Superpowering the Human Body : Episode 4
The fourth episode of CIONIC’s podcast Superpowering the Human Body, features a conversation with Dr. Stacy Menz, Physical Therapist and Founder of Starfish Therapies, an interdisciplinary pediatric therapy group.
Stacy shares with us her approach to patient engagement through goal centered play, the successes and challenges of telehealth, and the shifting norms of inclusivity.
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The full transcript is below, edited for readability.
Jeremiah: Hi, my name is Jeremiah Robison Founder and CEO of CIONIC; we build bionic clothing to enhance human performance and overcome disability. Welcome to another episode of our podcast Superpowering the Human Body where we explore the science and technology of human augmentation. Today on the show, I’m so pleased to be joined by Dr. Stacy Menz Founder and owner of Starfish Therapies, where she created an interdisciplinary pediatric therapy group that not only loves working with children, but excels at it. Stacy, thank you for being here.
Stacy: Thank you for having me, I’m excited.
Jeremiah: Now, your career has been focused on Pediatrics and working with children with mobility delays and differences, including cerebral palsy and other disorders. Can you tell me a little bit about your patients, a little bit about their journey and about how your practice focuses on their needs.
Stacy: Sure. We work with kids of all abilities. A lot of our kids are maybe not neurotypical and have some neuro differences like Cerebral Palsy. We also work with kids with genetic differences… anything where it’s going to impact the way that the muscles function so that they can produce movement. We will also have kids who have injuries, but that is not the primary area that our practice focuses on. We will see kids from very early that are just having some of those developmental delays — where maybe they’re just not hitting their milestones, and some of those kids may end up with a more significant diagnosis, and some kids will just catch up.
What we really work to do is empower the parents to support the kids in their development, and the main focus is to help the kids be able to do the things that they want to do. And maybe when they’re really little, they might not know what they want to do, but it’s getting them through some of the developmental sequence…getting them stronger… really focusing on the needs. Because my goals aren’t the important ones; it’s the child’s and the parent’s goals that are important.
Jeremiah: That’s a great point. Setting goals and allowing the individuals themselves, regardless of whether they’re a child or an adult is “what are your goals?” We often talk about that at CIONIC: How do we create solutions to help people continue to do the things that they love, or do the things that they want to do that they love. What’s the key? How are you most successful? What do you think the keys are to creating that success for your kids?
Stacy: A couple things: one would be making it fun and motivating for the child. Nobody wants to do something that they’re not motivated to do. It’s way more fun to go to the playground than it is to clean the dishes. So, really trying to make our therapy play-based so they enjoy coming.
We also work really hard to find ways to help families incorporate into their day-to-day; because we’re not going to make a difference with somebody just coming once a week for an hour. We look to ways it can get incorporated into the day-to-day, to carry over, because then it becomes part of the routine and they get that much more practice and repetition, making it easier for them in the long run. And then, hand in hand with that is, helping the parents find ways to do it because if they have more than one child, if they are working … all the things to consider…we don’t want to make it a laundry list. I remember one time we had a parent come to us and they had gone somewhere else first, and they were told that they had to do this list of exercises 10 times a day, and the mom looked at me and said, “Do I need to quit my job?” And I said, “No, let’s look at what’s the most important one, what you think you can handle and how we can fit into your day.”
Jeremiah: Absolutely. That’s key; if it’s not sustainable, it’s going to be really hard to make progress and it’s easy for children, our child, to get discouraged. Finding ways to make it fun and enjoyable and part of play is key to her in development. But also, her being able to set goals and strive for them.
I want to take a step back for a second and talk about some of the science behind it. Now, you’ve published a number of papers including one on Developmental Coordination Disorder. And you discuss how neurotypical development is marked by an unlocking of degrees of freedom of movement. And that some of the challenges that DCD or other movement disorders are marked by is an inability to unlock those degrees of freedom. Describe that in a little bit more detail so that our audience can understand that and then talk through what are the techniques that you have found effective at unlocking new coordinated movements.
Stacy: Okay. I will give a really simple example. A lot of us have seen a child that’s a new walker, and they have those arms up and they’re wobbling side to side — there is not a lot of movement happening other than their feet. Well, as they get balance better, you see the arms start to come down, you start to see some rotation in the trunk. So, they went from holding the whole top half of them as one solid block — locking out all those degrees of freedom — to slowly bringing the arms out and letting some of that rotation come back to the spine, getting the arm swing — into adding layers to the movement that makes it look more like how you or I would walk. That’s one way of looking at the unlocking degrees of freedom; the spine is one area where it does happen a lot. Another place might be the knees. So, with somebody who is trying to sit down or go down a step, and they don’t trust that their muscles can support them if they bend that knee to slowly lower, they might keep them locked out and it becomes more of a plop down.
What we like to do is give the kids opportunities to practice that and work on unlocking it. So, in the Developmental Coordination Disorder study, what we found was that by using the universal exercise unit — which is just a tool that we have that allows us to provide resistance to movement — it let them take a movement that for the most part was a single degree of freedom; there might have been maybe two degrees of freedom. So just think about bending your elbow, and it let them practice that movement over and over again against a consistent force. Their brain and muscles got that practice of, “oh, I want to bend here, I want to bend here” and so they learned how to just do that without either tightening up somewhere else or doing extra movement somewhere else. And so what we do is we practice with that and then we carry it over to actual functional movement. So in the case of unlocking the knee, we might have them practice just that movement of bending the knee, and sitting down. We might practice going from standing to a high seat so they don’t have to unlock as much, so we grade the movement also, and then we’ll go carry over practice stepping down. So working on the same action, but in different ways with lots of repetition
Jeremiah: So, it’s breaking down the problem into smaller subsets.
Stacy: Yes
Jeremiah: One of the things I noticed in that paper was this difference between feedback control and feed forward control, and thinking about things that you talked about: contracting the muscle against a resistance versus unloading a limb into free space, and some of the challenges of coordination and movement planning that have to happen there. Can you talk a little bit about that difference between feedback and feed forward control?
Stacy: So, Feedback would be: you’re on the subway — back when people took public transportation — and it moves quickly, and your body has to react to that movement, because an outside force or movement was imposed on it that it wasn’t prepared for. Feed-forward, and, actually maybe that could be somebody who gets on the subway for the first time. Feed-forward would be somebody who gets onto the subway that commutes daily, and they know that when it starts they’re going to have a jolt, so they’re able to get their body prepared for it before it happens.
Jeremiah: One of the things that I find interesting in looking at our own daughter, and some of the things that we are trying to reinforce with our technology at CIONIC is how to create the connection between the plan and what the actual outcome is. And you talk about feet missing where the intended movement is going. You can do that through exercise, you can do that through strengthening. Talk about some of the other techniques that you use to help really map intention to outcome.
Stacy: We do a lot of different things. We use the Universal Exercise Unit just to give some movement experience…
Jeremiah: And, what is that Universal Exercise Unit? Can you describe it?
Stacy: It’s a pulley system that allows us to add weights in very small increments so that we can do strength training for kids. However, in the prepubescent population, strength training is by helping the muscles become more efficient and effective. So you’re not going to necessarily see the body bulk, it’s really working on helping the muscles coordinate movement. It gets better with the message from the brain telling the body what it wants to do, which then carries over to what we were just talking about.
We also use things like the Wii Fit — besides the fact that the kids love it and it’s fun — they are either trying to play a game that involves weight shifting, moving forward and backwards, adjusting (pauses) a lot of it’s weight shifting, so I’m just going to keep coming up with new ways to say weight shifting (laughs) Or, they’re doing yoga poses where they are finding balance and getting better body awareness, because then it’ll track like how much sway they had … how stable they were. So while we’re looking at that kind of stuff, they’re just thinking that they’re having fun and getting to play a video game.
Jeremiah: Ah right, it’s amazing how a technology that may be intended for a totally different purpose when used within a therapeutic context can provide, sort of a blend between the fun experiences of gaming and the therapeutic necessity of strengthening balance and proprioception. We actually do leverage gaming and coordination with our wearables to help reinforce those body positions as well.
So, it’s a good segue into technology as a whole. One of the challenges that we’ve seen, and that we hope to address is a lack of technology and technological advancements. When we think about what assistive devices are available today, it’s crutches, canes, walkers & wheelchairs — the same things that have been available for a long time as assistive devices — and yet we have cars that can drive themselves down the road. You talked about the Wii Fit; are there any other technologies that are used in your practice?
Stacy: We have done a little bit with electric stimulation. We don’t use it as often, but we have seen benefits with it. We’ve started doing Telehealth, but that’s a slightly different technology. The challenge sometimes, being a small practice, is that there are technologies out there, but they are outside the budget reach. So, they’re almost inaccessible to a practice like mine. So we will look at different things or if we can find low-tech ways or other ways — that we can take something like the Wii Fit and make it into that. The other interesting thing is just even using a treadmill or a vibration plate. But what can be limiting is some of the assistive devices and technology is either bigger or it’s hard to use out and about in the real world, especially for a child that may be self-conscious about their differences or want to fit in like. Even something low-tech like braces. We have kids that opt out of wearing braces because they want to wear shoes just like their friends. So it’s constantly finding that balance and being able to support them with that to maximize what they can do safely and help them to want to do it or to not be self-conscious.
Jeremiah: You make a really good point about the stigma of disability. And stigma of assistive devices and one of my favorite companies, Open Bionics, has been applying design thinking and the socio-emotional needs of their patients as well and making partnerships. So they make a prosthetic hand and that prosthetic hand looks like Ironman’s hand or it looks like Luke Skywalker’s hand. And all of a sudden, something that used to be this sort of not appealing, tries to be plastic-looking flesh, became something otherly. Something bionic — something that feels enhanced. You hear stories about that in MRI machines, that they’re painted up to be their favorite fantasy lands., I think that as we think more and more about that, it’s not just kids who respond to that, it’s adults as well and over time, I strongly believe that more and more assistive technologies will reach the same status as eyewear. Eyewear is something that helps people overcome a vision difference, but it’s also a fashion statement and people can be expressive. There’s just so many people who have it that it’s just sort of fashion, right? So you did talk about telehealth, and we are still in pandemic times. Talk to us about your transition to telehealth, the pros, the cons and what you see as the future of remote healthcare.
Stacy: Yes, so we were lucky enough, I guess you could say, that I had been doing a lot of research into telehealth prior to the pandemic hitting because I was looking at ways to be able to reach a greater geographic area. In smaller towns or other places there may not be the support that families and parents want for their children. So, how can we support them? And I had been looking into it, you know part of the challenge is change is difficult for anybody. And so we had been working on introducing it to our staff and really talking through like what they foresaw the potential challenges to be, the obstacles, barriers and really trying to address those. I laugh; I had actually gone down to the clinic that Monday, I think March 16th, to answer questions, go over everything. I had done some practice simulations and really address all their concerns. And at lunchtime the stay-at-home order came through, and we saw our first child through telehealth that evening. So, it was great that we had already done a lot of that leg work leading up to it. Not to say that there still weren’t concerns and perceived barriers, but what was great was we had the infrastructure ready to go. And so, then it was really about the therapists buying into it so that they could help the families and the children buy into it. It is an option that is there and it’s not perfect for everybody.
One of the things that we really had to talk through is there were some kids that didn’t cooperate — I mean shocker, kids didn’t cooperate (laughs). The parents have trouble getting them to do anything; the child listens to the therapist more in terms of some of these more challenging things more than the parent. So one of the things we looked at was this is an opportunity. Even if it seems like nothing is getting accomplished, if by the end of say several weeks, a parent is able to get their child to walk with them, where before they would refuse to, that is a huge gain and that has accomplished something. And it may look different than us putting our hands on or us facilitating the movement because we’re now empowering the parents to carry this over. We’ve also empowered the kids; we’ve had several kids that they run their own thing. They’ll say “hold on, I’m out of I’m out of the screen. Let me fix this”. Or, we get kicked off and they get back on. And so they’re taking initiative and ownership of their exercises and their goals.
It’s helped for parents learning how to support their child, but also really showing us how they are able to do the exercises or activities with their kids, and then troubleshooting. Sometimes in the clinic it’s too easy to say, “Oh yeah, I understand”, and we don’t always get to see them do it and especially not see them in their regular environment. And so we’ve been able to support with troubleshooting by seeing their environment and really come up with solutions for the family or see some of their day-to-day struggles that maybe we’ve heard about, but couldn’t visualize before. So there’s been some really great things.
We’ve definitely had some challenges with kids who maybe are on the autism spectrum, where electronic devices like screens are used primarily as an incentive and so by making it therapy, it’s taking away some of that benefit. Or, the kids are just, from being in school (connected/distance learning), they are done with screens and it’s too much. So we’ve still looked at ways to get creative with that too, whether it’s the parent having something up higher or talking through with us. And some parents just don’t have the time right now or they have multiple kids, they’re working remotely, they’re helping their kids with school. So, those are some of the challenges. We’re doing a little bit more of a hybrid now, but I don’t think that telehealth is going to go away even as things start to open up. I think that there has been some conveniences for families. I think that it cuts down on commute time, especially in the Bay Area — that can be a big challenge. And it could be too, that the parents can’t get to us in time after work with the commute. But now, maybe they can do one session in the clinic and one session remotely. So, it allows us to support our kids and families even more and fit into what they’re capable of. As we talked earlier, I can come up with the world’s best plan or I could tell you “you need to come three days a week and do these exercises another five days a week” and it’s going to look great on paper. but it doesn’t mean anything if nothing gets done. So, while we set a plan, we then work with the family to find out what’s going to work best so that we can prioritize the pieces that are most important.
Jeremiah: You mentioned a couple of things that are advantages in telehealth, and one of them we talked about a lot as being a gap in care is understanding real life, real world context. For our daughter, she can go in and have a gait analysis performed in a lab and they can tell her which things she needs to work on. Then she gets into school, in her classroom, and people are bumping her and jostling and all these things and you ask how do you better understand contextually their life. With a remote telehealth session, at least you can see what their world is like at home and start to come up with solutions for them in the home. Over time, we hope that technology like ours and others can provide context and really able to visualize both what’s happening within the neuromuscular system and what’s happening within their environment, so we can start to have more nuanced strategies for them to move throughout their world.
Stacy: Agreed. And that touches on one of the big things we do. It’s no good if the child can do a skill only with us or only in the clinic; we need them to be able to generalize it out to their day-to-day life. And so, it’s great the first time they accomplish it, but what are the other scenarios that you need to add in there so that they can help prepare for them and have some of that feed-forward control.
Jeremiah: That’s that’s right. And I do know that you are an Adjunct Professor at a number of different Physical Therapy schools as well as a guest lecturer at others. How are you helping to prepare this next generation of therapists for what the world might look like and how therapy can be advanced.
Stacy: So one of the things that’s been interesting is, we’ve now done several Labs virtually because of the way the times are. So, it’s helped right there to have students think outside the box to be able to see maybe some more real-life situations. As opposed to just having a child come in or only doing simulated activities. They’ve been able to put stuff into application. I also spend a lot of time as we talked about earlier, it’s the family and the child’s goals that are important. It’s not “can your child stand on one leg for 10 seconds?” That doesn’t mean anything in the real world. It’s “what are they not able to do, that improving their balance would be helpful?”. So the goal might be that they are going to step from the car into school independently, and that involves them having to be able to step up a curb. So really making the goal functional and really having them see that, because a lot of times their thoughts are around more of an outpatient orthopedic setting where it’s “oh I had pain in my shoulder. I need to get this much strength and this much range of motion” and how it’s more global with kids. And really helping them to understand that and to see how important it is to make it fun. You can’t just tell a child, “I need you to go do three leg lifts”. Looking at adults and kids; an adult, I can work with maybe two at the same time and kind of go back and forth between them. Kids, you need to have your focus on them because not only sometimes are you helping them, you’re also keeping them motivated, you’re setting up the scenarios or the environment. It may not be that they’re going to follow a command, but if we set up the environment where they have to do the skill that we want them to do, we get it that way and that kind of looks at the single-leg stance versus being able to walk into the school. So walking into school sets up the environment of having to step up a curb. So they’re getting that practice every day, rather than just standing by a step and stepping up and down.
Jeremiah: Yeah, absolutely. Function is everything. How do you help people move about their daily life and do the things, as we spoke about earlier, that they love to do. You’ve had a great and fantastic career in physical therapy, and when you think about the future and what does practice look like with it? We talk about the science and technology of human human ability. Let’s talk about the sci-fi of human ability. What does it look like in 20 years? What does your practice look like and how will we better improve our world and environment for people who are living with disability?
Stacy: I think that’s a great question. And I think it’s always great to look to the future and one of the things that I think is going to have the biggest impact is the normalizing of disability, where it’s not somebody is different, it’s just that that’s who they are. Just like I have curly hair and somebody else has straight hair. It’s just part of who that person is and the disability doesn’t define them.
I think that advocacy continues to grow and it continues to be a conversation and through that, we continue to improve access so that we’re not constantly looking to the individual to make all the adaptations; the world is adapting. So that, having a wheelchair or having a walker isn’t the limit anymore because right now the limit really is “can they access spaces?” Like I know my apartment building there’s an elevator, but you have to get up four stairs to get to that elevator. I have a friend in a wheelchair who can’t come over because of that. I think through all of that it continues to drive more research, which helps with improved design as we were talking about earlier. It helps with improved treatment techniques or not just modalities of treatment, but how we approach treatment and therapy. I don’t think some of these devices, you know, we’ve talked about design. I don’t think they’re going to go away … they might look different but they’ve become more normalized and so that it decreases, in looking at the kid population, it decreases parents being self-conscious or the child being self-conscious. I’ve seen it go both ways. I’ve definitely seen the parent who doesn’t want to go out because they don’t know how to handle questions or situations where their child doesn’t know that doesn’t know any different. I’ve also seen where the parents maybe are pushing for the child to do more but they are very self-conscious — a lot of it depends on where the ages for the child. So, I think that what’s going to happen in the future that will be the biggest impact is all of those things will culminate, so that it’s just like us wearing glasses like we talked about earlier. It’s just part of who we are.
Jeremiah: Well I can tell you I’m excited about that future one where a person’s difference is just part of who they are where technology has provided access to the things that they love to do. And so that no longer disabled means not able to do something. But if we’re able, even if we have a difference or we have a disease or we have an injury that would have previously prevented us from doing it, maybe we can find a world beyond disability.
Stacy: Yes. I would love that world.
Jeremiah: Well, that’s all for this episode of Superpowering the Human Body. Thank you all for listening. And thank you Stacy for all the work that you do and for joining me today and sharing your perspectives.
Stacy: Thanks for having me.
Jeremiah: You can subscribe to our podcast on Soundcloud or YouTube so that you never miss an episode and until next time this has been Superpowering the Human Body.
