Ep020 & Ep 021: Let's talk about Narcolepsy!--with Julie Flygare
Julie Flygare
with Dr. Yishan Xu
TODAY’S GUEST
Julie Flygare, J.D. is the president & CEO of Project, Sleep, an internationally recognized patient-perspective leader, an accomplished advocate, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. She received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009, focusing on health policy and rare disease drug development. Since receiving a diagnosis of narcolepsy with cataplexy in 2007, Flygare advanced her leadership through speaking engagements, publications, media, collaborations, advocacy initiatives and awareness campaigns. Prior to accepting her current role, Flygare served as President of Project Sleep’s Board of Directors, while also gaining invaluable experience in marketing and philanthropy at the Pancreatic Cancer Action Network and City of Hope. Additionally, she served on the National Institutes of Health’s Sleep Disorders Research Advisory Board from 2012 – 2015.
WHAT WILL WE LEARN
Some common symptoms of Narcolepsy Julie has experienced:
Cataplexy (e.g., knee got “buckled“ or face got flat when feel excited or scared)
Sleep paralysis
Hypnagogic hallucination
Excessive daytime sleepiness (invisible and hard to identify, easily was mistaken as “lack of will power“ or lack of sleep)
Rising voices of narcolepsy program for ppl to share their experiences.
RESOURCES
Connect with Julie Flygare
Instagram: @RemRunner
Twitter: @REM Runner
Facebook: https://www.facebook.com/JulieFlygareAuthor/
Website: www.julieflygare.com
Book & Audiobook: https://www.amazon.com/dp/0988314908/
Connect with Project Sleep
Instagram: @Project_Sleep
Twitter: @Project_Sleep
Facebook: https://www.facebook.com/pg/ProjectSleepAwareness/
Website: project-sleep.com
9/22/2019 World Narcolepsy Day
Support organizations Julie mentioned in Episode 021:
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Transcript
0:00
Hello, welcome to deep into sleep. This is Asian. So I'm curious how many of you have experience with narcolepsy? Or do you know about it? If yourself your friends or some of your family members are dealing with narcolepsy, hopefully today's episode will offer some insight to you. Today we're very happy to have Julie fly here to share with us her own experience with the diagnose treatment and how she live with narcolepsy. Just a little bit background of Julie. So Julie is the President and CEO of project sleep, which is internationally recognized patient perspective leader. She also wrote a book wide awake and dreaming. She received a diagnosis of narcolepsy with cataplexy in 2007. Since then, She was very actively involved in public speaking and Patient Support peer support all over the world. I had the honor to meet her in person during the World sleep conference in Vancouver last year. And project sleep had a booth there to share more of the wonderful work they did. And they had a workshop with a lot of patients diagnosed with narcolepsy to share their experience. It was very touching and inspiring. So let's dive in. Listen to Julie sharing her experience with us.
1:42
Hi, Julie, welcome to deep into sleep.
1:45
Hi, thank you so much for having me.
1:48
So I know you are the founder of project sleep. And I know you are very active in helping people be more aware of all kinds of sleep problems. So can you share a little bit? I'm so curious what gets you into the field of sleep? What makes you so passionate about what you do?
2:09
Yeah, so I was actually in law school and I was studying art law, something completely different when I was diagnosed myself with narcolepsy with cataplexy, and I had been experiencing symptoms for a few years before that. And it took a few years to figure out what those mysterious symptoms actually were. And that included I was definitely sleepy in school, like I was having a hard time with my law school coursework. And also in college, I would go to the bathroom a lot to wake myself up, you know, by doing jumping jacks and pinching myself, but I wasn't necessarily like falling asleep in class every day. So the sleepiness was pretty invisible. I'd say. I was also experiencing times when I was laughing at jokes. My niece started buckling. Like almost some I had poked behind my knees, but no one had. And that always felt very strange. And so as soon as I felt that sensation, I started asking friends, doctors, friends in med school to try to figure out what that could possibly be. Because it was, you know, so peculiar that always when I was laughing, that I was starting to, you know, my knees were buckling. And then my hands were kind of giving out, and my neck was falling. And so I was also having experiences at night time, or if I took a nap during the day where I woke up and heard a burglar breaking into my apartment, and then saw a man come into my bedroom and like, rush towards me with his arms stretched out to my neck, like he was going to strangle me and I couldn't move. And then I would look up again and he wasn't there. And He never had been there. But it felt extremely real. It didn't feel like a dream experience. I'd had plenty of dreams before. And so I was experiencing that, as well. And so all these little pieces during the day and during the night, were happening to me and it took a few years to realize, thankfully, finally, a actually a sports therapist at Boston College where I was in law school. She identified that that that I might have cataplexy with when I was describing that my knees were buckling with laughter. And so then I learned the cataplexy that ni buffle with laughter was a symptom of narcolepsy and realize I was experiencing all the symptoms over a few years. Wow.
4:49
Yeah, some of the symptoms sounds quite scary, actually.
4:53
Oh, extremely scary. You know, so one of the symptoms sleep paralysis and those hypnagogic hallucinations. Those are not unique to narcolepsy, like about a third of people experience those sensations, a feeling like they've woken up, but they can't move their body yet. And it just happens much more frequently and consistently for people with narcolepsy. But it is always interesting when I talked to people that don't have narcolepsy and they, you know, maybe they went through a period where they were sleep deprived. And so they did experience that sleep paralysis, and they'll say, Oh, my god, that was the scariest thing I've ever felt my whole life. And I just kind of have to laugh and say, yeah, that's like happens to me all the time. Wow. Yeah. And the cataplexy. You know, it was really terrifying to, as that got worse from a knee buckling to a complete collapse to the ground, where I couldn't move for 30 seconds to a full minute, but I was conscious in my head and I could hear everything happening around me. I just couldn't move my body was the longest seconds and minutes of my life.
6:00
Wow, yes. Especially happens when you love wins. There's emotion, up and downs. And that sounds quite hard to deal with that you temporarily lose control of your body.
6:14
Right? Yeah, exactly. is extremely, you know, there was one day where my boyfriend at the time he actually had to carry me to bed in his arms. And that felt like a really big low of realizing that I couldn't even walk.
6:31
So it was it was very scary.
6:33
Yeah. So when did you start realizing or noticing these symptoms? Do they just one day suddenly show up?
6:42
I think that cataplexy started around age 21 after I graduated from college, and the hypnagogic, hallucinations and sleep paralysis, you know, that kind of like burglar experience that was around the time. My sleepiness was probably the first symptom I experienced. I look back now at my college experience. I think that I was experiencing some excessive sleepiness, probably starting around 18 years old. But it took a that was just very invisible and hard to identify. So even as it got really, really bad when I was in my first year of law school at age 22, and 23, I thought I actually maybe didn't have like the willpower to get through law school. Like maybe I wasn't determined enough, because I something just wasn't connecting. I wasn't able to get through my coursework. And so it took a really long time to think that maybe that actually had to do a sleepiness or sleep.
7:42
Yeah, so at first you questioned yourself, but then realize their possibly interpretation of that that is out of your control.
7:52
Right. And that's, I think, part of my passion behind you know, founding project sleep is I don't want People have to have to have that experience of like, thinking that they don't have the willpower or they're not strong enough for you know, life or whatever they want to take on in life. Because I think there's kind of two phases. One was my own understanding that like, I need to figure out something was wrong with me. And then once I figured out something was wrong with me, and I started talking to doctors about it, you know, I really am passionate that we need to make sure that primary care doctors and general practitioners are familiar enough to to recommend people that might be experiencing a sleep disorder to see a sleep specialist. So there's kind of like two phases of self realization. And then, you know, once you're in once you're starting to complain, or, you know, bring this up to doctors that they take it seriously and help you get to sleep specialists.
8:49
Yes, yes. I totally agree. I think a lot of time even as a psychologist sometime I see people coming in with bizarre symptoms, just some symptoms. Just like what you described, and if, as a provider no matter in what field, we are able to just at least question it, and ask them to go to maybe seek out help from a sleep specialist just to rule something out, just to clarify the picture that may really point out a good direction for for the patients.
9:25
Definitely, I think, you know, for myself and for a lot of other people with narcolepsy that I've spoken to, you know, I didn't actually I thought I was a good sleeper because I slept. I slept, I could sleep. You know, I think we often think of people with insomnia because it is the most prevalent condition. So you think, Oh, well, and I knew I didn't have and I didn't snore. So I assumed that meant I didn't have sleep apnea, which I now know, isn't necessarily true. But, you know, I thought it was a good sleeper. So I didn't think I you know, that just didn't seem to make sense to me because it was affecting so much of my daytime life as opposed to my Night, you know, so just kind of even a misconception about the fact that something could be happening in your sleep, that you're not getting the right. You're not going through the right sleep cycle and getting the right quality of sleep, no matter how many hours you're getting,
10:14
right. So even if we don't have any difficulties falling asleep or staying asleep, we don't snore does not mean our sleep quality is really good.
10:26
Exactly.
10:28
Yeah. So you mentioned you found a project sleep and want to really help other people's after figuring out your own journey. Can you explain a little bit more what project sleep is? What kind of activities You do?
10:46
Yeah, sure. So I'll just describe to you a little bit that after I was diagnosed, you know, I think was I thought that I thought I was going to start treatment and just like get better. I thought that like, Oh, this is just some small road bump. And that treatment would be like, put me back to normal. And so I think there was also like a second process of realizing that treatments did improve my symptoms, but they didn't erase my symptoms. So I still had symptoms, and I had side effects. And I was balancing all these different medications. And so I actually personally, like reached a low myself, like, psychologically a few months into my diagnosis when I realized, you know, this was a much bigger and more serious condition than I realized, and that's when I got really angry and, and thought, I hate narcolepsy. You know, this is just awful. And I also started to sense that people thought it was woke when I would get up to people and I, you know, I thought narcolepsy is a joke to before I was diagnosed, I didn't know anything about it. And so once I started telling friends, you know, Oh, my gosh, we figured out I have narcolepsy. You know, it was really hard to get their reactions. Some people just changed the subject quickly and other people would take it, like almost like so dramatically like, Oh my god, are you going to fall asleep right now? Like, how about right now? What if you're doing this, so you're going to fall asleep then. And and it was just, it didn't seem to I was slowly realizing, you know, it was a serious chronic condition. And I didn't really have the words to articulate that to the people around me. And, and so I think, you know, in founding project sleep, I, you know, it was a lot more than just the the experience of going a long time without diagnosis. But it was also that our society didn't take narcolepsy very seriously. And I realized it wasn't just narcolepsy. People didn't take sleep very seriously in general. You know, that, that it was something that I know in college for myself, people bragged about pulling all nighters and as I learned about the sleep cycle and how it was so active and all these problem Disease we're taking place at night, I realized we really have some major misconceptions about sleep in general. And so trying to make sleep cool is the tagline of project sleep, and to really open people's eyes to the importance of sleep and also that sleep disorders exist.
13:20
Yeah, I like that to make sleep cool. And starting from educating and talking about narcolepsy, and then I know you're expanding to all type of sleep disorders. And there are a lot of great content right now.
13:35
Yeah, you know, I think there are wonderful organizations in each of the disease areas. So project leads, not trying to recreate the wheel of the great work that those different organizations are doing. But that I think that the patient story, you know, with narcolepsy or with another sleep condition is so important as an educational tool. You know, research actually shows that storytelling is one of the most powerful ways to educate people, as opposed to sometimes I think it's often our inclination to throw facts and figures at people and say, you know, if you don't sleep two hours tomorrow night that, you know, you're going to be this percentage, you know, sleep deprived and, and sometimes, I think that's all meaning, but that we've kind of seen that actually, that some of the scientific facts don't change people's behaviors. And so I hope to be leveraging their projects, six programming, some more storytelling approaches, that can get people to empathize and understand these invisible conditions. And you know, and think maybe they, you know, consider whether they could have one or a loved one could have a sleep disorder. Also just learn more about sleep in general.
14:54
I really like that. I totally agree. I can even I can imagine telling stories. Telling someone's their own experience, can can really connect with other people who are still in the middle of figuring things out or trying to dealing or trying to deal with their own sleep disorders. I think as a provider, we tend to just like you said, throw out the finger to people throughout the, like science to people. But I think a lot of times, like people don't really get it or don't really like it. Right. And so I'm wondering what are some really outstanding stories that you have noticed, to really help other people to really learn or think about narcolepsy differently?
15:49
Yeah, well, so we run the rising voices of narcolepsy program. So we train I've trained over, I'd say over 60 people at this point, it might be even more on how to share their story effectively via speaking or writing great essays online and there are speakers across the country and actually around the world that are even today. One of our speakers is in Canada speaking to a high school class about her experience with narcolepsy. I think some of the stories that you know, that's that stay so close to my heart and kind of break my heart are the long delays to diagnosis. We had one of our rising voices speakers on Capitol Hill with us a few weeks ago, and she presented her story at the congressional briefing that we did. And she shared that it took she was eight years old when she first experienced symptoms. And the very first thing that she experienced was that she saw spider in a door and she got her knees buckled and so she actually assumed she had arachnophobia because everytime spider and felt less surprise Her body became weak. And it became more things that, you know, when she was that when she was always happy, her face would go flat. Because she wasn't able and so these are all little experiences of cataplexy, and it got worse and worse over many, many years. So she actually went 28 years before finding a proper diagnosis.
17:22
Wow. Lexi eight years.
17:26
Yeah. And it just, you know, she's still accomplished so much, and I'm, but at the same time, that struggle is just incomprehensible and comprehensible in a way because she wasn't even able to access treatments yet. And she wasn't able to be part of the community for so many years. So, yeah, there's some great stories and I think my favorite part like, I've told my story and a lot of ways through writing my book, wide awake and dreaming, a memoir of narcolepsy and speaking At different conferences across the country and around the world, but I love training other people on sharing their story because everyone kind of has such unique analogies or different ways of describing how they cope with the condition that it just every single person has such value. And I'm, I kind of love all of their stories. And I'm always constantly, you know, they always are coming into my head and I'm thinking of them and trying to get them more speaking engagements so that they can do such great work.
18:33
That's great. So I'm also happy you you wrote a book about all this, I will put your book on the show notes, so other people can find the link. great conversation with Julie. So this is the first part of my interview with Julie and she shared so many typical symptoms of narcolepsy, such as cataplexy, sleep paralysis happening. goggle hallucination and excessive daytime sleepiness. You can find more information about project sleep and their rising voice of narcolepsy program on their website at Project dash sleep.com. And all this information including a link to Julie's book can be also find our website in the show notes, which is deep into sleep.co forward slash episode four slash 020. Next week, we will continue the conversation and his plan more good resources and support groups all over the world to help people to connect with each other within narcolepsy community. And support is important. The treatment also hopeful so stay tuned. Hopefully the next episode will offer you more great resources. Thank you very much. for listening today, I will see you all next week.
Episode 021
0:00
If you are a parent, have you ever had difficulties waking up your teens in the morning to get them to school? Do you know whether your teens are getting enough sleep? Have you noticed that your teenagers have to sleep a lot during the weekends and just cannot get up because they said they have to catch up on their sleep. California just passed a new law to push school start time later. For example, for high school, the first period to start time is no earlier than 8:30am. And for me those schools no earlier than 8am So what does this do? What does later school start time due to children and teenagers? Why so many sleep specialists are pushing this policy to happen? We have the president of Minnesota sleep society. Julie da here today with us. sharing her insights about later school start time.
1:08
Hi, Julie, welcome to the show.
1:11
Well, thank you for having me. I appreciate it.
1:14
Can you please share with us what do you do day to day, you know, clinical work.
1:19
So I'm a nurse practitioner actually in sleep medicine. I've been in sleep medicine for 17 years now almost. So I clinics that yeah for it. So I focus on all areas of sleep. But I also am a board member for the Minnesota sleep society, which is a board of professional sleep specialist here in the state of Minnesota. And I've been the president for the last two years and our board has been advocating for later start times here actively for the last four years. Although we've had several members who've been working with schools even prior to that, so why
Unknown Speaker 2:00
So you are a very experienced sleep specialist. And you mentioned over the past four years, there has been some focus or interest on this changing school start time for children and teenagers. And what made it happen what makes you passionate or interested in that involved in that topic?
Unknown Speaker 2:23
Well, we looked as a board to figure out what we could do for for the state of Minnesota figuring out where the need is and respect to sleep and there's a lot of issues that go along with sleep sleep disorders, obviously and drowsy driving but we really felt there was a great need for for addressing the lack of sleep in our teenage population. We know a third of adults report insufficient sleep according to the CDC, with two thirds of teenagers actually recording insufficient sleep so so it is a significant need. So that's where we thought we'd put our our efforts.
Unknown Speaker 2:58
Yes, wow. Teenagers actually doubled the amount of report insufficient sleep.
Unknown Speaker 3:07
Yeah, there are a number of different factors that that affected at you know, teenagers it's a they're they're busy are teenagers nowadays. So they are lifestyle definitely different than than when I was a teenager. They're they're involved in many extracurricular activities. But but another factor too is is later start times the electronics that are teenagers do with that that weren't around when I was a teenager. So there's a lot of different factors that that come into play.
Unknown Speaker 3:39
Yeah, definitely. So regarding changing the school start time, for what age group Do you think that we need? Consider that change?
Unknown Speaker 3:51
Sure. It's a good question. And really, we're looking at all teenagers, which includes both middle and high school. Students because what we see when when starting in puberty, what we see is there's a shift actually in their sleep timing. So melatonin which is known as the dark hormone, which secretes at night and helps us signal sleep actually starts to secrete later for teenagers and that starts in early starts in puberty and that continues to shift as teenagers go through puberty. So they really go to bed later and sleep in later and that's that's normal. That's actually natural for teenagers. A lot of people think teenagers are just lazy and they're sleeping in but but they're really just following their own natural body rhythm actual.
Unknown Speaker 4:38
So for teenagers, their natural body rhythm changes as they get into teenage age, and that's totally normal for them to not be able to sleep early and they want sleep in later in the morning.
Unknown Speaker 4:52
Exactly. Teenagers cannot force themselves to go to sleep earlier and parents can't make their teenagers go to sleep. It really is they're just following their their natural biology. Oh, wow.
Unknown Speaker 5:05
Yeah. So I know a lot of teenagers they tend to stay up really late using, you know, social media or the just or doing homework. So you're seeing their part of that is biology's not all just because they don't want to go too bad they're just keeping themselves up.
Unknown Speaker 5:26
Right I think that's part of it. I mean, there's definitely some some good habits we want teenagers to follow and, and you know, start to turn off electronics before bedtime, but I think a lot of people blame the electronics for the teenagers staying up late, but really, they're just naturally up late and what are teenagers going to be doing when they're awake is on their electronics because that's where they are a good portion of the day that's part of their of who they are and how they communicate with each other. So it's understandable that they would be on their phones and on social media, but but we Really want them to really focus on getting eight to 10 hours of sleep and And sadly, you know the majority are not able to obtain that amount of sleep.
Unknown Speaker 6:09
Oh, so yes. So you mentioned teenagers need to get eight to 10 hours of sleep. So that is what is appropriate for this age group.
Unknown Speaker 6:20
Correct?
Unknown Speaker 6:22
From what time to what time does the sleep science would recommend for teenagers? What's the best sleep period?
Unknown Speaker 6:31
Sure. So it's approximate but about 1045 to 8am. So 10:45pm to 8am would be a pretty typical time for teenagers to fall asleep, it's would be difficult to expect them to go to sleep
Unknown Speaker 6:47
much earlier than that.
Unknown Speaker 6:49
I see. So for teenagers, as parents, people should not just expect teens going to go to bed at nine or eight just fall asleep easily.
Unknown Speaker 7:02
No and actually it's really an exercise in frustration to expect teenagers to do that because they like I said biologically can't and, and well meaning parents have know the importance of sleep but but aren't quite as knowledgeable about what that means for teenagers. So they'll have their teenager getting to bed early, but a teenager can, like I said, can't force themselves to fall asleep. So it's about understanding what a teenager needs. They're unlike adults and younger children. We have more malleable sleep schedules, we can shift a little bit easier younger children and adults, but teenagers really, really can't.
Unknown Speaker 7:40
I see some help on the morning time. You mentioned I do time for teenagers who sleep is until 8am. But I know a lot of school start time is much earlier than that so far.
Unknown Speaker 7:54
Yes, that is that is true and our state of Minnesota hears about 85% of our Schools still start before the recommended time with 830. And that's true nationally that that most school starts at 8am. nationally. So there's there's some work that needs to be needs to be done.
Unknown Speaker 8:15
Yes, yes. So I know you had you talked on a TED talk before. And you mentioned in the morning for teenagers, like 7am for them is like 4am for adults. What do you mean by that?
Unknown Speaker 8:33
Exactly. So if we look at the natural sleep rhythm for teenagers and compare it to adults, we're, we're really asking teenagers to wake up so much earlier and it would be like adults waking up at 4am every morning to get to work and expect them to be functioning and you know, so many people talk about, oh, why are teenagers drinking so much caffeine, but really Lot of times we're forcing that upon them. They're just trying to self medicate because they have to wake up so early for, for school that they're just looking for fast ways to get energy and stay awake and alert as much as they can during the day. Hmm.
Unknown Speaker 9:16
Yeah. So if they get up so early ahead of their biological clock, they will feel really sleepy, they may not even get enough sleep.
Unknown Speaker 9:26
Exactly. That is right. And we're not a lot of people will say, oh, we're coddling them and you know, they need to suck up and get ready for being adults. But But really, we're not we're actually and we'll some of the studies we'll we'll figure this out a little bit is that we're actually, you know, not doing them any justice by having them get up early. And, you know, according to the data, we haven't dove into that yet, but that's Yeah, when we let kids sleep later, again, following their own natural rhythm, we see benefits.
Unknown Speaker 9:56
Yeah. So let's talk about the benefit because I'm really curious. I No right for all this policies, this movement, people trying to allow sleep specialists are trying to encourage schools to push the start time to a later time, like you said the recommended 8:30am. What are some benefit if that really happened?
Unknown Speaker 10:20
Sure. So there was a large study done through the University of Minnesota actually 2014 with over 9000 students, and that involved over five different districts in it. And it wasn't unique only to Minnesota. The researcher evaluated other schools as well across the country, and they all had varied start times and they found that those students who started later had improved attendance and better mental health. There was less substance use. And even in in some of those districts, too, we saw less car accidents, and better grades two.
Unknown Speaker 10:58
Wow, that's really cool. Many different domains, the safety concerns, academic performance, the school attendance, and the mental health component. It's all get impacted.
Unknown Speaker 11:15
Yeah, I think for me, the mental health piece is so imperative I people need to realize that teenagers are going through a really, you know, time where their brain is still developing that sort of feeling emotional part of the brain, they're a big villas is developing slower than their prefrontal cortex is still developing as well. So a lot of times they, they, you know, they act on impulse, and their actions are getting more by emotion and less by logic. And what people need to know is that is worsened when they're not getting enough sleep. So we see that issue with poor judgment and You know, the lack of ability to sort of manage the mood as well, you know, having, and that creates tension with peers and parents. So we really need to pay attention to improving their mood because we're really setting them up for a lifetime of good health, including mental health. So if we can give them the sleep they need early on, that'll help guide them through through life. Really?
Unknown Speaker 12:23
Yeah. So sounds like the amount of sleep is closely related to their mood and how impulsive so you could get.
Unknown Speaker 12:34
Yeah, it's, it's really a bi directional relationship when we talk about sleep and depression. So in the past, I thought, well, if you're not getting enough sleep, you're getting depressed, but it goes vice versa. So if people are depressed, they're not going to sleep as well. And that's actually good news. Because what that means is, is that, you know, we have a modifiable risk factor here. If we can allow our children to get the sleep that they needed, the timing that their body needs that sleep. We can decrease the risk of of a depression and anxiety and other mental health issues and substance use. Ah, that's a big one too. You know, so many parents talk to kids about, Oh, don't drink and drive. But when we talk about, you know, lack of sleep and driving, it's huge when you look at poor reaction time and taking more risks. It's just as detrimental to drive while sleep deprived as it is to drive. Well. All right. Yeah. So while you're sleep deprived, the drowsy driving is as harmful as drunk driving, right? Absolutely. Yes. Yes. And that's, you know, why we saw I believe, in some of the research that we saw that improvement in less car accidents is in the different communities, actually in in one community where the exit rate for teenagers dropped actually by 16.5% That's a lot. Yeah. Where the where the in the district where the school Start Time went later, but it increased actually in the rest of the state by 7.8%. And so yeah, it's it's it's impressive that the data honestly is really indisputable. I mean, decades worth of research that's showing us which is why the, you know, American Academy of sleep medicine put out a policy statement now, that was back in 2014, calling this a public health issue and calling for, for all schools for middle and high schools to start, you know, date 30 years later. So,
Unknown Speaker 14:32
right, I know California is really pushing it right now and get the policy out. So hopefully, it's going to happen across the whole California State within two years.
Unknown Speaker 14:45
Yes, I am so delighted to hear that. I'm just tickled honestly to hear that. The state has taken that sort of effort to cut because it does take a lot of effort. There's implementation and scheduling issues that play a role that needs to be, you know, attended to, but for a whole state to to really address and put Student Health First is huge. So to California. Thank you.
Unknown Speaker 15:14
Yeah. So I'm wondering across whole United States right now, how many states actually are doing that or seriously considering that.
Unknown Speaker 15:24
As far as the mandate? Well, I think you're going to find a lot of different type of legislation out there in and we in Minnesota here a couple years ago, looked at legislation, and I'm sure will, again, we're looking for the right legislator to help us move that forward. I think, you know, just recently in the, in Pennsylvania, you saw they developed an advisory committee, and that was made up of, you know, those in legislation, medical field school, they all got together and said, hey, let's talk about this issue and They came out with a calling for later start times in that state. And and they said that the evidence to move to healthier start times is really achievable. I think. I think sometimes when people are approached with this issue they think this is it's not doable, but I can tell you here in Minnesota, we know that it is we've seen it for decades how, how much improvement we've seen in our, in our students, even even if you talk to the custodial staff, they'll say, just the start of the day from when school started early compared to when it started later that it's just a commerce start to the day there's less coffee cups strewn about in the in the school and, and so it's it's impressive to see it. I think the word is just getting out. More and more.
Unknown Speaker 16:49
Yeah, and it's amazing that we can start seeing all these consequences what happened after school actually start later.
Unknown Speaker 16:59
Yeah, I think One one big piece I don't know if people quite understand as much as as I would like them to is that it's not always just about the amount of sleep the timing of sleep. What we saw when we adjusted school start times is that kids did sleep more I think that's a common misconception is people say, oh, they'll just teenagers will just stay up later and and sleep in. But but they don't, they actually do get more sleep and they require less weekend sleep. So that's a marker that we use. That indicates you know, if they're getting adequate sleep during the week, then they don't need as much sleep in sleep on the weekends. So it's that timing of sleep. That's so important. We want to go to bed at a time everybody wants to go to bed and wake up at a time our body is ready and refreshed.
Unknown Speaker 17:45
Wow, that's very important to know. I would assume a lot of parents or teachers will have the same worries right? If you just let them have the choice to sleep in the morning. They may just do whatever and night But sounds like actually teenagers, they really use the time to catch up on sleep. So they accumulate less sleep that they don't have to sleep as much during the weekends.
Unknown Speaker 18:15
Right. Right. Exactly. And, you know, I think any program that that is looking at later school start time, whether it be you know, legislation or individual schools really needs to be
Unknown Speaker 18:30
combined with good education about what are good sleep habits, you know, allowing enough time for sleep
Unknown Speaker 18:37
You know, allowing your body to fall but go to sleep the same time and get up at the same time every day. You know, avoiding caffeine and all those different issues that affect your sleep at night exercising too late. So you really need a combined education program along with a leader school start time but but yeah, in general, teenagers do naturally get more sleep.
Unknown Speaker 19:00
Yes, I like what you just mentioned the education piece. So I want to ask a little bit more of that. So the audience no matter they are teenagers, or parents who are listening right now, I want them to learn a little bit more. So if let's say if a state incorporates the policy and the school start time, get pushed later at night, what teenagers or parents should be aware of what are some good habits or some, like several of the good things they really need, you know, practice.
Unknown Speaker 19:38
Sure, so So like I said, you need to allow enough time for sleep. And I think that's, you know, it's if you're waking up with an alarm clock, then by definition, you're actually sleep deprived. So it's important to be able to allow your body enough time to be able to get the sleep that it needs. Parents need to watch for science and math. adequate sleep for teenagers that might be, you know, grumpiness, it might not always be, you know, obvious signs of being tired, but that's obviously part of it too. It might be poor grades. For younger children assignment, they're not getting adequate sleep, it can be actually that they get hyperactive. So you really need to be aware. That's why I say education is so important to help people decide what's a priority in their family, you know, good time management, like I said, Our kids are, are over scheduled to a certain degree. So it's, you know, you might need to adjust priorities and make sure that you make sleep, one of those priorities.
Unknown Speaker 20:41
Yes. So is there any advice on you know, electronic usage to to help protect this, enough sleep time or sleep opportunities?
Unknown Speaker 20:55
Yes, certainly having a wind down period is important and what I mean by that is You know, an hour or two before bed you need to start winding down and part of that winding down is dimming the light. And ideally putting down those electronics at the very least there are usually most most electronics have a blue light filter that you can set our children you know set their alarm clock, transitioning to sleep. And there's blue blocker like there's glasses so people can wear those as well which will block the bright light if you do need to be on your electronic for homework or what have you. So and really bedrooms I think are the other big thing is bedrooms should really just be that it should just be a room with a bed and no electronics there if if at all possible.
Unknown Speaker 21:44
I see. So one down and the keep bedroom just for sleep. Exactly.
Unknown Speaker 21:51
Exactly. And you know, I'd also say that it's important to get physical activity I mean exercise and sleep go hand in hand. So That would be an end. Getting bright light in the morning is huge if you can combine that activity with bright light in the morning because that can reset that clock every morning is it's super helpful.
Unknown Speaker 22:12
I see. That's great advice. So regarding you just mentioned for teenagers, if they need alarm clock to wake up in the morning, they may not get enough sleep. Right.
Unknown Speaker 22:27
Right. Exactly.
Unknown Speaker 22:30
Yeah, because I heard about that kind of scene for children before. I never realized that may be the case for teenagers also, because I know a lot of teenagers. They have some kind of evening tendencies and a lot of them do need a lot of alarms even parents to to get them up. It's really difficult to get them up in the morning. And what if a teenager is a natural night owl do they also like the other Alarm indicates some kind of sleep deprivation or there are other explanations. I want
Unknown Speaker 23:06
to be clear that all teenagers by nature are night owls, some of them have had what we would call delayed sleep phase where it's might even be later than the average teenager. So, you know, those teenagers might even have a more difficult time getting to bed at a reasonable time and waking up, but I don't want to say reasonable, I guess what, what conventionally we see as as a time to wake up for school? So, so, you know, there can be sleep disorders that are involved that can make that night shift even even later? I see.
Unknown Speaker 23:41
Yes. So parents should really watch out and understand what's what's happening. What's really going on with their teenagers regarding sleep
Unknown Speaker 23:50
with their child. Yeah, and I think I always want to talk about naps because people talk about you know, how about how about napping, you know, instead of changing school start time, how about we You know, make sure there's time for that. You know, I think naps are certainly important and they're excellent for good memory and concentration. I think they become a problem when kids are napping during school because they haven't been able to get the amount of sleep that they needed. Because then you're obviously can't learn if your heads down on your desk and and I think, you know, when I start to hear about people telling me they're teenagers are napping on a regular basis. I, again, that can be helpful, but the first thing I look at was, how are they sleeping at night? And are they getting the sleep they need? You know, achieving at night?
Unknown Speaker 24:38
Right? Right. So that's another indicator. Regarding nap. That's such a good topic. I see a lot of teenagers they take naps right after school but for many hours
Unknown Speaker 24:50
Mm hmm. Yeah. And and see that goes into playing then they have a hard time, even a harder time going to sleep at night when they're, you know, it pushes off that that nighttime sleep Even more so. So that can be the danger of of napping. So ideally, if you do need to nap, it's a shorter nap, you know, 2030 minutes, ideally,
Unknown Speaker 25:10
yes. How is there any way to make that happen? I know some teams, they can, they can manage that and set alarm clock, some of them just gonna, you know, won't be able to be woken up or parents as they're not home, or they are not willing to get up during the nap. So it ended up to be a longer nap. And of course at night they they have difficulties for sleep.
Unknown Speaker 25:38
Right now, you're right. I mean, it does take it takes an effort to educate teens themselves. And I think if you you, you know, come at it from a direction of this is going to help you with your relationships and your schooling. I think teaching teenagers to help themselves is helpful. I think one of the hardest things to do is get your teenager up on the weekend. Because, like I said, you really want to avoid that what we call social jetlag, where they're sleeping in more on the weekends. And, and I think sometimes parents, like, Oh, I'm going to be nice to them and let them sleep in on the weekend, since they didn't get enough sleep over the weekend, but, or during the course of the week, but really, you want to try and keep that sleep, you know, within an hour or, you know, within a couple hours of when they were getting up for school, having them get up on the weekends, within a couple hours from when they're getting up for school. So that, again, you don't have that shift every weekend. It's like, it's like, you know, getting on a flight and traveling every weekend. And then when Monday comes back, oh, I gotta I gotta wake up so early, and that's difficult. So the more you can encourage teenagers to
Unknown Speaker 26:45
to try to minimize that and get to bed at a decent time.
Unknown Speaker 26:51
It's, it's helpful, but it's a challenge. I'll admit I've met teenagers myself. So it is a challenge.
Unknown Speaker 26:58
Yes, yes. This is really a good point for parents and teenagers to to keep in mind that normal like weekdays and weekends the wake up time, better to be relatively consistent not too much later during the weekend or else social jetlag may happen. So Monday morning, they may feel really negatively.
Unknown Speaker 27:24
Exactly.
Unknown Speaker 27:26
Great. Also, if you know I know a lot of states right now, a lot of schools don't have this. This school time start time changed. So when teenagers have to get up really early to go to school, is there anything parents and teens can really do to support themselves better when the environment is not changed?
Unknown Speaker 27:56
Um, well, like I said, some of those him sites I talked about earlier as far as you know, getting physically active and because that'll help your sleep at night avoiding the bright light. There's, you know, those are the things you can do and and I think when I talk to schools, they'll say, oh, we'll just we'll work on on these habits. But but really honestly, the best thing you can do is encourage your school to move to later start times. And that's
Unknown Speaker 28:25
because that's really what's going to help that's going to have the biggest impact
Unknown Speaker 28:30
in your community is really,
Unknown Speaker 28:35
you know, it's it's really counterproductive for us to send our kids to school early is that they're not going to learn as well as if they're well rested. So
Unknown Speaker 28:45
yes, so sounds like the policy change. It's so necessary. We really want slowly push it to hopefully, eventually all schools will adopt this kind of new policy to really help with our children. And teenagers to to get more and more sleep
Unknown Speaker 29:04
yes and there's more and more school administrators who are who are who are looking at doing that you know putting the needs of those students first and it does take strong leadership and and good communication because you want to look at the situation from all sides and and you know find a compromise it's going to work for for everyone and you know common issues that we hear about or or you know schedules obviously is a big thing but you know sports for sure. But people are more people are coming to to find that, you know, actually sleep improves sports performance. You know, sports are such a big part of any any community but teen athletes who sleep longer, they have improved reaction time and they made less errors. We found that there's a risk of less injury when teenagers are sleeping better. So And like you said, hopefully, you know, many districts will do this and then that eliminates that issue. And, you know, you're working with different divisional schools and some have later start times and some eberly start time still, but if everyone goes to later start times you can, you know, you know, resolve some that scheduling stuff that comes up. Yes, later start times. Uh huh.
Unknown Speaker 30:21
Yeah. And sounds like even for sports for athletes, because I know a lot of children's teenagers are involved in some kind of sports. And especially for those more professional athletes. They sleep plays such a big role. And when you brought that
Unknown Speaker 30:38
up, it's such a good point, because there's so many professional teams now that are actually hiring sleep specialists to help their players on a professional level. So, again, this is becoming more and more you know, in the past sports was one thing that that would, would serve to block this effort. But I think more and more people Understanding actually improves sleep actually helps in the sports performance. So,
Unknown Speaker 31:05
yes, definitely. That's that's very good point to mention. That's exactly sending us this signal that how important sleep is for performance such as, as lists, professional performance. Mm hmm.
Unknown Speaker 31:23
Right,
Unknown Speaker 31:23
exactly. What if we start school later, like 830 or later, then how many more minutes we may actually gave our children and teens to make all this positive impact happen?
Unknown Speaker 31:43
Well, there's been so many different studies, so it's hard to answer that, you know, with a specific time because there's so many different studies that adjusted their start time, even by as little as 15 minutes, somebody almost an hour. I think that the most recent studies Here is what it's done in the Seattle School District, where they went from a 7:50am Start Time to an 8:45am start time, so nearly an hour later and, and students slept about half hour more in that situation. Students also had improved grades, less tardiness and less absences from school.
Unknown Speaker 32:22
I see. So for the school star time, we are not looking to get children or teens, like hours, hours more sleep, even, like half an hour or less can still make quite an improvement in a lot of areas.
Unknown Speaker 32:41
Absolutely. Absolutely.
Unknown Speaker 32:44
Yeah, that's good to know.
Unknown Speaker 32:47
So another topic that typically comes up when we're talking about implementing later start times is busing and this is an issue that's not unique to school start times you know, busing issues in schools come up with Any sort of boundary redistricting or if they open or close a school, so I want to make sure that it The reality is really adjusting busing can involve more cost to a school district. other districts can actually save money by adjusting their bus schedule and and many schools can adjust their busing in a cost neutral fashion. So one of the largest districts in the country, Fairfax, Virginia with over 57,000 teenagers, they adjusted their their busing schedule, so so it can be done. It just takes a little time and effort obviously to to do that.
Unknown Speaker 33:43
So that's another thing school system need to consider.
Unknown Speaker 33:47
Exactly, exactly. And one strategy that some schools will use that we've found here in Minnesota is they'll flip the bus schedules. So oftentimes teenagers are the one ones Going to school, the, at the earliest events, the young children that are going to school later. So they'll fit the schedule. So the younger children will go to school then on the earlier bus schedules. So I think that has been a some concern for parents saying, Oh, is it too early for, for those children. And I think, you know, for the most part, like I said, they are definitely younger children are more malleable, they're more malleable sleep schedules, we still want to see them able to obtain about, you know, kids under 10 required 10 hours of sleep is are the standard that we look for. So, you know, there is a certain time that could be too early for them as well. So it goes back to that compromising, you know, on a community level to try and figure out how are we going to, to manage and get everyone to sleep that they need, but young children like I said, are very alert. In the morning if you've had young children, you know, they're up and ready to, you know, eat their breakfast early where you got the teenagers who are like vampires and they're covering their eyes. They don't want to wake up too early. So it's just taking advantage of
Unknown Speaker 35:06
that. I like the metaphors I think that make a lot of sense. That different age group the they go to bed at different lanes that are body clock differently. They they wake up reacting differently. So overall, there's a way right we can all figure that out to to schedule it around to make it fit most children teams schedule.
Unknown Speaker 35:29
Right, exactly. And people don't realize that because younger children there's some studies I've seen that younger children are more sensitive to light at night. So you know, really so important for those young children at night to start, you know, turning down the lights and, you know, having a quiet and darker sort of setting because they're so sensitive to that bright light at night. I've seen I've seen Paris Who will, you know have their kids brush their teeth, take a bath, read them a book, and then they'll hand them an iPad when they get into bed at night to you know, want to play a game before they go to bed and and just off it's just cringe worthy for me because I feel like I'm done all that good stuff that you did with the bath and the reading and the dim light and then you know you've handed them this this this tool that's going to actually worsen their sleep so right wow so education is so important because those parents possibly have no idea they are and doing all this good stuff. They saw that they are adding the last nice piece to make the wind down great. right but actually they're pushing off that that melatonin and the sleep in general so so yeah, you're right education is is key.
Unknown Speaker 36:51
Yeah. Is there any good resources? You are you know, your county is putting together We're parents can find more information if they want to learn more about this topic want to you know get get more guidance?
Unknown Speaker 37:08
Oh yeah there's tons of good information out there we have a for the Minnesota sleep society we have it immensely. NET we have a team sleep loss toolkit which which has a section specifically for parents that will go through the different sleep topics and sleep good sleep habits and why you want to adjust to improving their sleep also, start school later is a fabulous resource for information for for maybe individuals and school districts who would like to help their school start later. The American Academy of sleep medicine under your sleep, I can add all this links to the show notes so people will have them if there's anyone listening who is a, you know, teacher or looking for curriculum kits. health.org classroom is really great. They have tons of good sleep resources and sleep diaries and activities for children to do to learn more about sleep. So yeah, there's tons of information out there, I can send you these links. Yes,
Unknown Speaker 38:16
yes, definitely done will be very helpful. Yes. So our time come to an end, I just want you to know, is there anything else you want to add anything else you want, as audience know, regarding this very important topic?
Unknown Speaker 38:38
I think, you know, I, whenever we
Unknown Speaker 38:42
kind of circle back to this issue, I think I want to ask, you know, individuals to really value sleep for themselves and for their family. So paying attention to oftentimes adults themselves aren't getting the recommended amount of sleep. So now to translate that to their children. So I asked people to ask themselves the hard question. You know, are they putting their electronics away before bed? Are they valuing sleep can they make the time and effort to value sleep for for their community for for, you know, children and teenagers in in the future to sort of set them up for this good sleep habits into their adult lives for a good a better health trajectory.
Unknown Speaker 39:23
That's wonderful. I think that can make a lot of people start thinking right to really think about ourself and then how we impact our family and are we taking good care of ourself?
Unknown Speaker 39:35
You know, in summary that teenagers are sleep deprived and the research is indisputable, later start times can improve sleep and you know, teenager do sleep more. And what we find is that improve sleep decreases the risk of substance use and mental health issues. And really improving sleep requires engagement on the part of of everyone really teenagers, families. communities to really see a positive change.
Unknown Speaker 40:03
So wonderful information shared by Julie doll the current president of Minnesota sleep society about later school start time. Just like what she pointed out. There has been so many research showing such positive impact of later school start time to our children and teenagers across all areas of functioning, mental health and physical health. So hopefully, all school districts when they in United States will be able to incorporate such policy to help teenagers and children get better and more sleep. Currently, I serve as a committee member in the outreach department within society of behavioral Sleep Medicine. We are composing some useful resources and the informations and writing blog articles to elaborate on this important topic of later school start time you can find all this great information on today's show note deeper into sleep.co forward slash episode four slash 014. Let's work together to make everyone sleep better. Thank you for today's journey together and I will see you next week.
Transcribed by https://otter.ai
