Episode 1: NARRATIVE

Empowered Sleep Apnea: THE PODCAST
Episode 1: NARRATIVE
All content © 2022 Empowered Sleep Apnea, LLC
www.EmpoweredSleepApnea.com

For a complete PDF transcript of this episode, including in-line cartoons (So RAD!) click HERE.

In this FIRST episode of EMPOWERED SLEEP APNEA, your hosts Dr. Dave McCarty &  Dr. Ellen Stothard will converse their way through the story of  Robert, who just turned 50, and isn't sure he signed up for all this!

Robert has Sleep Apnea--but what does that mean?  Why did he even need a sleep study in the first place? Where the heck are the brakes, and why does it feel like everybody just wants to sell him something?

In this episode we'll learn about the foundational importance of understanding one's own NARRATIVE, so that one can prepare for one's discussion about the FIVE REASONS TO TREAT, a key step in establishing a sense of personal agency within this diagnosis.  Ellen introduces listeners to the EPWORTH SLEEPINESS SCALE as a measure of daytime sleepiness.

Dave and Ellen discuss the concept of psychological priming as an important component affecting the quality of the relationship between patient and provider.

Remarks on the drug company Avanir, and the class action lawsuit over the drug Neudextra can be referenced here.

Cartoons featured in this episode are shown on our website's PODCAST page--
The ISLE OF SLEEP APNEA (Your Luxurious Destination!)
New Diagnosis
Priming Matters

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!

Transcript

Empowered Sleep Apnea: THE PODCAST
Episode 1: NARRATIVE
All content © 2022 Empowered Sleep Apnea, LLC
www.EmpoweredSleepApnea.com

For a PDF of this transcript, including CARTOONS (Whaaaaa?!) click HERE!

00:00: Empowered Sleep Apnea BOOK promotion

Empowered Sleep Apnea: The Book is now available, in both the hardback, which is just beautiful and really showcases the art nicely, but also in e-Book form, for Apple iBook and Kindle. Are you tired of guessing? Try on some Empowerment for yourself. We’ve got just your size. Want more information? Good! Go to www.EmpoweredSleepApnea.com and click the tab that says BOOK.

…and hey!...many thanks!

00:30: Preliminary Comments

Empowered Sleep Apnea is an educational podcast, so it’s a bit different from a medical advice show. Decisions about treatment strategies can be complex. Even EMPOWERED patients need a partner. So play it smart: communicate with your personal healthcare provider before making ANY changes to your medical treatment plan.

And now…ON WITH THE SHOW.

Empowered Sleep Apnea Episode 1: NARRATIVE.

1:07: Robert’s Story

Robert was convinced by this point that the doctors were all in it together. And he didn’t like it. Not one Big-Pharma-distrusting, Gold-Bricking bit! 

It had all started almost two months ago. He had been fine before that. No medication. No doctors’ bills. No nothing. 

He remembers the date, because it coincided with his 50th birthday. He finally acquiesced to his wife’s—we won’t call them demands—advice then!—to get a much-needed overdue primary care physical.

Whether it was overdue or not depends on whom you asked. If you asked Robert, he would be quick to point out that he felt fine. And paying for doctor’s visits when you felt fine was just putting more gold brick in the doctor’s poolhouse latrine. 

Well-patient visits were for suckers and sheep.

It was at the primary care doctor’s office that the irregular heart beat was discovered. Then: with alarming efficiency, he was scuttled off to the cardiologist, where he had an EKG, and Echocardiogram, a 24-hour holter monitor, a nuclear stress test, a visit with a PA, and FINALLY, a visit with a cardiologist. 

He didn’t even want to think about what this was going to cost him. This year, with both kids in college. As Robert sat in his doctor’s waiting room, he tried to remember how high his deductable was.

He had a sinking feeling it went up this year. To seventy-five hundred dollars.

Robert’s cardiologist diagnosed him with Atrial Fibrillation, and subsequently succeeded in scaring the scampi out of him, telling him that if he didn’t take his quote medication (a blood thinner he later found out was essentially rat poison) he would have a stroke.

And then: out of nowhere! A checkout nurse sends him home with a thing to wear on his finger, to measure his oxygen levels at night. Oxygen? What a scam! He never complained of shortness of breath, and he sleeps fine at night, as far as he is concerned. 

One week later, Robert received a bill for the overnight oximetry test, on the same day that his cardiologist’s office called him, telling him that his overnight oximetry test was abnormal. 

Telling him that he needs to see a sleep specialist.

“Can you believe this, Shiela?” he demanded, slamming the piece of paper onto the counter. Forty-five dollars for something I didn’t even need. And now they want me to go and see another blasted doctor?! And everybody’s got their hand out.”

At the Sleep Clinic, a young smiling receptionist handed Robert the intake questionnaire, a thick packet of paper full of yes/no questions that looked like it would take about an hour to fill out.

Robert harrumphed into his seat with his clipboard, fuming. He glared at the first item on the questionnaire, right below a space designating where he was supposed to write his name.

What was this…first grade?

“Why are you here today?” the question read, all smiles and honey. It seemed to smirk at him, that question.

Robert could feel the rage building inside.

Why am I here? Why the bloody hell am I here?

He could feel his hands shaking as he jabbed his pen into the paper to provide his answer, written in an explosive ALL CAPS SHOUT:

SO YOU BASTARDS CAN SELL ME ONE OF THOSE DAMNED MACHINES!

4:04: Opening Theme and Welcome

Empowered Sleep Apnea Theme Song

DAVE: Hello, and welcome to Empowered Sleep Apnea. We are your hosts! I’m Dr. David McCarty…

ELLEN: …and I am Dr. Ellen Stothard

DAVE: We come from different backgrounds. I’m a medical doctor, specialized in the clinical management of sleep disorders.

ELLEN: And I earned my PhD studying Sleep Physiology and Neuroscience.

DAVE: What he have in common, though, is that we’re both Sleep Geeks!

ELLEN: Both of us are fascinated by the neuroscience of Sleep, and the complexity of sleep disorders.

DAVE: …and once you get us talking about Sleep, it can be hard to get us to stop!

ELLEN: …and that’s what this show is about. Each week we’ll explore this complex and sometimes frustrating disease, by talking our way through complex stories, all based on real clinical events. As you might have guessed, names and identifying situations are changed, to protect privacy.

DAVE: …and we’d be remiss if we failed to mention the cartoons. Each week, I’ll introduce one or more new cartoons (today we’re gonna get three!) and you can take a look at them on our website if you want at EmpoweredSleepApnea.com 

ELLEN: …and with that: Welcome to the First Podcast. Episode 1: NARRATIVE.

DAVE: Welcome…to Empowered Sleep Apnea!

5:22: Dave and Ellen discuss Robert’s story as the foundation for the development of the FIVE REASONS TO TREAT paradigm

DAVE: Wow…what a story!

ELLEN: I just can’t believe…so is…is Robert a real person?

DAVE: The story of Robert is absolutely real. The way it transpired in real life was a little bit different than the way I portrayed it in this narrative, but the main component of the story that’s important here was the level…magnitude of Robert’s hostility. That is a frightening thing to witness and it actually changed my behavior as a physician. I found this story to be a really important part of the discussion of the Empowered Sleep Apnea method because this story cemented in my clinical practice the discussion of the FIVE REASONS TO TREAT.

ELLEN: So, the story is, is genuine. The feelings were genuine, the experiences were genuine; these are people that you’ve seen in your clinic, and they’ve affected the way that you treat, and the way that you see your role as a provider, right?

6:22: The Vulcan Mind Meld, Patient-Centered Medicine and Diagnosis-Based Medicine

DAVE: I think that’s accurate. I’ve always felt my role as a patient-centered physician has been trying to zero in on suffering. And suffering is a difficult thing to define, because it means different things to different people. 

The ideal patient-centered encounter would be sort of like a Vulcan mind-meld. You know? Have you ever seen that, on the original [Star Trek] series, when Leonard Nimoy comes up…he’s got those long delicate fingers, and he puts them across the face…and he says something like let our minds be one. And it’s this very sort of intimate thing, but he can read your mind! And he can get inside your head and know what you’re feeling. 

So if that’s the ultimate goal of patient-centered medicine, you know I can’t do that, but I can certainly stop what I’m doing and try and listen…and start to hear what it feels like to have the suffering that people are suffering.

As for Robert, his sensation was that he was being led down this pipeline and no one was talking to him. And so what we need to do is we need to help Robert understand how we got here, and that’s why we have to talk about NARRATIVE.

ELLEN: I think that’s a very powerful thing to describe, though. 

When you go through medical school, when you have this kind of training, you’re given tools… you’re-you’re asked to memorize a bunch a different disorders, so you’re almost trying to answer a jeopardy question when they come into the room, right? They’re giving you this list of symptoms, and you’re kind of…mentally scanning through your Rolodex, and going hmmm…

DAVE: …I wonder what that is, and I wonder what label I can put on that? Diagnosis-based medicine is the result of that…

ELLEN: …exactly…

DAVE: …is that you end up with a label, and then the ultimate responsibility is sort of…is the care and feeding of that label, somehow.

8:00 Dave and Ellen dissect Robert’s Hostility      

DAVE: Does this scenario, as a non-clinician, did the hostility volume in this case surprise you?

ELLEN: You know, that’s an interesting question, because for me, I can never see myself being that mad at a doctor. But I’ve never experienced…well, maybe I should take that back. I have experienced some degree of financial challenge from medical before. You know? I’m an athlete, so I’ve had some athletic injuries. And I have experienced that sitting there in the doctor’s office: what is my deductible at this point? 

So I can absolutely identify with that. And I can definitely understand, as a grad student, someone who doesn’t have a ton of money to just go to the doctor, making that choice.

And there are people out there who make that choice every day, where they can’t take their medication or they don’t go to the doctor. 

DAVE: I think we would be dishonest if we did not recognize that financial stresses created the tinderbox of Robert’s story. He was feeling financially stressed. He was feeling as though was was being Gold-Bricked. He felt like he was being led down this path, with these diagnoses as weapons almost.

At the time I thought that was kind of…you know…man he must be one of these tin-foil hat conspiracy theorist people…but I think there is an undercurrent of that…any, any time there is money to be made in a medical transaction, one must ask!

In preparing for this show, I was actually looking at another drug. You remember this story? We were talking about it earlier?

9:27: Dave describes the class action suit against AVANIR as an example of medical behavior that sows public distrust and creates a narrative of suspicion.

ELLEN: Oh, yeah.

DAVE: It’s a, it’s a narrative that involves a drug called Neudextra.

ELLEN: Mm-hm.

DAVE: …the drug company was called Avanir. The reason I thought of this drug was because I was trying to get our minds around the idea that Sleep Apnea hasn’t been with us forever. There is a narrative to how we understand this disease exists. And that narrative for most people starts somewhere around 1980. 

But suddenly now, though, everybody knows what Sleep Apnea is, right? And so, you go to the doctor, and you say: “Well, you know I feel a little tired,” and they send you for a sleep study. There’s been this awareness campaign that’s been very successful. And I was thinking about a drug that I didn’t know anything about the condition, and it was marketed to the Residents, when I was in the Academic position at Louisiana State.

And, it’s to treat a condition called Pseudobulbar Affect.

ELLEN: That’s a big word.

DAVE: Yeah. It’s a mouthful.

ELLEN: Can we go over that a little bit?

DAVE: Yeah, Pseudobulbar affect is kind of like not having brakes on your emotions. 

ELLEN: OK.

DAVE: OK? People with this problem, they tend to sort of have crying jags and giggling spells, and obviously if you’re doing that in the middle of a job interview, like, that’s not going to go well. 

ELLEN: So this is a serious condition. You can’t just…

DAVE:  For the people who have it, it can be life-altering and it can ruin your life, so it’s a big deal, and they found out that this combination drug worked, but then, this is where things sort of went off the rails.

The drug company Avanir it turns out later was investigated by CNN, and they were marketing this drug heavily toward nursing homes, and in some nursing homes, over 50% of the residents were on this drug. And the problem is this drug increases the risk of injurious falls in elders, and wasn’t indicated for people who are senior citizens and at fall risk. 

So, there was a hundred million dollar lawsuit, was the upshot, and all of this was happening at roughly the same time that I was meeting Robert. 

You know, I think if you’ve got your ear to the ground and you’re wondering about the veracity of the medical sciences and whether they’re looking out for you…and people aren’t talking to you…I think you start to draw your own conclusions.

ELLEN: Absolutely. I think it’s clear that people don’t feel that the medical system is on their side.

DAVE: Yeah.

11:53: Sleep-wake Complaints 

ELLEN: Part of my other life is spending time outside talking to people and educating the community on sleep.

DAVE: Yeah.

ELLEN: And, one of the things that I hear all the time is “I haven’t slept well in years…”

DAVE: Yup.

ELLEN: You know: “My wife has told me…oh FOR SO MANY YEARS…” and, and they just don’t have that impetus to go and take care of it.

DAVE: Let me share a little secret with you that I’ve learned from my over 20 years of clinical practice: going to the doctor…it sort of SUCKS!

ELLEN: (Laughs) Absolutely

DAVE: Like, you know…it’s a, it’s a vulnerable situation to be in.

ELLEN: …they’re a real person that’s coming into your office…

DAVE: …yup…

ELLEN: …and they need to share these things…especially in sleep…the things they don’t do with their conscious mind, right?

DAVE: …it’s absolutely true. And it turns out that for the person who inspired Robert…the salve to all of this hostility was NOT finger-wagging and lecturing. The salve to this hostility was one question.  Ready?

ELLEN: Yeah, I’m ready for it.

DAVE:  Drum roll, please!

ELLEN: (D-d-d-d-d-d-T!) (drumroll sound effect!)

DAVE: “Sir, are you satisfied with your sleep?”       

(Angel Choir Sound Effect)

DAVE: Yes, no, it’s binary. “Are you satisfied with your sleep?” And then you LISTEN.   

[Angel choir sound effect]

DAVE: Robert, or the person who inspired Robert anyway was like: “I’m fine with it!” And I’m like: “Ok, so that means you get to sleep easily and you sleep through the night?” And we start to explore it…and this is where we’ll use the verbiage sleep-wake COMPLAINTS…and I want to use that word carefully, right?

ELLEN: Yeah!

DAVE: When you say someone has complaints, you know, what do they think?

ELLEN: They think you’re a COMPLAINER, that it’s got a negative connotation!

DAVE: Yeah! Right! Right! You’re a pain in my neck, because you’re complaining!

ELLEN: Yeah!

DAVE: A sleep-wake COMPLAINT in this context is going to be the thing that you perceive that’s not…quite…right.

ELLEN: Hm.

DAVE: …it’s different…ok? It’s different from normal. It may not bug you that much, and we can talk about that…but what’s the stuff that’s not quite right?

So, when I walked Robert through this…first: Are you satisfied with your sleep? He kind of gave me a jag-answer at first. I said: “OK, so that means you go to sleep easily, you sleep through the night, and you wake up feeling good, and you’re not tired in the daytime?” 

And he’s like: “Well, no!”

[cartoon string breaking sound effect]

DAVE and ELLEN: Both crack up laughing

DAVE: He’s like: “That’s not it at all!”

DAVE and ELLEN laugh some more

ELLEN: Wait a second, you don’t have any complaints, but it turns out that he DOES have some complaints!

DAVE: Right! So, again, loaded word, right?

DAVE: It turns out that when we went through this technique—Are You Satisfied—he really wasn’t satisfied.

ELLEN: Hm

DAVE: …and the reasons he wasn’t satisfied was because he woke up every…two hours?...to urinate...

ELLEN: Hmm

DAVE: …he perceived that his sleep was very light-stage, because of this frequent urination…and he really couldn’t sit still in the daytime. He fell asleep a lot…he countered that by just not ever sitting still…

DAVE: …and he was always kind of up and pacing…he had countermeasures. And he had learned that this was just his life.

ELLEN: So this is really interesting, because when YOU describe Robert, and you describe his sleep-wake complaints, you didn’t talk about his Sleep more than you talked about his Wake, so there is, it’s not primarily sleep complaints…he seems like he doesn’t even register…you know if you asked him sleep issues, he would say “No” but then when you talk about other behavioral Wake-kind-of clues, you have to put on your detective hat, and see what else kind of is connected there.

15:38: The Epworth Sleepiness Scale

DAVE: Uh, you’re exactly right. I liken the job of Sleep Medicine to being a detective. Because you DO have to look for clues. As it turn out, Robert’s sleep-wake complaints were significant and they were functionally limiting. There’s a scale, called the Epworth Sleepiness Scale…why don’t you tell, tell the listeners what that is…

ELLEN: Essentially we just ask you about a variety of behaviors, and we ask you about your likelihood to fall asleep if you were sitting still, and relaxed in these situations. So: sitting on the couch watching TV…driving your car…in the middle of a conversation…all that sort of stuff.

DAVE: And we’ll provide Show Notes for this so you can get a link to this if you want, but the bottom line is it’s a standardized scale, and it’s a numeric scale, and the higher the number is on it, when you total ‘em up, the more likely you are to doze off. 

ELLEN: Mmm hm!

DAVE: Right? So the more functionally sleepy you are, behaviorally. And his Epworth score was something on the order of…fourteen?

ELLEN: Well, that’s quite high!

DAVE: Yeah, it was high! And, and, you know…he didn’t recognize it as a problem until we started talking about it, and his wife said: “You know, you never, you never make it through the movie!” And he’s like: “Well, that’s because….” And he had, you know, a reason for it…I’m saying these complaints can become very normalized for people.

ELLEN: Mmm Hmm.

DAVE: …and they don’t recognize them as such anymore.

ELLEN: It’s such a good thing to identify and to highlight in the purpose of this podcast, because we are here to talk to patients about WHY they should get treated if they have an issue, and understand the rationale behind it…

ELLEN: …I can speak from experience, when I was in grad school, we always said: “Do as we say, not as we do! We’re sleep researchers, but we DON’T SLEEP! Because: somebody’s got to be awake to take the measurements, right? All throughout grad school, I was chronically sleep-deprived, and I didn’t even KNOW how good I felt until that day after I graduated, and I just slept! I slept for such a long time, and I felt like a new human!

DAVE: In retrospect, how would you describe the symptoms that you had, if you were to describe that as a malady, and say I had THESE symptoms, what would you say you felt?

ELLEN: Well, I think the thing for me is I would have never said that I had any symptoms. Because: I did just fine, thank you very much!

DAVE: Yup.

ELLEN: You know? I had to get to work and I…you know…this, that and the other, and I had to be on top of everything, but, looking back, in my well-rested state now, I can see that I wasn’t as organized as I am now…I’m actually a morning person! But I had so much difficulty getting to work at 9am! And I didn’t even know that was just because I was so chronically sleep-deprived! That my sleep was just pulling me into bed every day. It would make it so hard to get up!

DAVE: So I would characterize those Wake-related complaints, if I was having a conversation with a patient I would say: “So, what you’re saying is, you have a sense of morning brain-fog and grogginess that is…semi-limiting…”…and…what was the other thing?

ELLEN: It was my ability to be organized.

DAVE: Oh! And concentration! Sort of multi-tasking.

ELLEN: Yes.

DAVE: Executive functioning was…not where you’d like it to be…you were getting by…you were making it work…

ELLEN: Yeah! Absolutely! I graduated with my PhD! 

[laughs]

DAVE: Right! Right! Obviously you, you succeeded!  These are gradations of problems that you can get used to, and you’re not sure where things are until it goes away!

ELLEN: It’s like the Frog in the Boiling Pot! 

[boiling water sound effect]

ELLEN: People don’t necessarily know that SLEEP supports your immune system, executive functioning, the way your brain works, your memory, your cardiovascular system, all these different wonderful things about your body, and they’ll say: “I’m having this issue!” And they don’t realize actually that could be because of your sleep issues….and so we can we can treat the sleep issues and we can actually help you in these other parts of your body. And those are the clues that bring us around to figuring out there IS an issue with the Sleep in the first place.

ELLEN: My favorite thing to ask at the beginning of my talks…I call it a Wake Up exercise, and I ask: Are people happy with their sleep? Thumbs up, Thumbs down. And…so you get this sense around you…that you’re not alone

DAVE: Same question I asked Robert.

ELLEN: Yes.

DAVE: Are you satisfied with your sleep? YES or NO?

ELLEN:  Yes. Because I bet no one has ever specifically asked them in those terms.

DAVE: Yep.

 ELLEN: “You have to answer me YES or NO”…and if you say YES, it doesn’t mean it’s perfect. Because we’re going to talk about other things…but, for the people who say NO, I definitely ask them, more generally…can you share some things? You know? What might be issues? And I hear a lot of SNORING, and I hear a lot of URINATION FREQUENTLY, I hear a lot of people say…the biggest thing I think I hear is people wake up early in the morning and can’t fall back asleep. And somebody—one person says that and I see…tons of

DAVE: …hands go up…

ELLEN: …well, just nodding. People don’t necessarily want to acknowledge it but you can see that knowing look in their eyes. And, I think that THAT’s so key, to just feel in that community of people who have also experienced that…and you’re not alone! Because it is a very challenging thing to feel like in the middle of the night, your partner’s asleep, your family’s asleep, the whole rest of the WORLD’s asleep—why can’t I be asleep?

DAVE: It’s a tremendously lonely experience, and very frustrating.

20:45: Dave Discusses Nocturia

DAVE: I want to talk about the urination, because I know that there are people that wanna hear about that, and then I wanna go back to the binary YES or NO. OK? So let’s talk about urination.

DAVE: So, if you’re out there, and you’re listening, and you’re saying to yourself, nodding, saying Yeah, that’s why I’m not going in, ‘cuz I could never wear one of those machines

ELLEN: MmHm

DAVE: You know, I’m up every two hours… It’s important to know that this could actually be secondary to a sleep breathing problem…a lot of people don’t know that.

DAVE: It has to do with pulmonary physiology, and the way the pulmonary blood flow works. So it’s a smart system. It’s not just a blind series of plumbing, that just pumps blood through the way you would think, you know, stacked plumbing would go through. 

The lungs are designed so the blood is NOT sent where the lungs are not aerated. And you know, if we’re taking little small breaths, and not filling up the bottom of our lungs with, with air, it’s a good idea not to shunt blood through there, ‘cuz then it would return to the heart as blue blood and we’d not feel very good. 

So, it’s an auto-regulating system.

But when you become globally hypoxic, like when you have a Sleep Apnea event, and you’ve stopped breathing for a bit and oxygen levels drop globally, the entire pulmonary circulation will constrict, and that creates a strain for what’s upstream, which is the right ventricle of the heart. 

And when the right ventricle feels a strain, and it’s trying to push against that elevated systolic pressure, it tells the kidneys essentially to make more urine, ‘cuz “We’re fluid overloaded up here in the heart!” 

ELLEN: Well, and I think that that imagery that you present of the plumbing system, and the balance…because people do think it’s just a closed system, everything’s going through. But it’s the pressure that pushes back, when you’re in this hypoxic—or “you don’t have enough oxygen”—HYPO-  OXIC

DAVE: Yeah.

ELLEN: That you’re actually creating a stressor on your body, so it’s using its emergency response, which it’s very good at…

DAVE: …Yep…

ELLEN: …and so that’s a very natural thing to do, but it doesn’t need to be that way.

DAVE: It’s actually a really glorious moment when people come back, and we talk about these symptoms again, and, for the character who inspired Robert, his symptom of frequent trips to the bathroom just went away…it was gone. And I felt like saying: This is a telegram from your heart saying THANK YOU! 

ELLEN: That’s a fantastic image. But also: it’s a great thing to realize, to take that step at the next visit and say: What HAS changed? Because it’s a, it’s a subconscious thing that you do, SLEEP. You don’t consciously realize even when you’re waking up, and so to catalog the fact that you are waking up less—that DOES help with your sleep satisfaction. And so having that positive cognitive relationship with your sleep is important, as well.

23:46: Rating your Sleep Satisfaction

DAVE: I-I totally agree.

So, moving on from the binary. That’s the stepping-off question. Are you satisfied with your sleep? That gets people thinking. And they will give you a YES or a NO answer—

ELLEN: Do they always give you a YES or NO?

DAVE: Sometimes I’ll get a YES with about two octaves higher, which means that they’re lying.

ELLEN: [laughs]

DAVE: So they’ll go like Yeah! Welllll [awkward falsetto]……..you know, and they’ll do these squeaky sounds, and then when you squeeze it out of them, they’ll admit that they were staying up too late because they were…you know…so it’s usually under their control, when that’s the answer.

When the answer is NO, then the next step—and I think this is important for me as a clinician to understand the magnitude of this NO. 

 So I say: OK, if you can rate your satisfaction with your sleep, in general, with ten out of ten—and I know it’s not that, because ten out of ten would be perfect and you like it fine…ONE out of ten is that you can’t imagine this could be worse. There’s no way this could be worse. Where would it be on that scale?

And, for people who are suffering, it’s usually FIVE or less. For people who are doing OK, they’ll usually say: Oh, it’s a SEVEN.

ELLEN: Seven’s pretty good?

DAVE: Yeah. And-and I say SEVEN, that sounds pretty good. And they’ll be like: It’s OK. And so they’re not suffering. But FIVEs, they-they failed themselves. On a standard grading scale,

DAVE and ELLEN together: 50% is a failure

DAVE: So, that’s a person who’s suffering. Then the next step is to say: OK…Why isn’t it a 10? And that’s the way to produce your set of sleep-wake complaints. If you’re listening at home, that’s a fun exercise to do! If you don’t know what your sleep-wake complaints are, just think: Are you satisfied? Well, HOW unsatisfied? And then: Why isn’t it a 10? What are the things that bug you? And, when you come up with that list, chances are, you’ve got your sleep-wake complaints.

[strange sound effects and a happy ding]

25:40  Intro to THE CARTOONS

DAVE: …and that sound means we’ve come to the CARTOON component of our show

[kids cheering sound effect]

DAVE: …arguably, one of the more unusual parts of an audio program about Sleep Apnea…

ELLEN: Well, I want you to-I want you to tell about WHY you cartoon. Why do we have these cartoons here, we’re talking about MEDICAL things on this Podcast.

DAVE: Yeah-so this is kind of the weird thing about living in this head. Is that, ever since I was a little kid, I-I’ve drawn on things. And I sort of learned to sort out my feelings…with drawings… 

And, as I was reflecting on my career, and wanting to know how to teach this stuff to people, I kept running into roadblocks. And I kept going down deeper and deeper rabbit holes, that probably were just gonna confuse people. And I wasn’t getting the feeling right.

And what the cartoons allow me to do, is to go back to what I’m feeling, kind of in the middle of my chest, and I can square off with WHY this is such a frustrating problem. And it gives me a way of exploring that initial frustration. And then: we can talk about it from there. 

And I-I think for me anyway, it introduces topics that are hard to talk about just by having polite adult conversation.

ELLEN: So this is your Vulcan Mind-Meld, basically.

DAVE: This is-this is-YEAH! This is-this is the results of the Vulcan Mind Meld. It’s trying to get into the head of the people who are doing this. And FEEL what that feels like. 

[cue Ocean sound effects]

DAVE: I’ve always had this feeling that Sleep Apnea itself is this incredible adventure. 

[foghorn and gull sounds]

DAVE: And I figure…We’re gonna need a better MAP! So, the first cartoon is actually a MAP of the Isle of Sleep Apnea.

ELLEN: So I have a really nice piece of paper in front of me. It’s-uh-Black and White—

DAVE: Pigmented ink.

ELLEN: Pigmented ink. It’s beautiful. Kind of what I’m seeing here…I have a- it looks like a treasure map, honestly. I’m thinking about…I’m thinking about Peter Pan. The map of Never Never Land. There’s a Bay of Narrative, where we begin. Then we approach the steps of the FIVE REASONS MONUMENT and COFFEE HUT…

DAVE: So, this is, this is basically the idea

ELLEN: (snickering)

DAVE: …we enter with Narrative, and we have to consider the FIVE REASONS TO TREAT…and then after that, you get across the -uh- RIVER OF DECISION…

ELLEN: …yeah, because it’s not always indicated to treat, so…

DAVE: …so then you move from the land of UNTREATED to TREATED, and then you can see there in the TREATED area, there’s all kinds of fun adventures to be had.

ELLEN: Yes! It looks very um scary, but also…exciting! I really like this Lake of Innovation that’s flowing in, um, through the Decision River…

DAVE: Well, that’s of course where all the treatments come from…

ELLEN: Well, I think- I think it’s GREAT, because I think it shows that it’s always changing…the-and-and The River is not steadfast. Unless, you know in Pocahontas, the Disney movie says that the River stays where it is. But in this, in this land…

DAVE: In this island, the River flows both ways, and it gets violent, and it’s hard to cross and you never know where you’re gonna end up.

ELLEN: Yeah. It’s very interesting. But there’s a lot of- it seems like the Coffee Hut is very welcoming.

DAVE (laughs): Yes.

DAVE: So that’s-that’s the first one. Is it’s the lay of the land. And you can check out the Isle of Sleep Apnea at our website. The second one, this one I call NEW DIAGNOSIS. And in this, we meet our friend Claudio, who is a character I created when I was still an undergraduate, and I wrote a cartoon strip for the school newspaper. 

And he was kind of a…kind of a woebegotten guy, where stuff was always going wrong, and yet he kind of made his way through life, and he tried hard, you know? I kinda like him. 

And, uh, I realized that he was gonna have to help me tell this story. 

So this is Claudio coming home from IKEA—‘cuz that’s what it felt like to me…if you come home with a diagnosis of Sleep Apnea, it’s like comin’ home with a big box and you’ve gotta put it together.

ELLEN: So he says: “I picked up my new diagnosis today, Sleep Apnea.” And he’s got this big heavy box. And there’s lots of parts, and they all look strange, and they don’t look like they fit well together…

DAVE: Have you ever put anything together, from IKEA?

ELLEN: Yes.

DAVE: It’s a wonderful store. I love it. It creates conflict, doesn’t it?

ELLEN: Well…I love that stuff. I shoulda been an engineer. My Dad says it all the time. So, I’m probably not the one to say, but I know that there are a lot of people who have asked for my help with these things… (laughing)

DAVE (laughing): That’s why she’s our Science Correspondent! 

 You’ll have to go to the website to learn exactly what happens to Claudio here when he puts his New Diagnosis together…um…but, do you wanna give them a little clue?

ELLEN: There’s a Big Reveal, and a lot of Anguish.

DAVE: (laughing). OK! So that’s sort of how frustrating it feels to Not Understand. And that’s why this podcast exists.

ELLEN: Well, and it’s important I think to- that- that- a clinician will define that emotion, in their patient.

DAVE: Yeah, yeah, you know…it’s a big system, you know? I really think it helps for people to know that they’ve got someone who can help them navigate it, on the inside. 

This last cartoon is a bit of an experiment. Um. Here, I wanted to comment on the notion of “priming.” And, because it occurred to me that Robert’s story was heavily primed by something. And he came in, hostile. And I’m assuming it was something similar to the vibe that we got from that drug story we talked about earlier, about Pseudobulbar Affect. 

So in this panel, I gave Claudio kind of an inventive way to prime him, and we get introduced to a new character called his Shoulder-Bug. And Claudio is checking out at the sleep clinic, and the Nice Lady behind the counter says Have A Great RESTOFYERDAY! And she kind of says it fast. And his Shoulder-Bug tries to translate what she said to him. 

ELLEN: There’s a lot going on. 

 DAVE: (laughing)

ELLEN: Like, in Claudio’s brain, I think. You know, no! I can see it. There’s a- he’s just…struggling with the word as he’s moving and he’s doing stuff, and he’s looking back at what he’s experienced, and…really struggling through, and you can see it just like building and building and building…

DAVE: …at first, he was kind of excited!

ELLEN: Yeah! He thinks it was good! But then, the Bug seems to somehow get to him.

DAVE: Yeah. The Shoulder-Bug got him going. Claudio gets upset, and he thinks that he’s being disrespected somehow with that sort of Nice Thing To Say. And I- I think my point in this cartoon was you can get hostile reactions…from anything, if you’re primed to be hostile for it. Right? Human beings are crazy-wonderful-creative-interesting-complex people, and I think that those types of emotions, they can be hard to explain when they’re happening. 

When Robert finally settled down, it was actually miraculous. It was a bit like the story where the mouse pulls the thorn out. ‘Cuz, as soon as he realized I was listening to him, uh…he was my friend, and I never heard another complaint from him again.

ELLEN: That’s wonderful.  Well, you never know what’s going on with the Rest of Their Day!

DAVE: Yeah… 

33:06: The ORIGIN of the FIVE REASONS TO TREAT

ELLEN: How many Roberts do you see in your day? What percentage of your patients does Robert’s stuff—

DAVE: Let me go back to the actual progression for this…tale—we’ll call this a TROPE…OK?

ELLEN: OK.

DAVE: A trope of: “You doctors are gold-brickin’ me, and I distrust you.” OK? That language was coming my way, early on in my career. And, I got wind of it a couple times and I started to create this process by which I can help people make their OWN decisions. I don’t- I’m not gonna TELL you what to do, I’m gonna tell you the facts, and then we’ll work through it together. OK? This was what would be formulated into the FIVE REASONS TO TREAT.

But it wasn’t until the man who was so hostile, that… I mean th- …that sort of emotional release…is actually scary…and it- it- it’s a-…it’s a scary thing to sort of sit through…and I had to check that emotion and make a decision to create this process. 

And it was Robert that transformed me to do that with every patient, before we went any further. And I realized that, having done that, I never got that complaint again.

ELLEN: Never again!

DAVE: Never again.

ELLEN: That’s incredible! But I imagine that it wasn’t…you know…the normal way to go about things. This became YOUR normal.

DAVE: This became my normal BECAUSE of that. Now, if they were coming from elsewhere, and they had started care elsewhere, then they—I—we’d- we’d have to start all over again. 

ELLEN: …because it wasn’t the same with everybody..

DAVE: Well, of course- this was my little- sort of- thing…so the FIVE REASONS TO TREAT, this is, you know, I’ll tell you right now, listeners, this is why we’re doing this podcast. I would like this to be standard operating procedure who gets a diagnosis of Sleep Apnea to have an understanding of WHY we’re gonna treat this, and to really be able to pick it apart and call it what it is.

So the FIVE REASONS TO TREAT method…happened because of Robert. So I guess you could say my NARRATIVE as a physician changed a little bit, because of his narrative. 

35:14: Dave Sums Up

DAVE: Well, that about does it, for now. I think it was a good first show…we talked about getting an understanding of Sleep-Wake complaints by starting with the most important question: Are you satisfied with your sleep? Yes or no?

We learned to rate our sleep satisfaction on a scale of 1-10, and then explore all the specific issues that affect that score for ourselves. 

We explored the possibility that the complexity of our medical system can prime a person’s mindset to regard healthcare providers with suspicion, and we saw how this can create barriers to moving forward on the journey of healthcare. 

We even gazed into the existential suffering that occurs in the setting of receiving a new diagnosis as complex and multi-faceted as Sleep Apnea. 

This is the suffering of Not Knowing. Ignorance enfeebles us, makes us feel weak, vulnerable, and frightened. 

Knowledge EMPOWERS us. 

And: Robert’s journey of Empowerment…is just beginning.

36:14: Outro music and credits

[CUE Majestic Theme Song]

 Empowered Sleep Apnea is an educational production of Empowered Sleep Apnea, LLC. Visit us at www.EmpoweredSleepApnea.com  

The show was written and performed by David E McCarty MD FAASM and Ellen Stothard, PhD.

All sounds on this podcast were either created by the performers, or were assembled from public domain sounds from stuff we found lying around the house!

Cartoons were slipped under the door in a plain, unmarked manila folder, accompanied by the sound of giggling.

This week’s theme song was performed by Twenty-Five Percent Fred.

Dr. McCarty’s bowtie this week doubles as a time-portal.

Dr. Stothards running pace suggested by a pair of hunting wolves. 

Tune in next time, as we discover the many moving parts of not one but TWO flavors of Sleep Apnea—obstructive AND central—and we’re going to find out that our friend Robert…has a little of both. 

Coming up next: Your Sleep Medicine DAD JOKE.

~~~~~~~~~~~~~

37:10: Sleep Medicine Dad Joke

[CUE COMEDY CLUB SOUND EFFECTS}

DAD: Alright. Alright right right right. Why couldn’t the bicycle stand up by itself?

Some Guy:  Hmmm. I dunno? How come the bicycle couldn’t stand up by himself?

DAD:  ‘Cuz…get it?...it was TWO-TIRED. You get it? TWO-TIRED? Right? Right?

~~~~~~~~~~~~~

37:38  Empowered Sleep Apnea Book Promo

Empowered Sleep Apnea: A Handbook for Patients and the People Who Care About Them is now available EXCLUSIVELY at BOOKBABY.com. 

Go to our website at www.EmpoweredSleepApnea.com and find out more.

And hey: Many thanks!