NFL Player Josh Andrews on Playing Professional Football with a Narcolepsy Diagnosis

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katie Peters, and this is the Brain & Life Podcast.

Dr. Correa:
So, some of us are probably hearing in loop that NFL intro music. We are fully into the fall football season. Katie, did you enjoy our episode with Cam Heyward?

Dr. Peters:
I thought it was a touchdown and a field goal. I'll say a touchdown. Yes. I'm so pumped up for the football season and having Cam Heyward join us from the Steelers was a great start to the season. I have to give a big shout out to one of my favorite neurologists, Dr. Joel Morgenlander here at Duke. He's a huge Steelers fan, always wears his button. I know he's going to be tuning in to that particular podcast, so thank you, Dr. Morgenlander and thank you, Cam Heyward.

Dr. Correa:
Well, we love featuring a variety of individuals who are experiencing or engaging with our community or different neurologic conditions in various ways. And this week, no matter what team you cheer for, I like to support particularly some of the players who have shared their own stories of overcoming adversity in their lives or even other medical conditions that they themselves or their family has experienced. And this week we bring you an interview with retired NFL player, Josh Andrews. He shares with us his story of his path to the NFL, but also how he was diagnosed with narcolepsy while playing in the NFL, and then got back to the field after the support with his medical team.
Katie, I'm not sure that I can imagine getting a hard workout done after a night of poor sleep from working in the hospital. I don't know how he experienced and the possible challenges he encountered when he experienced the start of his condition and symptoms. What about you? I mean are you out there getting in a full workout after a long night at work?

Dr. Peters:
It's very, very, very challenging. I'd say that usually it's like come home and go to second shift and fall asleep in front of the TV. So that's usually what happens. So I have to give him a lot of credit with dealing with that condition, and I can't wait to hear more about it.

Dr. Correa:
Yeah. So, no matter what end condition anyone lives with, the importance of sleep for how well we function, our body and brain, is essential. So make sure you stay tuned after our discussion with Josh Andrews for our medical expert, Dr. Andrew Spector, who helps us understand some of the differences between different sleep disorders. So, it's not just narcolepsy, we cover a whole variety, and how they can be diagnosed and treated.
Welcome back or welcome to the Brain & Life Podcast. Now, this week we're in the middle of NFL season. You may be figuring out your Fantasy Football picks for the weekend, and our next guest may not have specific recommendations, but is a retired NFL player, Josh Andrews, a former offensive lineman known for playing his college football years at Oregon State and his NFL time with a whole variety of teams including the Eagles, the Minnesota Vikings, and Indianapolis Colts. Today he's here with us also to share his experience as a person living with narcolepsy. Thank you so much, Josh, for joining us.

Josh Andrews:
Yeah, yeah. Thank you for having me, Daniel. It's a pleasure.

Dr. Correa:
So, let's start really at the beginning. We lead in, and of course you're introduced as an NFL player, but who is Josh Andrews beyond the NFL football and, as we brought up, your sleep diagnosis?

Josh Andrews:
Well, I'm a husband to Amber, my wife, father of three, man deep in his faith. God is part of my life and something that has just carried me through all the things that I've been through in my life. So I feel like those are the main things that I would say that I am other than football. Yeah.

Dr. Correa:
And when we take it all the way back, maybe when you were growing up and figuring out, playing on the field, did you already know at that time that you wanted to play in the pros? Or what were you thinking about for your own future?

Josh Andrews:
Man, that's a great question. It didn't really cross my mind that I was going to play in the NFL until I got to college. Growing up, me and my brothers were basketball players. My mom would take us to tournaments, rec league, basketball. I feel like that was a huge part of our lives growing up, and I didn't really play football until I got to high school.

Dr. Correa:
And were the things about your upbringing or your family that really felt like it prepared you to be ready, not just for college, but really making decisions for your life in college?

Josh Andrews:
I didn't have my father in my life. You know what I mean? My mom raised all three of my brothers by herself. So, for a lot of the mentorships and things that I've learned came from my coaches, as well as my mom. But my coaches growing up, my teachers that I had were a huge part of my life growing up. My brothers too, they showed me a lot of things that I didn't really know not having a father growing up.

Dr. Correa:
Yeah. There's only 1.6% of college athletes, football athletes that get into the NFL. And you originally were undrafted and signed with the Philadelphia Eagles. What really pushed you forward to persist despite the really challenging odds of getting into the pros?

Josh Andrews:
Honestly, I didn't really have an idea what I wanted to do after I was done playing. So, I felt like I just went all in on football. And for me, that was just doing whatever it took to play at a high level or to be a great teammate, to show value, that I belonged at that high of a level. That's something that I pride myself on and something that I feel like I needed to do to get ahead.

Dr. Correa:
So you started your NFL career with the Eagles in 2014. You retired just last year. You moved a few times between different teams. During that time, were you already having some challenges with your sleep? Or when did things start to change some for you?

Josh Andrews:
Yeah, I feel like I've had challenges with my sleep ever since middle school. You know what I mean? I just remember going to AE tournaments with my mom in the car and being passed out in the car and thinking it was completely normal because we were so active that that was my time to rest, time to get my energy back. And then once we got to a place, I'd be full of energy and ready to go.
And it didn't really click to me that it wasn't normal until a lot of my friends were telling me that at that time, like, "Man, you're super tired. You shouldn't be sleeping that much." To me, I paid it no mind. You know what I mean? That's just how I was ingrained that I was. You know what I mean? That was my norm to me. Even in high school, I would be falling asleep in class and I felt like I was a good enough student to where I was like, okay, I can get things done, or I knew what I needed to do to make it by, but by no means was I a great student, you know what I mean? And even in my senior high school, I fell asleep at the wheel driving.

Dr. Correa:
Oh, wow.

Josh Andrews:
Yeah. Yeah, it was right after school, it was my senior year, about to go to college. I had committed to Oregon State at that point and I was going to go get my hair cut. This was probably three months before school was done, and I ran right into the back of this lady, fell asleep at the wheel, ran into the back of this lady, totaled my car. She was fine, you know what I mean? But at that time I was like, "Man, paid no mind." You know what I mean? I felt like it was just a coincidence that it happened. I usually take a nap after school, so for me, I'm like, man, I just fell asleep. It was an accident. So, yeah.

Dr. Correa:
Yeah. I mean some people might wonder, okay, you're a teenager, middle school, high school. Were you this sleepy even having a good sleep schedule and going and trying to get to bed at normal times? Or were you staying up all night playing video games and-

Josh Andrews:
Nah, I slept normal. You know what I mean? I feel like I didn't stay up late at night and I feel like I wasn't a partier in high school by no means, or of course I played video games, like any kid would at that time, but nothing out the norm. I wouldn't be up all night partying or being up just playing video games all night. So I lived a pretty normal high school life, and I felt like it didn't really hit me that something was wrong until I was putting other people's life in danger. You know what I mean?
Fast forward to college, yeah, I would play football, I got by because they invest so much time into us to make sure we're doing good in school with study hall and tutors and things like that. But I was still falling asleep in class at that point, but I would get my stuff done. I knew what I needed to do to get done just because I've been doing it for so long or surviving so long at that point to where I'm like, "Okay, I know what I need to get done. Even if I do fall asleep in class, I need to study more later on the day or times where I'm not sleepy."
And go back to putting other people in harm's way, that's when I took it seriously. Me and my wife, Amber, this was my rookie year in the NFL. We were driving, came back, I think it was the by week of my first year, came back home. We were driving to go meet her parents somewhere and we were driving on a two-lane road out in the middle of Oregon somewhere. And me being stubborn, I'm like, okay, I was a little tired. I'm like, "I think I can do this. I can get to where I need to go." You know what I mean? And sure enough, I almost drove both of us off the road. And I felt like at that time, it clicked to me like, okay, there's something wrong with me. You know what I mean? And I feel like I need to get checked out just because I could have killed my wife, my now wife at that point. You know what I mean? We could have both been gone because we drove off the road, and that's me being stubborn for not really wanting to get checked out.

Dr. Correa:
For a variety of sleep disorders, there's a big difference between when you're just not having good sleep hygiene, staying up all night, playing, partying, whatever. We all have a responsibility in those settings to make sure we get the right rest afterwards, whether it's related to our job or driving and so on. So that way we're safe. But you, as you said, I mean other than exercise, so your body needed the recovery a little more, you were trying to get normal sleep. And so, when you did end up finding out what the sleep study showed when you got tested in college, what did they tell you at that time?

Josh Andrews:
Well, they said I didn't have sleep apnea. So I was like, "Okay, cool. I'm going back to school. I'm going about my day. I don't have sleep apnea." Tell my mom that. And everything was good at that, you know what I mean? Maybe at that point I was young. I wasn't persistent enough of like, "Okay, all right, I'm good." I didn't really take any further steps to be like, "No, there's something still wrong." You know what I mean? I was like, "Okay, cool. I'm going to go about my day." I don't have sleep apnea, so I think I'm okay. At that point, I was young college student. I don't really need any further testing at that point.

Dr. Correa:
Yeah. I mean it was, I'm sure, probably reassuring to you and your mom at the time, you didn't necessarily have an answer, but you were operating well. You probably just were more cautious about driving when you were at that point, and we'll review it, but there are some unique characteristics that need to be looked at. And sometimes even the idea of these other types of sleep disorders that aren't disordered breathing, they have to really be considered by the doctors who are looking at the test to be able to pick that out. It's a little more challenging than just seeing an abnormal breathing in the oxygen change. So, you were playing in the NFL and moving from city to city between 2014, 2023. What changed at some point that really made you think, "I need to go back to see the doctors and figure out a little more what's going on?"

Josh Andrews:
Yeah. So I made an agreement with Amber. She knew that I snored really loud, you know what I mean? So for me, she was like, okay, after that whole incident with us almost driving off the road, I made an agreement with her that if I had my tonsils taken out and the acetal plastic surgeon would basically open the airway in my nose and take my tonsils out so I could see if that would improve my sleep quality, and it didn't. And the agreement was if that didn't help, we would have to get another sleep study done. And I was like, okay, that didn't help. Got another sleep study done.
And then at that point, I was in Philadelphia, you know what I mean? I had the best resources in the world at that point. The NFL, they would let me go see any doctor in the world. At that point, I went to go see a doctor in Philadelphia at the Penn Sleep Center and it was one of the better sleep centers in the country at that point. And Dr. Anthony Rothstein was the doctor. I just met with him last year too, just because I went back to Philadelphia. And he was just saying, I did another sleep study and then I did the multilatency test, the second test basically, sleepover overnight and the next day they do put you through five series of 15-minute naps.
And the first nap, I was like, "That was only 15 minutes. I thought I was asleep for an hour and a half, two hours." You know what I mean? Did that five times. And the doctor, basically he was saying that you went into REM all five times right away, which is an indication that you have narcolepsy or some type of sleep disorder. And it ended up being narcolepsy with cataplexy. You know what I mean? That's why I went into REM so many times.
So at that point I was like, yeah, you for sure have narcolepsy, and it made sense. You know what I mean? Just thinking back till I was 12 years old, all the things that I've experienced. Okay, that's the best answer for it. And just talking with him, the doctor was like, "Yeah, you for sure have narcolepsy just by what you're describing and what you're feeling." And so I was like, man, it was kind of a surreal moment just because, yes, I got a diagnosis, but at that point I was like, man, my perception, narcolepsy was all negative.
I just think of movies that I've seen, TV shows, and it's all like you fall asleep at the table, you fall asleep standing up. And that wasn't the case for me. It was just times where I feel like it was sleep attacks. You know what I mean? I feel like that's the best way to... At the most inconvenient times is where I felt sleepy or when I'm in the car, passenger, you know what I mean? Sometimes driving, you know what I mean? And it's just something I was like, man, that's something I didn't really want to be associated with. So I kept it under wraps. I definitely did. So, yeah.

Dr. Correa:
And when the doctor mentioned that word, cataplexy, to you and described some of the different symptoms that related it, what connected for you that you felt like, "Oh, I've experienced something like that?"

Josh Andrews:
When I'm trying to wake up from naps, I feel like I'm just paralyzed sometimes. That was something that I was experienced from a young age where I'd be in asleep or in the car where I'm trying to wake up out of a sleep and I feel like I'm just stuck, like I'm still asleep, but I'm trying my hardest to wake up from something and I can't.
Or sometimes I'll laugh and I'm like, oh, I just buckled a little bit. You know what I mean? Or I feel like those are the just really high emotions where I'm like, okay, something's off. I feel like I'm getting weak a little bit, but nothing crazy to where I was falling down or losing my balance. It was just little things like that where I'm like, okay, that makes sense that I have cataplexy with narcolepsy.

Dr. Correa:
And some people are going to wonder, we talk about you played football for many years, you played for the NFL, when you were growing up in high school, college football, or your pro years, did you have any big head injuries or injuries to your spine? Or how was your injury history with your playing career?

Josh Andrews:
Yeah, I had a couple of concussions. Nothing crazy though. Feel like the worst one I had was in college where I got dazed a little bit and I had to take probably a week off before I started playing again. But other than that, nothing crazy. You know what I mean? I think in NFL, I had one too, but I was fine, but it was just precautionary just because of all the things that were going on with the head injuries and stuff. So, I felt like they were trying to be more cautionary of letting me go back on the field, but I didn't really have any crazy brain injuries or things that were significant enough to me like, okay, I was different after that injury. You know what I mean? So, yeah.

Dr. Correa:
Okay. Yeah. So none that really symptoms seemed to last longer than a few days or longer than that week period that they had you take off? You were able to get back. And none, of course, when if they did take any precautionary pictures of your head that they saw signs of injury.

Josh Andrews:
Exactly. Yeah. That was the most out of the norm.

Dr. Correa:
But it sounds like you were having some symptoms already clearly in high school and in college, and you didn't really have a clear change with any of these more mild concussions, and you didn't have a really big injury. So we don't know necessarily for you how it's associated.

Josh Andrews:
Exactly.

Dr. Correa:
But you talked about, through your career you had these symptoms, but you were still playing NFL football. I mean how were you figuring out in college, balancing your academics and college play, and then in the NFL really operating at that high of a level?

Josh Andrews:
Yeah. I feel like I adapted, you know what I mean? And I feel like football was always my outlet to get all my anger and frustrations with narcolepsy. And it was a time where I didn't feel any narcolepsy symptoms, you know what I mean? I feel like every time I played, I didn't have any symptoms of narcolepsy. Maybe sometimes I had cataplexy that I can remember, but as far as falling asleep, that never happened. You know what I mean? I feel like I was just too stimulated, too engaged for that to happen. But as soon as in meetings and stuff, I would struggle and trying to think... Even my relationships with some players, they would be, "Man, what are you falling asleep for?" And I feel like I struggled with that at times, but feel like some people understood because I kind of explained it. And some people were like, "Agh."
But other than that, I feel like I was doing what I needed to be doing when I was playing. I felt like when I was on the field, I knew all my assignments, you know what I mean? I knew what I needed to do. I was athletic, strong, had all the things. My technique was solid to where I knew what position I need to be in to be successful, you know what I mean? And I feel like I just adapted to having narcolepsy. Even in meetings, if I were to fall asleep, like, "Okay, I need to study harder at night, or I need to study longer." You know what I mean? I need to talk to my teammates like, "Hey, man, can you help me understand this more?" So I feel like that was the give and take of me having narcolepsy.

Dr. Correa:
So you were aware of the gaps because you were too sleepy or fell asleep with your studies probably in college and then studying for your professional role in the NFL. But it sounds like the great part is you had a community and friends to go to for support and help you fill in those gaps and you figured out ways of adapting your study time to be able to recover and address that.

Josh Andrews:
No, absolutely, man. And I made some great friends from playing in the NFL, man, like some lifelong friends that man, till the day I die. I'm like, all right, man, I got to keep in contact with you for sure. You know what I mean? Even my wife, that's the one thing about hopping from team to team, you meet somebody, but then you move to a different team, man, it's been a while. They live in Texas. You know what I mean? They live in Florida, but we still, social media's being able to keep in contact and stuff.

Dr. Correa:
When you were playing on the field, was that really one of the only instances when you didn't have to experience or think about being too sleepy, falling asleep, or having these symptoms?

Josh Andrews:
Oh yeah, for sure. You know what I mean? And I was telling somebody, I was like, "Man, I for sure probably had a couple of cataplexis moments, you know what I mean? When I was playing in New Orleans, played against the Eagles, the team that I started with, and we had scored a touchdown, I was like, "Yeah," super excited. I was like, "Oh," kind of buckled a little bit. And I was like, all right. That was definitely an incident of me having cataplexy. But that didn't really happen too often though. You know what I mean? That was a rare event and me falling asleep, it just didn't happen. I felt like I was saying I was just too engaged, too in the zone to where if I fall asleep, man, I probably wouldn't be able to play at that high a level if I was falling asleep on the field.

Dr. Correa:
Yeah. Yeah. So in a way, would you say that on the field, playing alongside your teammates, whether in a game or practice was really the only setting you were safe from the symptoms of narcolepsy?

Josh Andrews:
Yeah, I would say so for sure. I mean I feel like I was probably the safest there. Anywhere else, if I was relaxed or chilling, I had a high chance of falling asleep. You know what I mean? Crazy thing is I've fell asleep playing video games before, and I just been with friends and they look at me like, "Dude, wake up." And so for me, football, I was running, on my feet. It was just a different atmosphere to where I couldn't fall asleep, if that makes sense or not.

Dr. Correa:
And if I'm right, you were diagnosed back in 2018?

Josh Andrews:
Yes. Yes.

Dr. Correa:
So, I mean let's take a moment for that. You were diagnosed in 2018, you just retired last year. You played nearly five years with the symptoms. It's amazing. And it's great to hear, for other people to hear that you could find a way within the symptoms that you had to manage things, manage your time and schedule, and operate at that level. That's amazing. And the NFL and professional sports, it's a space where you don't have a whole lot of privacy about things like this and about medical things. How was the support between the different teams and throughout the NFL for you knowing that you had this diagnosis?

Josh Andrews:
Yeah. My old line coach, I told him and he understood, you know what I mean? At first, he was like, Jeffrey Stoutland, offensive line coach for the Philadelphia Eagles, and he knew I had something wrong with me. He would call me out in meetings, and I felt like after I got that test, he understood more. But at the same time, you're in the NFL, you know what I mean? It's super competitive, so you have to be able to, I wouldn't say it's a distraction, but cut out things that you're dealing with to play at a high level. And I feel like I did that well. And after him knowing that, I feel like I got into a routine where I knew how to manage it better. You know what I mean? I understood what I needed to do. I was on medication too, so those things helped.
But at the same time, I still struggled at times because medication is kind of a bandaid, I would like to say to a certain extent, but it doesn't cure anything. But just being able to manage it better and understand, okay, if I'm having a sleep attack, I would eat seeds or I need to go to the bathroom or be right back. You know what I mean? Or I'll stand up in meetings. I mean some things that I did just to keep my mind engaged and stimulated, ask questions, some things that I was just aware of more when I felt that coming on.

Dr. Correa:
So in a way, almost kind of like any family, by opening up, then they probably helped you become more aware of the resources and support that you did have, but then also you had to find your ways to adapt.

Josh Andrews:
Yes, for sure.

Dr. Correa:
And then still follow through and do the work at that high level so that you could be able to play. It's great to see that you were able to play. I mean Philadelphia, Minnesota, Indianapolis, New York, Atlanta, New Orleans, you got to play on a variety of different teams, a bunch of different cities. Which city was best?

Josh Andrews:
Sheesh, Philly, man. That's where I started out, won a Super Bowl. That's my team forever, man, for sure. But after Philly, man, I hopped around and the hardest part was just trying to find consistency with doctors and getting on the same page with them, but I feel like Philly understood the most because I was there the longest, but after that, nobody had any... I don't know if I'm the only person who had narcolepsy in the NFL, I would be interested to see if anyone else does, but nobody really had any patients that had narcolepsy. You know what I mean?
I went to Atlanta, Dr. Rye out of Atlanta with, I think it was at Willwood Emory. He had a couple other teams that had some sleep issues and he understood it. He's really had a good sense of what narcolepsy was down in Atlanta when I was playing there. But just find that consistency and really not knowing anybody. I feel like I was isolated at that point too. You know what I mean? I feel like I didn't really know anybody until first person I met was Julie Flygare. She's the president and CEO of Project Sleep. That was the first person I've ever met with narcolepsy. Basically, her nonprofit just helps people with finding community with sleep disorders.
And I'm so grateful for her, because she's helped me find my voice with narcolepsy, helped me to share my story just because, like I was saying before, me finding out I had narcolepsy was almost embarrassing to me to a certain extent. You know what I mean? Just because I had such a negative view of what it was, you know what I mean? But now having her, seeing where she's come from, and if you get a chance, you should pick up on her story, she's awesome. But it helped me to understand, okay, this is something I shouldn't be ashamed of, but it's almost like a blessing to be able to share my story and share how I've been so successful and give that motivation to other people. I feel like I look at it as that now.

Dr. Correa:
Yeah. Well, let's highlight on that because an online community and national organizations are so important for many rare conditions and narcolepsy, in the general population, is in less than 0.04% of people. So that's less than one person out of every 100 people. And some of the numbers have it actually even lower. As I mentioned before, there are other conditions that can raise the rate of narcolepsy in certain populations, but it's not common to run into other people. And then on top of the fact that many people feel that there is a stigma with the symptoms, so even if they have it, they don't share. But finding a community with resources like you found is particularly helpful. So, what drew you or how did you end up getting connected with Project Sleep?

Josh Andrews:
Yeah. Okay. So, the NFL has this program called My Cause My Cleats, which is basically every once a year... You get fined if you have designs on your cleats, but at that point, they let you do designs on your cleats but the catch is you have to put a design for a cause that you care about or a nonprofit that you care about, some type of organization that's deep rooted in your heart. You know what I mean? For me, it was narcolepsy, and I was just at that point trying to find community. You know what I mean? So I was on Instagram just strolling around. I was like, man, narcolepsy.
I came across Project Sleep and I reached out to Julie and read her book and everything. I'm like, "Man, I want to represent you guys from My Cause My Cleats." I have the cleats right here, just still in my room right here. And just something that's dear to me, man. And I did it for three years, and after that, we met in person, did a couple projects together, and she motivated me just to be an advocate for narcolepsy. You know what I mean? Because it's so rare and people have such a negative view of it and people don't have the resources to get tested for narcolepsy or some type of sleeping disorder, it just felt like that is how I came across her and came across just being an advocate for narcolepsy.

Dr. Correa:
I'm wondering, as everyone in the community is becoming more aware of all different kinds of things we could be doing for our better brain health, one of those things that we keep highlighting, coming back to is the importance of sleep and getting good sleep along with exercise, diet, and preventing other complicated or medical conditions or preventing their impact. But how do you think about managing your narcolepsy and your sleep to get maximized the best possible brain health for yourself?

Josh Andrews:
Oh, yeah, man. And for now that I have a family, it's even more crucial because I have young kids. I have to be able to take naps throughout the day, and I feel like that's been crucial for me. Go to sleep at a reasonable time to where I can get up and work out in the morning. You know what I mean? I can't be up all night.
And it's just those things, just having a routine of when I do go to sleep, these are the things that I need to get done, just relax for a little bit, just finding a routine that works for you, works best. And if, for me, having a nap helps me through throughout the day, even if it's 20 minutes, that's something that has been helpful for me and that's hard for other people to do, even if you rest for 10 minutes or something, I feel like it gives my mind just a refresher to where I can go throughout the day with the edge, you know what I mean? Instead of being all drowsy and angry, not necessarily angry, but in a bad mood just because I'm so tired right now. And just some things that have worked for me, some sleep things that I do on the daily just to be able to manage narcolepsy.

Dr. Correa:
Are there things that you do in the evenings that keep yourself on a routine to be getting more regular sleep?

Josh Andrews:
I would say for the most part, it's all to the morning for me. At nighttime, once I put my kids to bed, I probably get something done, but by 9:00, I'm not doing anything else. You know what I mean? I'm trying to either relax with my wife or I'm not doing anything engaging, because I know if I do, I probably will get good sleep. So, after 9:00, I'm in relaxed mode. So, just trying to prep for the next day, you know what I mean? So I can get off to a good start. Because I've seen that if I don't sleep well, my mornings are just drowsy. I catch that sleep attack in mid 10:00, and if I don't work out, that's all stemming back to the night before of how I prep or got in bed or relaxed. It's just things like that that I'm more conscious of now that I know what... But it's an ongoing process too. I mean I have young kids and they're getting older, so I don't know what that naps going to look like down the road. And-

Dr. Correa:
Yeah. You have three kids. I'm impressed that you are finding the naps.

Josh Andrews:
Yeah. Right now, I'm napping when my 3-year-old naps and I'm like, man, she's fighting it too. So the time is ticking before that goes away. So it's just trying to find other outlets where I can just relax for a few minutes. Even if I just, I don't know, meditate, you know what I mean? Just get my mind to calm down a little bit and just almost like a restarter for the day.

Dr. Correa:
So, Josh, what's one thing that you would want everyone in the community to understand about narcolepsy not being what they've seen on TV or in movies? What is it really for you and for some other people that you've met living with narcolepsy?

Josh Andrews:
Yeah. For me, I would say that you can have a completely normal life if you put the right people around you, plan out how you're going to go about it, and really just be vulnerable and being real with yourself about the symptoms that you're feeling and express those things. I feel like those are the three things I would say, just because that has helped me out so much. The community's helped me out, you know what I mean? Being vulnerable with my family, like, "Hey, I need to get this sleep in right now." And really just mapping out what my day looks like to the best of my ability. You know what I mean? Every day is going to be different, but if you find that routine, even if it's in the morning or at nighttime, I feel like it makes a huge difference propelling you into the next day or throughout the day. So, those are the three things I would say, for sure, that I want people to know.

Dr. Correa:
Thank you. Thank you. And what's next for the Andrews family?

Josh Andrews:
Man, so, right now I'm actually going to referee high school football this fall.

Dr. Correa:
Oh, okay.

Josh Andrews:
Yeah, yeah. I'm going to give that a shot. But yeah, that's the biggest thing. Yeah, that's what I got going on right now. So, yeah, it's been good though. We're enjoying our time together and really just trying to maximize really just everything we got with our family, you know what I mean? So, yeah, that's what we got going on.

Dr. Correa:
Well, I appreciate you taking the time to share with us and with our listeners and really, your model of how you're describing investing in your own rest and sleep so that you can be a better father, investing in your own children and in the community, now thinking about giving back and refereeing with the kids, I look forward to hearing more about the Josh Andrews and the three trio Josh Andrew kids coming up.

Josh Andrews:
Yes, thank you. Appreciate you.

Dr. Correa:
Can't get enough of the Brain & Life Podcast? Keep the conversation going on social media when you follow @neurodoctorcorrea and @brainandlifemag, or visit brainandlife.org.
Welcome back. Now, Josh related to us not only his own history of hypersomnia or excessive somnolence and sleepiness symptoms, but then later being diagnosed with narcolepsy while playing in the NFL, getting the treatment he needed, and getting back to play. Now, we want to learn and talk a little bit more about narcolepsy. And so, we invited one of our friends and one of the authors of the Brain & Life book series that's going to be coming out related to sleep disorders, Dr. Andrew Spector from Duke Health at Duke University. Thank you so much, Andrew, for joining us today and to help us understand and dive into sleep disorders a little bit more.

Dr. Spector:
I'm really happy to be here. Thank you for including me.

Dr. Correa:
So, Andrew, can you help us understand a little bit, what specifically is narcolepsy and how you explain that to your patients compared to all the other things that can overlap with some of the same symptoms?

Dr. Spector:
Yeah. First of all, narcolepsy is a condition that causes excessive sleepiness. Without sleepiness, you don't have narcolepsy. There are a variety of other symptoms that people with narcolepsy often have, but the one that they all have is the excessive sleepiness. That's fundamental to the condition. And there are a lot of conditions that cause sleepiness. So, it is a challenge sometimes to narrow down all of the different causes for sleepiness and figure out, okay, this is narcolepsy.
So, the other things that we're looking for when we're listening to a patient describe their symptoms in addition to the sleepiness would be symptoms such as sleep paralysis. That's where you're falling asleep or waking up and feel like you can't move. Maybe you feel like a weight is pushing down on you. Another one would be a sleep-related hallucination. Either as you're falling asleep or waking up, you'll see or hear or feel something that's in the room that's not really there, maybe hear people talking in the hallway who aren't out there. So those types of hallucinations can occur in narcolepsy.
And then sometimes people with narcolepsy will describe a sleep attack. They're going about their day and they'll just have this overwhelming need they need to go take a nap. It's not the cartoonish version that you may see where people fall asleep in their soup. It's not like that, but it is that urge to go sleep.
And then one of the most defining symptoms of narcolepsy is a symptom we call cataplexy. Cataplexy is the sudden onset of a physical weakness associated with an emotional stimulus. So, you may hear this as, I was laughing at something at a bar and I had to put my drink down because my arm got weak, or their speech starts to slur, their jaw gets weak when they get upset about something. So this can be part of the body, it could be the whole body and lead to falls, but it's a sudden onset weakness triggered by an emotion. Doesn't last too long. We're not talking half an hour, we're talking a minute. And then the recovery will take place and the muscle strength will come back again. And so, not everybody has all of those symptoms. Like I said, the one that they all have is the sleepiness, but that combination of symptoms is one that would make it highly likely for somebody to have narcolepsy.

Dr. Correa:
Now, but let's dive into that a little bit more because I know from our time in medical training that there are times when we are excessively sleepy. You may be sleep deprived, there's many workers who work long nights or long hours, get up super early in the morning. I imagine there's even times when NFL players are just working so hard during the season that they could fall asleep in a conversation or feel sleepy throughout the day. So, where do you dive into actually differentiating it just from having days or hours of not sleeping well?

Dr. Spector:
Absolutely. Good question. Because one of them is the chronicity, meaning how long has this been going on? So, for somebody with narcolepsy, this is a constant daily struggle and you can't necessarily trace it back to, I haven't been sleeping much lately. Although, to be fair, I have a lot of patients with narcolepsy who don't get diagnosed year after year after year because there's always something, right? Oh, I was studying late. Oh, I was this or I was that. And they always can blame it on something and don't realize, "No, you're actually sleepy beyond just that sleep deprivation." And so, the way we differentiate that is we try to optimize sleep first. So, if everything is going well and we've ruled out sleep apnea and we've ruled out other sleep disorders and you're getting enough sleep at night and you're still that sleepy, then we've got a problem. So, we try to optimize things first because even the most optimal condition, somebody with narcolepsy is still going to be experiencing daytime sleepiness.

Dr. Correa:
Now, are there one of the symptoms or several of the symptoms that are completely unique that, if you are excessively sleepy and then have one of the symptoms that you mentioned, that it automatically and early on brings up the question?

Dr. Spector:
Yeah, the only one of those is cataplexy. So that sudden onset weakness triggered by an emotion, doesn't really occur outside the setting of narcolepsy. There aren't other conditions where we see that. Whereas things like sleep paralysis and the sleep-related hallucinations, any one of us could have those if we were sleep deprived enough. That can manifest in a lot of different ways. So those are not specific to narcolepsy, but cataplexy is. So, if you hear somebody describing that, the first thing your mind will go to is narcolepsy.

Dr. Correa:
Yeah. In terms of the treatments, are there a lot of options and how likely is it that people have a good response?

Dr. Spector:
So one of the things that I really like about treating narcolepsy is that I find that it is very treatment responsive, meaning I fully anticipate that I'll give someone a better quality of life when they're done working with me or as we're working together because there are a lot of good treatments out there and there's a lot we can do to help people. We went a long time with not a lot of options and then in the last five years, there's been a virtual explosion with four new treatment options all in the last few years. So, things have never been better for the treatment of narcolepsy.

Dr. Correa:
That's wonderful. And so then, it's not completely uncommon for someone like Josh to have a diagnosis and even though it may have initially impacted their work or how they were able to get through their day, that with treatment that they could get back to so many of the activities that they liked?

Dr. Spector:
Absolutely. My goal is for it to be a non-disabling condition, that you live with narcolepsy and nobody has to know you have it because you're going about your everyday life accomplishing everything you want to accomplish. That may require medication and support, but at the end of that, with the medication, you're living your normal life.

Dr. Correa:
But it sounds like, in some ways for many of us, the good news is it's incredibly unlikely. It is generally much less common, but we mentioned that there's a lot of other things that may lead to many of the symptoms we talked about other than cataplexy. So, what are some of the other conditions that you work through and discuss with your patients that may be leading to excessive daytime sleepiness?

Dr. Spector:
By far, the biggest one is sleep deprivation. We don't go to sleep early enough. We don't sleep long enough. That is well-known. I think people are aware of that one. So sleep deprivation, which I should point out is not the same as insomnia. Patients with insomnia do not tend to doze off a lot during the day. Okay? So that's a misnomer, even though they sleep less at night. But sleep deprivation, as in you could be sleeping but either choose not to or you're working or something's keeping you up, that is a big trigger for daytime sleepiness.
Other sleep disorders. Sleep apnea is a very common sleep disorder, which involves not breathing well in your sleep with airway collapse. And that's one of the biggest ones that we'll see in our sleep clinic that causes excessive daytime sleepiness. Other conditions that affect sleep, like restless leg syndrome that make it hard to fall asleep because legs get very active at night, that can cause daytime sleepiness. Medications are another big cause. So, a lot of people are taking sedating drugs, often prescribed for various other reasons, and that can leave you feeling sleepy during the daytime. Depression is another big trigger. And sometimes, we see patients with narcolepsy who were misdiagnosed as having been depressed because there's so much overlap between the two. So, depression is another big cause.
So, there are a lot of different things that we look at. And then I want to highlight one, which is mimic of narcolepsy, and that's a condition that we call idiopathic hypersomnia. And idiopathic hypersomnia is categorized the same as narcolepsy, as a hypersomnia, disorder of sleepiness, and the biggest difference between the two is that in idiopathic hypersomnia, people will tend to get really long periods of sleep, 12, 15 straight hours of really deep sleep. And in narcolepsy, the sleep tends to be shallow and fragmented. And people with narcolepsy often wake up a lot through the night. People with idiopathic hypersomnia tend to be in really deep sleep and are very difficult to awaken. And so, when you're sleeping a lot during the day, narcolepsy is certainly going to be a consideration, but it's our job in the sleep clinic to sort out which of the two we're dealing with, whether it's narcolepsy or idiopathic hypersomnia.

Dr. Correa:
Now, I know in the time that I've seen patients with different sleep disorders, one that I and other doctors have had a challenge in helping manage is restless leg. It also makes me think of, and maybe my wife will be listening a little bit closer because she often is saying that my legs move too much and wake her up at night. So help us all understand how you explain to family members and other patients, what is restless leg? What are some of its causes? And what do we have to look at? You're literally, I hear, writing the book on it.

Dr. Spector:
Yeah. Actually, that should be available now, but we'll save that for another conversation. Let me briefly answer your question today. Restless legs is an uncomfortable feeling, usually in the legs, but it actually could be anywhere else in the body too. But it's usually in the legs and it's mostly described as an urge to move. Some people say creepy crawlies or ants up and down the legs, whatever the sensation you have, it's an unpleasant one. And it usually comes on later in the evening or at night. It's a nighttime phenomenon. It's not likely to happen early in the day, and it happens when you're resting. So you have to be sitting down, and if you're up and moving, at least temporarily gets better while you're moving. And you sit down and then it comes back.
So that's it. It's an urge to move, worse at night, worse when you're resting, and better when you're moving. And the underlying cause of this for many, many people is low levels of iron in the brain, which can be tricky to diagnose because we measure iron levels in the blood and they don't correspond well to iron levels in the brain. So you might check iron levels in the blood and they may look normal, but they still reflect an iron deficiency in the brain. And if we can correct that, much of restless legs will get better. About a third of patients don't respond to iron therapy. And for them, we have a lot of other treatment options, various medications, and we do want to calm the legs down because if your legs are so active that you can't sleep at night, there are associated long-term health problems and things like heart disease from not getting a good rest at night.

Dr. Correa:
And is it just simply by the report of someone else who sleeps in the same bed? Or is a person describing that urge? Or how do you end up really determining whether or not it's these leg movements or another condition that's keeping people up or affecting their sleep pattern?

Dr. Spector:
That is a very tricky question because, well, restless leg syndrome is entirely a subjective condition that a patient has to report for themselves. No one else knows what you are feeling. So, you have to tell us that you have restlessness in your legs.
There is a related condition called periodic limb movements of sleep. And those periodic limb movements of sleep, you may not know about, but your bed partner probably does because you're kicking your legs at night. People with restless legs are often going to have periodic limb movements and vice versa, but it's not a 100% overlap between the two populations. You can have one without the other. And really, it's the periodic limb movements that we think are probably responsible for much of the sleepiness and the heart disease and things that we see as a consequence, more than the restless legs itself. It's just that the restless legs places you at higher risk for those periodic limb movements.
And we would see those periodic limb movements either on the report of your bed partner or on a sleep study if we were doing a sleep study, but I'll tell you, we see those leg movements a lot for people who seem to have no negative consequences from them. So, it's not unusual for us to ignore them if you're not bothered by them, just because you have a sleep study that shows some leg movements doesn't mean you need any intervention.

Dr. Correa:
And how common is restless leg syndrome in the community?

Dr. Spector:
Restless leg is about 4% to 10% in the community. So, that's much more common than narcolepsy, orders of magnitude more common. And certain populations are more at risk for it. We see a lot of restless legs in people who trace their ancestry to Northern and Western Europe. So I see a lot of people, if I ask them, they'll say, "Oh, yeah, my family comes from England, my family comes from Ireland or Germany," that is not 100% and you'll see it all over the world, but the highest concentration tends to be in people of that background.

Dr. Correa:
If anyone does have symptoms like this or is looking for more resources to learn more about restless leg or interested in the Brain & Life book, where can they go to find information about restless leg syndrome?

Dr. Spector:
So, a great resource is the RLS Foundation, and that's rlsfoundation.org, and they have tons of important information. They can help you find an RLS specialist on their website. I'll also refer people, Dr. Andy Burkowski runs a blog that has a lot of restless legs information on it, and you can search R-E-L-A-C-S is how he spells his website and look him up, Andy Burkowski. And then the book you're referencing, the one that I just wrote is called Navigating Life with Restless Leg Syndrome, and that's part of the Brain & Life series that's available on Amazon, Barnes & Noble, and any online bookseller.

Dr. Correa:
Now, as we get back then to narcolepsy, what's your thoughts? Josh was able to get back to play in NFL professionally with the treatment of his narcolepsy. How do you see that in comparison to many of the other patients that you helped take care of?

Dr. Spector:
I think that's appropriate. I think that's what I would expect, and that's what I tell patients. I say, if they're having trouble maintaining a job, I tell them, that's my goal. You're not going to be on disability. We're going to get you functional. We're going to get you back to work. That is my expectation for people living with narcolepsy, that they can hold full-time jobs and lead full lives.

Dr. Correa:
And how different is what you are seeing and hearing from people living with the condition and their family from some of the cartoon and movie versions of what we've seen depicted of narcolepsy?

Dr. Spector:
Yeah. The image that I have from the movie, the movie Moulin Rouge for example, they got this guy in the middle of the song and he just falls asleep, and that's not what it is. It's an overwhelming urge to sleep, but you can get to the bed to take the nap, right? It's not going to be instantaneous.
Now, cataplexy can come on very quickly, but the difference with cataplexy is you're not losing consciousness, you're losing strength, but you're wide awake. And so, the depiction shows a combination of cataplexy and falling asleep all sort of at once. That's not really how it works. To be cataplex, you actually have to maintain wakefulness during the event. I've seen many, many times patients who are really doubtful of the narcolepsy diagnosis because their image is what they see on TV, and I have to walk back and say, "That's not the reality of it." And I know that that's actually causing harm because patients don't seek out medical help and get the diagnosis. They don't see themselves in those characters, right? It's like, well, that's not me, so I must not have narcolepsy. In reality, it's probably more common than we realize and people just aren't seeking help because they don't realize that their sleepiness is an underlying disorder.

Dr. Correa:
And one of the symptoms that you talked about that can come from various different conditions that lead towards sleep deprivation is not something that most people get exposure to, and that's sleep paralysis. And that might be something that someone has experience, not have any explanation for, and may really scare them to even think about or talk about with others. Help us understand a little bit more what's going on with sleep paralysis.

Dr. Spector:
So, sleep paralysis is fascinating, and it can occur in anyone, like I said, especially the sleep deprived. And there are people who will have recurrent sleep paralysis with no other sleep disorder. That's just their sleep condition is sleep paralysis. What's happening in the brain? To understand that, you need to know that when you have REM sleep, your body is paralyzed. And that's a protective mechanism because you don't want to dream about flying and jump out a window and kill yourself. So your brain protects you from this by paralyzing your muscles.
And what can happen sometimes is that you awaken, but that REM sleep paralysis hasn't stopped yet. So, you're effectively still halfway in a dream, your body hasn't woken up yet, but your mind has. And because of that disconnect, you're awake, but your body's not moving and you're still in that state of REM paralysis. It doesn't take long for you to synchronize again, and then everything wakes back up. So these aren't long, but they are scary. And the first time this happens is particularly scary and it can be scary every time.
Often, it's associated with a hallucination because that's sort of the dream imagery breaking through into wakefulness also. So this is a disorder that affects REM sleep, and that's generally true of narcolepsy. We consider it disordered REM sleep because you get these elements of REM sleep breaking into wakefulness. And actually, that's thought to be related to cataplexy as well. That weakness when you get emotional is that same sort of paralysis kicking in, except during wakefulness instead of when you're asleep.

Dr. Correa:
So it's a disorganization and that modulation or that function that connects those areas of the brain. And for our listeners, REM sleep being the state of sleep where we do our dreaming. And now, there's another fascinating and challenging situation where it's sort of almost flipped on its head. There is movement in the dream.

Dr. Spector:
Yes. So we call that REM sleep behavior disorder, and you should not be acting out your dreams, that's dangerous. If you are sort of acting them out, and that often looks like a fight. So for whatever reason, we don't know why, people with this condition will often dream of either fighting someone and they'll end up throwing a punch or kicking or choking in their sleep. And if there's a bed partner next to them, that could put them at risk. People have been seriously injured by a spouse who has REM behavior disorder, or being chased. That's another common one. You'll often hear about being chased by a bear and running. And if you were to watch the person having this dream, they would be running in their sleep and you could see what they were doing and they were acting out.
This is a condition that worries us when we hear about it because a large number of patients who start to act out their dreams will go on to develop more neurological problems in the future. Maybe it's Parkinson's disease, maybe it's Lewy body dementia, which is the second most common kind of dementia after Alzheimer's disease, and these are degenerative progressive conditions. And sometimes, you'll see this REM behavior disorder years ahead of the eventual symptoms of Parkinson's disease. So, it sort of worries us when we see that. But there are other causes and the big one is antidepressants. So, the big culprit is venlafaxine, duloxetine, and any of the traditional ones. Fluoxetine is another big culprit. So, sometimes just getting off of those types of antidepressants can solve this, at least in the short term, although you may then go on to develop it again later in the future.

Dr. Correa:
So, still important to help treat and manage your depressive or anxiety or mood disorder symptoms. But maybe sometimes, if there's a side effect in that way, then it's reason to look for another treatment so that we can get back to more regular sleep. And for our listeners, some of you may recall a past episode we had where we talked about Lewy body dementia and its effect on a family, and that individual had early on REM sleep behavior symptoms that came out. So you may remember that from our previous discussion.
Now, and thankfully for you pointed out that both the REM sleep behavior disorder, but also sleep paralysis sometimes can be side effects of other medications. But thankfully also the importance of looking for the other conditions that might be of increased risk. What are some other key things that you want all of us to understand about our sleep?

Dr. Spector:
So, there are some really important general sleep rules that everybody should know, and one of them is that eight hours is not the magic number you might think it is, right? We talk about eight hours as a goal. The real goal, and I like people to focus on, how do you feel during the day? If you slept seven hours and you feel refreshed and you have a great day, then seven hours is fine. And sometimes, we create more stress trying to get to that perfect eight when not everybody is built the same, right? There is a bell curve and some people need seven and some people need nine.
Very few people need four or five. Almost everybody needs more than that. So, if you're down less than six, now we've got more of a problem. So, we really have to work on some of the bedtime procrastination and the binge watching and prioritizing sleep. But I don't like creating so much anxiety in people that if they're not getting that perfect eight hours uninterrupted, that something is somehow wrong because that's not true. Most people wake up once or twice during the night. It's okay. Roll over. You go back to sleep. Don't worry about it. And so I often like to say, you need to get good sleep, but worrying about your sleep is just going to sabotage it.

Dr. Correa:
Well, I'm glad that you were able to help us all seek better ways to sleep better, to give us a perspective on a variety of different sleep conditions, understanding a little bit more narcolepsy that Josh himself experienced, and thank you for everything that you're doing to help other people feel better during their day.

Dr. Spector:
It's my pleasure. Thanks so much for chatting with me.

Dr. Correa:
Thank you again for joining us today on The Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org. Don't forget about Brain & Life en Espanol.

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Dr. Correa:
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NFL Player Josh Andrews on Playing Professional Football with a Narcolepsy Diagnosis

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