Jen Lyman (00:00:05):
Hey, this is Jen and welcome to Cerebral Palsy Health Conversations that Count with Experts Who Care. And on today's episode, I have Dr. Ginny Paleg, a physical therapist and a great friend of mine who just wrote an amazing article with a rockstar team of researchers discussing the evidence behind Dynamic Movement intervention known as DMI and Cuevas Medic Exercises. This is a topic that comes up a lot in conversations with me and families. Families are looking for therapies they can that might help their children, and frequently families are asking me about DMI as an option for their kiddos. I was impressed by this article for lots of reasons, and Ginny really helps break it down in this conversation. Ginny is a pediatric physical therapist. She's based in Silver Spring, Maryland. She has over 20 years experience working with infants and young children in the home and childcare settings, really focused on the F-word framework for interventions. The F words are fun, function, fitness, future family, and she really incorporates them into everything that she does. She's an associate of CAN Child at Master in Canada. She's an honorary research fellow in the School of Health Science in South Africa. She earned her master's of physical therapy at Emory and her doctor of physical therapy at University of Maryland, Baltimore. Her clinical expertise lie in assessing and intervening for children with severe motor impairments, particularly those GMF CS four and five, and she's certified in the Rectal General Movement Assessment and the Hammersmith Infant Neurological Exam. These are both, which we'll discuss briefly in this podcast, but these are both used for early detection intervention for cerebral palsy. Ginny is a prolific researcher with over 60 peer reviewed publications focused on standards supported stepping devices and powered mobility for children with complex needs. And she's a lead author for the American Academy of Cerebral Palsy Hypotonia Care Pathway, and has served on various leadership roles within the field. I'm excited to talk to her about this article on the evidence surrounding DMI and CME, along with her co-authors to really learn more about what's going on with all of this. So I hope you enjoy the show.
Jen Lyman (00:02:47):
Welcome to the Cerebral Palsy Health Podcast. We dive deep into health topics that impact people with cerebral palsy such as stem cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility issues that could be confusing or controversial, and those that offer hope but might not live up to the hype. I'm your host, Jen Lyman. Join me in conversations with leading experts as we separate fact from fiction tackle tough to understand topics and try to shed light on how best to maximize and optimize health participation and quality of life. For those with cerebral palsy.
Jen Lyman (00:03:26):
Welcome Ginny Paleg, I am thrilled to have you on Cerebral Palsy Health today. I've been trying to get you on this podcast forever, and I'm glad I could nail you down. This is really exciting. Can you tell us a little bit about yourself and what you're doing now? And also how did you get into becoming a pediatric physical therapist?
Ginny Paleg (00:03:48):
Hi, I'm Ginny Paleg. I'm a pediatric physical therapist. I'm in Silver Spring, Maryland. I got my Master's at Emory University and then my doctorate at University of Maryland. I started off in athletic training. I worked at Lennox Hill for a summer and I trained all the professional sports teams. And back then in the late eighties, it wasn't early eighties, it wasn't the place for a short little woman to be, it wasn't safe. So I'm like, okay, I'm going to do kids. That sounds like fun. So I went to physical therapy school. I don't think I had any idea what that was going to look like or mean to me. My swimming coach at my college said, you want to be a physical therapist? And I'm like, okay. So I applied and I remember my husband was getting his master's, his MBA at Virginia Tech, so I was living with him at Virginia Tech, and the only anatomy course they had was cow anatomy. So I took that, which was not very helpful when I went to physical therapy. I bet.
And then I graduated and really had a strong interest in pediatrics, got my first job at NIH because I wanted to do research, and that sounded really exciting. I was in the public health service and then at the end of that time, you couldn't go part-time and I wanted to have a family, so I left to go work in my school system and you had to be NDT certified to work in the school system. So Brad and I got married, and then the next day I went off to my, after we came home from the honeymoon, I went off to my NDT training in New Jersey.
Jen Lyman (00:05:20):
And did you train directly with Berta Bobath?
Ginny Paleg (00:05:24):
No, no, no. She was alive at that time though. I was with Joan Moore and she failed me. She did not like that. I couldn't do it. It didn't make sense to me. Back then, I couldn't articulate, I didn't know about G-M-F-C-S levels or anything, but it just didn't make any sense to me that you would hold your hands on a child and make them look like they were doing something, but when you let go, they couldn't do it and they cried. It just didn't make sense to me. I eventually got certified about a year later, and Joan Moore used to say that I was a failure because of this whole gate trainer thing that I started doing, but in the end, she actually started teaching for a supported stepping device company too. So I feel like I won that round.
And then I went to work at, well, after I left the school system, I went to work at a rehab hospital. And when you're a new person on the job, they give you the kids that everybody's trying to get off their caseload. So I was given all these kids that essentially lived at the hospital and had been there their whole lives. And so they told me that I could only keep seeing the kids if I could find an outcome measure that showed progress. So that's actually how I discovered the GMFM. The G-M-F-C-S. This is probably 93, and I discovered the move curriculum mobility opportunities via education. And I'm sharing that because we're circling back to that now. We think that this is a really good curriculum for people to do in the school systems. And that's how I got started. So right now I work for early intervention in my local school system. I see the babies zero to three days a week, and then two days of the week I do off the side of my desk unfunded research. I have an international research group, and hopefully you see that we're trying to publish stuff all the time. For the kids that are non-ambulatory, mostly stepping standing and power mobility,
Jen Lyman (00:07:11):
You do so much more than that. I think you just downplayed so much of the work that you do. I know that on the side, you're also still talking to families. I refer families to you all the time to talk to, and I know you've helped so many families find resources and with the research and your advocacy, I mean even training other therapists. I know for CPF, you do trainings with us and for us. So you keep yourself busy, that's for sure. And I've loved knowing you, and I've loved, I feel like, gosh, we've known each other for a really long time, and you've watched Bower grow up, you've watched us go through our ups and downs and all the wacky things that we've tried over the years. And I guess for the purposes of this podcast, I was so excited about it because you came out with a paper with a rockstar team, by the way, it's Dana Poole, and you can talk about what each person does. I know Dana's got her own podcast research work. She runs a research education program in Australia. I think she has two podcast actually. And then she
Ginny Paleg (00:08:25):
Does therabytes for parents,
Jen Lyman (00:08:27):
And
Ginny Paleg (00:08:27):
Then research works for the therapists.
Jen Lyman (00:08:30):
And
Ginny Paleg (00:08:30):
She has two other clinics. She's in Perth, Australia, she's in Malaysia, and now she just opened a clinic in Singapore for Oh
Jen Lyman (00:08:35):
Wow. She's all over the place. And she's amazing. And her podcast is fantastic. I've learned a lot from that one. And then of course, Dave Frumberg, he's the orthopedic surgeon over at Yale who I think the world of Roz Livingston, she's in Australia as well.
Ginny Paleg (00:08:54):
I know Canada. She's Scottish, but she's north of Vancouver.
Jen Lyman (00:08:57):
There we go. And then of course, Diane Damiano, who we both know from the NIH, who's really, I don't want to call her the grandmother of all of this evidence-based research, but I think she's literally trained everybody in the world that I think is top notch.
Ginny Paleg (00:09:18):
She got me started,
Jen Lyman (00:09:19):
And I think she's gotten everybody I know, started. Most all the PTs that have been on this podcast have trained under Diane. I know, it's pretty cool. And then Alvarado Hidalgo, I don't know him. I know you said great things about
Ginny Paleg (00:09:35):
Up and Coming Rockstar. I met him when he was a student in Spain. He was doing a podcast at the conference I was teaching at in Valencia, and there was a sparkle in his eye, and I was like, I got to know this guy. And now he's finish. She's just finishing his PhD. He's got a little baby, and he is just absolutely brilliant. So he's all over social media. He's really into gmas. He's got the GMA tattooed on his arm. He's really into Hein. He's the one that helped us develop the He Hypotonia sub score.
Jen Lyman (00:10:05):
Okay. And for our listeners, the GMA and the HINE are for Early Detection/ Intervention. So those are just acronyms, which if you listen to some of my other podcasts, I talk about it with Natalie Maitre on the early detection intervention one. But that's what Alvarado is into. Cool. Good to know. And then so why I'm saying you put together this rockstar team or there is this rockstar team, it's a very, what is the, I'm trying to think of the best word. Heterogeneous. Well, heterogeneous, but the word to describe this paper that you guys wrote, and here's the title, and maybe it's, I think scathing is the word that comes to mind when you,
Ginny Paleg (00:10:47):
Dana wrote the title,
Jen Lyman (00:10:48):
Diane wrote the title, I think it's a scathing report that you guys did. And the title is, Where's the Evidence? Challenging Therapists To Stop Legitimizing Dynamic Movement Intervention and Cuevas Medic Exercises. And I got to say, I read this with an incredible interest because it is probably the most frequently asked about therapy that parents ask me when I'm talking to them screening for clinical trials or trying to find resources for pretty much every week I'm hearing from another family, I'm trying to find an intensive to go to. I really want to go do DMI here or there. And so I often am saying, there's no evidence to support this. And it's hard for me as a parent. I do follow the research and I do connect people to clinical trials, but I'm also a parent and I know that parents are desperate to find things that are going to help their kids. And so when you're hearing from your physical therapist, I've got to go, you really need to try this and this is going to help your baby. And then you're going to consider how you're going to find the $5,000 a week it's going to cost you to do this intensive therapy.
And then kind of looking back on all the things that we've done as a family, and there's plenty of 'em that I've gotten back from, and I'm kind like, we really wasted a lot of money. Or maybe I diluted myself long enough. And I know you remember years of me being like, oh yeah, Bower moves better after ABM Bower moves better after ABM. And then kind of thinking about it over the years, I'm like, is that just me trying to justify the cost in my own head? Just trying to be honest with myself about what's worked and what hasn't worked over the years. But this one is an interesting one because I think it's so popular right now, and therapists are the ones who are recommending it. And I thought that it was really important to talk to you about this so that we could provide families some context around what it is that's being recommended to them and what is the evidence to support it. So yeah, if we could dig into it just a little bit, can you tell me a little bit about the history of really what they are first maybe what is Cuevas Medic exercises and what is Dynamic Movement intervention?
Ginny Paleg (00:13:35):
So there's this lovely guy who's now in Chile who's Ramon, and he was advocating for 1950s style handling and facilitation, but he developed specific exercises. He built wooden equipment, and he sold these courses and he sold these intensives. And back in the late eighties and the early nineties, he certified a few people to do the intensives. One of them was Esther Fink up in, I hope I'm saying it right, Toronto, Canada. I might have it wrong where she was, because I never went to go see her in Canada. But I was on the speaking circuit back then. And I would run into her and I would always listen to her courses and we would talk, and it all started with a family. So I ran an intensive back in the nineties based on move mobility opportunities via education in a hospital. It was covered by insurance.
We used the GMFM as our outcome measure. We used lots of measurement to make sure that we were getting more than would've been expected. We just did a one week intensive 40 hours very, the first abstract I ever published in Diane Damiano helped me do that, and I presented it at the A-A-C-P-D-M in Portland. That was my very first meeting. So I met a mom who came, whose child had what we call then Shaken baby syndrome. And she went two or three times a year to Esther Fink for VUS Medical in Toronto. And then she went home to Texas and she was supposed to do six hours a day of these exercises, and her kid cried the whole time. All the videos you watched online, everybody's crying. I just didn't understand it. So that's when I pursued Esther. And right around then, I can't tell you the years, but in the nineties is when Yakob came up in Brooklyn.
And so I contacted him as well because I had families also that were going to him for what was then medic. Then Yakob really wanted to expand and train more people and do more courses. And Ramon didn't want that. Ramon wanted to keep the control. So then Yakob got together with a South African lady who I think is now living in Canada, and they started DMI. So in their documents they say that it's based on medic and that it grew out of medic. I know that Ramon again feels like it's his. So that's a whole thing I don't really know a lot about, but I know one of the criticisms I get a lot is that I'm not trained and that I don't do it, and how could I know? And I really do reject that, but I don't know.
Jen Lyman (00:16:10):
So basically the Cuevas Medic was first and then, but DMI was born from that. And it's essentially the same thing.
Ginny Paleg (00:16:22):
It's essentially the same thing except it's really about the trainings, the product they're selling. You are not just the intensives. Most of their income is coming from getting you through the different levels. So you have to pay to go through all the different levels, and you have to go through all the levels until you get to the pinnacle where then you're allowed to offer an intensive,
Jen Lyman (00:16:39):
So the therapists go through the strength. And is this something that the APTA recognizes as a skill that therapists should have physical
Ginny Paleg (00:16:55):
Therapy? Absolutely not. And again, the APTA hasn't gotten involved in things that work or don't work. I mean, I think we are asked to police ourselves, but even what they have done a little bit is as more and more evidence came out that NDT Bobath wasn't any better than no therapy at all. Not that it's not as good as any other therapy, it's actually not better than having no therapy. The APTA worked to get it out of the curriculum for the physical therapy schools, but that said, it's still in there. So there isn't a policing government, there isn't anything like that, and anybody can get a CEU course certified. Unfortunately, there really isn't any kind of policing.
Jen Lyman (00:17:35):
Right, right. So with this therapy and DMI, I guess it sounds like that's what everybody are asking me about. They're not really asking me to go to Cuevas Medic, they're all going to this DMI. What is it about it this article, what's scathing about it is what I found was the lack of research behind it that no evidence, but also that it's no evidence, but it's also not doing things that are considered evidence-based for kids with cerebral palsy that have been shown to be effective task-based things that are child led, that are motivational. And so what is this that it is about it's reflexes and it's Can you describe a little bit what they're doing? Even though I know you're not trained, and so I get it that you don't have the certification that you need to have in order to properly describe it, but to the best of your ability, maybe tell me a little bit about what they're doing and maybe what the differences between what they're doing and what something evidence-based would be doing.
Ginny Paleg (00:18:56):
So it's a lot like Voijta and the other 1950s therapies that realize that you could make a child that couldn't move by stimulating automatic postural reactions and reflexes. So for instance, I dunno if we can see with my filter on, but I can make it look like this phone is balancing on my hand. If I hold the phone up, I can make it look like the phone is standing all by itself, but it's not. It's just a trick of me shaking it back and forth to get the center of mass over the center of gravity, and then it looks like it's standing up. So when I put a child on a plinth and I stimulate, there's positive support reactions and I line everything up perfectly and I dynamically move it so that I'm stimulating all those posture reactions, it does look like the child is standing, but that's not standing for function.
That doesn't mean they're going to be able to stand when I put them down on the floor and try to put their jacket on, or when I stand them up against the wall to put their shoe on. The reflex of standing is just at the spinal cord level. The information is just coming from the muscle itself, going to the spinal cord and then coming back down. So it's never going to the brain. So it's not autonomy, it's not agency. When I teach you how to stand, when I teach Bower how to transfer, how to help me with transfers, and we know from the evidence that that is a lifelong skill, meaning people well into their twenties and thirties can learn to do sit to stand transfers. It's coming from the brain, so it's activated deep in the brain and the thalamus and the putamen and the caudate nucleus and the cerebellum, and it happens in the brain and then it comes down the spinal cord and goes to the muscle. So when it's self-initiated, then you can do it for you, then it's functional, then it's your performance, not your capacity. It's something you're going to do all the time when you learn it as a reflex, we know from large scale randomized controlled trials, it's called the LEAP study. It was done in folks with spinal cord and with stroke. When we tried to use a reflex called the central pattern generator, the stepping reflex,
Jen Lyman (00:21:08):
When
Ginny Paleg (00:21:08):
We tried to shape that into volitional stepping, it never happened. You could step on the treadmill when the treadmill stimulated you, you could step, but then you couldn't walk over ground. So it was not going to be useful to you.
Jen Lyman (00:21:19):
Interesting. That's really interesting explanation, and I really, really appreciate it. So you can basically, the way it sounds like you can basically do this over and over and over again, but all you're doing is stimulating this reflex in that moment, and it doesn't actually turn into anything functional. You could be training the function outside of that though. Right.
Ginny Paleg (00:21:46):
And I'll admit to you, in the eighties and the nineties when we thought the central pattern generator could be shaped into stepping, Christopher Reeves was big on that. There was a lot of animal model studies. So I used to do that. I would put you in a treadmill and I would move your legs and stimulate, it's a stretch reflex in the hip flexor and make you step. And I thought, okay, even if it's a reflex reflex and it's never going to become volitional, at least I'm getting strengthening. At least I'm getting activity. It's got to be better than nothing. But it turns out it was time toxicity. As David Frumberg and Nathan, it was a waste of my time and my energy, my time would've been much better spent in a supported stepping device. Overground and not Trexo, not robotics, not passive. It has to be active. And we know that now. So you can spend a lot of time and money trying to research DMI, but why would you, the principle, what it's based on, the foundation is cracked. So Don't build a house there. Find a foundation that's not cracked.
Jen Lyman (00:22:46):
Yeah. I think it was interesting too that it sounds to me like they're also not using things that could be helpful, like orthotics or supported stepping devices in these intensives. So they've got their exercises, but maybe I'm wrong. Maybe they're also,
Ginny Paleg (00:23:07):
I think it depends where you go, because NAPA definitely does. What I love about NAPA is that they hook you in with the DMI, but then they also offer you a lot of evidence-based ingredients, right? They're doing a lot of other things. What I love about milestones in West Virginia, Wendy ties or her program, they hook you in with the DMI, but you're going to leave there with an aug-com device. You're going to leave there with a stepping device, with a power mobility trainer, with a standard with a splint, you're going to leave there with everything you needed. So the programs that are hybrids where they're like, okay, I get that. You want me to make it look like your kid is doing stuff, so I'm going to do that for you. But then we're also going to talk about what you are going to do every day at home, every week at home, and not eight hours of a child, but child directed what the kid wants to do. What's happiness?
What's the meaning of a good life? Horseback riding, swimming. We know from Hercules LA and all the great research that leisure activity is probably our strongest ingredient.
Jen Lyman (00:23:59):
Absolutely.
Ginny Paleg (00:23:59):
Go have fun, go live a life, get out of the clinic, go into the community like you guys do, you go skiing, Bower goes water skiing. I know.
Jen Lyman:
And I think about that and I think about ourselves in the things that we were doing when Bower was really little. And we would go to some intensives out in California that with, she's not a therapist, she's not a physical therapist, she's got her own neuroplastic, whatever. And we'd go and I would go often and leave and just feel defeated that we weren't doing enough and that we weren't doing anything. And all the things that did seem to be working were wrong. And I remember feeling like, okay, well I've got to keep up with this and keep trying because it seems like it's going to help or it seems like these claims of neuroplasticity and this is this how neuroplasticity works and was, and I hear that with this DMI stuff are these claims of these ingredients for neuroplasticity? And I find that that's, and I've seen not just with DMI, I see that with other things too. So I'm specifically talking about our experiences with an Anat Baniel Method and people who I've talked to, lots of families who have gone, and I think they've had similar experiences to me, but I think DMI does the same thing. They like to make these claims that it's using the ingredients of neuroplasticity, but I'm not sure that it necessarily is.
Ginny Paleg (00:25:41):
And that's our new article, the washing article. With this hype test,
Jen Lyman (00:25:45):
We
Ginny Paleg (00:25:45):
Really want to try to explain to families what is neuroplasticity? What isn't it right now? I hope all of your families know their children's GMFC CS level. If you don't, the GM FR is a great way to do that from Paula Chagas, but know your GMF CS level and know what the curves look like. Your child is going to make progress for those first six years, whether you do something or not, they're going to gain skills. And most people won't even do DMI after six because the kids are too heavy to do the
Jen Lyman (00:26:14):
Plant.
Ginny Paleg (00:26:15):
Yeah. So they're going to get better, but they were going to get better anyway. But we don't have a single intervention, not even cord transplant done very early on. Iona Novak and her research, it doesn't change the GMFCS level.
Jen Lyman (00:26:29):
So
Ginny Paleg (00:26:29):
There has to be some frank conversations about what's your new normal going to look like? What's your life going to look like? What are your dreams and how do we modify the environment and use assistive technology to make whatever you want to happen right now, we'll keep working on that skills. We'll keep going, but you can't wait when a child is born without a leg. David Frumberg’s specialty is limb deficiencies. When a child is born without a leg, we don't wait for it to grow back. We wait till it's the age appropriateness of pulling to stand and we get them a limb. And then when they want to go swimming, we get them a swimming limb When they want to go skiing, we get them a skiing limb. If they want to run, we get them a running limb.
Jen Lyman (00:27:08):
It's brilliant. Exactly. It's the same thing here. So you're GMFCS four, you're GMFCS five. I did a whole podcast. Every anybody's listening to my podcast knows that I'm a huge fan of early powered mobility. I know you are too. But getting the early powered mobility on board, getting the supported, stepping on board immediately as soon as they can, getting the standing and getting that on board and with assistance and because it's fun. I mean, getting them up, they're able to see at a different level. They're able to access things that their friends can access. It looks cool to other kids. When other kids see these really cool standards that can be all decked out with all kinds of fun stuff. It makes it interesting so other kids can get involved in the play and the fun. And then I feel like you can turn something from therapy into just every day and incorporate those learning moments into your day-to-day activities rather than going and spending all of your time at someplace with somebody doing it all for you.
Ginny Paleg (00:28:25):
What good is it? If they can stand on a board when someone's holding them, what good is it? They can lift up their head when they're being dragged across a plinth. That's not going to help you when you're sitting in your house trying to eat or play or bathe your kids. So that's why I do early intervention. I do it in your house, but we can know your GMFCS level at two to three months adjusted age. We can know this so early on and get you started and our latest research on power mobility, we notice the kids that have arthrogryposis and SMA and spinal cord injury, they get their power mobility much closer to one year. The kids with CP aren't getting their power mobility till age two or three. And by then you've missed this critical period
Jen Lyman (00:29:04):
Of
Ginny Paleg (00:29:04):
Agency. You've missed this critical window of opportunity for the brain to understand that that child has power. That child can decide where they want to go. They don't have to have learned dependence. They can’t be their own person.
Jen Lyman (00:29:17):
That's a really interesting thought because I was just thinking about this as a mom. You're there, you've got your nine month old and maybe physical therapies, you're not seeing any gains and you're not doing supported stepping. Maybe you're not doing, maybe your therapist is in DT trained and they're still working on the reflexes or whatever. But if they're not being offered the opportunity to use powered mobility and things that might actually create that spark where your baby might actually realize, if I press this button, I'm going to move from point A to point B. I can see where when you're offered something like DMI and an intensive like that, you're going to be like, well, I'm going to try it. Nothing else works. I'm not seeing it. So if you don't have any alternatives, I can see why people would go that direction.
Ginny Paleg (00:30:14):
But we know I'm teaching a course with Heather Feldner and some friends, Ashley Schilling and Jenna at APT CSM next week. And the course is on the developmental Cascades. We know that it's the motor that drives language and cognition.
Jen Lyman (00:30:27):
We
Ginny Paleg (00:30:27):
Know that you have to be able to move and control your own space before all those other things happen. So why are people holding off? Why are people waiting?
Jen Lyman (00:30:37):
It's a really good question. I feel like maybe people are afraid to talk about that GMFCS level at a really young age, and they still have this wait and see mindset and they don't want to scare families or I don't know. Because when I'm screening for a lot of these trials, I'll have families call and they knew something was wrong, well before anything was diagnosed. They're seeing a difference between the right side and the left side. They're seeing something not right. And it's easier to be able to hang your hat on something and say, okay, this is what I've got and this is what I'm working with than to be holding onto, I don't know. And I'm holding onto a hope that is not the right, not, it's one thing to have hope. It's another thing. It should be informed hope.
Ginny Paleg (00:31:36):
And I think if you're going to fundraise, it should be for a wheelchair accessible van. It should be for a bike, it should be for swim lessons. It should be for a family trip where you're all going to the beach and you can go surfing. You can see Bowers surfing. So just getting back to our article, we think it's unethical and immoral for a physical therapist to be charging, especially charging third party payers for something that not only is there absolutely no evidence and don't tell me it's new because it's been around since the fifties and there's nothing there.
Jen Lyman (00:32:09):
Okay? So it's remarkable that third party payers are paying number one, because to me, if they're not paying for a power wheelchair for a little baby, but they are paying for this, what you're getting from that power wheelchair is so much more valuable in the long run, then what you'd be getting from a week of $5,000 for a week of this. That's wild. It's wild. And there's evidence to support the powered mobility.
Ginny Paleg (00:32:43):
I've heard from Elizabeth Rodney Basque that in Sweden, they won't cover NDT or Bobath. And I know in Australia there was just this scheme where you got a chunk of change and you could do whatever you wanted with it. And now they're pulling back on that because there were so many people just capitalizing on that.
Jen Lyman (00:32:59):
Yeah. Why you look
Ginny Paleg (00:33:01):
At a lot of these programs. You brought up a good point. They're not even physical therapists. I have people that go to the Institute for Human Potential. There's
Jen Lyman (00:33:08):
A program
Ginny Paleg (00:33:08):
In upstate New York, and
Jen Lyman (00:33:10):
That still exists. I didn't realize they were. They
Ginny Paleg (00:33:12):
My families is going
Jen Lyman (00:33:14):
And are they still doing patterning?
Ginny Paleg (00:33:17):
Yes.
Jen Lyman (00:33:18):
Oh, wow.
Ginny Paleg (00:33:20):
They are.
Jen Lyman (00:33:20):
Okay.
Ginny Paleg (00:33:21):
And lots of other things
Jen Lyman (00:33:22):
That
Ginny Paleg (00:33:24):
May or may not be evidence-based ingredients. But again, as a professional, as a physical therapist, I can't do something because someone told me it was a good idea. You have to really have a valid, reliable outcome measure. They keep saying, we're not ready to publish, but every time you see a kid, you do an outcome measure before you start and you do it after. So where are the case studies? The one that was presented at a conference was a kid with SMA type one treated Well, those gains weren't any different than we would've expected, again, with no treatment. And even this poster that I just ran into the other day, which wasn't accepted for A-P-T-C-S-M, they didn't have an outcome measure. And when you look at some of these other studies, they're not valid, reliable outcome measures. So
Jen Lyman (00:34:05):
Yeah, see, you mentioned one on kids with autism spectrum disorder, and they had them wearing AFOs for some reason and used a postural outcome measure, which didn't make sense.
Ginny Paleg (00:34:22):
So we don't think, what does Dana want me to say? We think this was done with large, oh God, what's another term for ai? Large language models.
Jen Lyman (00:34:31):
Large language models. Yeah, that's
Ginny Paleg (00:34:32):
The code word for, it's a fake study. We can't say that. That makes us liable. So I didn't say it, but you would never get Helsinki. You would never get IRB for taking a fully ambulatory child and sticking them with solid AFOs for all day. And then the PPAS, Elizabeth Bosque
Jen Lyman (00:34:51):
What's the PPAS
Ginny Paleg (00:34:53):
Posture and post ability scale?
Jen Lyman (00:34:55):
It's the
Ginny Paleg (00:34:55):
Kids at GMFCS level four and five. You're looking
Jen Lyman (00:34:58):
At, these are non-ambulatory, just to keep everybody on track. She's talking about putting ambulatory kids that can walk kids in solid AFOs. So that means that they're wearing a splint on their feet basically that doesn't have a hinge on it. So where they used to be able to move their foot point it and flex it, they no longer can. And they're also being measured on a postural scale. So that doesn't make much sense to me.
Ginny Paleg (00:35:26):
And that's not the DMI population anyway. So
Jen Lyman (00:35:28):
Again,
Ginny Paleg (00:35:28):
And in that study, if you look at the references, there's articles in the references that don't exist. They cite an article from Marilyn Wright and Bob Ano. That's a very similar study that doesn't exist. That never happened. So I think we have to discount that study.
Jen Lyman (00:35:43):
Yeah, I keep on going back to this. Okay, why is it because it is, why is this back in vogue? It's been going, it's been around since the 1950s. There's no research to back it up. They've had plenty of time to do research and even in the newly packaged way, the DMI way, so it was repackaged in 2021 or so. So even since then, they've got five years. They could have done numerous studies since then. And I scour clinical trials every month. I go through all 370 clinical trials that are happening around the world. And I think there's one currently that
Ginny Paleg (00:36:23):
There's one registered, but again, no valid and reliable outcome measure.
Jen Lyman (00:36:27):
And
Ginny Paleg (00:36:27):
It's also from Pakistan, and
Jen Lyman (00:36:28):
It's comparing it to something else that has also been deemed, it's not effective. So it doesn't really seem to help either in dt. So that's really fascinating to me. So it is really interesting that it's such a, so
Ginny Paleg (00:36:44):
Popular. I want to dig down. Everyone keeps saying, I see amazing progress. And I'm like, tell me what it looks like and nobody can give me a measurable outcome. I want to know why it's so alluring. I want to know why everybody's so excited about it.
Jen Lyman (00:36:59):
Yeah. Have you talked to parents? And I'm curious because I'd like to hear from parents who listened to this podcast and they've done it and it's what is it about it that has made a difference for you? I mean, I remember I used to tell you this when I'd go out to a knot, my justification was like, I think Bower can move a little easier. It was always what I felt. I was like, okay. I think it helps him move a little bit easier. I'm not sure if I was diluting myself, I'm not, maybe it was helping some, but I didn't improve function. It didn't change anything for him functionally at all. And I was being told to do things that were against what everybody else under the sun was saying he should be doing. Riding his horse and doing his tricycle and using his gait trainer and standing.
All of those things were off the table looking. Hindsight's 2020 obviously, but I can see where, and I didn't quit any of those things, and I did keep up with my regular therapies, everything else, because I was going to make sure that I was going to do everything under the sun. I wasn't going to just quit everything like I was being told to do, which is a Godsend that I had a hard enough head and I was too afraid to quit everything. But I can see where if nothing else is working, then let's go try this and hopefully maybe it'll help. But it is odd to me that there's nothing.
Ginny Paleg (00:38:36):
I think there's a great community. I think it's the one place you can go and meet other families that are dealing with what you're dealing. I think we do a horrible job in America of we know the number one most effective intervention is mental health and education of families. The recommendations from our scoping review that we did with Ana Campos was saying that families need two hour series of 10 trainings, hopefully from another parent that has a child like theirs. What is spasticity? What are contractures? What is the gmfcs? The stuff you do in your podcast, that's the most important thing. So if you've never met a mother whose kid has a G-tube, then you go out there and you meet 12 mothers that have kids with G-tubes, and half of them are worse off than you are and half of them are better. And you get your community, you make your life wrong, friends. So it's like going to summer camp, right? You go back the same week, twice a year, you're with the same families. You get this comradery, and you know what? Maybe it is better than nothing. Maybe stimulating reflexes to just get the blood flowing, but we have to stop certain things. We have to stop the crying in their pamphlets, in their literature, it says that crying shows that your child is working and nope, there's no crying in baseball and there's no crying in therapy like the child. We know that you don't learn when you're secreting cortisol, when you're stretch stressed out, you have to be happy to learn.
So it's what works for you in your life if you want to stay in shape. Do you go to the gym every day for two weeks, twice a year, or do you go to the gym once or twice or three times a week? Your whole life? The model works into your schedule. And I think there are intensivess that use evidence-based ingredients. My favorite one is, oh gosh, her name just went out of my head. The woman from Wash U, the biking lady, oh God, Jen. Jen Miros, beautiful. That sports camp. And her research is amazing. The more you go, the better you get. The people that had went to summer camp four times, they didn't lose during the year. They kept gaining not as much, but they did. So there is an intensive model that works, but it's evidence-based ingredients
Jen Lyman (00:40:48):
And maybe expand on evidence-based ingredients for a second. I think it is helpful for families to know what they are, and I like to hear it from other people besides myself. I
Ginny Paleg (00:40:59):
Think we talked about too, child directed. It's something that child wants to do, child activated, meaning you can't be touching the child. There's EEG studies from Jills Wicker that suggests that when you touch the child and you're not the parent, you're actually interrupting their learning. Think of how we teach kids how to play piano or play soccer. We don't move their limbs. We don't put our hands on children. It's actually frowned upon because it interferes with their ability to learn. So the kid has to do the initial, oh my gosh, I want to do this all the way through. I'm doing it. So when you look at things like the traxo, it moves the legs in a single trajectory. There's no variability. And again, that's not the way we learn. So the evidence-based ingredient is the child has to figure out how to best use their body. If they want to double sit, go ahead and double sit. We have no evidence that rotates the hips. You probably double sit. Your hips are already a little rotated and you have a low tone trunk. And the only way you can stabilize yourself is by making your hips lock in. I mean, don't sit there for an hour, but if that's where you're playing with your hands, then we're going to allow that. So
Jen Lyman (00:42:10):
Yeah, that's it. And I remember being told so many times, don't let Bower w sit. Don't let Bower w sit. And I was like, that's where he sits the best. And yeah, and you're right
Ginny Paleg (00:42:21):
Thinking,
Jen Lyman (00:42:21):
Yeah. Yeah.
Ginny Paleg (00:42:22):
And I think you've also,
Jen Lyman (00:42:23):
I've got a great analogy for that. So one day I was at a course with a fantastic occupational therapist and she was talking about motor learning, and she was talking about what is handover hand that they use a lot in the school system. We're going to use handover hand to teach him how to write his name. And she was like, that's not going to teach him how to do anything other than if you hold his hand with your hand, you'll move it for him. I thought that was a really good point. It always stuck with me hand over hand.
Ginny Paleg (00:42:59):
Yeah, that facilitation, the handling, that's why people say, I do the new NDT, and it's like, well, do you still go on a ball? Do you still going to roll? Do you still work on half kneeling and tall kneeling, or do you get to the participation part? So again, people have terms for things like DMI, like NDT, like Bo bath, but I really need to know more. What exactly is it are you doing? And the other part I wanted to share is an article called The Tragedy of Promising Happiness Through Overcoming Disabilities by Olivia Dahl.
Jen Lyman (00:43:29):
You sent me that article and it's spectacular.
Ginny Paleg (00:43:32):
What did you think when you read it?
Jen Lyman (00:43:35):
Well, I thought from an adult perspective, it was really sad. I guess when I read it, it was really, really sad. And
Ginny Paleg (00:43:45):
It's pretty much adults saying, what did you do? You told me something was wrong with me, that I needed to be fixed. You put me in hours of therapy. I didn't get to play. I didn't get to make friends. What was it all for? I wanted to be out there living a life.
Jen Lyman (00:43:56):
Yeah. And I can see both sides. I can see being a parent and sending your kid to a public school that's in a classroom where you've got 30 other kids and your kid is in there and needs a lot more support than maybe they're getting they, and you're worried, which was me. I was worried that my son was sitting in the back of the classroom. Or even they would accommodate him by putting him at the front of the classroom. But was he actually participating or was he just in the classroom and was he getting the support he needed? And so having to make the judgment call, do I take him out of school for part of the day so that he can have some in-home education and get some more hands-on therapy and things like that. I guess hands-on might not be the right word for this podcast, but direct, have more direct therapy and work on some specific skills because he might not be getting it in the classroom.
So I read it and I felt guilty because I did do, I would take Bower out of school for years. I mean, we would have halftime at school and halftime at home with a private tutor that would help and also could help us with therapy and things like that too. And I felt like that met both needs. It allowed him to have fun at school and socialize. But then I didn't worry that he wasn't getting any actual education because I knew they weren't educating him. I knew he was just having fun, which was fine, but I needed to accept that. But yeah, looking, even reading that article and listening to what the adults had to say, you can see that that would be really, I'm sure that impacted him too, probably didn't want to go come back, but every once in a while this morning when he didn't want to go to school, you kind of feel like, oh, I don't have to send you. You can stay home with,
Ginny Paleg (00:46:05):
But he loves weightlifting, right? He loves
Jen Lyman (00:46:08):
And kind of getting back to what works and what doesn't work. And we've been through so many things and I still, I'm constantly looking. I'm constantly looking for things that, in fact, we're trying a new program on Friday that somebody recommended to me and we'll see. But to help him strengthen his core after his fall, I call it his fall of just a mess. But we're going to try something new to help him strengthen. But what we have found with him and was that a consistent exercise program, after years of doing things that might've been functional in physical therapy, we'd go and he'd work with the physical therapist on using the gait trainer, and he'd work with the, they had functional goals. They always had functional goals, and he just got sick of it. I mean, he just burnt out and got really sick of it. But what we found was that him just going and exercising with a personal trainer and strengthening was a game changer for him. And he loved it. He loved the community of the gym. He loved having just regular people cheering him on. And a lot of the things that were gym exercises weren't too difficult for him. They're pretty straightforward. They're pushing, they're pulling. They're things that are just straight up. You just do this and it's fun and it's not that hard and people think you're cool for doing it. So that was always a motivation. And we've talked about this before. It doesn't translate to straight up, oh, he's walking, but he can help me better with his transfers. He can hold his head up a little bit better. And right now he's pretty weak. And so we're going to try a new core program that might be, hopefully he will enjoy it. Hopefully it'll be fun and we can incorporate that into his routine and get him back on the weight training program that he used to be on. But yeah, it's
Ginny Paleg (00:48:29):
Exciting.
Jen Lyman (00:48:30):
It is. It is. But I still look at DMI and I think about neuroplasticity and about ways that you can help your kid learn to function better or learn. And I totally can see where the parents are coming from. I totally can see that they're trying to help their kids and trying to find the best program and protocol. And I don't want people to have to fundraise for things that aren't effective, which it does get me to. Another thing that I wanted to touch on is that we did for Cerebral Palsy Foundation and CP Resource, we do have a tool on CP resource, and I know you've got the hype tool that's going to be coming out as well, and I'll incorporate that on CP resource. But we do have this tool, it's called Considering the Alternatives. And it really is designed for not just it's any therapy at any time or surgery or whatever it is that you're considering doing. So looking at factors, where did you learn about this? Did you learn about this from other parents on Facebook? Is it studying? Is it doing the same thing that your kid might have? Let's say your kid is a gmf CS four or five, but this therapy is for hemiplegic. Kids who are ambulatory is making sure that you're comparing apples to apples, doing things, the questions that you need to ask your therapist, your regular physical therapist in addition to if you found it on Facebook, you heard about it, then you go to your therapist and you're like, what do you think about this therapy? Getting their input, talking your doctor about it, and not being afraid to talk to your doctors about these things. I think they like to hear about 'em too. I'm sure lots of other families are asking about this and it's helpful for them. But having, so that's what this resource does. It has a list of questions to be asking your therapist to be asking your doctors, and then also asking the therapy, whatever that protocol is. Let's say you're looking at hyperbaric chambers, which we all hope you're not, but if you are, these are the questions you should be asking. So that's a tool that we've got up on CCP resource that you can use, and hopefully it's people find it helpful. I think it's pretty thorough, but really, really this paper is actually up on CP resource as well. I have it linked within this considering the alternatives landing page. I have it linked in the DMI section. So when you go, and if you're looking up DMI in there, you can also find this paper. I think its really, I mean, it's easy to read. I think a lot of research is really hard to read. This one is an easy one to read. It is scathing, and I like it because you weren't afraid to tell the truth and say, Hey, these are the issues that we have with this, and these are the things that people should be aware of. So thank you for
Ginny Paleg (00:51:59):
Doing that. I'm also aware of the harms. I think the motivation behind this article was outrage and anger, that there wasn't more transparency about the harm. So therapists are getting injured doing this. It's really hard to lift and swing the kids over your head and do all these
Jen Lyman (00:52:16):
Things. Are kids getting injured?
Ginny Paleg (00:52:18):
We have not been able to document that. I'm not directly related to that. There's somebody called Nikki Mills in Australia who just did an amazing job documenting chiropractic injuries to children, especially neck injuries. So that Australia now has disallowed chiropractic manipulation for children. She's hot on the trail, Dana as well. They've the emergency room records, and unfortunately, most people don't like to report that they had an injury in therapy because they like their therapist. So they do some job protecting that, especially here in the United States. We write this in the article. We are mandatory reporters. So when a leg gets fractured during therapy, you have to report it. And we know that that's not happening and that even when people are getting to the er, they're asking that those protocols not be followed because they're trying to protect their, but we do have hearsay reports, which again, can't be published, but there are people besides myself looking into the harms, and that's real. So you got to be more transparent about that. And you just got to look at your own, what's going on in your situation and what's best for you. And the final thing you and I talked about was this idea of the three pillars of evidence
Jen Lyman (00:53:37):
And
Ginny Paleg (00:53:37):
How family preferences and clinical experience are just as important as peer reviewed evidence. And I really take issue with that, that no matter what you think about what's going on in this country right now, when you don't get a measles vaccine, not only are you going to get measles, but all your friends who are immunocompromised who couldn't get the measles vaccine, they're now going to be more likely to get exposed. So the evidence-based pillar, the leg of the chair has to be bigger than clinical expertise and parent preference. It just has to be, otherwise the chair isn't going to hold up under pressure. So I am very open to that. Families deserve to choose what to do with their fundraising and their money and their children. And if you think this is going to work great, but then when you go, you can't just rely on the clinical opinions of the people you're paying to do this. They're going to be hopeful, they're going to be promising they're good people. They're doing this because they think it's going to work, but they have to get to the next step of using a valid, reliable outcome measure before and
Jen Lyman (00:54:38):
After. And there are, there's so many valid, reliable outcome measures that they could be using. And they've had years and years and years and years and years to do this. And it's not like they're not making a ton of money. So I guess that's the issue that I have is yes, you do have these well-meaning therapists that are recommending this and feel like it's great, but I'm like, you're making the money. It's not like you don't have the funding to do this. They have the money to do the research, and it's not that hard to have these outcome measures. They've already been validated. You can do this.
Ginny Paleg (00:55:17):
We're not asking for randomized controlled trials, right? We're just asking for a couple of well done case studies and of one, because often N of one is more valuable because I want to know, most of the people that I see in DMI are gm, FCS level four and five with hypotonia, which most likely they have a genetic syndrome. So that's kind of different than garden variety cp, garden variety, CP is a child was developing typically, and then the injury happened around the time of birth so that every single cell in their body started off. Typical when you have a genetic disorder, often every single cell in your body is different. So the trajectory, we don't know this, but maybe it looks a little bit different, but those are the kids that actually get the least amount of evidence-based ingredients.
Jen Lyman (00:56:01):
Yeah, I could see that. And then how do you know, I guess the other question I always have is how do you tease out what is the therapy and what would just be natural development
Ginny Paleg (00:56:19):
So that we know we have the G-M-F-C-S curves. We've got work from Bob Ano, and Elizabeth, Rodney Basque and her group in Sweden just dug into their data to show you, and it's actually quite astonishing. I wish I could bring the curves up for you. I'm going to try to do it off the top of my head. But one example is that we all think that kids that are G-M-F-C-S level three kids that have spastic diplegia walk independently with their walker in the community around age five. But in reality, only 10 to 20% of kids are actually doing that. So the progress when you look at the data is happening much later than we think. So those gm FR, the GMF and the G-M-S-C-S extended and revised the thing that tells you at what age these things happen. So people sometimes will think that it's the therapy, but you can look at the motor curve, and again, your population isn't listening to this isn't researchers, but even as a parent, it's your gm, FM 66 centile or percentile. That is the key to knowing what's possible and what's less possible. We never confine, we never take away hope, but if you are a 90th percentile four and a 10th percentile three, you're probably not going to take independent steps in your home. Although I know children at GMFCS four that do that.
So that's what I would ask my therapist for if I'm trying to figure out what are the skills are that I can gain in this atten when I'm going to plan, even if I'm doing G, I look at my GM, FM 66, look at the centile and look at what's the next skill, what's going to get me? Really, I want to be in the 50th percentile. I want to be in the median or the mean of my G-M-F-C-S band. That's the goal for everyone. So what do I need to get there? What's the participation functional skill I need? What's going to hopefully make life more fun and easier for me?
Jen Lyman (00:58:09):
Yeah. Well, before we go talk a little bit about this MOVE curriculum, I remember seeing the MOVE curriculum when Bower was an infant. His physical therapist had been certified in it, and she brought me the book. It was huge. And so it's fun to hear it being revived and actually recently looking into transition programs for him. There's one locally that uses the MOVE curriculum as part of their daily protocol, which I thought was really cool. And I'm looking forward to going and seeing that program for adults and how they incorporate the MOVE curriculum in that. So tell me a little bit about that.
Ginny Paleg (00:58:49):
So it's called Mobility Opportunities via Education. You can buy the curriculum through rifton. It was developed by a teacher, Linda Bubi in Bakersfield, California. And it's everything you've talked about today, just that idea that children deserve autonomy and agency and that happens through using their gross motor skills every day, all day. And what I love about it is that it happens at the school. So it's not one more thing a parent has to do, but when it's time to lift you onto the toilet, we don't lift. You take the time to be, okay, this is how we're going to stand up. This is how we're going to turn, this is how we're going to sit. And it's written at the fourth grade level, so anybody can do it. It's in lots of different languages. It has a measurement tool that's not an outcome measure called the top down milestone. T-M-D-T-T. I'm not going to remember all the letters stand for, but it's been around forever. There's been a lot of low level research. There are not any RCTs on it, but that article is under consideration now. Wait,
Jen Lyman (00:59:46):
Just an RCT is a randomized control trial. Alright, keep going.
Ginny Paleg (00:59:50):
So not strong, strong evidence, but it's coming. There's lots of stuff in the plan. This is a work of RCL ch, who's a teacher in Dortmund, Germany, and we're all helping him to get his PhD published because we think this work is great. So again, it's just using these devices for participation, for fun, for all the F-word and doing it every day, all day as part of natural routines. And it's done across the lifespan as we know almost all of us are going to get a disability across our lifespan. So what are we going to do about it? And I think the answer is in everyday participation, fun and leisure, and doing the things that make us happy in life.
Jen Lyman (01:00:29):
I'm with you. I'm with you. I think that's the best goal that we can have and yeah, I love it. Well, thank you. And
Ginny Paleg (01:00:38):
That's why I put this picture in behind me because that to me is what it's about. You have a twin sister who's developing, growing a different trajectory than you are, but how do I make sure that you can still play and have fun and interact and have a good quality of life?
Jen Lyman (01:00:52):
Yeah, it's lovely and it's been amazing to have you today. Thank you so much. I'm so grateful, and I'm looking forward to seeing you in person again soon. I don't know when that's going to happen, but it's going to happen. We'll make it happen while we're still up here in Philadelphia for sure. Hopefully it won't be as long as next year's Academy meeting. But thank you, Jenny. Thanks for being part of Cerebral Palsy health conversations that count with experts who care. And Jenny, I know I consider you one of the greatest experts there is, and I, I'm just so grateful that you were able to join me today. Thank you.
Ginny Paleg (01:01:31):
Thank you. Glad you enjoyed the article. I
Jen Lyman (01:01:33):
Did.
Ginny Paleg (01:01:34):
Bye.
Jen Lyman (01:01:37):
Thanks for listening to the Cerebral Palsy Health podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcast and follow me on Twitter and Instagram. You'll find the links in this show's description. Please feel free to email me with comments, questions, and topics you'd like to learn more about at JB Lyman at Mac. That's MA c.com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it is not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast or any other medical concerns with their personal medical team.