel Byrne:
And the Johnson family, final comments from you. I'll leave it to you to be able to do the final comments this evening. Is there anything else that you would like to tell our audience and I just want to a big, thank you, obviously, for taking the time this evening. You are absolutely wonderful. You're an incredible family. Lark, I can't wait to see what you actually do with all these different things that you have in mind for the future. But is there any sort of final thoughts that any of you have?
Mrs. Johnson:
Well, first of all, thank you for allowing us to participate in this forum. We are always happy and willing to share our story with anyone, and hopefully it'll be of help and encouragement to some other families. I remember, I think when Lark was maybe seven or eight years old, and we just sat her down and told her that you have cerebral policy. And we wanted her to be okay with that, that, yes, this is what your diagnosis is. It's not a bad thing. You didn't do anything wrong. You're not a bad person.
Mrs. Johnson:
And she has moved forward in that space, very confident in herself. And she will kindly tell people who look at her strangely, I have cerebral palsy. And that's just what it is. So again, to just emphasize embracing what it is and making the most of it. We're in a wonderful time. We're in an information age. There's so much information out there. So many different things that you can look into to assist your family, but it's a blessing when you know what it is that you're dealing with and you can move forward, addressing that challenge.
Rachel Byrne:
Wow. On that note, I just want to say, thank you so much. I also want to say a huge thank you to Greenie, who has been signing this whole time, ensure that this is accessible to everybody. We are so lucky to have you on board during these town halls. And just going to say a big thank you to you as well.
Rachel Byrne:
So in wrapping up, I think I'd just like to say, obviously this is our third town hall that we are having. We will be having a couple more at the start of next year that we hope that you'll be all joining us for. And I just want to say obviously, a big thank you to our community who has supported these town hall series and been really engaged and asked as many questions as you have.
Rachel Byrne:
Obviously we will make sure that any of the resources that any of the panelists have spoken about that you'll have access to those, and we will share them with you. This will also be available on demand. You'll be able to access that on our YouTube channel, as well as on CP resource and through our social media channels. But on that note, again, I'd like Ipsen Biopharmaceuticals, who have supported these town halls.