Empowered Sleep Apnea
Some podcasts give you INFORMATION. Empowered Sleep Apnea gives you knowledge. Join Sleep Medicine master-clinician Dr. David McCarty and Sleep Neuroscientist Dr. Ellen Stothard as they do a deep conversational dive into one of the most complex, common, and misunderstood disorders on the planet: Sleep Apnea. Using a combination of humor, fictional elements, and--yes--even CARTOONS, Empowered Sleep Apnea takes you where no other Podcast has gone before!
Empowered Sleep Apnea
Episode 3: ADELAIDE
[For a full PDF Transcript of this episode, click HERE]
***...A speech language pathologist with "Darth Vader" breathing during sleep...
***...a close encounter with a living legend...
***...and a rabbit hole into a complexity that could not be unseen...
...and what about the MONSTER called "Daniel?"
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Join Dave and Ellen as they welcome Speech Language Pathologist, Myofunctional Therapy expert, and author of the book Sleep Wrecked Kids, Sharon Moore, as she shares her personal true story of transformation and EMPOWERMENT.
Featured Cartoon: CAT Scan
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More information on special guest Sharon Moore:
Sharon Moore is a Speech Pathologist with 4 decades of clinical experience across a wide range of disorders of function in the upper airway. She has worked in clinical settings in Australia and London. Currently, she runs a Private Practice in Canberra, managing medical and dental specialist referrals for patients of all ages and is a member of the Transdisciplinary team for the Canberra Sleep Clinic. Orofacial Myofunctional principles are fully integrated into diagnosis, assessment and treatment of atypical or dysfunctional: breathing, swallowing, chewing, phonation, speech & breathing during sleep.
Sharon has a special interest in early identification of craniofacial and function & growth anomalies in non-syndromic children that influence airway patency during the day and during sleep. Recently, acknowledgement of the role of upper airway muscle function in management of sleep breathing disorders, hails a new era of relevance for work in the upper airway, and affirmation of her chosen clinical direction. With significant health morbidities of sleep disorders in all ages now widely known, Sharon believes there has never been a more important time for medical, dental and allied health professionals to work as a team to resolve airway breathing issues in early childhood. She is author of the book 'Sleep Wrecked Kids: Raising happy healthy children one sleep at a time'.
www.SleepWreckedKids.com
www.wellspoken.com.au
Our Website: https://www.empoweredsleepapnea.com
Official Blog: "Dave's Notes" : https://www.empoweredsleepapnea.com/daves-notes
To go to the BookBaby bookstore and view the BOOK, click HERE!
Empowered Sleep Apnea: THE PODCAST
SEASON TWO: STORIES FROM THE FIELD
Episode 3: ADELAIDE
Episode Transcript
For a PDF of this transcript, including CARTOON (huzzah!) click HERE.
All content ©2023 www.EmpoweredSleepApnea.com
00:00 INTRO (“change the channel!”)
Weather Guy: …looks like another BRUTAL day of punishing heat out there…Financial Guy: …coming up next…we’ll check in with Karen about the current trends on Wall Street…Silly TV Show Guy: … next on ADULT SWIM…Horsehead Dogman!...
00:20 Disclaimer
Empowered Sleep Apnea is an educational podcast, which is a bit different from a medical advice show. Clinical decision-making in Sleep Medicine can be complex, so even EMPOWERED patients need a partner. Play it smart, and make sure you talk to your healthcare provider before making any changes to your medical treatment plan.
And now…on with the show!
00:47 Opening Titles
Empowered Sleep Apnea: THE PODCAST
Season Two: STORIES FROM THE FIELD
Episode 3: ADELAIDE
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01:04 Dave’s Introduction
Sometimes in this life…there’s no hiding what you are…no getting away from what you’ve seen. There are moments in life when what we’ve seen…what we’ve learned…suddenly crystalizes into something greater. These are “AHA!” moments, snapshots in our greater quest for wisdom that mark the threshold between BEFORE and AFTER.
On today’s episode of Empowered Sleep Apnea: THE PODCAST, we’ll hear about such a moment, when we will meet an acclaimed author, speaker, educator and Speech Pathology/Myofunctional Therapy expert…
…and we’ll get a glimpse of our Sleep Apnea leviathan through a different lens…that of a professional therapist for the muscles of the upper airway…
…so come with me as we release the sandbags and direct our Beautiful Blue Balloon to the faraway seas…floating on gentle timeless breezes to the other side of the world…Australia…
…we breeze by the scrublands, and set our sights on Southern shores…
…in the twinkling beach town of Adelaide is a café…in that café is our next storyteller...
We’ve just ordered our coffee…just in time for our next story of transformation…Sharon Moore is here to join us, with her true tale of a complexity that could not be unseen…
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The Complexity That Could Not Be Unseen
(Written and Performed by Sharon Moore)
2:53 Meet Sharon Moore
Hi. My name is Sharon Moore. I’m an allied health professional.
And I’m going to tell you a story today about how my personal transformation became part of a journey down the rabbit hole called “Sleep Medicine”, and about how the complex problem known as “Sleep Apnea” can be discovered in the strangest and most surprising places.
But first…a little bit about me.
3:20 What is Myofunctional Therapy?
Lots of folks don’t know what allied health professionals do unless they have had personal experience.
Further, myofunctional therapy is an even deeper mystery. That’s OK, because I don’t mind talking about it-both my profession and how myofunctional therapy is used as a tool in my practice.
I’m a Speech Pathologist (that’s the Australian term). Have you ever known someone who had to relearn how to swallow safely, say, after a head injury or a stroke, reduce stuttering or learn to pronounce sounds better so they can be understood? The person helping them was a Speech Pathologist, most likely.
That’s my background training.
Some Speech Pathologists are like super-specialized physical therapists for all the little muscles inside the mouth, face, throat, and neck. We examine how the muscles work, how they fit together, and how to help them when they’re not working as they are supposed to.
Not doing the important jobs their designed to do…and they have a lot of important things to do!
Let’s do something simple. Take a sip of water or coffee or tea, hold it in your mouth for a minute, and then swallow it. Simple right?
Seems so, but to a Speech Pathologist, there is a sublime orchestration of events, a complex coordination of muscle movements that occurs along the length of the airway to ensure that liquid goes exactly where intended, the belly!
It is a beautiful coordination of different actions and there is a particular way that the tongu--and all the other supporting muscles in the face, mouth and throat--move during that seemingly simple activity.
Sometimes the muscles don’t move the way they’re supposed to, though. And that’s when trouble starts.
We have names or “diagnoses” for these types of troubles, like dysphagia, dysphonia speech disorder to name a few.
Myofunctional therapy is something a little different.
It does not correct dysphagia or dysphonia or those other diagnosable disorders like that.
Myofunctional therapy is a specialized branch of allied health, in my case - Speech Pathology, originated by dentists and orthodontists, who discovered that certain patterns of muscle movements in the face and the mouth, would go hand in hand with dental and orthodontic problems and if you corrected those muscle habits, the dental and occlusion problems would resolve!
Other times, they observed that certain jaw or face development problems caused muscle movement problems and there simply wasn’t enough space for those muscles to move as they should because the bones were not developing properly.
That's another long story for another time!... but muscles help bones to grow and the way the muscles work in the airway is connected to sleep and breathing because mouth jaws and teeth form the front of the airway...if the mouth is the door for food and drink, the inside of the mouth is like the hallway.
Dentists have worked for many years with SPs who could re-educate muscle patterns effectively. Over time, ‘it went out of fashion’ and now it’s back with a vengeance!
…with other allied health professionals now also providing myofunctional therapy to their patients: like occupational therapists, Physiotherapists, or dental hygienists. Myofunctional therapy is a process of reeducating atypical or dysfunctional patterns of use of the muscles in the mouth, face and throat. Research shows that improving the ‘fitness’ of these muscles can reduce severity of OSA.
The disorder that’s commonly called Sleep Apnea has a thousand faces, I can tell you that. When Sleep Apnea was originally described, the intent was to understand why heavy individuals who snored were often so sleepy.
Sleep Apnea has other faces, though.
The original description of Sleep Apnea created a narrative for one important aspect of this disorder, the concept of a floppy and dysfunctional upper airway, one that collapses during sleep, when it’s meant to stay open.
Assessing, diagnosing and treating things that go wrong in the upper airway is what I do every day in the clinic, with both my SP hat and my myofunctional therapy hat.
Dental and medical specialists send me referrals to assist patients whose muscles are not behaving the way they are meant to- causing problems with breathing, breathing during sleep, eating, drinking or speaking, to name a few. I love the complexity of how the components fit together. Research has shown that myofunctional therapy can improve ‘floppy airway muscles.’ That is an exciting concept, but before you get too excited that this is the answer to all obstructive sleep apnea...
And I’m here to tell you: there’s more to it than just a floppy airway.
I’m living proof of that.
That’s what this story is about.
09:40 “Darth Vader” Breathing
I’ve always loved exercise and sports, and I’ve always been fit. I was a dancer, a team player, and a distance runner.
I never snored.
But, in my late 20’s, I developed an alarming symptom of harsh, noisy breathing at night.
My friends teased me that I sounded like Darth Vader, though nobody was laughing at how I felt: my lousy sleep was making me feel lousy all the time!
I went to my physician and was promptly diagnosed with asthma, and I followed my instructions to use my inhalers assiduously. Nothing worked.
Meanwhile, the Darth Vader breathing during sleep continued, and my life was becoming progressively more wrecked, due to my wrecked sleep. The inhalers weren’t doing anything helpful, and I was starting to get desperate. In fact, the particles in the inhalers, irritated my airways making my cough and breathing difficulty worse.
My home at that time was over a hundred years old, unbeknownst to us at the time, the attic floor was covered with a thick carpet of accumulated dust. My sports regimen at that time included a daily 4Km swim in a chlorinated pool. When I asked my doctor if these elements—dust and chlorine-- were the cause of my symptoms, he told me no, and gave me a lesson on how asthma really works.
I got the feeling he thought I was simple.
I listened patiently, but inside I was disheartened and, frankly, demoralized.
I saw no end to my plight.
I suppose you could say I did it against my doctor’s advice, because technically that’s what it was, but in 1986 we moved away from that old dusty house to a beautiful dust free place in Adelaide by the sea where I swam in the unchlorinated sea.
My “asthma” disappeared, and my Wrecked sleep blissfully sorted itself out.
At the time I was relieved to be healthy and happy again and I did not think much more about it until I started to understand much more about upper airway, breathing and all the things that can affect how the airway works.
Allergy and allergens are a big deal and in my case, the ‘beast behind’ my disrupted breathing. It was not asthma.
It is not unusual for my patients to be diagnosed with ‘asthma’ as the cause of their dysfunctional breathing, and it turns out not to be so.
Once you’ve had an experience like that, it tends to change you.
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In my professional life, I frequently receive specialist dental-orthodontic referrals, for example, to correct speech problems related to malocclusion—or “bad bite”--and myofunctional disorder—or “oral habits” that interfere with proper muscle movements or healthy growth of the teeth and jaws, or mouth-breathing, that’s interfering with sleep.
Many dentists understand the important role of muscles so they, in fact, be the very first providers to notice something amiss “in my department,” which is not surprising.
Dentists look at mouths differently than physicians do. The “bird’s eye view” of the face mouth and back of throat, that dentists and SPs have creates a natural overlap & synergy between Dentistry and Speech Pathology, and whilst the dental focus is on structure and SP focus on function—and how things work-- the 2 aspects are inseparable.
14:34 Meeting Dr. Guilleminault
It was a dental conference in Sydney, in 2013, that I had a momentous “AHA” moment, one I couldn’t forget, that left me changed.
It was the first of many times that I met Dr. Christian Guilleminault.
In sleep research, Dr. Guilleminault was a pioneer. He was the scientist who first coined the term “Obstructive Sleep Apnea Syndrome.” He was tireless, passionate, inspirational, and kind. I was one of 1000s that he inspired to learn more about paediatric SDB, stressing the critical importance of ‘good airway muscle function’ and the role of myofunctional therapy. Sadly, he passed away in 2019. He is dearly missed by those he inspired, but who learned so much from his thought leadership and continue his work to this very day.
When I heard Dr. Guilleminault speak, I felt something momentous. It was as if the right lens finally fell into place, and everything became crystal-clear. See, viewed through the lens of a Speech Pathologist, dysfunctional breathing during sleep is an engineering opportunity.
It’s impossible for me to see it any other way.
That was when I jumped into the rabbit hole, and I never looked back.
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16:16 The MONSTER called “Daniel”
When I met Daniel in 2014, he was 4-years old and described by those around him as a “little monster”.
Now, that’s a terrible thing to say about a little person who literally has no control over himself, but being around Daniel had become very difficult, his behavior was relentless and intolerable-- especially considering his poor parents were totally exhausted too. He refused to go to bed at night. He only had ~ 7 hours and he’d wake his parents multiple times each night. In the morning, he’d hit the ground running, virtually airborne. His explosive temper tantrums were epic.
His parents, Sofie and Stuart, looked red-eyed and haggard. Their marriage was at a breaking point. They’d seen 23 different medical specialists across 2 continents, and they’d come away with pretty much the same thing from all of them: Daniel, they were told, would “grow out of it.”
There was nothing they could do.
At that time, Daniel had pretty big tonsils, but they were never considered a problem. The 3 ENTs they’d seen as part of the 23-doctor parade explained that the tonsils “didn’t have to be removed”, because they “weren’t big enough”, and they never got infected.
Sofie later told me that after they were so soundly dismissed by the ENT, she felt completely hopeless…with no end to their nightmare in sight.
It was in fact very difficult for her to talk about that dark period in their life. It wasn’t the wonderful first few years of motherhood she had always imagined and dreamed about.
No one warned her things could be this way.
No one could help her.
She was completely alone.
Sofie was so exhausted herself, she said 'I can’t even be a nice mummy anymore, not the one I wanted to be, nor the one Daniel deserves.’ She went home and cried.
But she did not give up.
That’s when Daniel saw someone different—a country dentist, for a routine checkup. This was not just any dentist, though! This was a ‘meeting by chance’ with a rural dentist who had some knowledge about breathing and airway health. I personally did not know the dentist but she knew of my work in Canberra where the family lived…and because we had both fallen down the same rabbit hole that beautiful day in Sydney…the day we saw Dr Guilleminault, and other luminaries.
When I met Daniel the first thing I did, as part of my standard intake process was sleep
questionnaires: one a symptom-based questionnaire the other a well-known validated sleep
questionnaire. Daniel was off the scale on both symptoms of concern and scores on the validated questionnaire!
After triaging these results I urged Sofie to see a paediatric sleep specialist or revisit ENT with scores of the sleep tests in hand, including videos with audio of Daniel’s breathing and photos that showed Daniel’s sleep position, body, head, neck and face during sleep.
Both Sofie and Bill were reluctant to see a Sleep specialist, though it was difficult for me to determine why…I suspect they were frightened to see yet another medical specialist.
They were open to re-consulting ENT with the new screening scores in hand, and they were open to a course of myofunctional therapy because they viewed it as ‘non invasive' treatment.
Once sleep screening results were seen by Daniel’s ENT, he viewed the case with a fresh lens. Daniel’s adenoids and tonsils were removed immediately.
And that’s when I got to work.
One of the things Dr. Guilleminault taught us is that it’s not enough to just take out the tonsils. It’s not enough just to take out the adenoids.
In short, Guilleminault taught the world why my job is so important!
Kids who continue mouth-breathing post adenotonsillectomy are much more likely to have unresolved difficulties, making them more likely to progress to adult Sleep Apnea and all the problems that brings.
Daniel’s parents could see that developing 'airway muscle fitness' - through resistance exercises and learning how to breathe, chew and swallow properly, would definitely not hurt…and could be fun! All these things go hand in hand with healthy airway function in growing children.
Proper function, in fact, helps the airway to develop…but that’s another long story!
I worked with Daniel for 6 months, and he was a star! In less than a year, Daniel was nose-breathing like a champ. In less than a year, Daniel had gone 2 years of 5-7 hours of Wrecked sleep every night… to sleeping through the night with no snoring.
All scores on the sleep questionnaires had normalized.
Daniel was a like a brand-new kid.
In less than a year, an unredeemable little “monster” was transformed into an angel.
I thought about my own unforgettable transformation. That night, as I eased into my restful bed, I found myself thanking the universe for delivering Daniel to our team before his Wrecked Sleep wrecked him.
Daniel is one of many in my clinic who have stories to be told. I believe every child has the right to get the sleep they need every single night to be healthy and happy. It is just a matter of finding the right people to help at the right time.
But having said that, there’s a lot parents can do on their own ….and that’s another long story…
My name is Sharon Moore, and this is my story of Empowerment.
23:52 Cue Majestic Theme Music
24:08 Welcome
Ellen: …and welcome back to Empowered Sleep Apnea…
Dave: …the PODCAST where you learn about the complexity of Sleep Apnea…through the power of stories from a patient-centered perspective…
Ellen: …Season Two…
Dave: …”Stories From the Field”…
Ellen: …we’re here with Dr. Dave McCarty…
Dave: …thank you…it’s nice to be here…and you are Dr. Ellen Stothard!
Ellen: I’m here! We’re here! Together again!
Dave: In “The Bunker.”
Ellen: In “The Bunker!” (laughs)
Dave: The Empowered Sleep Apnea BROADCAST BUNKER. It’s good to be back! It’s been a long hiatus!
Ellen: Yeah! There’s been a lot going on, lately.
Dave: I wanna talk about that story! What’re your thoughts?
24:39 Unraveling the Mystery of MFT and Epigenetics
Ellen: I have heard you and others talk about myofunctional therapy…a lot…I have heard this word…more and more lately….and…I actually didn’t know what it was…
Dave: Mmm hmmm
Ellen: …and so I really appreciate the definition that she gave…because…it makes total sense! It’s a P.T. for…it’s an ENT-P.T., if that makes sense…
Dave: Yeah! E-N-T-P-T. ENTPT!
Ellen: ENTPT! (laughs) That sounds confusing.
Dave: (laughs)
Ellen: …but yeah! It makes total sense why this would be a thing but somehow…just having heard it through lore…there is some sort of…it’s not a completely neutral word in our world…
Dave: No, it’s not. And I think it’s because there are a lot of unknowns about what it is. When you read what’s been published in Western medical literature, it’ll say “Well, there’s some data from some sources, but a lot of variability in technique”…and it leaves you with not a whole lot of practical understanding for where this fits in.
I thought the story was great because it’s stuff we don’t THINK about…
Ellen: Yeah, no, not at all!
Dave: When you swallow a swallow of Coke, like, most of the time you don’t think about it unless you choke on it…and then if it happens all the time, then you need a professional, you know?
Ellen: …Yeah! But you don’t even think about…it would have to be egregious for me to be like “I need to go somewhere…”
Dave: Right, right.
Ellen: But you DO think about a Speech Pathologist…I know multiple people who have experience with that, and I know multiple people who are professional Speech Language Pathologists—they are…I know that they are well-used—especially in elementary schools…so a lot of people I know are intersected there…when people are developing…when people are developing their ability to speak, that’s important.
Dave: …what I think is coming to light is that there’s been this crossover between Speech Language Pathology and the Dental world…where the muscles become more important.
Because it works both ways. The way the muscles work can influence how the face develops.
Ellen: So… is that the-kinda-premise behind people saying that our facial structures are developing differently now?
Dave: That’s part of it, yes. It has to do with the way the tongue is moving and working its way against the top of the mouth. It has to do with the way we’re chewing…or not actively chewing our food from a young age. It has to do with nose breathing vs mouth breathing. The open-mouthed breathing posture during development is really kind of a bad actor. It tends to lead to this smaller lower jaw, that’s recessed…the thinner facies with a narrower nasal passage…
…in all of that…the function of the muscles is part of that developmental pathway.
That concept is called “Epigenetics”…it’s a hot topic these days in some circles, and I think it’s something we need to be paying attention to, for sure.
Ellen: So there’s a genetic component, but there’s also a “NURTURE” component to this, too.
Dave: Right, right! Think of it as “binding feet.” You know? The practice of “binding feet” to keep them small? Obviously, you could see how this would keep the foot smaller by limiting where it would grow.
Well, the same concept applies to people who, say, have an improper swallow. So, if they swallow with mainly the muscles of their mouth…
(demonstrates…Ellen laughs)
…you know, really pull back in a pucker…to be able to swallow right…that is an abnormal swallowing pattern…and that constant--thousands of times a day-- pressure against the front of the face…can lead to…it can influence the development of the face.
Ellen: …so I have to put this in the context of running. If you have poor running form…if you use just your quads, if you don’t use enough of the supporting muscles—you don’t use your glutes, you don’t use your core muscles to run with, you’re actually gonna cause stress fractures
Dave: Right? What would that gait look like? It would be kind of lopsided…
Ellen: Super-weird! But you don’t even think about it, necessarily, unless you are aware that those muscles should be…sometimes you have to go to P.T. to pay attention to those muscles and use them correctly.
Dave: Yeah! Learn what is “normal” supposed to look like?
Ellen: Mmm Hmmm.
Dave: “I’ve been doing it this way my whole life.”
Ellen: Hmm. Very interesting.
28:48 The Heartbreak of Being Left Behind
Dave: There were parts of this story that…you know, the first time I listened to it, after I produced it, and listened to it in its entirety…it kinda brought me to tears.
Ellen: Yeah.
Dave: You know? It was a moving story! It was two tales of seemingly being Left Behind by a medical system that couldn’t classify you correctly…
Ellen: Yeah. That’s terrible. It’s just so hard to hear.
Dave: You know…it keeps coming…(pause)…I think the part of this that’s hardest for me to explore is that…I don’t think that’s anybody’s fault…you know? The label-based system is what is causing this. Once you get put into a label, it’s very difficult for people on the provider’s side to create a more expansive sense of where they should be going with the problem-solving…
…the label creates the pathway, in other words…
Ellen: Yeah! The label…it’s almost like a starting point, for everyone…and…you don’t re-assess the label…there’s not a practice of re-assessing the label every single time, to bring it back around…
Dave: …yes!
Ellen: …and make sure that that label is still the most accurate one that we can associate with what’s going on.
Dave: Right! It’s a matter of working within a complex arena…not merely a…”Well, we’ve got this linear relationship between this disease and your problem, and let’s just go for it!”
…you know…that’s sometimes the case, right?
Ellen: MmmHmm.
Dave: You mentioned in one of our earlier episodes that if you break your arm or you break your leg, that’s a very linear pathway…with a very label-based approach…that sounds appropriate to me.
Ellen: Yeah.
Dave: But in a situation where it’s “Darth Vader breathing” at night. So, we go from that, to the label of “asthma”…and it seems like the thinking just kinda gets turned off…
Ellen: MmmHmmm. Yeah, and it’s strange…it’s really strange to me that there was never…night time breathing was the symptom, but it didn’t sound like there were any Sleep people consulted, in either of these cases, for whatever reason…
Dave: Interesting, eh?…
Ellen: …and like we’ve said before, everybody had their specific hat on, right? So: the dentist is gonna see an engineering problem…the ENT is gonna see it differently…and everybody has their own toolbelt, which is slightly different…who knows what would’ve happened if the Sleep person could have had a piece of the pie?...
Dave: Well, certainly, when you put it into that silo, things can look different and the subtlety can be seen…
…I believe that the problem can happen that sometimes people like this can be turned away from Sleep clinics.
…and this is what I’ve learned in my exploration of different silos within this industry…is that there are rife stories of milder flavors of Sleep Apnea –Sleep Apnea that doesn’t cause desaturations of oxygen, but only causes arousals from sleep and physiologic arousal.
Those folks often feel abandoned by their Sleep doctor because their AHI is “nondiagnostic” and the story is: “Well, you don’t have Sleep Apnea!” …and…the thinking kinda STOPS!
You know? Once again: the label leads the discovery process, rather than the patient’s symptoms.
32:20 What Do Ya’ Do With A Label-Based System?
Ellen: Yeah….(pauses)…I guess the question that I have is “what do we do about it?”…like…how do we fix it?
Dave: Yeah. I think that the answer is that we need to spread a more widespread understanding of the complexity of this Leviathan. I think she said it great: “Sleep Apnea has a thousand faces!” And the one that we were all trained on in Western Medical was the Pickwickian face. The heavy person who slept poorly and snored, and was sleepy in the daytime.
That’s where Sleep Apnea began its life, back in 1966, when the first report was published. But we’ve come a long way since then.
We now know that Sleep Apnea has manifested in various ways…including, you know…in skinny people who aren’t sleepy!
Ellen: MmmHmmm.
Dave: So what do we do with that complexity?
Ellen: Yeah. And how do we get everyone outside to recognize that that IS a SLEEP issue? Because, that was the biggest thing to me with the young boy…he was categorized as a MONSTER! They didn’t say anything about his sleep, necessarily.
Dave: Right? He was just called a behavioral problem!
Ellen: Yes!
Dave: Bless his heart!
Ellen: Yes! And it’s because he didn’t know how to regulate…he was so tired, he didn’t know how to regulate himself! So it was just popping out of all ends, basically!
Dave: MmmHmm. MmmHm.
Ellen: …and how do you make the connection, as a tired parent, as well, that Sleep is what we should actually be going after?
Dave: Yeah, this is an awareness campaign of the atypical presentations, I think.
Ellen: MmmHmm.
Dave: You know, I think we’ve been really good advertising that Sleep Apnea is “snoring, and disrupted sleep, and daytime sleepiness, and hypertension…”
…that is ONE aspect of this leviathan.
There are different flavors of Sleep Apnea and they present differently…you know?
Ellen: MmmHm.
Dave: So I think telling these stories out loud, and having people hear other people’s experiences…I think that’s the way to do it!
Ellen: Yeah. And another thing that really resonated for me was getting a Speech Language Pathologist in the room with a luminary of Sleep Medicine…
Dave: Isn’t…yeah, right?...Cross-pollination, right?
Ellen: How did THAT happen, right?
Dave: This is the effect of being a talented communicator. So, Dr. Guilleminault is a legend in our field…he actually did coin the phrase “Obstructive Sleep Apnea Syndrome”…and he was passionate about chasing this to wherever it would go…
…and some of the final things he published and spoke about before he passed…was this relationship between function and structure and development in pediatric sleep apnea.
These are important issues, and I’m really glad she was able to tell the story about how he affected her—that was her moment!
Ellen: MmmHmm.
Dave: That was when she thought to herself “Oh my God! My Sleep stuff was more complicated than I thought!”
And you know, in the retrospectoscope, looking back on her story…
I suspect that what was happening is that she was subjected to a lot of allegens and irritants in her environment…she experienced chronic mouth-breathing at the time, and was breathing through her mouth during sleep…
…and nowadays, we can say that the open-mouth breathing position is much more like to provoke obstructive sleep apnea type of problems.
So, in the retrospectoscope, she probably did have a flavor of Sleep Apnea back then.
And it probably did go away when she stopped breathing through her mouth at night. You know, but sadly, she was left on her own to figure that out.
Ellen: Yeah. It’s amazing…that it seems like she just did it, and she just felt better, and kind of moved on with her life, and then it still came around to find her…
Dave: Yeah. It found her when she heard Dr. Guilleminault talk.
Ellen: Yeah.
Dave: …and then she started to think about this…I think of it as an artist’s mind…you know? Once you’ve mastered that delicate architecture of those muscles…and you know how they all work and you can see how one dysfunction can lead to another compensation…you can see that…visually…three-dimensionally in your mind…and then you say…you’ve got this kid who’s got all these problems…and you look in their mouth and you see what they’re doing wrong, and you…I mean…you can’t STOP thinking about what to do about this…
Ellen: Well it’s so interesting, we wouldn’t…in any other surgery…if you…
…I got ACL surgery a couple years ago. In ACL surgery, they did not just say “OK go and figure out how to walk again.”
They intensively multiple times a week were helping me with every little muscle, retraining the muscle and the communication, to make sure it was working perfectly and all in concert again.
Dave: I guess the reason is because if you’re favoring it and walking on it wrong, you’ll just re-injure it, right?
Ellen: One of the things that they said…it was…so this actually happened right when the Pandemic started…and so everyone who had just had surgery was identified as an important case because if you don’t get the appropriate stuff, you WILL not walk! So your…your muscles will seize up…or other things…obviously I’m not a Biomechanics expert, I’m not a P.T., but my understanding was basically that with my meniscus surgery I could possibly be impaired for the rest of my life if I didn’t work on it this way…
Dave: That’s terrifying!
Ellen: It’s very terrifying! But that’s common knowledge now! Normal procedure. Why do we expect that we can do surgery on this very important area of people’s daily function—breathing--
Dave: …arguably very important!
Ellen: --yes! …and just think it’s gonna heal itself and it’s gonna be fine.
Dave: Yeah. Well it brings to mind that the function and the structure within that function is kinda what got us there. Breathing through the mouth can lead to enlarged tonsils. We kinda know this.
If that functionality of breathing is not addressed, if the functionality of where the tongue goes and what happens during swallowing isn’t addressed, then these kids may be doomed to a similar fate—you can’t walk? Well, they’re gonna grow up and their faces are gonna develop differently, and they’re gonna have adult Sleep Apnea, of a different phenotype than the one we’re used to talking about.
Ellen: …and they had no idea that this is something that could’ve been intervened upon, much earlier. That this is actually something that they’ve developed through their behavior.
Dave: I think that’s the part about this journey that makes me most excited to talk like this. Because it keeps coming up: “People had no idea this was so complex!”
This is why we need to talk about the complexity of it! So we can broaden the landscape for everyone involved, and we can see where this can go in many different ways…deconstruct it, in a way…
38:52 “Spectrum” Diagnoses, Many Moving Parts, and Collaboration (Oh MY!)
Ellen: So: this is perhaps unrelated, but…something that I’ve been noticing in a lot of the information that I’ve been reading lately is we’re moving to these “spectrum” diagnoses…we have the first example of the Autism Spectrum Disorder where everybody’s kinda somewhere on this spectrum when they have diagnosis, but it’s not one phenotype.
Dave: Yes.
Ellen: Do you believe that most of our…it seems to me that kind of what you’re saying is that Sleep Apnea should be treated similarly…we have some sort of spectrum, perhaps, that we need to diagnose people on…
Dave: I think this comes back to the Many Moving Parts discussion of Sleep Apnea. You know, the discussion…the terminology that’s being thrown around in the business is “precision sleep medicine.” And lots of people are talking about it. People are starting to learn that, hey, it’s not all about being heavy and snoring…and it’s not all about cardiovascular risk either…
…there’s FIVE REASONS TO TREAT …and we should be talking about all of that.
So for every individual patient that has this label affixed to them…you know what really needs to happen is the COFFEE HUT discussion! (laughs)
Ellen: Yeah!
Dave: …’cuz we need to talk about the complexity in a way that you can understand so that you can participate in the problem-solving.
Ellen: Yeah! And it’s really fascinating that you can see that thread come through in all of these conversations…it brings it back to what we’ve been saying this whole time…that people just need to know, they need to be EMPOWERED to have this multi-layered discussion…people should be participatory in their own healthcare…
Dave: It can’t be any other way!
Ellen: Yeah.
Dave: You know, what needs to happen is that every player on the field needs to understand how the game works. And that way, when the chickens start to fly, everybody kinda knows what’s happening, and, honestly, the most important player on our field is our patient!
And if they don’t understand how the game is played, they can’t report back to us from the field and tell us what’s going on and help us solve their problems.
Ellen: Oh yeah, absolutely. And with the cost of healthcare, and the length of, you know…it’s every night sleep for the rest of your life, basically…if they’re not aware of what they’re going after—what the objective is, and how they’re going to get there—how are they supposed to do it?...when they get out of the office?...
41:46 Tragedy, Part II: “They Must Think I’m Simple”
Dave: Much of the indignance and the sense of being “Left Behind” that I’ve picked up on from folks that have felt “left behind” by a label-based system…it mostly stems back to somehow feeling duped.
Like…it broke my heart when Sharon said “he must’ve thought I was simple”…this woman is so intelligent, and so talented, and to leave the doctor’s office with a perfectly well-meaning educational effort, feeling like “God, they must think I’m simple…”…
That’s not our goal, you know? I dunno…there’s something about that, that sense of being Left Behind, that indignance…they just wanna understand…
Ellen: Yeah.
Dave: You know, the label-based system was I think responsible for her Asthma misadventure.
Ellen: Oh yeah.
Dave: The concept is that asthma…what is asthma? We can go down that pathway and say “Well, it’s reactivity of the airways and it’s inflammation…” but one other question can be “where is that coming from?” And a simple lightweight answer might be that it’s genetic or something like that.
But, in her case, whatever reactive airways she might have had may have been related to the fact that she was breathing through her mouth at night, which draws stomach contents up into the thoracic cavity, and can be an irritant.
So it could very well have been that because she was nasally congested, she was flushing her pulmonary system with toxins at night because of the Sleep Apnea.
Ellen: Oh, yeah.
Dave: …so these things can all go together and I think the label-based system leads us to that “Search Satisficing” error that we learned about for the Five Finger Approach…which is that people get the label…and because they’re time-crunched, they go in with the label and they leave with the label…and the patient is Left Behind…
43:14 Systems Based Medicine and Integrative Complexity
Ellen: Yeah. There’s a conversation I’ve been hearing a lot lately about systems-based medicine…and about how we need to be less specialized, and we need to be more broad in our knowledge and our conversations so that we can spend less time doing that “cornering.”
Dave: Was the term “Patient Centered Medicine” anywhere in there? Cuz that’s what that sounds like to me?
Ellen: Interestingly enough, no they didn’t! It was really more the idea of “we need to think about how all the systems interact”…so when we go into one “corner” it’s like: OK. What else touches this? And then let’s trace it. So like you said, if we’re working on the airway, and we’re thinking about overnight…what happens with the stomach? What happens with the nose? What happens with the brain? What happens with…you know…like everything that’s touching that area…how is it impacted by the symptom we’re…
Dave: …how does it fit together?...
Ellen: Yeah!
Dave: So, once again, we get back to complexity, right?
Ellen: Yeah.
Dave: …a complex system…and what we’re talking about is a knowledge of how all that complexity works together…I think that’s called wisdom, isn’t it?
Ellen: Yeah, and it’s…all of this seems really simple, right?
Dave: Well, when ya put it on the table…it’s like: well, duh!
Ellen: (laughing) Yeah! Like you said, through your retrospective goggles, you can kinda see how this is pretty straightforward, but, somehow, this happens…so often, every single day…
Dave: Yeah…
Ellen: …everybody has a story like this…and it’s…yeah!, like you said…it’s heartbreaking…
44:45 CARTOON SHOWCASE!
Announcer: We haven’t forgotten that the cartoons are what the people like! We want to make it clear that we remain dedicated to bringing you zany and relevant cartoons as often as it appears necessary. And now…this episode’s CARTOON!
To view this cartoon, click HERE :)
Dave: I have a cartoon…we were talking earlier that some of the cartoons I draw, they’re almost like therapy, I’m trying to figure out what I’m trying to say…and I learn from them after the fact, I’m like “Wow! Ok…”
This one, the image came to mind after I heard Sharon’s story…I’m just gonna give it to you, and give you a moment to look at it, and then…comment.
Ellen: I’m really excited, by the way, because I haven’t seen a new cartoon in quite some time…this is awesome…
…so what I see (laughs)…what I see is: “The Science of Trapping Mice”…there’s a professor up here on a stage with some beautiful…it looks like Moulin Rouge lights…like around the edge of the stage…
Dave: (laughs)
Ellen: …and he’s explaining a figure…I’m assuming it’s a he, cuz he’s wearing a tie…and, it says “The Science of Trapping Mice” and there is “Figure 1” with points (a) (b) and (c), which are the cheese, the trigger, and the…mousetrap part that that moves…
And there’s some cats in the front row going: “Psst! I really feel like they should’ve talked to us!”
And…there’s different ways to skin a cat is the phrase that comes to mind…!
Dave: …yeah! Turn it over and you can see what I decided to call it…
Ellen: “CAT Scan!”
Dave: So, CAT Scan! So how must it feel to be a specialist in something in an area…and to have somebody lecture on and on in something pertinent to you, and you go “Oh, my God, why didn’t they just ask?”
Ellen: Yup. “I knew the answer to this, we could have done this together…”
Dave: Yep.
46:55 Silos, Reductionist Thinking, and the Challenge of a Complex World
Ellen: I’m always in these talks with sleep researchers, and…the sleep researchers don’t know anything about clinical…not like “they don’t know anything” but they’ve never touched a patient.
Dave: Right? They’ve never had “boots on the ground” in that trench…
Ellen: Exactly! And so…they have great ideas and they work really hard and they wanna fix all these things, but…I’m always left with like: “How are we gonna do this?”
Dave: MmmHm.
Ellen: You know? Like: “Did you think about this other thing, that’s gonna cause all these problems?” And they’re like: “No it’s…”
…it’s this reductionist thinking, the idea being that we can only focus on so much. We need to eliminate the cross-contamination so that we can get, you know, the Truth…
Dave: That’s a tool of science! And I will say (for the record) that I know it’s a useful tool! The question is, though, when it comes to making decisions for individual patients…how do we use that reductionist data to our patients’ advantage? And how can we learn from it in ways that we might produce other tests that are a little more patient-centered?
Ellen: Yeah. And I do not have an answer…but I’m very very interested…I hear this exact conversation continue to come up…and I’m very very excited for the possibilities of it…
Dave: Me too! I think there’s a way.
Ellen: Yeah.
Dave: I think there’s a way…every question can be broken down to a scientific project. This is not at all a diatribe against science…I love science…I believe that we are on an edge where we have new things to explore and we need to use our scientific principles appropriately.
Ellen: Yeah! And an interesting idea is that we’ve always “done” science “one way” or a small number of ways…and with the increasing complexity of the issues…
…[something] somebody said today, actually, was…”there’s nothing left to discover”. He was lecturing some students, and he was like “the students always tell me ‘there’s nothing left to discover’, ‘you guys have already done it’…’you’ve done everything’…”
The fact is: yeah! Maybe we have discovered the vast majority of…you know…the cells…the small things…but…we HAVEN’T done work on the systems…by any means.
Dave: Yes.
Ellen: And all of this increasing complexity is just meaning that we are going to need to develop new tools and explore new frontiers of complexity…
Dave: Yes. Yes.
Ellen: …and it’s gonna be so cool!
49:16 Cue Majestic Theme Music and Closing Credits
Empowered Sleep Apnea is a production of Empowered Sleep Apnea, LLC.
The opening sequence of today’s program was written and performed by Sharon Moore, and produced by Dave McCarty. Please be sure to check out Sharon Moore’s book, Sleep Wrecked Kids, wherever good books are sold, or check her out on the interwebs at www.SleepWreckedKids.com or www.WellSpoken.com.au .
The program was otherwise written and performed by David E McCarty, MD, FAASM and Ellen Stothard PhD. Cartoon today was dropped off by autonomous dirigible. Music was created and arranged by 25% Fred.
If you enjoyed this podcast, I encourage you to leave a positive review on the podcast platform of your choice. Your remarks will help other seekers find us.
Don’t forget to check out our website www.EmpoweredSleepApnea.com, where you can find links to all the episodes of our podcast, which of course has links to full transcripts of all the episodes, links to the cartoons in spectacular resolution, and a link to download your own circadian rhythm wheel. I mean. How RAD is that? Plus, there are also links to my blog of cartoons and Essays Dave’s Notes, and links to BookBaby, our publisher, where you can purchase our Beautiful Blue Book, now available in Hardback, and convenient e-Book edition.
Coming up next…your sleep medicine DAD JOKE.
51:33 Sleep Medicine DAD JOKE
Dad: I was up sleep walking last night.
Not Dad: Oh, is that so, Daddy-O?
Dad: Yep. All night I was wandering around, wondering where the sun went. Then: It dawned on me!
Not Dad: It dawned on you! That’s a good one, Daddy-O!
51:59 End Transmission
