Support and Bracing for Hypermobile Joints with Susan Chalela, MPT, and Guest Cohost, Scott Borjeson

[02:36] 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. Before I introduce your guest today, I would like to introduce my guest co-host for this episode, Scott Borjeson, who has 30 years of international medical device and management experience in both Europe and North America. He has been with Bendy Bodies' founding sponsor Bauerfeind USA for the past 13 years in multiple capacities and is currently an executive vice president. Scott, it's so great to see you and have you co-hosting today.

Scott Borjeson: Thank you for the invitation, Dr. Bluestein. I'm delighted to be here together with you and Susan. At Bauerfeind, we feel your work is so important and valuable in terms of increasing awareness and understanding of hypermobility syndrome disorders and EDS. This benefits patients and family members as well as clinicians. So great to be here.

Dr. Linda Bluestein: Wonderful. And thank you so much for the kind words. I love our partnership. And you all are in for a really big treat. Today's guest is physical therapist Susan Chalela, owner of Chalela Physical Therapy Institute for EDS and CCI/Cervical Instabilities. She is a neurological physical therapist specialist who primarily treats patients with central nervous system compromise due to cervical instability. She is a founding member of the EDS Center of Excellence at the Medical University of South Carolina. She is developing and teaching her successful Finding Functional Foundations approach as a continuing education series through the EDS ECHO program. She is currently a PhD student at MUSC and regularly lectures internationally and nationally. She is co-author of the recent International Collaboration Consensus Recommendations for Conservative Care of Cervical Instability, which we discussed in a previous episode — number 66 with Dr. Leslie Russek. 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. Susan, hello and welcome to Bendy Bodies.

[03:01] Susan Chalela, MPT: Nice to meet you, and thank you for having me on your show.

[03:06] Dr. Linda Bluestein: We are thrilled to have you. Okay, so I'm going to start with some questions. Susan, can you tell us how you got interested in working with patients with joint hypermobility?

[03:16] Susan Chalela, MPT: Of course. So number one, I live with hypermobile EDS. And I think all the way back to my childhood, dislocations and subluxations just randomly happened. I didn't really understand or know what they were at the time. Just kneeling on my knees, playing with Barbies when I was little, and I'd go to get up and my kneecap was subluxated and it would lock out and I couldn't get up. I didn't understand why, but I couldn't move and everybody ran away. And then if I sat there long enough, my muscles would relax and it'd pop back in and I'd get up, run into the house and tell my mom and she's like, you look fine, continue on. So yeah, that happened a few times and, just further injuries with sports and subluxations in my shoulder and hips.
[04:00] And then in college I had— I was rowing crew, and after a race you have to carry your boat. I was in an 8-woman crew boat, and the boat is heavy even with 8 women carrying it. And after the race, I fatigued, and I just insidiously dislocated my shoulder, and it stayed out for over an hour. When it eventually popped back in — because they dropped the stretcher with me on it and it went back in — I was fine and I didn't want to go to the hospital. But while it was out, I mean, it was horrifically debilitating and painful. What is this and why is this happening to me and nobody else? And this is in my undergrad. So my interest continued on. My interest in undergrad really was in sports medicine and trying to understand why this was all happening and why I was different. So I got interested in biomechanics just in general, but in sports and not looking at the everyday life situation, which again, as I understood more as a physical therapist, I realized that bringing everything back to the basics and the biomechanics of just sitting the right way, standing the right way, walking the right way, even sleeping supported the right way is super important to protect our joints in the longevity factor.
[05:37] So that is what I teach now. That's kind of how things came about. Again, I look back to my childhood and all the rare rashes and hives and things that happened to me that nobody could explain, but they didn't want to really call it allergies or treat it. And I just lived with it — eczema, things like that. All these random things. And in PT school, there were two sentences in our differential diagnosis class, and that was it. And so there's my diagnosis. So I ran back to my doctors and my primary care physician said, I know what's wrong with me. It's called this. And of course I got the "what is that?" So I gave up kind of using that. And again, because in this journey of becoming interested in this, the medical world didn't seem to understand it. And so as I was getting help, I was being dismissed — dismissed more so because they didn't know what it was and didn't understand what it was. So my journey proceeded on in realizing that I really had to try and figure this out within my profession and my scope of practice, but also educate medical providers outside of that so that we can share this education. So as they're seeing more patients that present this way or they hear these things subjectively, that they're able to say, oh, I've heard this before, at least.
[07:10] And then I progressed into, kind of after my undergrad, working in a physical therapy clinic in heavy industry and workers' comp and the wellness side of getting an injured worker back to work. And even there, I learned a lot about functional training and how to step back and look at the way somebody lifts and carries and pushes and pulls, the way they sit, the way they stand. So yeah, my interests just progressed all along.
[07:45] After that, I had a stroke about 3 years out of physical therapy school. I was doing heavy industry work. And there I was in rehab for about 2 years — paralyzed on my right side, lost my speech, lost my immediate memory, seizure disorder. Yeah. So even there, I think that's where my neurological interest came in, was in my rehab and recovery. I thought I have to do everything really fast and I'm just going to fix this and I'm going to train it and I'm just going to jump right back in. And when the neurological system is affected, that doesn't happen. It is so slow. There's so much frustration. Depression sets in and it becomes pretty horrific. And even at that point, I laid in bed and as depressed as I was, I had no other options than going up — or either laying in bed and doing nothing because I was going to give up — or working really, really hard every day. And I might not show much progress, but keep working towards the healing of my neurological system, but also educate my neurological system in a way and get my neurons to fire.
[09:10] So when you have a stroke, part of your brain — the area that's affected — dies. It becomes non-viable tissue. And that viable tissue also has a function to it. So it controls a function. And when you lose that, you lose that function initially, but the brain, because it's plastic, and we only use a small part of our brain in our lifetime, that we can just by forcing something and practicing through repetition and really thinking through things — it's called neuroplasticity — we can fire more neurons and we can start to develop that other area of the brain, just by firing those neurons and really thinking through the function that you want to be able to do. And it's still slow going, but you do start to form those other circuits. And it is different. It's not innate. But the neurological system is fascinating, especially from the CNS. So that's where my neurological interest came in.
[10:27] And then living in South Carolina, there's a lot of industry here, but nobody really wanted to do anything preventative. And when I returned back to work, I went back into ergonomics in the DC area. And I loved it. And I always worked in a clinic part-time. And when I got down here, really my option was to go outpatient again. So I was always wanting more. Then I started seeing these patients come into the clinic that had this instability in the cervical region.
[10:56] Now, mind you, this was probably 8 years after our smartphones took off. Being an ergonomist by background, I was very aware of the looking down at cell phones. The cervical curve is supposed to go the other way where it balances the head over your shoulders, over your body. But now that we're looking down all the time, and now that kids younger and younger have cell phones in their hands and they're looking down as they develop, their curve is developing reversed. So think of an older person who has a forward head posture — this is happening now at younger years. And when this kind of came about, this whole phenomenon, I said, this is going to start to cause problems.
[11:46] And so sure enough, ergonomically, I started seeing this forward head posture with our developing children and teens. And then I started seeing these neurological effects in patients that have — if you listen to them, the subjective history and knowing their history and looking at them — this hypermobility status. And then probably around 2014 and 2015, I started seeing more of these patients because one of the neurosurgeons in our area was also at the same time taking an interest in this, unbeknownst to me. And I said to myself, what is this? And that's kind of the beginning of the adventure that I took on to trying to learn about this and better understand this. So that's where I am now.

[12:41] Dr. Linda Bluestein: And I want to touch on what you were just saying about the loss of the cervical lordosis. I've had a lot of people that are being encouraged to do curve correction training. Have you seen people do that? And I'm just curious, a little side tangent before we get onto the next thing, what your thoughts are about curve correction training.

[13:23] Susan Chalela, MPT: So the curve correction training that I am aware of is mostly chiropractic, osteopathic, and it's more the rolls that they put under their neck or the curve enhancement devices that are supposed to increase their curves. The problem is when you're dealing with a connective tissue disorder and/or an instability, and you're increasing the curve or you're forcing the curve, you're stretching out other ligaments. You're not getting the ligaments that are damaged to in any way tighten up when you're doing that. So it also causes almost a traction when you're enforcing the curve — it's almost a traction to lengthen the neck, which a lot of my patients, based on their history, and what I'm seeing clinically, it fires their neurological symptoms more.
[14:29] So I'm hearing that from their symptoms that they're complaining of, but I'm also thinking through this saying all I see is more stretch of more ligaments and traction and stretching and compressing more of the neurological system. So I didn't see how that was going to help. And so I left it to the patients that would go through these and try these other approaches — they've already tried it and they've come to me. And so I would be hearing the same thing time and time again: it didn't help, it actually made their symptoms worse.
So in my approach, I learned not to force anything with these patients. It's about being able to find position proprioceptively and being in your personal neutral and understanding what that feels like, because your body is a balanced system. The muscle system is a balanced system — it's a push-pull system. So if you're pushing one way, you're moving that way. If you're pulling the other way, you're going the opposite way. So there's got to be that middle. There's got to be that balance. And so when you have that balance, that's your neutral. That's where in your spine, at the level of your spine, your discs should all be of equal disc pressure. Your ligaments should all be soft, but not on stretch and not compressed. Your passive structures are all protected when you're in that so-called neutral.
[16:06] It's not the natural posture of just standing there, because when you're hypermobile, we all hang on ligaments. But it's about engaging muscles and finding proprioceptively from the ground up that balance of your musculature, understanding it starting from the ground up. And the best way to kind of start is lying down on your back where you get more proprioceptive feedback in finding that neutral.

[16:28] Dr. Linda Bluestein: And that's a perfect lead-in to my next question. Whether we're dealing with cervical instability or instability somewhere else in the body, when you're working with people, I was going to ask you what you find most effective. And you started with this concept of the ground up. I know you've developed this approach that we talked about in the bio. So we'll get into that in a second. But what might be not super beneficial — what people might be exposed to in a more regular routine type of physical therapy practice?

[17:02] Susan Chalela, MPT: Yes. So what we're kind of hearing from our patients, and we always hear the same thing, is traditional physical therapy. When we graduate physical therapy school, we have a box of interventions for different diagnostic issues. And we never really learned about hypermobility when I was in school. So again, we just took our box of cervical tricks, whether it be soft tissue work, head laser training, dry needling, cupping, things like that, strengthening, isometric strengthening, deep neck flexors. So everybody thinks with deep neck flexors, hey, put the patient on their back and have them do chin tucks, and that will give them a nice isometric contraction. The problem is when you're doing a chin tuck, you're actually working out of neutral. You're taking neutral out and you're straightening the spine. So if there's an instability going on, you're going to compress and stretch and aggravate those levels where the instability is, and you're going to aggravate the nervous system.
[18:18] So traditionally, the chin tucks — chin tuck is an OA shearing force. So somebody with an instability is going to be irritated by that. Somebody with mild hypermobility who is not symptomatic may get away with it just fine. And the normal population gets away with it without being symptomatic. But if there's an underlying instability there, you're going to hear about it. If not right at that moment, you're going to hear about it later when they come in next. So yes, that's a problem.
[18:52] Traction. Even manual traction, mobilizations. As PTs, we're so trained to put our hands on people. I went to a manual therapy school. So getting in there and really feeling around what feels different and what feels out of place. The problem when there's an instability is you're mobilizing that instability again, and that can irritate the neurovascular system. So again, it's about doing no harm to these patients. So I recommend if you hear or suspect that there's an instability — especially if you're not used to treating it — to lay hands off of that area. You can work above and below it where it's more stable, like the upper traps, which are always up in the ears with an unstable patient, to get those upper traps to stand down. Because when you're getting those upper traps to stand down, you're taking up the slack of the soft tissue to better balance the pumpkin on the stick. But if the ears — cold, tired, and stressed — are here, where's the head going? Forward. And everything's compressed. So this is where it fires my instability, and my hands go numb and tingly if I'm too cold for too long or too stressed. But it is about where you are in space and being in alignment.
[20:22] Isometric exercises — you can put your hand on your head and you can push all day long, but if you're not in neutral alignment or proper balance, and you have an instability, it's dysfunctional alignment that drives dysfunctional movement. So all you're doing is aggravating more if you don't understand what your alignment should be. In physical therapy, we do all these neck exercises. They even have patients — I've heard — lay on their back over a treatment table with their head off and hold their head up. So they're actually promoting that forward head posture even more, and they're firing even more the anterior area, the front area of the neck, just to make the front of the neck stronger. Well, it's always short and always looking down, always looking forward at computers. So you want to strengthen and encourage the posterior chain to do its balanced job to the anterior chain. That's where we should be working in physical therapy as opposed to kind of pulling out the old bag of tricks that we were taught. But this is kind of a new phenomenon that needs to be very carefully taught.

[21:39] Dr. Linda Bluestein: So how do we do that then?

[21:44] Susan Chalela, MPT: It's not easy. The history is Dr. Patel used to see all these patients that would come from all over. And they'd come in town and say, go see Susan. And we'd squeeze them into the schedule. And they would say, Dr. Patel told me you would give me neck exercises before I leave. Well, these patients, if they don't understand what alignment is, you're only giving them exercises that will in turn cause more damage. So it's a process. You have to start at everyday normal functioning — the basic of functioning. You sleep, you sit. Most people stand and walk. Not everybody — not all of my patients. Some of them are bedbound. So even if they're getting up during the day to go to the bathroom and going back to bed, there's still standing and walking involved. So if they're doing that, we have to make sure that they understand how to do it correctly so that they're protecting their nervous system. Because again, you've got a 12-pound pumpkin on a toothpick, and if there's an instability up there, that pumpkin is just kind of all over the place. So you've got to get stability from the ground up.
[22:50] So that's where you work. You work on alignment, you work on these basic functional things that are so important because if you can't get those, everything else is going to be dysfunctional past that. And remember, it's all about quality of life. So I can have a very severe patient whose neurosurgeon will say this is a severe case and you need to be fused sooner than later. Yes, I get it. But then I have patients like that who are working. And then I have patients that say, yeah, he says I just have mild instability and I just need to do PT. But what happens there is they're in a severe irritable state where they're laying in bed and doing nothing. And then when they go to PT, they're getting all the wrong things. So it's keeping them irritated and they're not getting out of that very irritable state.
[23:51] So it is about doing the right thing. And it's not a quick fix. It is a lifestyle, lifetime change that you're learning from the ground up — learning alignment, then learning proper movement, proper dynamic function. It's a process, and it took me a very long time to figure this out using my industrial background and my neurological background and listening to my patients and feeling proprioceptively whether I'm using the right cues. PTs can be taught this, and Dr. Russek — I cannot thank her enough. She is the herder of all information, and she puts it into an amazing workable format so that I am able to teach this to my colleagues. So that's my goal — to get my profession to open their minds to understanding this, learn about it, and understand what they can do for these patients.
[24:58] Because when you look, as a PT, at your bag of tricks and everything that you do to that patient is irritating them, as a PT, you feel like you're failing them or they're not trying hard enough. So it's going to go one way or the other — it's going to be either dismissive, gaslighting, or you just don't know what else to do and you throw your arms up and you're like, I don't know what to do for you, but everything I do is making you worse, so I can't see you anymore. And I want to change that. Because over the last 7-plus years, what Beth and I are teaching our patients gives them tools for a lifetime to help protect them. It's about managing. We can't fix, but we can manage these irritability states and manage the amount of damage and progression that's happening with hypermobility, and worse, with instability or unstable joints. So it's complicated, but it can be done.

[25:58] Dr. Linda Bluestein: Sure. And is that what you were describing just now — your Finding Functional Foundations approach? Can you elaborate on that, how that works? And especially, I think a lot of patients are going to hear this and they're going to think, well, I've had this happen. I've been to physical therapy and it did make things worse. So what can I do? Because maybe I don't know of another physical therapist to try, and I want to maybe try to access this information for myself.

[26:29] Susan Chalela, MPT: Yes. So through the EDS Society — we just finished the first third of our course. It's a 13-week-long course, but it's actually 9 two-hour sessions. And we go 3 weeks on, 2 weeks off. And the 2 weeks off is so that the clinicians can use these skills that we are teaching them in the clinic and to see how they work. So all along, they'll do their 2-hour session, they're supposed to be applying that to their patients. And this isn't only specifically for hypermobile patients or EDS patients. All of these tools are functional tools, so they help every patient. You can have an Olympic athlete and you can improve their performance and their biomechanics through this — it's called a neuroplasticity proprioceptive biofeedback methodology. So we actually use biofeedback through proprioception to improve neuroplasticity of the brain. Think of it as thinking and doing, thinking and doing. And the more that you think and you do — so you think about the right way to do something because we've taught it to you, we've given you a methodological approach, for instance, how to sit right or how to stand right — your patient is going to go through that. Now, every time when they leave the clinic, they catch themselves out of alignment, they put themselves back in alignment because these old habits are not healthy habits. And so what we're doing is creating new healthy habits so that every time they kind of catch themselves, they are correcting.
[28:18] So you tell patients too, it's about cross-training. You don't have to sit in that perfect gold-standard alignment that we teach you all the time. You can sit here and lean with your head here, but I'm not in any extreme stretch or movement. I'm just kind of mid-range relaxing a little bit. So I stay here a few minutes and then I go back and I correct into healthy alignment. And I hold that for a period of time. But my brain should be, over time, more sensitive to the fact that the longer I spend in these poor habits, the more risk I'm taking to do insidious damage to my passive structures — ligaments, joints, discs, nervous system. So it's about spending more time in the more healthy habits, but then not staying there too long either, because the two things that break down people with hypermobility or instabilities are prolonged postures and repetitive movement. They're going to cause issues every time. So don't do them. Don't go into prolonged postures.
[29:25] So if you have to sit through a 2-hour class, you can shift weight, come back to center. Shift the other way, go back to center. Okay, I'm tired of sitting — stand up. Make sure you have the accommodations — if you're in school or work, have accommodations for a sit-to-stand desk or to be able to stand up in class. You can march in place. There are lots of things that you can do to move in and out of things. So going from sitting the right way, standing the right way, marching in place or shifting weight the right way. And then there's room for error there that is not terrible. But again, it's about getting through that day without using all of your spoons or burning down the house because what you had to do today was sit in a class for 8 hours. So it's about being smart about changing things up and using the basic functions that you have in the situation that you're in at that point in time.
[30:28] So we teach that. We teach our patients to be very sensitive, to not push through. These patients are also used to pushing through their fatigue and pushing through pain and pushing themselves into these poor postures because guess what? Fetal position feels so good for everybody and especially for us. But fetal position for us is so much more than for a normal person. So yes, it does jeopardize and stretch our nervous system even more. So then we find ourselves maybe in a tethered cord situation or a heightened nervous system symptom that just sits there for a while because we laid in that fetal position for the whole day because we weren't feeling good. But again, it's just knowing what to do. Same thing with being on a computer — the ergonomics of sitting in a car, being in your computer situation, whether you're a student with a laptop all the way to somebody who works 10 to 12 hours a day at a desk. What do we do here? How do we survive? How do we get through that? Because we have to do it or we can't work. So it's about accommodating so that we can sustain in a healthy manner through function.

[31:49] Dr. Linda Bluestein: It makes sense that people should be working on alignment and moving. I've heard some physical therapists say to me — because I also have hypermobile EDS, which is also how I got into what I'm doing now, it's a common theme that we hear a lot — that it's important to move better before we move more and to really be thinking about the correct posture whether you're sleeping, sitting, walking, whatever. So I have found for me personally and for my patients that oftentimes using bracing as a way to help support joints and get that better alignment can be really, really helpful. And so I definitely want to make sure that we talk about that as well. Is that something that you have observed with your patients?

[32:39] Susan Chalela, MPT: Yes. So bracing and supports is very, very important. I was talking more about the exercise and the alignment side and all of that, but we have a whole section where we look at bracing and supports, and we're also looking at that along the way as patients move through their plan of care here. So as you're teaching the patient proper alignment — let's say proper walking, okay — and the patient is telling you that their foot doesn't feel right even when they correct their alignment. So what's their other option? Compensating, right? And a compensation, if you think of it as a therapist, is a bad habit. You're creating another bad habit to replace the bad habit that you have. So our goal is — especially with hypermobility, which is moving parts — the dysfunction can move from one area to the other. So when you hear that the patient is struggling in proper alignment, you have to figure out why.
[33:43] Well, what the problem typically is with somebody that's hypermobile is the fact that we're not controlling the motion. The feet and ankle have a lot of moving parts — there's a lot of ligaments in play, a lot of joints in play. And then we have an arch that collapses every time we weight-bear. And so we tend to be guilty of that collapsing arch phenomenon. So when you watch people walk — and I'm being a therapist, it's terrible, my eye just goes right to it — I'm watching people's ankles on every step of weight-bearing, their arch collapsing in, and that medial malleolus, the medial ankle bone, slides and glides in every time they walk. And you can see in their shoe, if they don't have a good, rigid, stable shoe, you're just watching the shoe collapse in with that. So that is uncontrolled motion. They may heel strike okay and then dysfunction, or they may not heel strike okay and go right into a dysfunction. And that's not okay because that dysfunction again starts at the ground and makes you dysfunctional all the way up to the head.
[34:51] So we want to try and control that amount of movement from the foundation. So if they're in the right shoe wear for the right level of activity with the right type of support in the shoe, then look and see how they do. If they come in in flip-flops one day, just make sure the next time they come in in their sneakers that they would wear if they were on their feet all day. Evaluate, teach them what they need. But again, when they're in that shoe and you're teaching them the proper biomechanics of walking, if you're still hearing that there's an issue — "Well, I can't do that. This hurts too bad." — you're going to say, okay, we need to look at this to evaluate to see what more is going on. So sometimes, and we have a lot of our supports and bracing here that we can try with our patients, we will go ahead and support. You could even use kinesio tape. You can try and support and give a little bit more control to those bones biomechanically and see if that decreases their symptoms.
[35:55] So we'll pull out the less-is-more approach. We'll try a support first, see what they look like from behind. Are they still collapsing? Are we getting more control? Maybe they just need better shoe wear. If they're in good shoe wear now, we can try supports — maybe a sport ankle support where it's a figure 8, almost like sport taping, and you're now giving a little more support to that foot and ankle. How are they doing there? Oh, that feels good. Oh no, it still doesn't feel right. That's uncomfortable. So then we can try a more rigid brace. Is that controlling the motion? What do they look like in that brace with their shoe wear? And kind of go from there. But the goal is to control the motion. And if you get the motion control and you get that patient to be able to perform dynamic movement correctly, that's a win.
[36:56] If not, and the patient's still struggling, and they're in this rigid brace, and rigid braces are not as comfortable — they just aren't because they're more rigid — then you may have to consult out for a foot and ankle specialist who understands hypermobility and EDS. And just do a consult and see what things look like radiographically, or being evaluated by that specialist. But yeah, I always try my supports and bracing first because of the amount of movement that's going on.
[37:33] And then the pelvis, especially in sitting, is another primary foundation. So it does matter where the pelvis is because the pelvis sets the tone and the alignment for neutral posture. So here's your feet and ankles — there are a lot of moving parts, a lot of bones, a lot of ligaments. You see that arch. So every time they step down, because of the hypermobility, the arch is collapsing, and you're getting a lot of movement going on in those bones, more so with some people than others. So you want to be able to control that movement with your shoe wear, your supports, your bracing.
[38:10] Okay, so the pelvis is also another place that is a foundation — it's the foundation for sitting. So you can see here that the pelvis has two halves. You have a sacroiliac joint here. Here's your sacrum, and you have two parts of your pelvis that are joined together here at the pubic symphysis. And they're connected to your hip bones and your lumbar spine. Hypermobile people tend to have a lot of low back pain at times, and a lot of it is the pelvis shifting up and down. These are movable joints. There's less movement here, although with a hypermobile person or an EDS person, you may get a little more movement here, which is not fun. A little more movement in the tailbone as well.
[39:04] So what works really well here on the support side is the SacroLoc that Bauerfeind has — and I call it the Cadillac of all SI joint belts. It's really nice because it goes around the two pelvic halves and it approximates the two pelvic halves into the sacrum. So it actually controls the amount of movement that's going on in these two joints and gives you more support in general, more control so that you can do a little bit more. You can sit a little longer, stand a little longer, walk. You can even sleep in it if you're a side sleeper. A lot of times our pelvis shifts. And as a woman during hormones — our monthly cycle, when we get that swing of relaxation in the ligaments — when we're side sleeping, that's where we wake up in a lot of pain or we go to lay down in a lot of pain. Wearing your SacroLoc because it is a support, not a rigid brace — supports are not going to weaken your muscles. They're only going to support your joints and support your muscles. So it's a good time to wear the SacroLoc during that time.
[40:16] So again, that's a nice support for the foundation of the spine and pelvis and supports everything going up the chain. And then of course, there's more rigid bracing for the spine. If the patient's really having a hard time with fatigue, back discomfort, TL junction issues, and they have to be up because of their job or because of school, using one of the more rigid products like the LumboLoc, yes. You can even go to something more rigid, but that might be enough to get that patient through what they need to do for their daily function.
[41:02] So then as you move up to the shoulders and the neck and the head, there are shoulder supports. Mostly we just find shoulder supports that help approximate the ball into the socket a little more. So I do use the OmoTrain. I also use something that they don't make anymore, and it's called a posture stabilizer. There are posture shirts through Alimed that we will recommend for our patients, again because they're supports, not rigid braces. They're not going to weaken the muscles. They're just going to facilitate the positional sense of proper alignment. So they're really nice to have, but compression can get annoying. So it's not about being in it all day long and pushing through because that will cause a discomfort. It's about taking it off and putting it on when needed and using it during the times that you absolutely need it.
[41:57] And then when we get to the neck, we have soft collars and then we have hard collars. The soft collar would be used more just to — it's soft, it's not going to hold the head up. You can still move in it. It's there to just remind you and to limit your range of motion. So that range of motion, if it's more irritable in general for you as a patient, just by wearing a soft collar — which is more comfortable — that soft collar will remind you not to move through that full range of motion during the day when you're doing things functionally. You can sleep in it too if that's comfortable, and it's reminding you not to end up in these really poor postures when you're sleeping.
[42:49] The hard collars now are a rigid brace. It's an exoskeleton. You can't really move in it much at all. It's there to protect. It's there to let your muscles rest and recover. So I like to use rigid bracing for my cervical instability patients so that when they have the symptom of feeling like a bobblehead, or any type of symptoms that come on — neck, head, neurological — pop that rigid brace on. Make sure that that brace fits you, make sure it's the right one for you, because everybody has different length necks and thicknesses and things like that. And I'll talk about that in a minute. But I use it in the sense of having my patients wear it for about 10 to 15 minutes when the symptoms of fatigue come on or mild symptoms — pop it on right then. Don't wait until the symptoms get worse and worse. Let those muscles rest and recover. Your muscles are your backup stability for your ligaments, and your ligaments are faulty — they're not doing their job, so your muscles need to be able to do their job. And when muscles fatigue, they turn off, and then you're hanging on ligaments again, and you start to become a mess symptomatically.
[44:05] So if you wait that long, you're going to be in a lot of pain. But if you start to pick up on the sense of fatigue, then pop that collar on, let your muscles rest and recover for about 10 to 15 minutes. And when you pop it off, you're able to function again and go again. Now, as the day goes on, depending on the requirement of what you have going on that day and how irritable you are, you might have to wear it a little longer. But remember that if you put it on and wear it all day long because you're just having a bad day, realize that your muscles are checked out. They're not having to engage, and when they're not engaging, they become weaker over time. So we've got to be careful with that.
[44:46] Sometimes cervical collars are used by certain doctors diagnostically, and they like to say, okay, put the hard cervical collar on, wear it for 2 weeks, let's see if we can bring down your symptoms and your irritability status. And that might be, for that physician, a good indicator that you need to be fused. But that's not always the case, because not everybody tolerates a hard cervical collar. A lot of people are very sensitive to them. A lot of people will find it makes their symptoms worse. So you've got to take it on a case-by-case basis there.
[45:25] In a car, traveling, car and plane — both of those, the benefits outweigh the risks. When you're a passenger in a car or you're riding in a plane, that humming effect kind of relaxes your muscles. So our head kind of falls into this slipping and sliding where the different levels of the vertebrae kind of slip and slide because we're relaxed. So having that collar on is protective. It's also probably a little protective if somebody hits you. So there are reasons to wear that collar a little longer than not.
[46:07] Okay, the different collars that I typically find work best for my patients — there is a new one coming out, so we're playing with that one right now. It's really nice, it's lightweight, it has a lot of adjustments on it. So we'll get back to that. I'll let Scott talk more about that. Right now I'm using the Eclipse collar. There's an extended for taller people, larger people, and then there's a regular Eclipse. The chin section on that is a little rigid, so patients that have TMJ or jaw pain tend to not really like that collar because it's so rigid. But sometimes if they double pad them, they can get away with it. But it's nice because the chin section goes down and up. So if you have to look downstairs or look down, you can just let the chin down and look during that period of time.
[47:10] The Aspen Vista and the Miami J are all Velcroed. So you're Velcroing them on. They're inconsistent with every time you put them on and how they fit. And you kind of have to play with it a little bit to get a good fit. Best to lay down and put the collars on if you're in a place where you can. If you can't, then sit against a wall or something straight and put the collar on from the back first and then the front.
[47:35] If you have a long neck, short neck, skinny neck, wide neck — our Down syndrome patients with cervical instability who also have a connective tissue disorder tend to do better with the Miami J short, small, because that's what's going to fit them. Then we have the long, thin, petite people — the Miami J also makes another size for that. The Aspen Vista does a thoracic extension. They have one that not only braces the neck but also braces the thoracic spine as well. So yeah, depending on the need, there are different braces out there, and those are the typical ones that we use for now.

[48:20] Scott Borjeson: Susan, thank you for sharing your experience. That's a wealth of experience. I'm curious as to what your recommendations would be for a clinician who is considering starting to dispense DME and bracing out of their practice. I know it's been a journey for you. Would you mind sharing some of the considerations and maybe give a few recommendations in that respect?

[48:51] Susan Chalela, MPT: As far as carrying the products here in our office and trying them and figuring out what the patient needs?

[48:59] Scott Borjeson: Yes, exactly.

[49:01] Susan Chalela, MPT: And one of the big wins for us that I haven't talked about yet is the CoxaTrain. So it's the SacroLoc plus rigid hip hinges — the metal hinges — and then thigh pads. So it's added stability to the hip joint as well as the pelvis. That's one of my big ones. And that's an insurance-grade brace.
[49:23] So when we talk about the braces here, the supports insurance will never pay for — it's always cash. Patients have to pay cash for supports. So your SacroLocs, your sport ankle supports, your sport wrist supports. I keep all of that in stock because if my patient comes in and they're fired up, I have something to put on them that day to kind of calm things down. It's not a rigid brace, but it's just to calm them to get them out of the flare. So I keep those here.
[49:58] The more rigid braces — we are not a DME, but I do have my rep who does all of our prefab stuff. So I will measure a patient for a brace that then can be processed through him — actually, he goes through a pharmacy as a DME to process the insurance. So really we do the measuring, and then when we get the brace in, we put the patient in the brace, we have them do the function in that brace. We want to make sure that it fits correctly. It doesn't always. Sometimes we have to switch out components on certain braces, and we'll try different things until we get the fit that we need. Also, the rigid braces — some of those can be adjusted through heat to make them a little more comfortable. But yeah, so we process that order through him, and then the brace arrives here for my practice in-house. And then, like I said, we put the brace on, we go through the function, we really educate them on how to put the brace on and off correctly, when to wear it, when not to wear it. Because if you don't educate them in that, they think that they have to live in the brace sometimes, and then that will make them worse over time and more sensitive and irritable.
[51:30] So you really have to look at the function of each patient and what their requirements are — job, school, is it a busy mom with little kids? That's super, super important for you to help guide when to wear these braces. More rigid braces are more protective. So if you have a busy mom and they're going to the zoo for the day — tools in the toolbox. So have your tools in the toolbox. That patient may have, let's talk about the SacroLoc — just the support around the pelvis — versus the CoxaTrain that has the added hinges and thigh pads to give more support to the hips. So if they're going to the zoo, don't throw it in the baby carriage — put it on, start out with it. It's protective. You can take it off if it's a long day and you're sitting and you're eating or you're resting. But if you're up and walking a lot, put it on. And then if the next day you're home and you're not doing much, but you're walking around the house, you don't need that rigid bracing with the hinges and things like that — put your SacroLoc back on. Just use your supports on those days that the functional demands are less.
[52:48] So yeah, that works really, really well for us as far as having Steve and going through insurance for patients. We measure, we make sure that everything is what the patient needs, we make sure that it fits, we make sure the adjustments are there, and we're constantly seeing them. These patients are not in and out of the door in 4 weeks. So as time goes, we are sometimes having to make some adjustments or looking for either more support or less support depending on the change in their functional demands.
[53:24] So yeah, we use a lot of Bauerfeind. We like the product. It's comfortable. We can make adjustments to it. It's custom in some ways without being fully custom. Sometimes we do have to go custom. So we do have a brace team that our orthotists process here. But yeah, it's been really good. Like I said, the support side we do keep in-house, and that way we can put out fires before they get really bad.

[53:59] Scott Borjeson: Great. Thank you for sharing. Go ahead, Dr. Bluestein.

[54:02] Dr. Linda Bluestein: I was going to ask — are there certain things that if somebody wants to get started and they're thinking, wow, this sounds like a great idea to carry some of these things in the office — one of the things that's really amazing is the sizing that Bauerfeind has, they have so many different sizes, which is great. But from the standpoint of carrying things in stock, if you're going to carry sizes 1 through 6 for the wrist or for the knee, there are different levels too for each part of the body. They have so many different products. Are there certain ones that you feel like these are the ones I most commonly use and these are the sizes I'm most commonly using? So if someone wanted to pick a handful of the most common things that you use, do you have suggestions for that?

[54:51] Susan Chalela, MPT: Absolutely. So let's say the SacroLoc — there are 7 sizes, and that's what's so great about this product because we do have really tiny people and we do have really big people. So we cover the full gamut here. We are an EDS clinic, so that's what we see, and we keep all 7 sizes in stock. But earlier on, kind of before that happened, and I didn't have a lot of money, I just kept the mid-range. I tend to sell mostly 3s and then 2s and 4s. So I kept the mid-range sizes — more 3s, a few 2s, a few 4s, and maybe a 5. Because if I have a patient who's a 7 and I don't keep one in stock, and I may only sell it once every 2 years, you can order it and have it shipped directly to the patient. You put that order in through your rep and it is just shipped directly to them. They pay on that day you order it for them.
[55:53] And patients don't sometimes want to spend that much money on a SacroLoc because it's a couple hundred dollars. So they'll buy something else on the internet. But it's funny how they all come back to me — most of them, not all, but most of them come back and say, oh my gosh, this isn't as supportive as what I felt in your practice. Because I'll let them try it here. If they need it and they're going through their biofeedback exercises and their pelvis is shifting and they're flared up that day, we'll put the SacroLoc on them even if they don't have one. And it's a good way of getting the patient to realize that it's better with it and it's worth the investment because it's protective in another way, just being supportive, and they're able to be successful with their exercises because they're controlling the amount of movement.
[56:43] So yeah, just keeping some of those sizes in stock. As far as the ankle and the wrist supports, they come in extra small, small, medium — actually the wrists are just extra small, small, and medium/large. So there are only 2 sizes, and it does cover almost everybody.

[57:00] Dr. Linda Bluestein: Oh, really?

[57:01] Susan Chalela, MPT: Yes, you just keep—

[57:02] Dr. Linda Bluestein: I thought the wrist — I thought there was at least one wrist brace that came like 1 through 6, but obviously Scott's the expert on that.

[57:11] Susan Chalela, MPT: Yeah, there are. So they're your—

[57:13] Dr. Linda Bluestein: Oh, you're talking about a different—

[57:14] Susan Chalela, MPT: Yeah, yeah, your RhizoLoc, your ManuLocs. So those are your insurance-grade braces, and there's a little more variability there. But as far as your supports, just putting out little fires in the clinic — yeah, there are only two sizes in that anyway. And then the ankles — the sport ones are extra small, small, medium, large. And so we don't sell a whole lot on the larger side, but every once in a while we can custom order and they can have it in two days. But we try to keep some extra smalls — mainly smalls is what we use and a few mediums. We could just keep those few sizes in the clinic. And that way, if they come in with a sprained ankle or a really irritated ankle, that might provide them enough support to get through the next few days as they're decreasing their inflammation and getting out of the acute stage. So yeah, it's fun. And it's so rewarding because they'll tell you, wow, that feels so good. I feel good again.

[58:18] Scott Borjeson: And I think that's a great point, Susan, that you're making — that you actually have product in the clinic. Obviously, there is a convenience benefit for the patient to be able to access product there and then. But the other thing is they can just try it, because I do think it's very important for patients to try the brace or braces — multiple products — before making a final decision and moving forward. I think that's a great point.

[58:50] Susan Chalela, MPT: Yeah, we do have samples — I'm sorry, Scott. We do have some samples of the rigid bracing that's insurance-grade here in our office. And that way we can actually try it, even if it's just that middle size. We can at least get a feeling as to whether we need to go to the bigger size or smaller size. But just having the patients see it and maybe try it — if it's too small, you hold onto it and kind of finagle it so that it almost fits them, just to show them what stability it kind of gives them. And if it fits you, it's even going to fit better. And then they're like, yeah. And like I said, it is all about protecting their function and making them successful.

[59:33] Dr. Linda Bluestein: Susan, before I ask if you have any final thoughts, I just want to ask the audience members who are watching this on YouTube, if you would please hit the like button if you're finding this video helpful so that other people can find it more easily. And Susan, I just want to know what final thoughts you have that you wanted to add.

[59:50] Susan Chalela, MPT: My final thoughts are, for my profession, for physical therapists — there are tools out there. There is education out there. My colleagues, Patty Scott and Heather Purdon, they have MedBridge courses, shorter courses that you can take, which are phenomenal. So there's that education that's out there. There's also my Finding Functional Foundations course through the EDS Society ECHO program. We also have the Allied Health ECHO program. There are a number of modules throughout the year that you can join in on. Just get in early enough when you get on the EDS Society because that does close out to a certain number of participants.
[1:00:40] The Finding Functional Foundations program — this is the first one. We started it in January. Registration for the next one, I'm not sure when it will be out, but it will be a fall class. More details to come on that, but it is more on the neuroplasticity proprioceptive biofeedback approach that works well for me and my patients here. So that will also be out.
[1:01:07] And then there is — Dr. Russek has her hypermobility education program online, and that's a great way to start. It's basic 101, geared towards PTs and patients. My program is just geared towards PTs so that you can help patients. But there is stuff out there and it's coming out. And like I said, I highly recommend the ECHO program. And Patty Scott has a new book that just came out. So look for that on Amazon. And yes — Painting the Zebra. You got it right there.

[1:01:52] Dr. Linda Bluestein: I interviewed her and Heather yesterday.

[1:01:55] Susan Chalela, MPT: Okay, mine's right out here. It's a phenomenal book. And the book Disjointed — Nancy Block wrote a few chapters with physical therapy content, and that's a whole — each chapter is geared towards a different topic and a different specialist in their field has written each one of those chapters. All of that is very, very helpful, but realize that these patients are different. They need to be treated differently, not like your same orthopedic patients. Many of these patients are orthopedic, absolutely, but you're going to hear that they're neurologically implicated too, and that's where you have to be careful, and that's where joint alignment is even more important.
[1:02:37] So you can reach out to my website as well. I do need to update it — it hasn't been updated in about a year. But I will have more education information also on chalela-pti.com. So there you go.

[1:02:55] Dr. Linda Bluestein: Okay, great. And we always end with hypermobility hacks. So can you share with us a hypermobility hack?

[1:03:05] Susan Chalela, MPT: Okay, so I have a whole wall called — and my patients named it — Susan's Songs. And I could walk out there and show it to you. So my hack is: a functional foundation promotes functional alignment, which in turn promotes functional movement. Dysfunctional foundation promotes dysfunctional alignment, which promotes dysfunctional movement. So there's my hack.

[1:03:36] Dr. Linda Bluestein: Okay. I might have to type that out too because I like that. Crediting you, of course. All right. Well, you have been listening to Bendy Bodies with the Hypermobility MD, and today your guest was Susan Chalela, and your guest co-host was Scott Borjeson. Susan and Scott, thank you so much for coming on the Bendy Bodies Podcast and sharing your knowledge with us.

[1:04:03] Scott Borjeson: Absolutely. Thank you so much. It was a pleasure.

[1:04:07] Susan Chalela, MPT: Thanks for having us.

[1:04:08] Dr. Linda Bluestein: Yes, absolutely. And we'll see you next time. Thank you for listening to this week's episode of 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_buddies. We love seeing your posts and stories, so be a buddy and engage our community by using the hashtag bendy buddy — 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.