217: Julie Flygare, President & CEO of Project Sleep: When Doctors Miss Your Sleep Disorder—and One Woman’s Stand for Change

 Welcome to the Sleep As a Skill podcast. My name is Mollie Eastman. I am the founder of Sleep as A Skill, a company that optimizes sleep through technology, accountability, and behavioral change. As an ex sleep sufferer turned sleep course creator, I am on a mission to transform the way the world. Thinks about sleep.

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Each week I'll be interviewing world-class experts, ranging from researchers, doctors, innovators, and thought leaders to give actionable tips and strategies that you can implement to become a more skillful sleeper. Ultimately, I believe that living a circadian aligned lifestyle is going to be one of the biggest trends in wellness, and I'm committed to keeping you up to date on all the things that you can do today to transform your circadian health, and by extension, allowing you to sleep and live better than ever before.

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Welcome to the Sleep As a Skilled podcast. This week we're joined by someone truly inspiring Julie Pfluger, president and CEO of Project Sleep. TEDx speaker and author of Wide Awakened Dreaming, a memoir of narcolepsy. Julie's story is anything but ordinary. What began as burnout in law school turned into something much deeper, a diagnosis of narcolepsy with cataplexy that completely changed the course of her life.

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Instead of letting it define her, she used it as fuel to create something bigger than herself. In this episode, Julie shares her powerful journey from waking up in her car with no memory of how she got there, to launching a nonprofit that's breaking barriers and reaching people across the country. We talk about how she turned her personal struggle into a platform for change, how storytelling is.

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Such a vital tool for connection and what it really takes to advocate for those who feel unseen and unheard. Julie also gives us a look inside her latest mission, pushing for something long overdue, national recognition and support for the million silently struggling with sleep and health. Challenges.

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This conversation is for anyone who's ever felt dismissed, misunderstood, or like something was off and no one believed them. Julie reminds us that your story matters and you're not alone. So we're gonna jump right into this episode, but first, a few words from our sponsors. Important question. Can you see the hand in front of your face in your bedroom?

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And welcome to the Sleep is a Skill podcast. This is an exciting episode because we're gonna have the opportunity to hear some updates around a whole arena. Project. Sleep is this entire area that is taking on this area of sleep, of how to. Promote and get this information out to the masses as a nonprofit.

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Um, correct. Right. The nonprofit and really, really on a mission. I know a lot of things are happening with Project Sleep, so thank you so much, Julie, for taking the time to be here and share more with us of what you're up to.

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Yeah. Thanks for having me. Um, big fan of your podcast. So excited to, um, share about project Sleep.

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Well, thank you so much, and the feeling is mutual. So this will be an awesome opportunity to hear the latest, and I know there's a lot brewing over there, but maybe we can start at the beginning of how you found yourself at the helm of this really pioneering and nonprofit.

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Of course. So I was actually in law school to study art law.

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I was a art history major in college and my dad convinced me to go to law school 'cause he was a lawyer, um, to study art law. And then while I was in law school, I started to think maybe I wasn't meant for law school because I would read a case, um, especially certain classes were. More boring than others.

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Yeah. Um, and I would finish reading a case and I couldn't remember what I read, so I'd think, okay, I have to start over. I'd read the same case over. I still couldn't remember, and then I thought. What's wrong with my willpower? Like, this felt very important, but like something wasn't connecting, my brain didn't work this way.

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Um, and so over the first year of my law school, I was really struggling. I got my first C plus, um, of my life. Yes. Uh, I felt, you know, devastated by that. And then at the end of my first year of law school, I actually, um, was preparing for exams. And so one morning I got up and I had definitely had a full night's sleep and I got in my car.

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Just 15 minute drive to school. And, um, I remember feeling tired as I approached school, but I was like a minute away. So I just thought, all right, just get to school. Just get to school. The next thing I remember, I woke up in the parking lot of the law school and my car was parked, my seat was reclined, but I didn't remember arriving there.

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Like, there was no picture in my head of pulling into the law school driveway. Wow. Picking a parking spot and all at once, I just thought, who can't drive 15 minutes in the morning? Without feeling that tired. Mm. Um, and that, that was just like a really scary moment. And I, I saw like all these excuses over many years at that point.

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Um, I'm not a night person. I'm not a morning person. I haven't had caffeine. I'd had too much caffeine. I convinced myself at one point, if you have too much caffeine, you'll be tired. Um, and I just like this situation. 15 minute drive to school in the morning. There was no excuse and I thought maybe I have a sleep problem.

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Um, I actually thought I was a perfectly fine sleeper at night. You know, you're not conscious when you sleep. How do you know? Right. You know, necessarily what's happening. Um, but I started to realize that something was wrong during the day and my brother-in-law had had sleep apnea, so I just was, you know, somewhat familiar with that.

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Um, and so at the end of that year of law school, I went to a primary care doctor and I, you know, um, I actually said, I think I might have a sleep disorder. And she asked me to describe what was happening and I said I was, um, having trouble with coursework in law school, but also that, um, I was having trouble driving and I'll never forget, she said back to me, well, everyone has trouble when they drive.

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Sometimes, like, even I have to pull over to get a coffee at times. And I remember, yeah, I remember thinking like, I don't. The strange thing is it was the smallest voice inside me that said, I don't think she's talking about the same kind of sleepiness. Yeah. But I had no way of knowing, like, how do you know how to compare your sleepiness to someone else's?

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So I was like, okay. Um, so she wanted check my thyroid and my, and my iron levels and stuff like that. Um, luckily I did have a separate problem, which was my knees were buckling when I laughed, uh, which was really strange. Hmm. And, um, so, um, well. Uh, she actually didn't know what that was either. Yeah, she kind of said I would have to get used to that, which was scary because it was starting to happen more and more and like having your knees buckle when you cross a crosswalk.

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Like I almost stumbled and fell, so I was getting a little bit dangerous. Um, but then I also had like a running injury from being a big runner and so I went to a sports therapist at my uh, school and the sports therapist was asking me all about my knees. She said, your knees ever buckle. And I said, well, yeah, when I'm laughing, it doesn't have anything to do with my running.

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And she said, no, tell me about it. So I just told her more about that, uh, separate knee buckling with laughter. And she said, I think I've heard of that. I think that's called cataplexy. So she wrote this word down for me, cataplexy. And I went home and I Googled that and I saw it was this form of muscle weakness with emotions and that it was a symptom of narcolepsy.

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Hmm. I thought, no, there's no way I have narcolepsy. Like that's just a joke about someone falling asleep when they're standing or in the middle of a conversation. Right. The movies. Yeah. Had portrayed it. Um, but then when I read the Real Symptoms of Narcolepsy and I saw excessive daytime sleepiness, I thought, oh my God, that sleep disorder, I thought I had the cataplexy.

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And then these other things, these strange experiences where I thought a burglar was breaking into my apartment. Um, but then realizing a burglar hadn't been there, like that had been happening to me as well. And that's also can be a symptom of narcolepsy. And so, pretty quickly. I knew that's probably what I had.

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Um, and I was lucky I was able to get in with a really good neurologist, um, at, at Harvard really quickly. And, um, be diagnosed fairly quickly with narcolepsy, with cataplexy, um, at the beginning of my second year of law school. But, um, that changed my whole pro, my, you know, my whole life. I, I didn't want it to change my whole life, honestly.

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I thought it was just gonna like, I was gonna like push it under the rug, take treatment, be better, and go back to my life. My law school life that, that I'd planned. But slowly over the next two years, I started to be more interested in health law, health policy, um, and realized that narcolepsy wasn't a joke at all.

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But not only that, I started learning about more about sleep science and seeing like. Wow. We know sleep is so important, but I was in law school where people were still bragging about pulling allnighters. Right, right. And um, we had like a 24 hour exam for one class. Like, what does that mean? Like, do you stay up the whole 24 hours to work on the exam?

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Yeah. Do you, do you sleep? Like it was unclear. Um, and so, you know, I guess I kind of became fascinated by this. This gap between what we know scientifically and the communications aspect. Um, and I had studied creative nonfiction in college as well. So, um, decided to write a book about my story when I graduated from law school.

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Um, not that I had the best story, it's just a story I had and I felt like, you know, we needed a, a more honest, uh, depiction on like the movies. Um, narcolepsy was. Not what you saw in movies, but also was really fascinating condition and, and, you know, could make a good book. So, um, I wrote a book about my story and then after kind of being in the space for about five years, working with the various nonprofits, volunteering, um, being in Washington, DC and just showing up at meetings and standing in the back of the room and, um, eventually felt like there could be space for a nonprofit that was patient driven and focused on, um.

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Some of these things combined, sleep, health, sleep equity, and sleep disorders. Um, because I think some of what I was seeing at the time was that, um, someone like Aria h uh, Huffington was now talking out about sleep, but it was almost like very siloed, that conversation versus sleep disorders. And I really felt like they needed to be part of the same conversation.

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So yes, long story, long, um, that was how I ended up founding project sleep.

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Oh, that's incredible and I so appreciate you openly and vulnerably sharing your story. And then also just like the many paths and the circuitous route that you had to take to find and get this diagnosis. I mean, thankfully you got it, but for so many people they might not have put these.

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Puzzle pieces together or stumbled upon the actual individuals that could point you in somewhat of the right direction. And this is a big problem, and we can only imagine how many people are running around undiagnosed with the many sleep disorders that are out there. So now that you've started project sleep, maybe if we can hear, I love what you said too, the intersection of sleep, health, sleep equity, sleep disorders, a little bit more about what does that.

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Look like on the ground for the individual in case they're showing up listening to this, struggling with their sleep. How could project sleep help them or someone they care about? What does that look like?

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Yeah, so we really try to stay focused on both parts of that journey, that undiagnosed population, how do we reach them?

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Because that drives me crazy, honestly, every day to think of the, um, the majority of people with narcolepsy or with something like sleep apnea are out there living. Half lives. Yes. You know, they're living, they're driving so tired, they're thinking it's something wrong with their own character, um, or their own personality, or they're just not meant for their job or law school or whatever.

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And that just breaks my heart. And so, um, finding ways of reaching those people is one of the parts that I think is so, um, essential to project sleep and something we're trying to work on. And then also having support for people once they're diagnosed because we know that navigating that journey also isn't easy.

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Um, so our. One of our more recent programs, I'm so proud that we finally got off the ground last year, is the, um, sleep helpline. And that is a resource available for anyone at any point of their sleep journey to ask. Uh, they can call, they can email or send us a message and, um, talk to someone about where they are in their journey and help navigate them to the right resources.

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So it's not medical advice, but it's navigational support because. Navigating any of this is so complicated. Yeah. Um, and also it can, it can feel really lonely and impersonal. Um, I think any sort of a health journey for anything, you know, when you have to log into portals to just, to message your doctor and, um, you know, sometimes you just wanna, you know, brainstorm ideas with someone and feel heard, and feel validated.

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And, um, I know for me, like. When I was sitting in my car and realizing I think I might have a sleep problem, I didn't know where to turn, right? Yes. And so if that resource had been available for me, I could have called and someone would've answered and empowered me to take my. My concerns about my sleep seriously, uh, you know, which would've helped me, unlike going to the primary care provider who like tried to talk me out of my own concern for my sleep, right?

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So, um, we really hope to, um, meet people where they are. Um, and I know. The program has only been going less than a year now, but we hear a lot from people all over the country. Um, a lot of people live in areas where there aren't great resources available and we're trying to help them find resources and, um, and all sorts of different sleep issues.

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Um, so it's not just. Conditions specific. It's um, any sleep issue or sleep disorder you're facing, we have the helpline now available.

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Oh, that's so huge. And I love what you said too about the, the situation for you with your doctor. I mean, and we see that so commonly for people and not necessarily from a malicious standpoint or what have you, just a systemic problem that we have so many doctors that unfortunately just aren't getting the education, so it's.

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Not like they're withholding or something like they just don't know. And probably, quite frankly, for themselves as well. And unfortunately for the system, certainly see, for the medical system in general, a missing of a prioritization around sleep and sleep management and healthy sleep habits by and large.

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But to see that for patients, so we really do need to, in the meantime, until we have a better bridge in this information, to have resources like what you've. Put out there. So for your helpline on your site, you say that you can support people uncertain if they might have a sleep, uh, related condition.

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People diagnosed with a sleep disorder, loved ones, and caregivers, healthcare providers, educators, social workers, anyone looking for information about. Sleep disorders, and I'm assuming that can also include a common sleep disorder, like insomnia as well, even if they're just looking for some support there.

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And then of course, sleep apnea, narcolepsy, restless leg, the whole gamut is, if I'm gathering that correctly.

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Yeah. I think one of the hardest parts to navigate and I remember it happened to me was. Even once I had the word narcolepsy, I was like, so what kind of a doctor do you see about that? Yes. And then, and if you even start googling around like, I, so I, you know.

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I had never really had a medical problem before. Right. Um, and so the kind of terminology like a, do I see a sleep specialist or a neurologist, I didn't understand that you could actually be both. Right, right. Um, or that you could be a pulmonologist and a sleep specialist or, you know, a dentist, um, or, you know, or that for insomnia to, um, be finding out about CBTI interventions, um, and not just at your primary care.

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Um. So that's some of the navigational support. I think that is so helpful. Um, and, uh, that we can help provide, you know, what kind of a, uh, and get people to the board, certified specialists, um, depending on what you might be experiencing.

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Amazing. Okay, great. So this sleep helpline is available, usually we say for the end, but just wanna put in here if people are listening and want support now.

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Yes, go to project sleep.com and right there you'll see the big button for helpline or slash helpline and lots of different resources there and steps you can take, but people that you can be connected with right away, right? 24 hour situation or like a ongoing situation.

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Yeah, it's, it's like business hours.

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Um, right now we have one staff member. We hope to expand, um, the hours and, you know, availability over time. But, um, for now we're a little bit more focused on quality, uh, connections rather than that we can meet anyone in any moment. Um, and we will always get back people. So you can send us a message 24 7.

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And then, um, our helpline manager, Heather, right now will get back to you, um, hopefully within, you know, the first business day.

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Amazing. So good. If you've tuned into the show or followed any of our content here at Sleep as a skill, you may have heard that everyone that we work with wears the OAR ring, and as a result, we have amassed a very large database of OAR ring users and get to see what really moves a needle for people when it comes to their sleep.

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There's more, more, more so. The system even includes a smart alarm feature that wakes you up during your lightest. Sleep phase. I know a lot of people have asked me about this, and this is included in here within a customizable time window, ensuring you wake up feeling refreshed and ready to start your day.

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Head on over to eight. Sleep and use the code. Sleep is a skill, all one word at checkout for a discount. Okay. And so, and this is something you're more newly have rolled out as of last year, is that correct? Yes. Yeah. Incredible. Okay. And so how about additional things that are happening at Project Sleep that we should kind of let people know about or share about exciting things happening over there?

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Yeah, so I think one of the things that I'm really passionate about is about using storytelling as a vehicle for education. I think there's sometimes scientists. Have this feeling that if we only share more facts and figures with people, that they will change their behavior. Uh, and that model of thinking has been shown not to really be very effective.

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You know? Yeah. We see this in a lot of areas where just because you share the science doesn't change people's behavior. So what models do change people's behaviors? Uh, one of them that. That has been shown to be effective in various health condition areas, especially is, um, storytelling. Um, and so we created the Rising Voices Program, uh, to help people with sleep disorders on how to effectively share their stories, uh, as a vehicle for awareness about sleep and sleep disorders.

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So that's one of the opportunities, uh, for people that are diagnosed with a particular sleep disorder. They can take a month long training with us over the summer and become a trained, rising voices, uh, speaker and present at different conferences in their community. Um, everything from a high school or a nursing school.

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Um. So that was, you know, one of the ways that Emma Cooksey first got involved with Project Sleep. She was our first Sleep Apnea Rising Voices speaker. But now we actually have a whole group of sleep apnea speakers, narcolepsy, idiopathic hypersomnia, um, REM sleep behavior disorder, and we'd love to get other people with other conditions involved as well.

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Uh, and that's also a resource for clinicians or anyone in the sleep space that's looking to have a speaker come and speak to their group. Any meeting of more than two people counts, in my opinion, as an audience. Yes. Um, and it's actually really fascinating that I think patient stories are really underrepresented and, um, and kind of an afterthought for a lot of, um, seminars and conferences.

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Uh, I think that's changing. Thankfully over time, but that's one of the hardest parts. It's not actually training these individuals with these amazing stories that Yeah. Um, are so powerful. It's actually finding them ways to get in the door so they can actually share their story with people. So, um, for anyone that's interested, these are volunteers.

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They're eager, they're excited, um, and they have. Such powerful stories so we can work with you even on figuring out what kind of a story, what kind of a person in, in your area. Um, 'cause we have now, I think it's over 160 trained speakers in 20 countries around the world. Wow. Um, that are congrats. Yeah.

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Huge. Yeah. So that's one of our more like long, longstanding programs, um, and opportunities, uh, for people. And then, you know, when you were saying about, um. Like how do we get primary care and how do we get more people educated? Yeah. Um, about sleep. You know, I think one of the main things. Obviously I had a legal background and I studied health law and health policy, and so we've been focused over the last, um, five years or so on building up a sleep advocacy program in Washington dc Um, makes sense.

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And yeah. Yeah, it's been exciting. And our most recent thing is kind of my dream, one of my dream projects, which is to, um, to have a sleep. Awareness and education program at the CDC. It's actually really striking that the CDC currently funds almost nothing on sleep health. Um, this is our public health department, you know, of the government and they have a line item budget that funds things like, um, I think it's about a hundred million dollars program on nutrition.

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And, um, you know, something like epilepsy awareness is about $11 million program. Um, and so many other things you see in their line, it and budget are all connected to sleep, right? Is are things that could also all be related to sleep and it's Yeah. So striking and honestly, when we're on Capitol Hill and we're talking to congressional offices and we tell them this, they're kind of shocked that the CDC doesn't have a sleep program.

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So, you know, this is, uh, we have a bill right now to create that foundation for the CDC to have a sleep program. Geez,

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that is huge. So important and just such a blind spot. It just really does speak to how important it is that you are helping to lead the helm and getting this message out because it's just wild.

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It's something we do up. Third of our lives is just so undiscovered, underfunded. So many questions still lurking, and yet so many just immediate impacts, even from just bare minimum of a safety perspective of kind of error rates going up. Driving issues. I mean, the amount of things that we can see just immediately, let alone in the long term.

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I mean, I know I'm preaching to the choir, but it's just alarming and that's so, so important. So you're leading this to, with the aim of disrupting this and helping to get more funds through the CDC?

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Yeah. So you know, another way of thinking about it's the NIH funds a great amount of sleep research and that's led to like incredible discoveries like the.

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Hypocretin orexin discovery for, uh, the cause of narcolepsy, um, and other great things. Um, the, uh, technology that ended up in the Inspire implant, you know, that started as a lot of NIH funded research. So we've had these great advancements. So they, that's led to now treatment development that's in clinical trials or, or actually FDA approved, uh, treatment options for people.

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But unless people have know that they have these conditions. They can't access it. So all that money that's being spent on all this great research, um, or like you said, the connection of, of sleep and, um, productivity or driving or Alzheimer's like, so, um, it's interesting about CD. C is that because it's this line item budget that basically.

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They can't just kind of do it because they want to, you know, so it's not that A CDC is like, no, sleep's not important, right? Um, but Congress sets that budget for them. And so it's about getting Congress to put that, um, line item in their budget. So the CDC can then do that work. And then what that really means is actually more like, uh, grants being available for people to do that work.

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So the CDC then, if they had a $2 million, um, sleep awareness. Um, program, they could help to fund work at many different levels. Different people can apply for those grants. And, um, that could be doing something like in the epilepsy space. They have a program they fund with the epilepsy foundation that's called, uh, seizure Safe Schools, where, um, the Epilepsy Foundation goes and trains school nurses on, you know, looking for signs of seizure disorders, what to do when they see them.

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So you can pretty easily see a parallel with what you could do with, you know, looking, you know, if you had a program like this, you could start to do, some of, you could have a program for school nurses on, you know, looking for signs of sleep disorders, what to do. Yes. Um, so there's, yeah, that's just one small example of what could be done.

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There are so many different approaches to education on so many different levels, but my thinking is always. You have to have money to do these really on a systems level, right? Yes. Um, and so that's what is so important to me about the CDC, putting some of those federal dollars behind some of the work that we all would love to do, but need some, you know, funding to do it.

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Wow. So exciting. Okay, well keep up the hard work on that one. I love that. And then also with your kind of Venn diagram of the things that you're really helping to raise awareness around this sleep equity. I wonder if you could share a little bit more about that. What are you seeing as an area for opportunity there?

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Yeah, so we're just finalizing some really exciting, we did some focus groups. Um, we worked with, uh, university of Arizona, Dr. Michael Granier. Oh, so great. And then, um, Dr. Robert Turner at GW University. And, uh, we did some really cool focus groups looking at the, uh, black American, uh, perspectives on sleep disorders in particular.

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There's been, um, some really great research in, you know, um, different min minoritized communities. But, um, we wanted to ask people, uh, living with sleep disorders and their family members, you know, their perspectives as black Americans like, you know? Um, sure. Their path to diagnosis and whether race played a part in some of their beliefs and, and attitudes and behaviors around, you know, um, finding a diagnosis and, and getting treatment and support.

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So we are finalizing, um, three manuscripts to, to, um, you know, kind of. Basically we wanna learn from the community first and then try to, um, hopefully take that and help create some more, um, you know, awareness materials that are, you know, resonate more with people, um, in different minor minoritized communities.

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So that's a first step for us. I think the helpline is also a way that we do try to reach people where they are. It's a free resource. Um, and, uh, so even though we didn't like necessarily when we started that, think that it was like a sleep equity program, um, technically I think that's we are reaching people.

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Um. That are in really difficult situations and it's, um, where, where they are, right? They don't have to attend a conference. They don't have to, um, fly somewhere or pay something to, to get that, um, support. Um, and then we hope to do more in that area, um, you know, around health fairs or um, um. I think that's been, you know, some ways that, uh, have shown some effectiveness in other areas to, um, do like community health fairs and, and try to have sleep be a part of that.

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We did have one board member in Houston, uh, participate in a health fair, um, that was for the Bipoc community. And, um, she said that, um, people, their booth was really popular. The project sleep booth was popular because people said they'd never seen sleep as a part of those health fairs, you know.

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Wow. Ugh.

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Amazing. Yeah. Glad to see this. Yeah. Disrupting things a little bit. That's great.

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Yeah, and she was a little bit nervous at first because she's the Rising Voices speaker, a person living with a sleep disorder herself, and she was afraid initially like, oh, are they gonna be asking me for medical advice? I don't wanna be in that situation.

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But what she ultimately found was that people wanted to hear her story and they wanted to share their story. You know, it's just that. That human connection. And then she had the sleep helpline resources for people for their next step, right? So, um, so if they had more questions about their sleep, just making sure they knew about that resource and she said people were so excited and couldn't believe that something like that existed.

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So, um, yeah. So I think there's a lot more to do in that area. Um, and I think something like the CDC program could help to fund some more of that, uh, sleep equity work as well,

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so. Great. Okay, so we hit on the sleep disorders, sleep equity. Any more to share on the sleep health as a whole?

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I'd say we are, um, not quite doing as much there either because, um, because of like limited funding, uh, sure.

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If you go to something like a, uh. Kaiser Family Foundation or Robert Wood Johnson Foundation. And you look at some of these big public health funder, uh, opportunities, sleep health is not on their radar yet. Um, so, you know, I think we're trying to break down those doors, like to have the CDC program, but I think as there starts to become more opportunities, um, you know, we could get more involved.

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One thing that's been important to us is to just continue to bring those messaging together. So over this past year, we worked with, um. Journalists to help them feel more empowered to include sleep disorders in their sleep health coverage. Uh, we did a search at one point where we looked at the top 10 major media sleep articles and two of the top 10 articles even mentioned the words sleep disorder.

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Um, and so, wow. You find that problematic because a lot of what they were talking about was like sleep health tips and um, we think those things are really important, but there needs to also include like, and if these things don't work for you, you know, please consider. Speaking out support from like a sleep specialist.

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So yeah. Um, that work is a little bit more at the intersection of these two things, you know, um, than particularly, but that's really what project sleep wants to be. We don't want to make that a separate conversation. We want it to be a conversation together.

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So great. Oh my goodness. Well, very grateful that you have put such a extensive nonprofit together with so many initiatives that could be so transformative for so many people.

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The rollout of this helpline and you know, more to come before we shift over to how you're managing your own sleep. Any kind of closing thoughts on this huge topic of project sleep?

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Well, I just wanna mention that we did start a sleep apnea education program recently have to give a. Huge shout out to Emma Cooksey 'cause she's our new sleep apnea program manager.

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So that's, you know, navigating, helping people navigate from, you know, sleep apnea symptoms to testing, to treatment options, to stigma. Um, so we're really excited to start addressing and building more of a community there, um, for people that are diagnosed with sleep apnea, um, so they can become more empowered in their experience and also the treatment options.

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I think that's something that's always really striking to me is that, uh. Those, uh, some of the providers in the sleep apnea space are very siloed. Yes. And so, uh, as a nonprofit, we wanna make sure that that treatment options are not, the treatment options you find out about are not based on what kind of a doctor you see, that you know, all the treatment options that are out there.

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So we're excited about that program. And then just also one. Other thing we've just launched is a new initiative, sleep and Hollywood. So as much as I do believe in starting the CDC program and getting the word out that way, I think we cannot forget the power of Hollywood. They shape so many of our beliefs about so many things, including sleep and sleep disorders.

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Um, and so we are super excited to be partnering with uscs Norman Lear Center. They actually have a program on Hollywood Health and Society, and they do projects like this in other areas, uh, around things like breast cancer, Alzheimer's. Uh, things like gun violence, um, and they are able to really be a go-to resource for Hollywood writers that wanna address topics that maybe they don't know how to address it accurately.

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Um, and we can certainly say that's true, uh, for a lot of sleep disorder portrayals that we've seen. And so we will be able to be working with the USC Norman Lear Center and working with Hollywood writers to actually get accurate portrayals of sleep disorders into TV shows.

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Wow. Oh, thank you. Oh my goodness.

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So maybe we'll see like some slender women with sleep apnea and that sort of thing, and people like yourself. Exactly. Like, you know, accomplish individuals with narcolepsy. Just like really disrupting how we're thinking about these things and having people to look towards, and then also sparking kind of that awareness of, oh wow, maybe I'm dealing with something like that person's dealing with.

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That's huge. Amazing. Yeah.

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It's so subconscious, but it's so important and foundational and so yeah. I hope to report back to you soon on some of the outcomes from that. They, this group is really successful in this work and they have a lot of great examples, um, of previous successes, like getting a whole storyline into the show.

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This is Us. Oh, I love the show. Yeah, so they had like this, uh, Alzheimer's, uh, I think it was a season long character in I think season three portrayal of Alzheimer's and caregiving. Uh, and so, you know, we're hopeful that we can get some right, and they, and they, they actually think that, that Hollywood will be really excited about this work 'cause it's really different and something that they haven't been exposed to.

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Well, they have been doing sleep disorder portrayals. They just haven't been doing them well in my opinion.

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Right, exactly. Oh my gosh. Good. Okay, well that's very exciting. So many initiatives. So yes, please keep us posted on how that's all unfolding. And so having said all of that, then I'm excited as someone like yourself who has been immersed.

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In the world of sleep, actively learning, educating, empowering, advocating, all of this. And I'm curious to hear how you're managing your own sleep. So we do ask every person that comes on for questions about their sleep. The first one is, what does your nightly sleep routine look like right now?

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Yeah. Well thank you so much for asking.

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I love that. Um, because especially as a person with narcolepsy, um, myself, uh, it's sometimes. It's hard to remember that that's still true. And I need to take care of myself because of course, professionally I'm so driven and wanna do so much. But, you know, taking care of my own mental health and just my narcolepsy.

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Yes. Um, and my sleep is also important. So my nighttime routine, I'd say is um, uh hmm. Uh, gosh, that's a really good question. I guess for me, I have really optimized for my day, and then I'd say around eight or 9:00 PM is when. I really, truly start fading. Yeah. And so that generally means that I'm watching TV and in and out of sleep.

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Um, and then at some point decide to, um, go make my medicine, brush my teeth, and get ready for bed. Um, so it's all for me, honestly, sleep is about the timing of my medication. I take medication twice a night to get a better form of sleep than I would otherwise. Um, sure. Because of my narcolepsy. So, um, my nighttime is very strange I suppose.

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And honestly, um, I do sleep a lot, uh, and um, but then just very much have to prioritize my time so carefully during the day. 'cause it is very limited. And by about eight o'clock I'm kind of like Cinderella, who's left the ball and, you know, turning back into a pumpkin.

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Yes, as you were just speaking, maybe there's an opportunity in the future to do kind of a part two podcast because the truth is I'm very ashamed to say that we have done very little content around narcolepsy, and I'm just curious if you can share a little bit about, just even for yourself as.

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You know, just an example when you say you do need to sleep a lot, like what are some of the hours that we're talking about in case, in case people are listening and saying, oh my God, well maybe, maybe that's me. Maybe you know, if you could just share a little bit about what that looks like.

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Yeah, so well pre-diagnosis it was really, the sleepiness can come on at any time, but it was usually like late afternoon.

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I was really fighting sleepiness after lunch in class, but then it just got worse. Like I said, you know, even waking up in the morning and then feeling tired within. You know, an hour of waking up, that's when the sleepiness was way outta control and, and then looking back, it had really been about six years that that had been developing, and I had just been.

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Fighting and fighting and fighting this invisible weight on my skull, um, for years. And, um, the amount of excuses and everything I'd made was just, um, pretty shocking to realize after how far touch I'd lost with what true wakefulness felt like.

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Yeah.

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Um, so yeah, I think, you know, if anyone has any inclination that maybe they're just.

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You know, uh, too tired or they've been trying to track their sleep and find that tracking hasn't actually improved their, um, their sleepiness. Um, that really to reach out because there's no harm. I think in also learning that you don't have a sleep disorder, you know? Exactly. I sometimes think that we, we think that we have to know exactly before we even go to a doctor to be in a consultation.

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That's not the point. The point is you don't know. And it's something, if it's just to check it off and that you don't have narcolepsy, you don't have sleep apnea, then you know, that's fine. Or maybe you do and, and you could get help. So, um, treatments have been so important for me. I take the medication twice a night.

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I also take a stimulant during the day to help me through the day. Um, and so for now my life is, um. With treatment, I usually still have to take one nap late afternoon. And um, then, um, for the most part I can, with that nap, I have a few more hours, like, you know, maybe like four to six or seven or 8:00 PM like I said is like my second wind.

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Yes. And then once that wind is over, it's over. Um, and. And then I, you know, take a medication twice a night and you know, I have to prioritize so carefully that the first six hours or so of the day, I have to do my most difficult intellectual work because. That's the best time I have though. Yes.

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Yeah. Uh, well, so great that you've, now that you've learned about this, you've gotten this diagnosis and that you're able to then manage, uh, your, your sleep wake as powerfully as possible.

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That's so great that at least now you have that self-awareness. So having said that, our second question is, what does your morning sleep routine look like right now? And we say that because with the thinking that how we start our day can impact our sleep.

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Yeah. I think one of the greatest things that's happening to my, happened to my morning routine is my dog scrappy.

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Um, and so. Um, uh, two things about him. First of all, I was afraid people said, oh, you get a dog, and they'll be up first and they'll be, you know, ready to go out. And that scared me because honestly, my sleep is so sacred that if I'm sleeping, I don't, I don't need a dog to be waking me up because, right. Yeah.

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You know, but he's actually very, he's a pretty good sleeper and he is not a morning dog, which is. Perfect for me. Yeah. Um, and so, um, but, but of course I do need to take him for a walk in the morning, just not at six in the morning. Right. Um, and so when we usually go for a walk around eight, and I think that's been so crucial in general for my general sleep health that I'm getting out and getting that sunlight and, um.

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So that's just been, um, something I always knew was important in general for sleep health, but to prioriti prioritize that it's really taken my dog. 'cause otherwise I would just sit down on my computer and start typing and start working and not do that. So I'm so grateful, um, for scrappy, for, for getting me out in the morning, and I think that's honestly the best and biggest part of my sleep morning routine.

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I love that. Well, fantastic. And we see that all the time with our clients. Just from an optimization perspective, the dog owners are killing it because it's just the need to get themselves physically outside as quickly as possible on the move, getting that light in their eyes and on their skin. I mean, it's just so, so valuable.

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So fantastic. And then our third question would be, what might we see on your nightstand or maybe in your environment?

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Well, you know, I used to not pay much attention to that and I have more recently, you know, made sure I even have a nice mattress and, and I got a bed frame that I just love. That makes me feel happy and, um, trying to make my, my bedroom just a happier place that I like.

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Um. And then on my night sign on my nightstand is really just my medication bottles because I take medication, liquid medication twice a night. So yes, um, you know, I have to kind of get in bed and take my first dose and then halfway through the night or so, um, take my second dose. So that's pretty much all I'm concentrated on that and, and some water.

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Um, because, uh, the most important for me is making sure I get my treatment.

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Yeah, absolutely. Okay, great. And then the last question would be to date, what would you say has made the biggest change to your sleep game? Or said another way, maybe biggest aha moment in managing your sleep?

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Definitely getting diagnosed with a sleep disorder and managing it.

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It was incredible how many things came together that I just didn't even realize had anything to do with each other. Like some of those, uh, hypnagogic hallucinations I was describing, like even thinking of burglar was breaking in. Right? Which, you know, can, that can happen to people that don't have narcolepsy during periods of high stress.

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So when that started happening to me, I actually said to my brother, you know this, I didn't think to bring that up to a doctor. I don't know, I didn't think it was medical, but I told my brother and he said, oh, that happened to me in college, and it'll go away. Ah. And so I just kind of, you know, waited for that to go away.

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And it didn't, I just kept having these strange thinking a cat was scratching me and then realizing I don't own a cat. Um, and so that, that was just another thing that like, I had no idea that was connected to the, to the knee buckling with laughter and to the sleepiness that was taking over my life. Um, slowly but surely.

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So, you know, getting diagnosed, finding community, um, finding treatment was also important.

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Oh, I'm so glad that you found that, and even along your path along the way, just getting some of these, I'm sure well-meaning pieces of advice, but unfortunately, just so many people just not having any real idea of what to look for, what certain red flags might be there, and so the fact that you're helping to disrupt this is just so, so important.

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So having said that, how can people. Follow you be a part of Project Sleep, how can they check out this hotline, maybe get involved, et cetera?

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Yeah, so project sleep.com is our website and um, you know, there are different opportunities from. Having a Rising Voices speaker, speak to your community or, um, getting involved with our advocacy efforts.

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Um, and of course, the helpline is available to anyone on our website. Um, I also, I think I mentioned, I wrote a book about my story living with Narcolepsy. So if people are interested in that, that's available on Amazon. It's called Wide Awake in Dreaming, a Memoir of Narcolepsy. So, um, that can be a good resource.

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Uh, if people are interested, and yeah, you can follow project sleep, uh, or me on any social media. We're, we're out there and sharing as many stories and, um, you know, clips and, uh. Articles as we can.

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So, great. So important. Well, thank you so much for doing this work, getting this information out, organizing all this, using your strengths to really help disrupt this and even from a legislative perspective, so fundamental.

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It really, it's just. So needed. So thank you so much for all that you do and for your time today. Thank you. You've been listening to The Sleep Is A Skill podcast, the top podcast for people who wanna take their sleep skills to the next level. Every Monday, I send out the Sleep Obsessions newsletter, which aims to be one of the most obsessive newsletters on the planet.

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Fun fact, I've never missed a Monday for over five years and counting. And it contains everything that you need to know in the fascinating world of sleep. Head on over to Sleep as a skill.com/newsletter to sign up.