28. Caring for the Adolescent Artist

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00:00:00 

Jen Milner 

Hello, and welcome to bendy bodies with the hypermobility MD, where we explore the intersection of health  and hypermobility for dancers and other artistic athletes. This is Jennifer Milner here with co-host Dr. Linda  Bluestein. Before we introduce today's guests, we'd like to first remind you how you can help us help you first  subscribe to the bendy bodies podcast and leave us a review. This is helpful for raising awareness about  hypermobility and associated disorders. Second, share the bendy bodies podcast with your friends, your family,  and your providers. We really appreciate you helping us grow our audience in order to make a meaningful  difference. This podcast is for you. This podcast, we're going to do things differently. This podcast marks the  one year birthday of bendy bodies, happy birthday. We want to take this opportunity to introduce you to the  bendy bodies team and hear from them. Bendy bodies is growing in exciting ways, and we want you to follow  us on Instagram and Facebook so that you don't miss out on anything.  

00:01:21 

Jen Milner 

We are obviously growing with team members and we are going to chat with them today. The topic is caring for  the adolescent artists, and we've got some experts in this field with us. First off, we have the founder and co-host  of the podcast, Dr. Linda Bluestein always happy to be at the microphone with you and with you as well.  Welcome, welcome back. We're also chatting with Aiden Leslie, a former pre-professional ballet dancer, a crazy  bendy body and EDS wellness ambassador for bendy bodies. Aiden, lovely to have you here. Hi, thanks for  having me. Absolutely. And then rounding out. This is another bendy body team member nutritionist, Kristin Koskinen, we've been fortunate enough to have her share her expertise more than once on this podcast, Kristin,  it is always awesome to have you here. It's awesome to be here. Today's topic is one that is big in the arts and  athletic world.  

00:02:21 

Jen Milner 

It seems like dance, circus, arts skating, gymnastics. What have you is becoming more and more competitive at  an ever earlier age. We are demanding tricks and schedules from 12 year olds that weren't even requesting of  professionals in the past. So on its own, that bears discussion. When you add in training somebody on the  hypermobility spectrum, the potential pitfalls just increase exponentially. Let's talk about some of these possible  minefields and how we as parents and teachers and medical professionals can help these young artists to avoid  them. Aiden, I would like to start with you, when did you first notice that your body had, different requirements  than dancers your age and how did you deal with that?  

00:03:14 

Aiden Leslie 

I could, when I, especially when I was younger, I could do a lot more things than other dancers really couldn't it  was kind of a good thing. When I was younger, when I was, five, six and seven, I was always in the front line, in  the center doing a scorpion or some crazy extension. It was really great cause there wasn't a lot of strength being  

asked. It was more tricks and flexibility. As I got older and especially once I started point grad graffiti started  becoming more challenging and more was being asked to me as a dancer. I started to notice that some of the  other dancers were starting to Excel at things that I was struggling with. One leg had relevance terrified me. I  just didn't have the structural stability on the, one leg to do on point. I started to be about 14, I, I was starting to  do more challenging roles.  

00:04:02 

Aiden Leslie 

I started noticing that I couldn't keep up without putting in extra work outside of class or even modifying in  class in rehearsal. I was always aware from a very young age that I could, my body had different limitations, but  also different strengths than other people did, but it was once I started dancing on point and started to get older  and more advanced within the ballet world that I started noticing that my body needed some extra help.  

00:04:31 

Jen Milner 

So what did you do about that?  

00:04:34 

Aiden Leslie 

I started working with you actually, Jennifer, you came to my studio, post Nutcracker one season when I was 14  and you helped us. We did a recovery class with my company and we really hit it off. I approached you outside  and said, Hey, I'm starting to do, really challenging roles could do you think you could help me to feel better  about what I was getting myself into and what it was being asked to do. I started working with you and I started,  getting into regular physical therapy sessions. I started getting into more cross training classes. I was doing extra  cross trained ballet exercise classes outside as well. I started having to put in a couple extra hours, but also make  sure that I was staying and working with good doctors who knew that, rest was lots and lots of rest. Wasn't  always the answer and lots of things I had to find my right crew in my right team to help take care of me.  

00:05:38 

Jen Milner 

And that was around age 14. Is that right? 14 or 15? Yes. Linda, is this something that you are seeing that there  are just dancers and athletes that need professional intervention at earlier and earlier ages? 

00:05:58 

Linda Bluestein 

Definitely. Exactly what Aiden described. I'm picturing in my mind a dancer that I danced with in college. And,  she was crazy flexible, but didn't have strength. Now I see as a physician, what I see is dancers running into  problems, very similar to what Aiden is describing at those young ages. I think one of the big contributing  factors is that the performing arts are so visual. Now we have literally at our fingertips 24, seven, 365 days a  year, we have access to all of these things. We have things on Instagram and YouTube and reality TV shows  and competitions. And, when I was growing up, but I was dancing, we didn't have access to these things. We  didn't really see what other dancers were like until went to auditions. I think now dancers are pushing  themselves harder and harder because they keep seeing these things they're, kind of in their face all the time.  And, so the level of competition, I think just keeps escalating and for hypermobile dancers in particular, exactly  as Aiden described, they will excel when they're younger.  

00:07:04 

Linda Bluestein 

It can become more and more challenging, especially like when they go through puberty. Puberty can be very  difficult because of hormonal changes that happen and things like that. So it's very common.  

00:07:16 

Jen Milner 

Kristin, you also work with a lot of adolescent dancers, in your practice. How do you see this population as  lacking proper nutrition or proper fueling even, and how can their support team help remedy that?  

00:07:35 

Kristin Koskinen 

Well, when we talk about dancers who fall someplace along the spectrum of Ehlers-Danlos syndrome, their  issues may not just be related to fueling as we think about for the artistic athletic component, but they can also  be influenced by some of the GI symptoms that we see that come along with Ehlers-Danlos. So, any number of  what we might put under the umbrella of irritable bowel syndrome, so chronic gut issues, tummy aches, that  kind of thing. Muscle activation, any sorts of inflammatory diseases, as well as compounding this with the  image that they want to meet when it comes to being a dancer. And like Dr. Bluestein said, these images are in  front of us all the time now. In the dance world, it's been part of the culture in history, especially in the ballet  room to how talk about line and fin and things like that. These dancers who really need to be addressing their  body very specifically to help with, connective tissue health, to support the strength, to support the extra  training, maybe distracted by dieting.  

00:08:49 

Kristin Koskinen 

Their support team we're looking at, it's a much more robust request than maybe what we're looking at a dancer.  Who's not who doesn't have these same hypermobile concerns.  

00:09:06 

Jen Milner 

Do you, with the people that come to you, Kristin, who may have GI concerns, right? Are you usually the first  person that they are talking to about any issues with hypermobility spectrum? I know that for my practice as a  Pilates teacher and as a ballet coach, I'm usually the first person to say to them, well, you're hyper mobile and  have you considered that there might be more that you need to investigate. I know for most of the people that I  

work with, I'm the first person that's talked that's had that conversation with them. Are you usually that first  person Kristin?  

00:09:50 

Kristin Koskinen 

A lot of times I'm the, sometimes if the answer is I am the first person. If a dancer, for example comes to me  because they're maybe a professional dancer or a pre-professional about making ready to make that transition,  and they're concerned about weight, or they've got this bloating that they just can't tend to. As part of the intake  process, I ask some questions and it starts to lead to, so you can touch your head to your butt and your thumb  does this thing, and you can do these circus tricks, this, we may have some other underlying issues. So that's the  first thing. And, and on the other end, a lot of times, I'm the end of the rope person where they've tried  everything else. It's, well, maybe we can, maybe it's a diet thing or it's a referral where another professional, whether it's you or Dr. Bluestein or a physical therapist notices that their client is at a stopping point with  recovery or can't get any farther. They know it's a food component and it's a nutrition issue. So they came to me  that way. So I will say, it's, it varies. I've seen it. Kind of all along that line. 

00:11:04 

Aiden Leslie 

I have a question for you. I know I really struggled when I was about 15 and started trying to make it a bit more  professional and getting inching towards that end goal. I couldn't put on muscle for the life of me. I was really  struggling with reaching that point where I could start building muscle. I started seeing a nutritionist and  everything changed in like one summer. I started doing like upping the protein and switching things around,  focusing on hydration. Do you see a lot of dancers that have problems putting on muscle as well, particularly  hypermobile ones?  

00:11:39 

Kristin Koskinen 

Yes. That is a big concern because they want to maintain muscle mass and they understand that this is part of  strength. Absolutely, I see it not only with hypermobile dancers, but also with dancers may be referred to me  because of a diagnosis like scoliosis. We're when we bring in those extra components of translating the idea of  you need more protein to, how can you make that work and how can you do that within your schedule, which is  usually really busy. If you're hyper mobile but you also have, specific training say with your ballet coach Pilates  and that kind of thing, the dietician can help find solutions to make it work. I'm glad to hear that you were able  to find someone who helped you work through that agent.  

00:12:29 

Linda Bluestein 

I'm really glad Aden brought that up. I just want to say that part of the challenge there is if you cannot put  enough load through a joint to get the muscle to be stronger than that's, the nutrition component of course is  essential, but that's also part of the problem is if the tissues don't, can't sustain that load, then that the body gets  stronger, not in the activity phase, but in the rest phase. It has to be able to do the activity and then have the rest  and recover. That completely makes sense what you're saying, Aiden.  

00:13:04 

Jen Milner 

Well, and I see that a lot too. I'll have, directors or teachers get in touch with me and say she needs to build  muscle, like put more muscle on her, make her build more muscle. I'm like, I can't just make her build muscle. I  can't just say let's do 10 more hamstring curls than we did last time so that your hamstrings get bigger. It's that  as you guys know, it's that sweet spot of pushing them enough, but not too much that they get injured and then  they're out for three months or, not too much, they don't have time to recover properly from it, as you said,  Linda. It's working with somebody who knows what that sweet spot is and not ignoring the nutritional  component of it as well. That doesn't matter how healthy you are with your activities and your rest and all that.  If you're not feeling yourself in a way that's going to help your muscle tissue grow.  

00:13:53 

Jen Milner 

Right. Linda we're talking about where on the scale, we usually get people in where we see them, like at the  beginning or at the end, do people usually come to you after having been through three or four other different  doctors? Or are you the first person that says, Hey, there might be an issue? Like where do you usually see  them?  

00:14:14 

Linda Bluestein 

Usually most of the people that I see already suspect that they have Ehlers Danlos syndrome or hypermobility  spectrum disorder, they've kind of found this information themselves and they suspect that it might apply to  them. They stumble upon the podcast or other things that I've done, that you and I have done, that the team is  doing. They reach out for more information. It's rare that I would be the first one to bring it up to them. A lot of  times they have seen many other doctors and many other specialists. I also get phone calls from, at a call from a  colleague this past weekend. He said, I saw three EDS patients in my clinic this past week, but I don't feel  qualified to diagnose them. So, so I need to send them to you. And, or do anyone else in your area? And I said,  well, I know someone in Madison, but I don't know anyone else like in this immediate area. 

00:15:11 

Linda Bluestein 

Finding somebody, with that expertise definitely can be challenging.  

00:15:16 

Jen Milner 

It can be. I think it's even harder when it is, an adolescent, right. A minor and the parents may or may not know  enough about what's going on to even know what questions to ask. So, so Aiden, were working together when  you first started kind of figuring out you knew something was different, you knew something was wrong and  that you needed outside help. So you sought outside help. We started working together. I started referring you  out. At what point did you kind of find that strength or courage or whatever it is to start advocating for yourself, in the classroom as well, and not just saying to your mom, I need help, but being able to speak up in the  classroom and say, no, I'm not doing that again. Or that's too many roles or what, which most people are like,  Oh no, too many roles.  

00:16:04 

Jen Milner 

Oh, but what I mean? That's too much work for me to be doing. Where, where did that come up? And how hard  was that?  

00:16:10 

Aiden Leslie 

It's sort of a twofold. I, it was two things had to happen simultaneously for me to get there. The first was that it  reached a point where I was managing and I was doing well with all my outside help, but there reached a point  where I was learning eight roles in one Nutcracker performance and all of this outside stuff and all these  rehearsals. And I physically couldn't do it. I knew that if I wanted to reach that end goal of performing on stage,  I had to do something and adjust something and modify and advocate for myself in the classroom and rehearsal  period, so that I would make it to the end. Also one of a really the more difficult aspect of that was it didn't  really, I didn't reach them the much needed maturity level to start advocate really advocating for myself on a  pretty much daily basis until I started having teachers who was teaching style and maybe their preferred ballet  technique did not work for my body.  

00:17:03 

Aiden Leslie 

When suddenly they were asking me to do specific steps or stretches or combinations that my body couldn't  handle, I started having to step up and say, can I not do this? Can I not do that? Can I make this stretch? Can I  not jump today so that I can do six hours of rehearsal afterward? And it really came down to that. I needed that.  I just couldn't work with that particular technique constantly and still do what was asked of me. It was a twofold  between both of those things happening and it was very difficult. No, no dancer wants to stand up and say, Hey,  can I not do this? I think everyone's terrified of the repercussions of what if I get this role taken away? What if  they don't use me again? And that can be terrifying, but I had to remember that if I start speaking up and it  wasn't big things I wasn't asking, can I not dance for three weeks and then do the performance right after it was  little things here and there.  

00:17:58 

Aiden Leslie 

I had to remember that I was doing this so that I could go on stage and be my best and do what was being asked  of me and do it better maybe than they were thinking I could do it in the first place. I had to keep that in mind  and it was definitely challenging, but if I kept that in mind and I stayed respectful and just did the best that I  could, I've made it work.  

00:18:20 

Jen Milner 

Well. It's very scary for any teenager to speak up to a person in a position of authority, right? And to say, I don't  think that this is safer. It's right. For me. I mean, it's hard for any child or youth to do. Add into it, somebody in  the artistic world, if you're a dancer or a gymnast or a skater where we're trained so unconditionally to obey our  coaches and to obey our teachers and to listen to them and do what they're saying. A lot of times I have to have  

conversations with parents and remind them that they're paying the people, right. That you are submitting  yourself to someone else's authority, but you are also the boss because you're spending that money. If you're going to spend that money, you should submit to their authority, right? You can't just pick and choose what  you're going to do and not do.  

00:19:07 

Jen Milner 

You also have to say, I can choose whether or not I'm going to submit myself to this authority. I've had dancers  with EDS in classes where the teachers just give crazy back strengthening. I'm sure you can picture some of  them back strengthening exercises. I've just had to say, you can't do those. She said, well, how do I not do them?  And I said, will you just tell the teacher, no, you do it respectfully. You don't do it in the middle of class right  there at the time. You walk up before class and say these exercises that you do, I've been advised not to do them.  May I please sit out? I will work with my trainer to come up with alternatives that I can do while you do these or  something respectful, but to speak up to a teacher and say, I don't want to do that.  

00:19:49 

Jen Milner 

That's a huge, that's a huge step for a lot of people to take, And, and as we're looking at advocating for yourself,  Linda, what about parents who say, there is something wrong with my child or not wrong, but there is  something different about my child, right? I have no idea what to do about it. I just know that they always seem  to feel not good. They always seem to be on the verge of getting injured. They seem to tire more often. What  would you suggest to them? What are their next steps? How can they get help.  

00:20:23 

Linda Bluestein 

Before I answer that question? I just want to piggyback on what Aiden said and in your it's fascinating to me,  it's, you're so wise, it's so amazing what you did, because I think the other thing is as dancers and gymnasts and  so many other performing artists, we don't use our voice. You had to find your voice and advocate for yourself  in a way that a lot of us as adults even do. So, you should really give yourself a Pat on the back that you were  able to do that. That's, that's really amazing. Thank you. Yeah, it's really amazing. And, getting back to your  question, Jen. I think that really, it depends on where the person is at, but for a lot of people, forming, I w I  originally said team, but I like Aiden's word crew better because I feel like that translates better into the  performing arts world.  

00:21:18 

Linda Bluestein 

Find your crew and your crew should be headed up by your primary care doctor. If you're under 18, your  pediatrician, if you're over 18, you might've been internal medicine or family medicine doctor, or if you're under  18, you have a family medicine doctor also, but that crews should be headed up by the captain of the team. Well,  technically, I guess it's you the captain of the team, but the next person after that would be whoever your  primary care physician is. The other people that I think are critical to have on your team are number one,  somebody related to movement. So that could be a physical therapist. It could be a Pilates instructor. It could be,  a Gyrotonic instructor. It could be an athletic trainer. It depends on what the needs are of that particular, artist or  athlete. So, that's important movement having somebody coaching you and how to move well, because we want  to make sure that we are using, good movement patterns and things like that.  

00:22:13 

Linda Bluestein 

We're not harming ourselves, because one of the keys is to keep moving. The second thing is addressing  modifiable risk factors. Things like nutrition are hugely important. Sometimes a nutritionist is absolutely one of  the key people that it's going to be on your crew. Other modifiable risk factors would include things like sleep.  Good quality sleep is very important. The third person that you want to have on your crew. I picture this kind of  in a triangle because these things are all interrelated would be, related to the mind. Whatever you need to do in  order to have yourself as mentally healthy as possible, because the mind and the body are absolutely connected,  what happens in the mind effects the body and vice versa. We want to make sure that whether it's, support  groups or, finding a community that helps meet your needs, a counselor or a psychiatrist, whatever it is that you  need in order to be mentally healthy.  

00:23:12 

Linda Bluestein 

I think that from there, you may or may not need specialists on your crew, but I think that's a good, kind of  starting point. 

00:23:22 

Jen Milner 

That's great. I love that image of the triangle as well. You're trying to hit all of the types of things that, the  different ways that you need to take care of yourselves. Speaking of the mental health aspect of it, Kristin, I  wanted to come back to you. We've talked in the past about how, people with hypermobility have a higher  incidence of anxiety of OCD, of tendencies towards disordered eating. You add dancers into that or any kind of  artists, there's always going to be that higher risk. As you are trying to work with dancers and you see them  somewhere on the hypermobility spectrum, is that kind of in the back of your mind, thinking, let me look out for  any warning signs for disordered eating, or do you see it coming up more often? Is there advice you can give  parents on what to look for as they are trying to move through this and figure out how to help their hypermobile  artist?  

00:24:21 

Kristin Koskinen 

I always have the filter when I'm working with any artistic athlete, any athlete, I always have the filter that just  disordered eating, maybe playing with dancers. Absolutely. For parents, it can be so challenging because young  people, especially adolescents, which a lot of times like when we hear Aiden, it was fine until it wasn't. As you  hit those, adolescent years, that's when they move in. Also psycho-socially as kids reach adolescents, they tend  

to start to explore their independence from their parents. Parents are reaching out to help, sometimes kids pull  away and that can be a very timely, it can be very timely at that point for parents to bring in other people for  their kids to talk to and communicate with. When we look at it's this idea of a wheel, but crew, these are  components that any dancer should have onboard board training and movement, and your primary care or  nutritionist.  

00:25:37 

Kristin Koskinen 

These are all things that every dancer should have. As we normalize that in regular dance, we're all done. We  can look to say Royal ballet school as the flagship of that. As we, as a group, bring that together and say, this  isn't just because you have this condition that makes you special. Really. We want to see this with all the  answers. If you're a dancer, we really want you to see, we want you doing, strength or cross training. We want  you to see the dietician. We've got counseling available. That's probably a good idea too, and bringing it all in. That's an approach I like to take. Because oftentimes it is the parent leading with concerns and coming to me  and maybe a reticent kid in the background saying, I don't need help leave me alone, peace out. So, so the  bigger, sometimes that's a conversation I have just with the parent.  

00:26:31 

Kristin Koskinen 

We decide if a kid, the client is interested, or if they have a point of interest where interest, what's an entry point  for that person. It may not, it may be about strength it's which, is it strength, or am I going to get bulky? are you  going to make me fat? Or are you going to, as the weight it, no. This is about strength. As just bring it back to  what Dr. Bluestein said, it's about strength and coordinating these efforts and bringing in building blocks, if it's  about bloating. They're concerned that I, I eat and I got these GI issues. Food runs right through me. I get sick. I,  I eat and I swell up, but it's not an allergy. We can address those. If that's a primary concern, if they come and  they're concerned about their weight, this may be an opportunity for us to talk about some of the other things.  

00:27:24 

Kristin Koskinen 

We take what's available and work with that point of interest for the client. Sometimes the parents and  sometimes parents, should always be involved in the care of their child. Sometimes they may decide it's better to  let the kid have one-on-one time, so they can be authentic and get the help they need. Sometimes it's, and  sometimes we say, today it's time for a team meeting because we have to have this crew and mom, dad guardian  are integral to the success of these things.  

00:27:56 

Jen Milner 

Yeah. I do see that independence that you're talking about that, I know the dancers will sometimes have  discussions with me that they won't have with their parents, that they don't want to talk about with their parents.  And, and it's finding that balance for me of creating a space where they can have those conversations, without it  being so isolating, it's great. If the parents on the other side of the room or something, and the kids feel free to talk about it. Sometimes they'll float up test balloons in their conversations where I know there's bigger things  that they want to talk about. As far as my scope goes, I'll be very honest with them and say, you can tell me  whatever you want to tell me. I won't repeat it to your parents, unless I think that it's something that's going to  harm you or someone else.  

00:28:40 

Jen Milner 

If you want to tell me how mad you are at your parents and how much you hate them for making you go to bed  at 10 o'clock. I won't repeat that, but if you have harmful thoughts, then we are going to have that conversation.  They float those test balloons, I know that it's time to have that conversation with the parents, and then the  parents can find someone else to have a conversation with too. So you're right. It's really tricky at that age to  find people that they want to talk to. When, as a parent, you're like, just tell me and I'll help fix it for you  because that's what we've been doing, our whole lives for those kids. And, and it's so important as a teenager to  have that pit crew, because they're not going to be your kids forever. It's important to teach them how to have  their own pit crew and how to get out there and find their own specialists and give them the independence to be  able to make those decisions and things for themselves.  

00:29:36 

Jen Milner 

Aiden, I wanted to ask you no longer. At what point did you decide to stop and what was that transition like?  And what do you wish had been there for you that wasn't there for you? Was there anything you wish you had  done differently or there had been some a support, or how did you feel about that transition?  

00:29:57 

Aiden Leslie 

I stopped dancing when I was 18. I think about six months before I like to say I hit the EDS wall where I was  doing fine. I had some couple of symptoms, some joints that didn't want to stay in the socket. Some things like  that, but some pain. When I hit that wall, it was everything went wrong and everything went wrong  immediately. I started having a constant headache, like a migraine type headache. I started having more joint  subluxation than normal. I started having GI issues. It just all started to swarm. For a few months, I still tried to  dance, not nearly to the level that I had been. I, it was in January that I started getting sick and, I had summer  program plans that I had to quietly leave behind and things like that. I had planning to try and dance  professionally, and I had to step it back and go from dancing 25 hours a week or more to trying to do one to two  classes a week, just to see if I could handle it.  

00:30:49 

Aiden Leslie 

I did about six months of trying to make that work. I remember going to very low level. I think I was 18. I was  in classes with 11 year olds just trying to stay afloat and trying to keep doing it. I was so limited with my  headache and what my body was feeling. I couldn't jump, I couldn't turn, I really couldn't do center. I was so  limited. I could pretty much do plays and tondos, and I love plays and tondos, but those also hurt my body too.  So I reached a point. I remember getting it and everyone was doing part of back and I was just standing there  and I thought, it's not worth it anymore. It, it just wasn't, it wasn't for me anymore.  

00:31:31 

Aiden Leslie 

I could no longer do. My body was screaming for me to stop. So I retired when I was 18. At the time  immediately in the days after my body had a couple of days that it just felt so much better. My hips weren't  hurting as much. My knees weren't hurting as much. I thought, why didn't I do this sooner? My body feels so  much better. Those few days passed and everything that had been hurting came back. I still had joints that were  subluxing. I still had my headache. I still had my GI issues. I, I'm still very happy with where I left it. I think I  gave it everything I had. I, I didn't, I never for a second pull my punches and I did all the outside training and I  did everything I could, but my body couldn't do it. And, and I know it's very personal choice and it's very  personal based on everyone else's bodies when they choose to stop.  

00:32:18 

Aiden Leslie 

For me, I was very lucky because I had the support I needed. I had fantastic parents that were willing to drive  me to these ballet classes when I was so worried that I was going to get in there and make myself feel worse.  That would feel terrible when I was like crying on the way to class. I had parents who would drive me and calm me down. I had, you, Jennifer, who was helping me to feel as good as I could. I went in and keep managing  myself outside. I had a nutritionist, I was working, trying to still get protein, even though I was having GI issues  and all the other food groups I was working, I think with Dr. Bluestein at that point as well, trying to see any  way I could really get in. I was so lucky that I still had that support group, even when I stopped dancing, it was  there.  

00:32:58 

Aiden Leslie 

Everyone was there for the whole transition, which was so good. I was so lucky to have that because it made the  world a difference that even though I wasn't dancing, I wasn't going to class. I had that support system to help  manage my body and my mind and kind of my soul in a way to, through that transition. In retrospect, I was very  lucky and I think I stopped at the perfect time for me. That, again, that's a very personal choice, but I, I'm very  proud and grateful of where I left it.  

00:33:32 

Jen Milner 

Well, Aiden, you're like the textbook example of the best possible case scenario of making wise choices and  doing everything that you can and really doing things well, and having an incredible support team and being  content, knowing I've done everything right. I have gone as far as I can. You did mention something about how  you stopped and then you felt great and then you didn't feel great. I was wondering, Linda, do you see that a lot  when people who are very active think, Oh, I am so active and I'm in so much pain, I'll stop and I'll feel better.  When they stop, they actually realize they feel worse.  

00:34:09 

Linda Bluestein 

I do. And, and the other thing that I think is really challenging is that sometimes were talking about mast cell  activation syndrome, just very briefly, whether it's related to that or things that are going on, otherwise in the  tissues, more musculoskeletal type things like with a sunburn that we don't feel while we're on the beach, we  often don't feel what's happening in our bodies until afterwards. I think that can make it, confusing sometimes.  

So, yeah, I was super interested when Aiden was talking about that is fairly common and the trick is finding to  where the right amount of activity is for that individual person, because, these conditions, whether it's Ehlers  Danlos syndrome or hypermobility spectrum disorder, they're so heterogeneous, so they're very different in each  person. What's right for one person is going to be very different than what's right. For another person. That's where if you can, like Aiden did, if you can get that crew and get things as individualized as possible, because  what worked for someone else, maybe it's going to work great for you, but, Kristin often says it's an N of 1.  

00:35:22 

Linda Bluestein 

You know, it's my body. No one else has the exact same body that I have. We all have similarities, but we  definitely have differences too. So I do see that. And, I think that it's learning to listen to your body in the way  is,  

00:35:38 

Kristin Koskinen 

Is hugely beneficial.  

00:35:41 

Jen Milner 

Absolutely. Something that we just have to learn over time is how to listen to our bodies. I haven't even learned  that super well still sometimes. You do a process, it's a process. Kristin, I know that you are a mom as well as an  expert in nutrition. I'm just wondering, what is your mama heart say when, or what is your mama heart wish that  these bendy bodies would know as you see them struggling with the issues that they have got?  

00:36:11 

Kristin Koskinen 

Oh boy, well, my mama heart reaches out to those parents too. To know that there are resources available who  are going to help you take care of your child and to help your child take care of themselves, which honestly is  one of the most important things. Learning this, listen to your body, know that there's help available. So, yeah.  

And how do boy it's hard. There are things we can do and we can teach, knowing that your child can learn how  to take care of themselves and what I see and I'll speak for what I do that is, it integrates everything. I'm talking about food for your child, it's not just, you need these nutrients to be strong and do the things. It really goes far  beyond that. Because as were speaking before, there's this psychosocial component where kids want to be  normal.  

00:37:17 

Kristin Koskinen 

Like they want to be like everybody else or their version of what they think that looks like they want to be able  to do the things. How do we, how do we address that? And that's going to be any equals one, I don't know that  depends on your kid. Sometimes we need to weave things in how, is there going to be a consequence for that?  

How can we make that work? What's really important. Something that came up with me at one point was, one of  my dancers, because we go through a lot of tissue in sessions. It's not uncommon. It's really emotional. You're,  when you talk about food and diet, it's it reaches through your whole life. She was really upset because she just  wanted to go to Starbucks with her friends and do normal things. Like she wanted to go and do that normally.  

00:38:01 

Kristin Koskinen 

We talked through it and to her that meant getting a certain drink. When we talked to her, I was like, is it being  with your friends? Well, that's the real thing. So we've got that. We found some options that actually worked for  her. She could go and not just like have a bottle of water so that she could participate fully. That I think for the  parents means a lot because when you see your kiddo emotionally hurting, not just physically hurting,  sometimes those emotional alleys, those are the ones that we have a hard time healing, especially as your child  is moving closer to. Giving them these tools to understand, and some of the tools are, this is your team. Now it  may be your team forever. It may be a proof. It may not, but at least, you know that, you also have a referral  base.  

00:38:47 

Kristin Koskinen 

You find someone who works for you, they may know someone else who can help you out. So, when your  parents, when you're looking for people, I, I recommend find someone who does have an integrative approach,  find someone who does refer out and has a team who can help your kiddo. Find people who can spend the time  and understand is this. And they can treat your child as an individual. Sometimes we're going to have individual  sessions. Sometimes we're going to have group sessions and find someone who your kiddo feels comfortable  with. That's really important if the child is the client. They need to want to communicate with this person. If  they don't then find someone else, let them be part of the interview process, just because mom likes the person  or dad likes the person that can be a good start, but really that the client needs to be comfortable with the  provider.  

00:39:47 

Kristin Koskinen 

We can go from there because we have to have a lot of really good communication. Even when someone tells  me their limits, it's really important that they can say, I'm not going to do that. Or this is what I'm willing to do,  or this is, I have this other thing that is working against me, we need to have that level of openness and the  communication. Your dietician is probably going to be about the same level of comfort that you should have  with your therapist or counselor, because there is a lot of overlap. So, include your kid in the process, find  someone who's going to be able to take care of, the broad spectrum.  

00:40:24 

Aiden Leslie 

You made an excellent point there about the psychosocial. I know, especially from the dancer perspective and  not necessarily the parent one, but the dancer perspective, were talking earlier about having the courage to talk  to your teachers. There's also an innate level of courage of having to do things separate from your peers. Even if  you're quote unquote breaking the rules, like I had to do quite a bit, where a leg warmer, if that's for your ankle  injury, even if that's against dress code, or I remember I had to have, were only allowed to have water, but I had  to bring in water that had electrolytes in it too. So it didn't really look like water. So that was breaking the rules.  I just, even though it wasn't and I had to, I had special permission where I could, the other dancers had more  strict rules about what they could drink water, but I had permission to drink water whenever I needed it, in order  to keep me, I remember I was doing snow and I nearly passed out and the exact same point, every run of snow  and Nutcracker. 

00:41:15 

Aiden Leslie 

I had special permission to adapt. I was terrifying at times when everybody else in the room was doing X, Y,  and Z. If I wasn't doing the particular step or I was doing something differently, I was the only one. There was,  you had to deal. I had to deal with that. It was something I had to learn how to manage, because that was almost  more terrifying than talking to the teacher. It's not just one person. It's, the 32 other girls and boys around you.  They, you feel like they're all looking at you, even though, they're not. That was something that was terrifying  for me. I think it's so important to bring up.  

00:41:52 

Jen Milner 

That's true. It's not even the official codefied things like you need to wear a leg warmer. It's the things like when  your friends say, Hey, let's stay in practice. Our forte turns and your leg is shot. Or when they say, Hey, let's do  32 more, on Chicago. You can, you're about to black out, like you're starting to lose your vision or when your  friends are texting at two o'clock in the morning and they're like, let's just do 500 crunches right now. So we'll  look better. And you're like, I can't write. And you shouldn't either. Even just the unwritten things like I  remember when you were at PMB and you would be on a break time, a lot of your friends would go and get a  smoothie. You knew that you couldn't waste your precious energy, walking up the hill to go get a smoothie. You  would have that break time, lying down with your legs up the wall and trying to give yourself that physical rest  that you needed.  

00:42:45 

Jen Milner 

You're losing out on that social time and you're losing out on that chance to connect with your peers and be,  normal and not be the different person. Who's always making a big deal. It takes strength and courage to learn to  be that person. Again, kudos to you for as well as you did it.  

00:43:05 

Linda Bluestein 

And, and sometimes you get conflicting advice. I heard from a physician once that said to a patient, they said,  you need to be a normal teenager, but at the same time, go to bed at the same time every night and blah, and all  these other like restrictions. And it's like, now, wait a minute. Those two are not, there's no overlap there. You  know, normal teen normal quote. If there is such a thing, teenagers don't go to bed at the same time every night,  they do other things, they eat a wider variety of foods perhaps, or whatever it might be. Sometimes you can get  advice that is really like, wait, what do I do with this? Cause they just said two things that are really, counter  productive, or, conflicting advice. So that can be hard. You really have to speak up again and say, well, what do  you mean next?  

00:43:55 

Jen Milner 

Absolutely. Absolutely. It can. Does anyone have anything else that they wanted to add? Is there anything that  we did not cover today? Team bendy bodies? No, we're good. All right. Well, what I heard today, from these  wise mouths was that if you excel at something until you don't and if it's all fine until it isn't, then it's okay to  acknowledge that you might be different and it's okay for you to acknowledge your child might be different and  need that extra help. That's the time to start forming your wheel or your triangle and put your pit crew together.  It really only takes one person find one good person, whether it's your pediatrician or a PT who understands and  listens or a ballet teacher who is really well versed and can point you in the right direction, find that one person,  and then they can connect you with someone and they can connect you with someone.  

00:44:56 

Jen Milner 

You'll have your whole pit crew together. It's definitely not something you have to do by yourself. That's why  we're here team bendy bodies to help as well. You can always send us questions and, we would love to address  those questions in another podcast. If people want to sit down and chat with us, we can do like a zoom town hall  and chat about that. Or we can do a bendy bit if there's a specific topic you want to see covered. Please let us  know what questions you have and we would love to cover them for you. You have been listening to bendy  bodies with the hypermobility MD. Today we have been speaking with team bendy bodies. We have Linda  Bluestein, Leslie, we have Kristin Koskinen and I am Jennifer Milner. We thank you so much for joining us  today. Thank you everybody for coming on the podcast and for sharing your expertise with us. 

00:45:48 

Linda Bluestein 

Thank you. Thanks Jen. Thank you for joining us for this episode of bendy bodies with hypermobility MD,  where we explore the intersection of health and hypermobility for dancers and other artistic athletes. Please  leave us a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes. Be  sure to subscribe to the bendy bodies, YouTube channel as well. Thank you for helping us spread the word  about hypermobility and associated conditions. Visit our website, www.bendybodies.org. For more information,  for a limited time, you could win an autographed copy of the popular textbook disjointed navigating the  diagnosis and management of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders just  by sharing what you love about the bendy bodies podcast on Instagram, tag us at bendy_bodies and on Facebook  at bendy bodies podcast. The thoughts and opinions expressed on this podcast are solely of the co-hosts and  their guests.  

00:46:53 

Linda Bluestein 

They do not necessarily represent the views and opinions of any organization. The thoughts and opinions do not  constitute medical advice and should not be used in any legal capacity whatsoever. This podcast is intended for  general education only and does not constitute medical advice. Your own individual situation may vary, do not  make any changes without first seeking your own individual care from your physician. We'll catch you next  time on the bendy bodies podcast.