Unveiling Taming the Zebra: A Discussion with Physical Therapists Patricia Stott and Heather Purdin

[01:41] Dr. Linda Bluestein: Welcome back, every bendy body. This is the Bendy Bodies Podcast, and I'm your host and founder, Dr. Linda Bluestein, the Hypermobility MD. This is going to be a great episode, so be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Patty and Heather, hello and welcome to Bendy Bodies.

Heather Purdin: Hello.

[02:07] Patricia Stott: Thank you.

[02:08] Heather Purdin: Yeah, thanks for having us.

[02:09] Dr. Linda Bluestein: I'm thrilled to get to chat with both of you. Okay, so we are going to talk about this book and I'm going to hold— start by holding it up here. So if you're, if you're listening right now on your podcast player and you're not watching on YouTube, you might want to hop over to YouTube if you want to see what the book looks like. Of course, we're also going to give you a link in the show notes so you can check out the book as well. As I said, it's called Taming the Zebra, and it's a really— how many pages is it? 300, 400, 416, 417 pages, something like that. And this is volume 1, I believe. So you'll have to definitely give us lots, lots more details about that. But I'm super excited to chat with you both, and I first want to find out why you decided to write this book.

[02:58] Patricia Stott: Well, I think, you know, Heather and I got linked up through Leslie Russek, who, um, who does a lot with, um, the EDS Society and with EDS in general. And Heather and I realized we both had the same idea of what we wanted to get out for information for other physical therapists, and it wasn't out there yet. There was really a lack of understanding of what a therapist needed to know to be able to work with this patient population. So we were, we were really trying to fill a void that was there, and it is accessible by patients as well. So patients can use it, but for the physical therapist especially, and that's why there is so much information is because I do think that physical therapists can do so much for this patient population. And if they understand the complexity in hopefully the way that we're presenting it, they can do a lot more good and maybe find some different things that they haven't tried before, explore different things with the individual. So yeah, pretty much filling a gap, I think, is what we were trying to do with it.

[03:55] Dr. Linda Bluestein: And what, what specifically, Heather, can you tell me drove you to write a book about managing EDS and HSD through physical therapy? We know that physical therapy is so commonly recommended for people with EDS and HSD. As someone who has hypermobile EDS, I've been in and out of physical therapy since I was a teenager. I don't know where I would be today without amazing physical therapists in my life. I probably wouldn't be moving at all. I know that they've been incredible for me. But I also know that, you know, like Patty just said, it can be hard for physical therapists to know how to manage this population. So what for you specifically, you know, kind of drove you to write the book?

[04:39] Heather Purdin: Yeah, we would get patients in that had been to 4 or 5 bouts of physical therapy having failed each time. And having gotten worse and then kind of being afraid to even start and not trusting in physical therapy anymore. And I love our profession. I think there's so much good we can do. It's such a cool job. Like, we can treat the mind, the body, you know, and put it all together. We have a lot of flexibility that way with like how we can help teach lifestyle changes and all of that. And I hated to see that we were failing our patients. So I wanted to kind of get out like what was working for me. And then it was so fun to talk to Patty and be like, it's the same, that thing that works for her. And then talking to Leslie, it's like, we're like, okay, we're onto something here. There's, there's something that PTs need to do a little differently, that just a few little tweaks here and there that can make it go from unsuccessful to successful care.

[05:33] Dr. Linda Bluestein: Absolutely. So what will people learn from the book, Taming the Zebra?

[05:40] Heather Purdin: Hopefully a lot. We try to cover the entire body, all of the different systems of the body. The thing that, like, we didn't learn in PT school was that someone with hypermobility has a connective tissue disorder, meaning that all of the connective tissue in their entire body is affected. And so that's going to impact every organ system. It's going to impact their stomach, their eyes, their nervous system, how their autonomic nervous system is impacted, the immune system. And then all of those systems will impact how the person reacts and responds to the physical therapy that's prescribed. And we never learned about that in physical therapy school. How like someone's immune system or how they're like autonomic state of being kind of in a fight or flight state might impact their ability to calm down and do an exercise using the correct muscles. Their body might be more likely to use a fight or flight muscle like that's good at punching or good at running, but not great at controlling the, the fine control of a joint alignment and joint mechanics during a movement. And so it should teach the why, the what's going on in the background to help therapists and patients be able to problem solve a little bit better. And that it does give practical tips for like, okay, so then what? What do you need to do differently in PT if the person is having this stomach issue or this dysautonomia problem or this mast cell issue? Like how can you modify what you're doing to make it more successful for the patient.

[07:05] Dr. Linda Bluestein: Okay. And I just want to clarify too. So, when you're talking about hypermobility and connective tissue disorders, you're talking about generalized hypermobility, right? That if someone has hypermobility in multiple joints, then you would definitely suspect that they have something going on with their connective tissue more broadly. Because I know that, you know, if someone— of course, there's the 4 types, right? If it's localized, if it's like a couple of joints, maybe that's related to an injury or maybe they have hip dysplasia or something like that. So, I just want clarify if there's some people listening, they're like, wait, I didn't think that that necessarily meant that you had a connective tissue disorder. It depends on the type of hypermobility that you have, right, in terms of the implication for having a connective tissue disorder, right?

[07:48] Heather Purdin: And we do cover all of the diagnostic measures that PTs can apply in the clinic to help know if this patient fits this category or not and kind of give checklists that would help you to be a little maybe more suspicious that there's something going on with the immune system, because not every patient even with hypermobility is going to present with an abnormal immune response at the time they're coming to PT. But if they are, it's nice to know, like, what are the signs and symptoms to know that, like, oh, wow, we might need to get you off to the right provider and make a good referral to have some help in supporting the immune system so that the patient's not reacting so much that they can't tolerate what we're doing in PT.

[08:26] Dr. Linda Bluestein: Yeah, that's a really good point because that's one thing that's, I think, so challenging for all of us is how diverse this population is, right? They're like, if you say that if you've seen one EDS patient, you've seen one EDS patient because they're— they can be so different from each other, right? So it's really helpful to have resources like the book that you can look at and say, oh, I wonder if this person does fit this particular set of problems.

[08:40] Heather Purdin: So, right.

[08:55] Dr. Linda Bluestein: Okay. And how— so you said the book is for— it's written so that it's accessible for laypeople, but, but really the primary audience is physical therapists. Is that, is that correct?

Patricia Stott: Yes.

[09:10] Heather Purdin: Yeah, we've tried to interject some stories in for patients to help make it more relevant, how this might look in a patient population and to be interesting, keep it more interesting for the physical therapist too. And then some, we've blocked out some summary blocks that explained for the physical therapist, but then also for the inpatient language. What's the take-home message here? Like, if this material is getting heady and it's like hard to follow, what's the real thing that you need to pull from this section, especially if it's a really critical point? We try to pull those out in nice colorful blocks to make it easier for the reader.

[09:47] Dr. Linda Bluestein: Yeah, and you did that very well at the beginning of the chapters as well, where you have the key points, and that's really nice so people could really get a good solid read on what it is that they're going to learn in that chapter. And then they can read the chapter and then go back to what those key points are. I'm curious to ask you, Patty, what makes managing EDS and HSD so challenging and complicated?

[10:12] Patricia Stott: Well, I think both of you had alluded to it already in what you've already said. And if you've seen one EDS patient, you've seen one. And as Heather says, it's, it's layered and it's complicated and it's all of the connective tissue. So especially for physical therapists where we're sent a patient with EDS and they're complaining of localized pain somewhere, we actually do have to realize that that localized pain can be fueled by mast cell activation syndrome. They could be in a flare-up. It could be fueled, as Heather said, about their, their autonomic state that they're in. You know, as the physical therapist, it really is our responsibility to understand those connections if we will be working with these patients. So it is very complicated and complex, but if you do understand the role of connective tissue in each one of these systems of the body, then you can actually start to pull it back in for the individual sitting in front of you. So I always say it's, it's very simple and also very complicated. So again, it's, it's treating the individual, but we have to do it from this very broad scope of understanding how malnutrition could affect healing, you know, for our patient that's in the clinic. So as, as you both beautifully said, it's— it is layered and it's complicated, but it's also very individualized to the person that's sitting in front of us.

[11:31] Dr. Linda Bluestein: Right. And, and how is this book different from other books about EDS and HSD?

[11:37] Patricia Stott: Well, as Heather said before, we're concerned about the why. And, um, you know, there are so many great physical therapists out there like Heather and I before we started specializing in this, there's still a lot that we needed to learn, and we're still learning as we go through. So every, every therapist has their superpower that's out there, but perhaps it's not exact for the EDS population, but it could be if they just knew this one or two thing that could help them, you know, kind of fuel their practice in understanding how to modify what they're doing for EDS a little bit better. So what our book tries to do is really explain the why behind everything. The why might somebody have tethered cord? What are we seeing in the science? And then knowing that as a physical therapist, well, we're not just going to go ahead and stretch them, but we might have to refer them out and, you know, steps 1, 2, and 3 as well before we really get into movement and mobility. So this book really tries to give more of an understanding so an individual therapist can take it and really, whatever they're doing as their superpowers, be able to just really add to their own practice. So it's, it's not a cookie-cutter type of recipe as, as for, well, if this, then this, because we are all so different. So that's really between Volume 1 and 2, really, you know, that's what we try to do is just give this, this idea of the things that you could possibly be doing for the individual.

[13:04] Dr. Linda Bluestein: And seeing them as a whole individual, I think, is something that's so beneficial and so often doesn't happen. We can get so laser-focused on one particular part of the body. And of course, our current medical system is terrible for that and kind of encourages us to do that because it keeps trying to compress more and more things into the day and can be very challenging. But I think that's great to really look at the whole person for sure. How would you approach this process differently knowing what you know now?

[13:39] Heather Purdin: So do you mean the process of book writing or the process of caring for patients?

[13:42] Dr. Linda Bluestein: No, well, actually, that's a great question. That's a great question. I guess different in, well, let's do, if you're willing to answer both, I would actually love to hear the answer to both.

[13:52] Heather Purdin: Yeah, I'm going to answer the second part first. So in terms of how to approach patients, I think a lot of PTs, and me too, felt the pressure to like, you got to get in there and do something you can bill for. So it's got to be range of motion or strength, like those are the billable PT things, you know. And these patients have plenty of range of motion, in fact more than needed. And they might be really weak, but they could be strong but just very painful, like they're not tracking well. So it's the how they're moving that's more of the problem. And a lot of these patients when they come in have had horrible medical experiences, like, and potentially several horrible PT experiences. So building trust is really important. And the concept of like sitting and talking to a patient for an hour and billing for that time and not feeling anxious about needing to jump in and do a strength exercise right away to be able to feel like you're valuable. You know, we've now learned in pain science that like education about pain actually is really effective at reducing the pain. And so now we've proven that the talking works, you know, so like talking to the patient and doing a lot of education about, hey, why, why is your body feeling wrong or not right, not working for you the way you want it to? Like, what are the different contributing factors for you? And learning that from the patient and then being able to reflect back and explain to the patient like how that could have spiraled into something where now they're in this state in front of you where they don't know how to move forward without your help. That's really valuable time. It builds trust with the patient, and the education alone, like, brings the stress down. It brings the autonomic nervous system's tension down. It gets the muscles more relaxed. They're already in a better state now to receive more traditional physical therapy. So knowing that you can spend a couple of visits to build trust and to do education, but then also to be making referrals. So, like, as I'm learning about what's going on with the patient, I'm like, okay, well, I think we need a referral out to a mast cell specialist, or we need a referral out to someone that can help do a little bit more testing in this area, you know, with your autonomic nervous system or sensory system or your gut. Maybe he's got problems, I need to get you to a specialist in gut function. So just all of that support is going to bring the pain level down for the patient, it's going to calm the autonomic nervous system down and make PT go easier. And so it's time really well spent, like, so spending 2 visits mostly talking is the thing that I learned works the best for this population. And I feel like PTs need to know that's okay. And that is billable as a therapeutic activity or a life management activity.

[16:18] Dr. Linda Bluestein: And I'm curious before we go into the book writing process, how that's received by patients because I feel like, you know, expectations are so important, right? So if somebody comes in and they're expecting to leave with a set of exercises and I mean, you know, I think sometimes people think, oh, I'm going to get better after the first couple of sessions, you know. So I think it's good for people to hear this to realize it may— things may evolve and look a little bit different, but it's because we're trying to think of them as the whole person and because of the way that, you know, you're trying to train other physical therapists to care for this population. I'm just curious though how that's received by your patients.

[17:05] Heather Purdin: Yeah, I would say you do have to, you do have to ask the patient or read the patient to try to determine what is their need. I tend to get the more complex cases in our clinic. So I'm usually got the ones that have failed in PT and other places and nobody else knows what to do. And so they're very glad to know that I'm really listening and trying to understand what's going on. But I'm reading that and feeling that as we go. If the patient's already like, you know, they're an athlete and they've had a setback and they're not able to get to their workout and that's their main thing, we're gonna jump a lot quicker toward that direction. So like you definitely have to still have that conversation about what the patient's goals are and kind of get a read on that as you're doing your interview process.

[17:44] Dr. Linda Bluestein: Okay, that makes sense. Okay, so what about the book writing process? Are there things that you would do differently knowing what you know now?

[17:54] Heather Purdin: I don't know, Patty probably has, Patty's a good project manager, so. We would probably have Patty like make a schedule and then like just have it like flash on the screen.

[18:05] Patricia Stott: Yeah, for background information, we, we started this project before COVID or like right around the time that COVID hit. Um, but don't worry, we, uh, we are really good at learning from our mistakes and I think that's why we're such good clinicians in this population. Um, so everything that we did wrong, we are ready to go with volume 2 and like we have everything lined up so it should not take 4 years to get this next one out. Um, so I think we've, not that we're doing everything differently, but we're definitely, we bit off more than we could chew. This was going to be one book. And as we started writing it, um, it was evolving past 600 pages going towards 700. And we realized, and we hadn't even gotten the pictures with the exercises in yet for volume 2. So we realized, okay, we need to take a breath. We know that there's so much that these physical therapists need to know, but we had divided out into volume 2. So, um, so I won't say, I mean, we have the opportunity to do it differently for sure in, in approaching volume 2 in a different way of doing it. Um, but I'm hoping that the information that we have in volume 1, um, besides maybe some other people out there taking those chapters and expanding with their own books so that they can really dive into some of those subjects, especially in the, the idea of physical therapy, would be wonderful in the future.

[19:23] Dr. Linda Bluestein: Okay, and I want to focus on some parts at the end of the book because I feel like there were some really, some really good sections in there. And you talked about your primary treatment approach. Can you explain what that is and why you think that approach is so important?

[19:39] Patricia Stott: Okay, so we tried to throughout this book use as much visuals as possible because, well, we love visuals and it's a lot easier for people to look back at and and reference, especially if you're a provider, but it's great for patients too. So, um, there is something out there called the SPIDER model. So while somebody was developing the SPIDER model, um, we were sitting down and just writing down what are the things that we primarily look at that would affect what we do in physical therapy specifically with the individual. And these are the things as the primary issues that they absolutely need to be addressed if we want to ever get to what the person is complaining about. So the primary issue is actually not always necessarily what the patient is complaining of verbally in your office as to why they're coming in. However, the primary issue is the thing that does need to be addressed first or in tandem to make any changes with their complaint. So we divided it up into the things that we commonly see. So there's deconditioning, there's inflammatory responses, anxiety-type responses that could also be dysautonomia. It could be pain. There could be instability. So there's a number of things that, that could be looked at. And this actually, it could be fluid because we could have somebody go through a flare-up, become just deconditioned, but it's just a reference that always provides a spot to come back, especially for providers to take a pause and say, okay, I know I really want to work on their knee, but I also know that I'm not going to get anywhere if they're so incredibly flared up from this last mast cell incident that they had. So going through the figuring out what the primary issue is just helps direct treatment a little bit better or referrals out from the provider and understanding that this has to be taken care of as well.

[21:31] Dr. Linda Bluestein: So even though they might be complaining of, we'll use the knee example, that might be their chief complaint or their chief concern. But, uh, you're saying that you look at these other domains and I know what you're talking about, about the spider model, um, uh, for sure. So, but you're looking at these other domains to see where they're having problems in each of these domains to help you to determine what is truly the primary issue, even though it's maybe not the same as their chief concern.

[22:00] Patricia Stott: Yeah. And especially with these patients, we wanna make sure that we have the best long-term outcomes. Mm-hmm. I think that there, with great physical therapy, you can have really good short-term outcomes and get relief for 24 to 48 hours. But it's addressing that primary issue and understanding how to look for it that will really provide better long-term strategies in the future.

[22:22] Heather Purdin: Yeah, so like if the pain is being driven by inflammation, we would want the patient to have that addressed. So we'll need to get a referral out to a doctor that can help them with that. Or if the pain is being driven by an instability, then we might want to like be working on stability things. So we're kind of looking at almost like a pyramid model, like what's causing other things to happen. And then like once we kind of work one way down, like, okay, well maybe this is causing these other symptoms over here. And so the primary issue as we work through them, like might change over time, but we're trying to pick off the thing that's gonna affect the biggest symptom, um, under the pyramid, if you will. Mm-hmm. Um, so we can like get as much, uh, benefit for the patient as possible.

[23:01] Dr. Linda Bluestein: Sure. And, and we know that, uh, overlapping problems are really, really common and you talk about that in the book as well. How do you suggest that people with overlapping problems, how do you suggest they approach physical therapy?

[23:14] Patricia Stott: Well, that's tough, and that depends on are we talking about how the patient should approach it or the provider, how they should approach it with the patient. I always tell my patients too, like, you are not responsible for figuring this out on your own because even for us as providers, and Heather, if you want to comment later, I don't want to put words in anybody's mouth, but especially for me, knowing all the things that I do, I still need to sit down with somebody and have them tell me, didn't you see that this was the problem, that we need to work on A, B, and C? And I'll be like, oh gosh, you're absolutely right, but I couldn't see it for my own treatment plan. So it's really, it's that provider providing the guidance to the individual of figuring out what those issues, what that primary thing is, because when you're in the moment, it really could feel like knee pain. It could feel like knee pain is the thing that's really limiting you, but as Heather said, if they're in an inflammatory type of state, then we're not going to get very far, but they really want the knee pain better. So it's really about guidance. So from the, the provider specifically and figuring that out for them, but from the patient's side of things, it's also understanding that really when we're talking about a healing strategy, picking 2 or 3 of those primary, secondary, those big things that we need to address, that's really what, what we can handle. We're not going to be able to work on mast cell issues at 100% along with dysautonomia issues at 100% and the knee 100%. There's going to be some ups and downs in, in how much we put into the effort of each one of those. So as the patient, we need to understand that there's going to be a group of things that we're going to focus on for a little bit and see if we can make some headway in them. And then if not, again, back to the guidance of the provider to figure out if anything needs to be manipulated and adjusted. So this is teamwork. I mean, this is when you're in physical therapy as a zebra, this is absolutely teamwork between the therapist and the patient.

[25:16] Heather Purdin: Yeah, I feel like health coaching is like a part of the job as well, just it can be really hard to manage as the patient when there's so much going on and for the patient to get overwhelmed when like not knowing, like I've got like 5 different doctor's appointments, they've all told me to do 5 different things, like what's the biggest thing to focus on? I can only focus on one thing. I have brain fog after all. Like I can't even like remember what they told me, you know? So I feel like part of the therapy is helping the patient to say like, hey, I feel like you're gonna get the biggest bang out of this one if you have to pick one thing. Like, let's work on this. Once you've got a good handle on that, then we can bring in the recommendations for the other pieces you're supposed to be pulling into your life to try to get them kind of on the fastest track possible.

[26:00] Dr. Linda Bluestein: Yeah, it is really hard for people. The patients that I talk to, I definitely observe that, that they get conflicting recommendations or they're getting, you know, multiple different recommendations. And sometimes they have so many different people on their team, it can be really, really challenging. And like you're saying, you can only work on so many things at once. For example, you're starting a new supplement or a new medication. I always tell people to make one change at a time because otherwise they can't tell what's actually having an effect. So yeah, definitely the coaching part I think is really important for zebras.

[26:34] Heather Purdin: Yes, I feel like we're the hired scientists, you know, like we're kind of helping them to stay on a scientific process. You know, like, wait, wait, wait, don't add that yet. You've already, you just started this other thing. Like, give it a couple days, you know? And then like, write down, write, bring your thing in that, you know, you've written down like how you did. So then we can like remember that you had this flare up with that. And they go, oh, that's right. I forgot. Write that down to tell your doctor at your next appointment. You know, that's important. Cause they might wanna adjust the plan. So I feel like there's a lot we can do to help, um, just with like the coaching and not being that scientist that behind the scenes that we're seeing the patient more regularly usually as well, you know, than the doctors are so we can help them to stay on their doctor's plan, you know, and following step by step and adding to. So that's another big piece that as a PT that we can do that's really, really helpful.

[27:21] Dr. Linda Bluestein: Yeah, it can be hard to keep track of the historical aspects if you're not writing things down. It can be really, really hard to remember when you go in for that appointment 6 weeks or 8 weeks or whatever later and trying to, have that recall because usually there's a lot that's transpiring. And also, like you said, brain fog for sure.

Heather Purdin: Right.

[27:40] Dr. Linda Bluestein: So, so a lot of people, myself included, have been in and out of physical therapy and have not always had a linear path. Well, whether it be with physical therapy or with other treatments that we've been trying, how can this book help them with, with that, if that's something you think the book can help with?

[28:00] Heather Purdin: Yeah, I think using kind of using the pyramid scheme or the flowcharts that are in there about like choosing the primary issue can, it really kind of explains how you, the path is not linear, you know, so it divides into like if the person's presenting this way, is it like this or like that? And if it's like that, we're going to kind of go this direction with it and then do your PT kind of more this way, but then the patient might present completely differently the next visit. So then you're kind of reassessing each visit. Well, maybe they're out of their inflammatory flare, that's no longer the primary issue. Now that's gotten resolved, the referral worked great, you know, the doctor's really helping with that. So now we're really having to deal with more instability, you know, so now we're on to that path and trying to use those principles behind the process of treatment. So I feel like it's applying the principles no matter what is about as linear as you can get with it. But if, yeah, if a patient comes in and they're really stressed out and their autonomic nervous system's in a tizzy and they didn't sleep well and they didn't drink enough fluids, they're gonna have a really hard time focusing to get your exercise correct. You know, to actually be able to engage the stabilizing muscles anyway. So, you know, spending some time then like calming the nervous system down is well spent. And like, let's get hydrated and let's, let's maybe modify this to a laying down exercise instead of a standing up exercise. So it's less taxing on the autonomic nervous system. So your, your goal might still be the same that you're trying to activate that stabilizing muscle, but like the how you go about getting there might completely change based on the presentation. And so I guess I see, I see lines within the, within the scheme, you know, they're still happening. They're just like, it just went from this way to that way. You know, we're still working on the knee strength. We're just not doing it standing today. We're doing it laying down. Yeah, and then we'll talk a little bit more, I think, in a little while about kind of our kind of general guidance about working through kind of physical therapy in a stepwise fashion.

[30:01] Dr. Linda Bluestein: Yeah, and I think sometimes people get hard on themselves if they do experience setbacks like that, and/or, you know, I think it's helpful to do the detective work to a certain extent. To some extent, but getting too caught up on why did this happen, why, you know, I mean, sometimes we have an explanation and other times we don't, right? So I think, you know, it can be very helpful to have those touchpoints. As you're saying, you know, you all have probably much more frequent touchpoints than, you know, somebody like me would most of the time with these patients. So you can help them either sort that out or say, reassure them that you're doing the best that you can and let's keep going and let's, like I said, calm your nervous system so that they don't get stuck on that basically.

[30:49] Heather Purdin: Right. I like to teach the exercises in different positions for patients too so that they know, like depending on how their state is for the day, is this an upright day, a sitting down day, or a laying down day? So like you've got your options, you know, that you're still, it's a workout day, so how are we going to do it today? And then they can kind of pick from their menu of like what works for them for the day.

[31:11] Dr. Linda Bluestein: I love that. So rather than saying, I'm not having a great day, so I'm not going to do this at all, you're modifying to do something in a different position that's going to maybe be a little bit gentle on— gentler on your body so you can still get the movement in.

[31:27] Heather Purdin: That's right.

[31:28] Dr. Linda Bluestein: Yeah, I think that's great. Speaking of, we know that deconditioning and weakness are keystone or primary issues for a lot of people. And unfortunately, some of the people that are experiencing these problems are really, really young. Do you have suggestions for how people can even just get started if they're— whether they're young or not, if they're spending like most of the day in bed, for example, how they even can begin working on improving their conditioning and their strength all of the things that we know that might be beneficial.

[32:07] Patricia Stott: Yeah, well, it certainly is going to start with a conversation with somebody as to why they are horizontal for most of the day. Um, you know, and we have all of our little figures in there, takes you through the, the thought process of going through, well, are we sure that they didn't have a mast cell flare-up? Look for these things. Are we sure that it's not dysautonomia and they just don't tolerate vertical? You know, is this really purely deconditioning that's come from somewhere, or is it neurological? So understanding the why behind it is very important. So there has to be a conversation first because we want to make sure, you know, like Heather gave all the examples, that we're not forcing them into vertical conditioning when their system is not ready for it. I like to tell people that it's about intention first, especially if we're talking about deconditioning, that we're just trying to train the body to accept a regular dose of something every day. So if somebody is more of a neurological presentation because of their deconditioning, say it's upper cervical instability, that their work on deconditioning is actually going to be minimal cervical stabilization exercises that we gave them. That is actually the first goal that we're working towards the conditioning piece. You know, if it's somebody that is purely just deconditioned and I haven't seen this in a while, knock on wood. So I feel like there's a little bit more education coming out, but perhaps their doctor had told them or a parent that because they have hypermobility or EDS that they shouldn't be participating in recreational activities, and they develop kind of that fear avoidance. So they're afraid to actually participate, or there's an injury and they're afraid to return. And that's going to take a lot of work with the physical therapist or a rehab professional in determining, well, what are the safe things to build confidence in that horizontal position to work first on the confidence so that we can get you back into a safe strengthening program. So there's, there's so many layers, and I think that, you know, and I, I was guilty of this for some time, a very long time. So I'm not trying to call physical therapists out with our book because I was in general orthopedics for 15 years and frustrated myself when my patients weren't getting better. But I didn't have this mentality of thinking outside of you know, just one reason for deconditioning is because they're not doing anything. It's, there's all of these different layers that we can become aware of and these different tools that we would need to learn for this, this patient population. You have to have tools that are outside of the norm that we think of for physical therapy really to help. So again, it's about intention first, you know, what, what are our goals working towards? And then I'd certainly want to talk to the individual of what do you want to do? Because currently, if your goal is to be running or you actually hate physical activity, I want to know that because I'd want to find something that you'd want to participate in or something that you'd be excited to look forward to. So team mentality, again, kind of we're coming back to the same talk, and it's, it really is, it's the why behind everything. And again, that's why we have this book out. We really need the therapist to look into the why so that they, they start down the, the correct treatment avenue, even when we're talking about deconditioning, that it might be a referral out to a mast cell specialist. And then we regroup on the exercise piece.

[35:20] Heather Purdin: Yeah, one of the things I think that, like, Patty and I and Leslie all came to the same conclusion is that it's very hard sometimes to start with strengthening, even though that's where we want to be. We want to help the patient to get stronger. But it's almost like we have to do neural rehab first. We've got to get the body to figure out how to fire the small muscles that are going to control tracking in the joint and have it go smoothly. And the right amount of contraction so that's not like a massive, you know, kind of a seize-up situation. If the joint isn't tracking correctly and the wrong muscle's firing, it pulls it off track and it feels really bad. And unfortunately, we do respond to the pain by tensing up more, so which just makes it worse. So that's where it can kind of spiral. So we talk a little bit, we've got a really nice graph in the book about, you know, kind of looking at joint tracking and alignment and muscle tension balances. And trying to bring, restore a little more balance to the tracking and the tension in the muscles first. And then really teaching the patient how to do that for themselves, how to kind of assess that and know that they need to do that in order to have a more successful start to exercise. So that they're gonna start out tracking correctly. We're learning how to engage the muscles that are gonna stabilize the joint. Then we're learning how to engage them while moving the joint. And then we're gonna load the joint. So there's a lot of steps to get to strengthening successfully, especially in a very deconditioned patient, because there's like a mismatch in the nervous system between the information about where the joint is and like how much muscle firing is needed. And so sometimes the brain will guess like too much muscle firing, and then it's tracking the joint funny, and then it feels bad, you know. So we need to kind of retrain the nervous system on the right amount of muscle contraction to get the joint gliding correctly. And then we can load on top of that. I think that's like the really big key about what's different in successful versus unsuccessful therapy for especially a very deconditioned patient.

[37:15] Patricia Stott: Boy, that—

[37:15] Dr. Linda Bluestein: I love that. That's really sounds like such a fabulous strategy. And I feel like I can already sense the emails coming in. How can I find somebody that will take that kind of approach with me, what you just described, Heather? Because I feel like that's different than what a lot of other therapists might try. Do you have suggestions for how someone might be able to find a physical therapist that is more open-minded and/or maybe willing to work with them and read your book?

[37:47] Heather Purdin: There's loads of great therapists out there. And so I would say one that has done a continuing education work, especially in like manual therapies, but also like neuromuscular reeducation type of therapies. So there's lots of different techniques where we're— they're kind of working on how much the muscle's firing and getting it to balance. So it ends up being a manual therapy certification, I think, most of the time. That's kind of the track, but you don't even need to use your hands necessarily, you know, like to teach the muscle to fire correctly, although it's helpful, you know, to give tactile feedback sometimes. But, you know, therapists that will do a combination of manual therapy and exercise is usually really helpful, or therapists have done extra training in neural rehab. And kind of a few different programs are coming to mind, like Ola Grimsby, NIAAMT. There's several other programs out there. The Institute of Functional Art is very good at teaching like functional movement corrections and how to get the neuromuscular connection to work better, little tricks for getting that to connect better, but the therapist that's taken some of those continuing classes. So we look for, you know, people with specialty certifications in manual therapy or in that body part area, like, like, say, hand therapy, for example. If you've— if you're going in for a hand thing, like looking for a certified hand therapist, but especially one that has done a little bit of training in, like, the neuromuscular and manual work.

[39:19] Patricia Stott: Yeah, and in the book itself we have a list of therapists to consider if you can't find an EDS specialist in your area. What are some of the things that, you know, Heather and myself and other therapists that we've talked to have found beneficial? What Heather does is different than what I do. It's different than some of our other top EDS specialists as well, because there's actually a world of wonderful things that you can be trained in as a physical therapist that you can take, absorb, and use as you see fit with your patients with EDS, sometimes in a modified way, sometimes just as it's taught. But there's, there's quite a few things. And Heather, if you can think of filling in the gaps, some things that come to mind— I know, Heather, you do Feldenkrais manual work. There's visceral, there's actually vascular manipulation as well, neural manipulation, osteopathic manual work, Pilates and yoga. Some people are trained in and specialize in hypermobility. Fascial counterstrain has worked really well for my patients. Frequency-specific microcurrent. So there, there are, there's a world out there of things that, um, and I'll tell you, typically these are, uh, the less is more strategy of it's less intensity, but it's more precise with these types of treatments. And they tend to just work a little bit better. And I know that I'm leaving so much off there because I just don't know everything. There's so much out there that's beneficial, but these are not things that are taught in PT school. These are things that if I heard about this in PT school, I would've thought that they were hokey and there's no way that they could work. And in using them, they work wonderfully.

[40:51] Heather Purdin: Yeah, a lot of the techniques are aimed at kind of, I think, balancing the autonomic nervous system in the muscular system of the body. So kind of think of a fight or flight, like, you know, like a tension and kind of getting that, um, settled down out of the body, but then engaging like the stabilizers a little better. So we're working on like inhibited muscles and getting 'em to wake up and like muscles that are kind of overcharged and getting them to like not fire quite as much. So they're kind of getting back to that balance. So, Yeah, Shirley Sahrmann teaches classes on like how to kind of cue that through exercise. But sometimes people need hands-on work first, like all the cueing in the world, like they're just, they can't connect with it. They need some tactile like feedback into their body to be able to sense what's going on.

[41:32] Dr. Linda Bluestein: Where is she located? I feel like that name just came up in a different interview.

[41:38] Heather Purdin: St. Louis? Is she from St. Louis?

[41:40] Dr. Linda Bluestein: That's WashU in St. Louis is was what I was recalling this other person had said. So I was looking at her website because this other— I was talking to a physician friend of mine about integrative medicine for pain, and she was talking about Shirley and her training that she does and talking about movement and how great she is at assessing movement and that her training was really great.

[42:07] Heather Purdin: So yes, it's probably the longest one I've heard about that's been out there. It's really looking at neuromuscular control being like really key.

Dr. Linda Bluestein: Okay.

[42:15] Heather Purdin: So yeah.

[42:14] Dr. Linda Bluestein: Okay, great. All right. And it's— I think this is such a great conversation about there's always more to learn. I mean, no matter where you are. I mean, being in healthcare is definitely a lifelong learning process. If you're going to do it well, you know, you're constantly, constantly learning. So another thing I wanted to talk about in the appendix, is the EDS intake form questionnaire. So, I've seen a few different variations of, you know, a similar type of approach of trying to look at these holistic problems that we know a lot of people with EDS and HSD can experience. But it's really nice you had two different versions, like for the novice, if I remember correctly, you have one for the novice and you have one for the more experienced clinicians. So, can you talk about how you developed how and why you developed those, I guess.

[43:07] Patricia Stott: Sure. Really, we wanted to make this as easy as possible for providers. So in the appendix, there's, you know, not just the intake forms that we've used, but there's the guide to the measurements for upper cervical instability and what it would have to look like to refer somebody out. So we really tried to make it as easy as we could. So if somebody wants to use that, that printout exactly as it's written, we don't mind. Go ahead. If they want to make their own modifications, please do. This is through— a lot of it was on mine because Heather came in and she had a lot of the same things on hers, you know. And we, we kind of took a collaboration of some of our other EDS specialists from across the U.S., and a lot of them are very similar. Having a novice and more of an experienced provider questionnaire, we just wanted to allow a little bit of wiggle room for interpretation for the novice intake that's on there. It's much easier to see if there's a mast cell problem or if there's dysautonomia because it's very much sectioned apart from, from the other questions. But we know that there's a lot of overlap that, that can happen as well. So the, the more expert intake that we have just bunches them all together based on body systems so that as the more experienced clinician can actually start to sort them out. And that takes out a little bit of the patient bias, not to by any means say that they're they're creating symptoms by just checking boxes, but just so that we have a very honest look, uh, in within the expert intake that we have as to what we think. Again, you know, it's sometimes hard to figure out what that primary issue is, and without the bias, it might be a little bit clearer to the clinician reading through the more experienced or expert intake that we have on there to be able to see the full picture of all the systems together and combined, and then weed that out ourselves. So combined effort, um, it's, it was actually quite fascinating to see that without talking to each other. Um, and another one of the people that came in to help with just looking at the intake was Wendy Wagner, who offered the, the upper cervical instability measurements that she had worked on with Dr. Henderson. Um, but we had a lot of the same things. We were all looking at multiple systems to check with our patients so that we really knew thoroughly what they might be dealing with when they came in.

[45:30] Heather Purdin: Yeah, once you've kind of memorized the different symptoms of mast cell or the different symptoms of dysautonomia, it'll become a little easier to use the expert intake form. I think as a clinician, as you're learning it all, it's probably much easier to have all the mast cell symptoms there and then check, check, check, check, check, like, ah, there's several of those, okay, there could be a thing here. So it probably start with the novice and then if it's helpful to your practice, work up to the, the advanced one where you're kind of getting a mishmash of information and then pulling out the diagnoses from that.

[45:58] Patricia Stott: And this is something that the patient could also fill out and bring to their physical therapist as well. Um, and then they could get a good reading seeing how the physical therapist interprets receiving information like that, um, as to how potentially the rest of their treatment is going to go. So, but that, that is a strategy. I mean, certainly it's, it would help if I saw that come in, I'd be so excited because it would just give me a wealth of information. So it's, it's definitely something that the patients can use and fill out as well.

[46:26] Dr. Linda Bluestein: That, that's a really interesting idea because I do feel like if they approach it well, I mean, you know, it's all in, in presentation, right? So if they, but if they approach it well, and if the person gives them a vibe of like, I am not at all interested in that, then, then that's important information for that patient to have.

[46:50] Heather Purdin: Yeah, right. They're like, well, this is all irrelevant to me. You know, tell your doctor about that. Yeah. I'm going to turn the other way maybe.

[46:58] Dr. Linda Bluestein: I mean, if they say it's, you know, it's outside my scope, like I don't know, like I think people should be honest about that. But if they say that and they say, but I'm curious to learn more, like that's at least what I would like to hear is, Gosh, that's— where did you get that from? First of all, I would like to hear them say that. Where did you get that form from? And I'm wondering why that is a questionnaire that someone has come up with. And if they want to look into that more, I feel like that would be at least showing that they want to work with you and that you are concerned— you as the patient now are concerned about having problems in multiple different bodily systems, and that you want the therapist to recognize that this is the case for you and acknowledge that, acknowledge your reality and be able to work with you on those things.

[47:53] Heather Purdin: Right. Yeah, I can't tell you how many times I've had patients with gut symptoms that were making it impossible to do their abdominal exercises, you know. And so that's really important to know, like that, that might be limiting, we might need to either get connected up with someone who knows how to do some visceral mobilization or a doctor that can evaluate the gut further to get some relief. So yeah, all of these systems really, they do play into the PT with this patient population.

[48:15] Dr. Linda Bluestein: Yeah, for sure, for sure. And before we jump into the last couple of questions, I just want to remind people if they're watching this on YouTube and they found it helpful to please hit the thumbs up so that so that we, other people can find this video more easily. Okay. So last couple of questions. First of all, did we miss anything or do you have any final thoughts?

[48:43] Patricia Stott: I just have a final thought in case there are any therapists listening is don't be frightened by this patient population. Again, it's really about listening to the story and having a conversation to figure out what their body is dealing with. And it's the collaboration between the patient and practitioner, even in physical therapy. That will help in the long run. So it might seem overwhelming, but what really helps is experience. So if you do have some of the more mild cases, take them, try them out, be curious, but get information, take some courses, read the book, read other books. There's information out there, but it's really the experience in working with individuals that is going to be helpful. And also giving ourselves some grace within this profession too, and realizing that when we fail with somebody, that's also okay, but have we learned from that mistake? And what have we learned as a therapist to be able to move on. And I'd love to see that more in our profession with physical therapists that are willing to take on these patients. We're not all perfect. I'm like Heather, I see very complicated patient cases and I'm not perfect. It's difficult to work with patients that have a lot going on, but I'd love to see more in this profession step up and start gaining some of that experience and getting this under their belt a little bit.

[50:02] Heather Purdin: I love that, Patty.

[50:03] Dr. Linda Bluestein: Yeah, me too. And as you were saying that, I was thinking, when you were talking about taking on this patient population, probably most physical therapists already are. They're seeing these patients. They are seeing them already. It's just a question of how much of them you're seeing. Are you seeing all of the person or are you seeing parts of the person? It's like my physician colleagues. You're seeing these people in your practice already. So you can, you can put on your blinders and not learn more about these conditions, or you can learn about them and actually be able to help a larger percentage of people. Right.

[50:40] Heather Purdin: It actually makes the job satisfaction for the therapist goes up. Like we actually want to help people. That's why we got into the profession, you know? So like if those hard cases actually turned into success stories more of the time, like slam dunk again. Yes. You know, like that, that, so I feel like it's a worthwhile thing to study for PTs. And like Patty said, like I make mistakes with my patients too. So we have a very open conversation that I'm making my very best guess. I still could be wrong. And I do need your feedback about how you did and we might have to adjust things, you know, so like even with as many years of working with this as I've got, like I still don't land it exactly right every time. You know, and it's a teamwork with the patient, like, to get to the, like, kind of to the right solution with fewer setbacks as much as possible. Yeah.

[51:27] Patricia Stott: And Linda, what you said was, I mean, just perfect. They're already seeing these patients and the statistics for who shows up in a physical therapy clinic are actually, they're astronomical if you think about them. There's actually a study out that I know Leslie uses and quotes a lot when she teaches people about EDS is that it's between 30% and 40% of our patients that show up for physical therapy services, especially with chronic ailment. That those patients are suspected to have symptomatic hypermobility. And if you think about a physical therapist in their practice, that is a huge percentage. And it makes sense when you think about it, is because we do have trouble maintaining our body, we do need help, we're more likely to show up potentially to a physical therapist. So yes, they are seeing them. So, but it's the quality, it's, it's the quality and the impact that, that I'd love to see shift and change a little bit, especially where there are more complex patients.

[52:24] Dr. Linda Bluestein: Okay, and I also wanted to ask where the book is available, and if it's— I know, I know the one that I have is a paperback. I don't know if it's available in any other forms and where it can be purchased.

[52:37] Heather Purdin: Yes, first it's on sale on Amazon. Right now it's only in paperback form. It's a later project for us to get it into an ebook. I think our next main goal is to get book 2 out and then we'll come back and probably start converting things to ebooks. So right now in paperback form on Amazon. In Oregon you can buy it at my clinic, either of my clinics, because Oregon doesn't have sales tax. It was easier to figure that out, so how to coordinate that, and so we're letting Amazon handle all of our sales tax for us at this point in time. So for now, that's where it's for, for sale.

[53:15] Dr. Linda Bluestein: And, and I'm glad you mentioned about the future possibility for an ebook because I feel like that question comes up a lot, and I think a lot of people don't realize how much is involved in having something as an ebook and as a print book, right? They— it just seems like, oh well, isn't it just like a click of a button? But you have to format everything, right? And I'm sure there's a lot of different, um, additional steps that are, that are involved.

[53:34] Patricia Stott: And I will let the listeners know this, this first book is really about the systemic manifestations, although we do talk a little bit about how we determine treatment approaches. There's some surgical recommendations and things like that in there as well, and the role of connective tissue. There's a lot of good information, but I know this question is going to come up. What about my tethered cord? The, the actual diagnosis and more on exercise prescription and, and things more specific to head-to-toe treatment that will be volume 2. That is why we're trying to really get volume 2 out is so that we can go through more specifics on what are we doing for upper cervical instability for the suspicion of MALS, but also for a subluxed shoulder in a certain position. So we are, it's going to be head to toe orthopedic mixed with all of the systemic stuff as well for volume 2.

[54:28] Dr. Linda Bluestein: Okay. And we finish every episode with, um, hypermobility hacks. Hacks. So I would like for each of you to share with me at least one of your favorite hypermobility hacks.

[54:41] Heather Purdin: All right, so the one that I like is a little less obviously hypermobility. Patients will complain that they're nauseous, so we're thinking, oh wow, stomach problems, you know. And so the first thing that I'll have them try is to elevate their legs and see if that changes the nausea at all. Or is it different when they're laying down versus upright? So I have patients that can't even eat because the nausea is so bad. So we'll have them lay down with their legs up for 20 minutes before eating, keep the legs elevated while being upright for eating, and elevate the legs again after eating. And then boom, they're able to eat and the nausea really goes down. It can actually be blood flow to the gut that is related to the dysautonomia. And so the blood is supposed to shunt to the gut to help, and if there's issues with blood pressure control or shunting of the blood to the right place at the right time because of dysautonomia that can cause nausea.

[55:37] Patricia Stott: Um, mine, I'm going to give something a little bit more general, um, and for both patients and providers alike out there that I had mentioned it before, but I just want to reiterate that sometimes less is more with this patient population. And especially for those that are more up in the fight or flight, we tend to want to get things out with more aggression and frustration because that's where our system is. However, it's not necessarily what it needs. So typically, if you approach something with less is more strategy and with more precision, you'll actually get better results. So for both my patients and providers, let's try something a little bit different than maybe what we've been doing and, and take it down a notch in intensity or try a different manual style. But just keep that in mind if something isn't working.

[56:21] Dr. Linda Bluestein: Okay. And where can people find you online?

[56:26] Patricia Stott: So we do have a website for the book. It's tamingthezebra.org, and there are some excerpts from the different chapters that are there. They can certainly find us there. We have a social media account, Taming the Zebra, that we just put out as well that will throw out little tidbits. And we have a little online author Zoom event that's coming up in just a little bit. So we are out there a little bit in social media, but that's where you can find the book information.

[56:54] Heather Purdin: Yeah, our online event is going to be on the 9th of March, 1:30 Pacific time. So we'll be on there answering questions and talking a little bit more about our inspiration for writing, and should be a fun event.

[57:14] Dr. Linda Bluestein: Okay, great. Well, you all have been listening to Bendy Bodies with the Hypermobility MD podcast, and your guests today were Patty Stott and Heather Purdin. Patty and Heather, thank you so much for coming on the podcast today and sharing your knowledge with us, and really appreciate the incredible work that you're doing with this very, very complex population. But that is, like you both said, rewarding to work with because for the most part, I feel like zebras are actually often more resilient because we've had to learn to manage a lot of things, sometimes I run into quote unquote normal people, and I feel like it takes a lot less to upset their equilibrium. And I feel like we're just kind of used to having to keep putting everything back together. So, but really appreciate your work.

[58:05] Heather Purdin: Thanks for having us.

[58:09] Dr. Linda Bluestein: Thank you for listening to this week's episode of the Bendy Bodies with The Hypermobility MD podcast. Visit our new website at bendybodiespodcast.com where you can now view guest profiles and show notes with links to products and journal articles. Leave me a comment, sign up for updates, leave a review or a voicemail, and access the podcast on your favorite player, all directly from our website. You may hear your voicemail in a future episode where we answer your question or dive into your gracious feedback. Follow us on Instagram at bendy_bodies. We love seeing your posts and stories, so be a buddy and engage our community by using the hashtag BendyBuddy. That's hashtag B-E-N-D-Y-B-U-D-D-Y. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, Twitter, or LinkedIn at HypermobilityMD. Visit hypermobilitymd.com for information about medical services and one-on-one coaching. This podcast is for general informational purposes only and does not constitute the practice of medicine or other professional healthcare services, including the giving of medical advice. No doctor-patient relationship is formed. Do not disregard or delay obtaining medical advice for any medical condition you have. Opinions shared are that of the guest and do not necessarily represent the views of the host or any particular organization. Sponsorship of the podcast does not necessarily mean an endorsement. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.