Glass Half Full with Leslie Krongold, Ed.D.

Tag: narcolepsy

  • Media Representation: Do you see your life reflected in popular media?

    Media Representation: Do you see your life reflected in popular media?

    Do you see images of yourself reflected in popular media? As a person with a chronic health condition and/or disability, is your life reflected in movies, television, print, or social media?

    In this themed podcast episode you’ll hear from Christophe Zajac-Denek — an actor, musician, surfer, skateboarder, and little person — whose podcast, I’m Kind of a Big Deal, explores the unique lives of people with dwarfism. Christophe has worked in Hollywood movies for 11 years but rarely do you see his face.

    Lindsey Kizer, recently diagnosed with narcolepsy, appeared in an earlier podcast episode. Her experience of narcolepsy reflected in media has usually been a joke with the character falling asleep mid-sentence.

    John Poehler is a published author and award-winning blogger in Colorado. Diagnosed with bipolar disorder in 1999, John’s memory of mainstream media’s representation of people with bipolar disorder was far from accurate.

    Daniel G. Garza, an HIV/AIDS patient leader, advocate, and educator talks about the first movie where he saw characters portrayed with HIV/AIDS. Daniel has a blog/podcast and YouTube channel.

    Ania Flatau, an avid dancer born with spina bifida, was featured in a previous podcast episode, Ania has never seen spina bifida represented in popular movies or television but she is quite proud of a certain wheelchair skater, Aaron Fotheringham.

    For those with myotonic dystrophy, like myself, all we have is this documentary, Extremis.

    Transcript

    welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready welcome to the glass apple it’s our first episode for 2021 took a little break no vacation just working on social media the website search engine optimization oh so many things behind the scenes but we’re back this episode is all about how we’re represented in popular media on television in movies print and social media whether we have a chronic illness a disease and or disability are we seeing ourselves reflected in popular media i know i’m not i think i can safely say i’ve never seen a character with myotonic dystrophy on a tv show or in a movie well there is a documentary it’s called extremists extremists extremists and it’s about a palliative care doctor and one of her dying patients has myotonic dystrophy it was incredibly painful to watch and several years ago there was a tv medical drama called royal pains i didn’t watch this series but i saw facebook posts from people in my patient community that there was an episode that mentioned myotonic dystrophy so i mean sure i found that episode i uh i marched it only to be let down it mitotic dystrophy was mentioned as a possible diagnosis for a patient i don’t even think you saw the patient but it was quickly discounted so like you could sneeze and miss the whole thing so again to thinking about the power of medium representation over the last few months i’ve interviewed a few people people with different health conditions or disabilities to hear if they felt represented in popular media the first person you’ll hear from is Christophe Zajac-Denek that’s a hyphenated last name not just multi-syllabic i met kristoff at a virtual podcast conference he’s originally from detroit but because of his avid interest in surfing skateboarding and punk rock he made his way to southern california Christophe identifies as a little person and has a podcast called i’m really a big deal he shared with me that there are between 200 and 250 different types of dwarfism and people exhibit different symptoms depending on which type of dwarfism they have the condition that Christophe has is called cartilage hair hypoplasia in your lifetime how have you seen the media change in the representation of little people and when when did the term little people become i’m assuming it’s acceptable yeah like are people that you met in your community do any people resent that term or is it a term that came out of your community sure yeah those those are really important questions the tour i’ll start with the term little person the term little person is acceptable um you could also say dwarf however when i’ve posed this to guests on my show some of them have strong feelings

    in us in a way that they don’t that doesn’t define them and so they don’t want to be called a little person or a dwarf they just want to be called by their name and just like we all do you know your condition does not define who you are so in that same breath that’s the same with us you know little person is it’s it’s fine it’s pc so is dwarf you know um [ _ ] or the m word as people refer to it as is not okay um you know but words are just words in a in a sense and if if somebody actually wants to come up and have a conversation with me and say you know if they were to call me a [ _ ] or something like that and i wanted to if i saw value in the in the conversation or you know where where this was somebody that was just maybe misdirected or something like that and even if they’re not you know it’s still okay to say hey that’s offensive and that’s not all right to call somebody out like that my name is Christophe in fact another guest on my show does that and he is incredibly brave um whether they call him out as an offensive term or not he will go up to people and say hey you know the proper terminology is this but also my name is joseph and it’s nice to meet you and i was born this way and he interacts with kids on this level and i i never would be i i’ve never been able to do that before you know maybe this past year or two because you know it’s still accepting yourself and all of my friends that i’ve shown that to as well they’re like that’s so cool i don’t know that i got the balls to do that just to you know go up to a mother and a child and to confront the situation and and because with each situation that passes if it’s not rectified or if there isn’t some sort of positive interaction or a teaching moment or something like that that’s a moment that’s lost and that’s another moment that goes by where it’s okay to maintain confusion about how to interact with us or other people with disability you know and to me the whole reason why we have that is because the media doesn’t include us you know i’ve worked a lot of show i’ve worked in hollywood for 11 years and you’ve seen my face once maybe twice you know and it’s not because i haven’t worked it’s because hollywood covers me up for everything you know my face is covered in prosthetics or makeup or just costumes and masks and crazy wardrobe and things like that and trust me i want to do that stuff because it’s fun and i can do that stuff and i need the work so please pay me but also you know you just complimented me on my face and i’m not searching for compliments but i’m not this disgustingly grotesque object that seen in a commercial or in and i’m not saying myself i’m saying all of us you know everyone everyone that meets my friends with dwarfism think that they’re incredible they’re like your friend is so cool how they’re so awesome i never you know knew another little person before them or you know before you or whatever and it’s the personality that shines through right and that becomes inaccessible when little people are hired as props or just warm bodies to move around a costume or some foam or something like that and so that’s how i see how society sees us you know and it’s taken me a long time to figure that out because remember how i said i would get paid you know 10 to 100 times as much you know in a costume as i would get playing music well there’s the there’s the hook right there right money but then once you start to think about it and you you’re thinking okay well i’m i’m not getting any equity on my face or my skill because i’m in a costume they could have hired anybody and there’s just a list and if whoever said the first yes is going to get the job so it doesn’t matter you know what i look like in that regard and i think that that’s sad and i i do think some stuff in hollywood is turning around for the better with that i mean peter dinklage is blazing a trail and he’s awesome and i’m i’m really proud of him and what he’s done and the station agent i love that you mentioned that film that film is is incredible that when i first saw that i was thinking who knew who knew about me this is crazy it’s actually i’ve identified with that so much and just more of that is what i think we need and you know even when there are certain things that in my eyes are exploitative i still see there’s a part of me that still sees value in you know like the little women of la and dallas in new york and stuff i mean it’s a reality show so there’s going to be ridiculous drama and things going on but still you get to see little people you know it’s it’s not i i don’t see that as steps backwards i see it as steps forward even though it’s it it’s this fantastic thing and it’s it’s reality tv and stuff like that i i respect that there’s a show that that shows us you know and and because you have to work on opening the door somehow and i think that you know what tara created is important and it’s good and it’s gotten attention of a lot of people the next person i spoke with is Lindsey Kizer in north carolina Lindsey appeared in an earlier podcast episode about coping with COVID she was diagnosed over a year ago with narcolepsy what do you think the biggest misconception people have about narcolepsy you know whether it’s friends or family members just in general i think you know most people think it is like what you see on tv you know where someone can be you know mid-sentence or you know doing whatever normal activities and they just in an instant fall asleep out of nowhere and that’s not how it happens at all you know i don’t really know where that has come from um because even that’s not even something recent as far as the past few years you know that’s been over time and it’s you know being diagnosed i really saw how people really believe that you know co-workers not really friends because they had kind of seen some of the progression up into up to my diagnosis but i’d even say acquaintances and even you know new co-workers and people that had met me after when i say have narcolepsy i get the question either what is that or wait so you’re just gonna fall asleep while you’re talking to me that question would make my would make me cringe so bad for so long how does popular media tv television books and you know i guess social media too how how do they portray narcolepsy i mean it for most people it’s a joke um you know one of the first movies that anyone ever mentions is always deuce bigelow um and he goes on the date with the girl and she just you know middle of dinner after he drops her off at the house you know she’s falling asleep out of nowhere and that really is the image for a lot of people that you know i’m gonna be talking to him or sitting at dinner and i’m just gonna fall asleep you know my face will be in my food um you know i’ll fall and hit my head something like that and a lot of them after they you know spend time with me you know they do realize that that’s not true or some of the ones that you know had that perception and had no idea i had narcolepsy you know that does change social media i do think is starting to do a really good job especially thanks to some of the organizations at trying to correct that narrative because there are a lot of people that are very outspoken about that not being the truth on social media and i do think that’s starting to but that’s definitely a big mountain to climb because it has been something that’s you know been drilled into people’s heads for many years thanks to movies tv shows and who knows where this idea came from well you know i i never saw deuce bigelow um but i did see rumblefish did you see that okay i have to interrupt for a moment now i’ve since realized it was not rumblefish i saw i mean i didn’t see that movie and it’s by the same director gus van zant but it’s his other movie my own private idaho from 1991 which features the actor river phoenix as a character with narcolepsy it’s older than deuce bigelow so maybe that’s why you haven’t seen it okay and and that was the first time i think it was river phoenix who was in it do you know who he is i have heard the name i could not think of that face off the hell in my head right now well he’s uh he’s since deceased but he is or was joaquin phoenix’s brother i guess his older brother and he was in a movie um gus Van Zant i think that’s the filmmaker and it was very it was kind of an art house movie so it’s very attractive to visuals but he river phoenix’s character did have narcolepsy and for me that was the uh first time i ever heard of the condition and i was probably in high school or college so it could be like 30 years old the movie so maybe but it was a drama and then so it wasn’t you know i it would be interesting for you to see it and then tell me what you uh what your take on the portrayal is because i i’m sure it was a bit more empathetic than a you know comedy like so many fallen you know their head in the soup or something i definitely will have to check it out because i have not seen it come up you know most of the tv and movie portrayals of it it is more of you know a comedy show or movie so that definitely would be interesting to see you know if it does have more of an accurate portrayal for sure back in october of 2019 oh so long ago when we traveled freely i went a trip to las vegas to attend the health conference i went from wego health it was a huge conference and it’s hard to imagine being in a crowd like that now but i got to meet other patient leaders from all over the country and one of those patient leaders is John Poehler john lives in fort collins colorado and he wrote a book which was published in 2020 it’s called this war within my mind based on the blog the bipolar battle i think it was right before christmas that i talked with john via zoom and we were both well bundled for the cold anyhow john really stood out for me at the conference he’s very warm and friendly so i have looked forward to including him in this podcast so you were diagnosed in 99 right right yeah so in the 21 years how have you experienced people’s reaction and understanding uh to bipolar condition you know when you when you talk to people has do you feel like people are more understanding now than when you first were diagnosed oh definitely definitely beyond the shadow of a doubt because when i was first diagnosed i know a lot of people when they are diagnosed they kind of they deny it at first they’re like oh my gosh why me i was actually really excited about it because i’d been searching for answers for a few years and so to finally have a doctor say john this is what you have and it matches up completely and not only do you have this but we can manage it it’s not like a death sentence or anything we can we just need to find the right treatment for you and so i shared it with a lot of my friends my family and so forth but i found out real quick that especially back then there was a huge stigma i lost a ton of friends um and i just i had a lot of bad experiences with broken friendships relationships because of my illness and actually i haven’t really been open about it until the past i started my blog at the beginning of 2017 and that’s when i just decided i’m gonna tell everybody you know i don’t it doesn’t matter to me anymore and i actually have a good response and that’s why you know when we met last year in las vegas you know getting that award on twitter that was really showed me wow people are starting to understand more and you know there wasn’t a wego health back when i was diagnosed there weren’t any of these huge organizations that you see now and so it’s it’s definitely a lot less i feel a lot less stigma compared to the way it was back then you know i don’t necessarily think like in you know mainstream media i don’t feel like it’s portrayed as accurately as it could but i mean it’s better than it was back then how has the media in popular media whether television books movies uh celebrities you know coming out how how has it changed over the years from my perspective just from what i’ve you know i’ve experienced when i was first diagnosed i tried to watch a bunch of the movies that you know portrayed characters that had bipolar disorder and i couldn’t relate to any of them at all it just seemed like they were more stereotypes of what someone with bipolar disorder lives with and the past few years i’ve seen a bunch of new movies come out and they’re getting closer but in terms of portraying portraying us as a character on tv i haven’t really been too excited with what i’ve seen there’s one movie i’ve seen that the director he has bipolar disorder and he acts in it and it’s an independent film and i saw it last year i previewed it and that’s probably the closest that i could relate to because it was from his story it was based on his life and i totally could relate to that so it’s come a long ways that’s for sure in terms of like actors actresses um people on the you know that you hear who are some examples of kanye west yeah yeah that’s i’m yeah that you know yeah that’s kanye west i know he i know he has bipolar disorder and it’s you know i i feel bad for him because you know i could you can see that he’s suffering and we have i have no idea obviously we don’t have any idea about personally what’s going on with him but seeing his outbursts and stuff i mean i can relate to some of how he’s acted so in terms of the reality of what like untreated bipolar disorder looks like i think that you know that he’s an example of that um but there’s others too there’s a there’s a gentleman on a general hospital in maurice something i’ve man i wish i don’t remember the name names too well but he’s a i i’ve i’ve heard him speak and i’ve read articles in bipolar the bp hope and he is great like he speaks out and i really like what he does so the the actor is on the as bipolar but not yeah yeah oh okay yeah he actually has and i think they put it in the script i’m not sure but in terms of him and talking about it it’s for me it’s it’s awesome to see someone in a light like that that has you know so many followers so many people that he’s in the spotlight and he feels so comfortable just talking about mental health bipolar disorder that’s i think that’s a lot different than way back when but then of course you know we can’t leave out carrie fisher i mean she was uh she’s been you know spokesman spokeswoman since the very beginning so and she’s been always just so cool so yeah no i always forget that uh she did come out at some for me i think the most you know just as terms in terms of a character the main one i think about is from homeland claire danes yeah you know you know how different communities i’m i’m jewish and you know when something comes out in the media and people always go is it good for the jews is it bad for the jews so i always think that different sort of minority communities do that you know so was that portrayal how did people in the bipolar community was there talk about her character and there was actually i think she actually uh spoke with uh influencer at some somebody who has bipolar disorder and kind of got she she was consulted by her and uh supposedly she used that to for character or whatnot but a lot of people that i spoke with thought that they did they didn’t portray it as well in the actual script you know as her as a character as an actress i i think she does an awesome job with it you know but she’s not the one writing the script you know and i don’t i think some of the storyline it just doesn’t really drive and make sense with some things like uh she was she stopped her medication and then she got psychotic and manic and like she took her meds again and she was fine like the next day and that’s completely you know i mean you know it’s like these meds don’t just kick in like that and it’s like oh a day later i feel 100 you know so you know just things like that so but i think it’s good that they you know the consensus from everybody i’ve talked to is the same it’s you know it’s nice seeing characters in actual the you know on screen that they’re trying to portray bipolar disorder which is you know really good i haven’t met Daniel G. Garza in person but i’ve seen him virtually many times daniel has been a long time patient leader advocate and educator for hiv aids he has a very impressive resume he’s a board of director for a health center an ambassador for a number of non-profit organizations winner of the hero of hope award for patient advocacy from ipain international foundation as well as having a number of media outlets his own podcast youtube facebook live daniel has a lot going on so this is just an excerpt from our recent zoom conversation you’ll hear more from daniel in a future podcast episode he represents two patient communities those with hiv aids and anal cancer what are your feelings about how popular media has represented you know hiv aids people with hiv aids and or people with cancer and in particular you know anal cancer i think let’s let’s say aids i think aids for a long time aids was just death people just died and one of the very first movies that i ever saw about aids was a movie called it’s my party with um eric roberts uh gregory hunt griffin heinz i think it’s rare anyway he was on on gonzo anyway uh Margaret Cho in it uh uh john is in it there’s a lot of great actors in the movie and it was about how men of that time who were positive and were dying would commit suicide and right so that their families could collect the insurance com money but they would make it seem such a natural debt so that the families would like the insurance and that was one of the first movies um interesting enough my mom and i got to see that movie together when i was really sick in spanish so after i was diagnosed her and i was it was on tv in south texas in spanish and she watched it with me and that changed her view on hiv i think media also print if you open a magazine and you see a medication for hiv and aids they always pick the most beautiful buff guys and they’re out hiking looking at the sunset and it’s so pretty but it’s not always like that medications doesn’t always no um i i think we could do a lot better i think we could do a lot more i think that we need more latino we need more spanish information out there medication doesn’t medication is good for your body but it doesn’t always make you feel great and i hope people can understand that difference like it’s good for me i know my medications are good for me i know they’ve made me strong i have a strong immune system my t-cell count is undetectable i have great hair like everything’s good but it doesn’t always make you feel great there are complications even after all these years of medication there are days when you know diarrhea happens or constipations happen or your mood swings and and i think we need to talk to people about that i i think we lost a little bit of the fear that we had for HIV um back and and people got very like oh there’s a pill like i can no yes yes there is a pill but this is not a club that i want you to join just because it’s not that bad um it it is that bad it is it it affects your mood it affects your relationships um for some people it affects your your vision of your future there are still people in 2020 that i know of who have not told their families that they’re HIV positive there are people who hide their medications in aspirin bottles so that their family doesn’t know that they have HIV so no it’s it’s yes we’ve moved a lot forward in treatment and in services but we we haven’t let people catch up yet and i think that’s where we need that in media we need that representation out there um cancer man um i think anal cancer

    is the butt of the joke and all this i think we don’t talk about it like we we should and i and i’m also guilty but i should i as a um anal cancer survivor i should be more aware of what i talk about and how i talk about it and what i say out there um and i don’t do it mainly because HIV has always been my main focus but it’s connected and i should be more of that and i think and please anybody watching or listening this is not bulletin belittling any other cancers but i think breast cancer has always been up front breast cancer has always been like the main cause that a lot of people go to when they when you hear cancer i think a lot of people go to breast cancer and then everything else falls behind nobody intended uh but i started a facebook page for us to me men with ostomy bags and

    there’s there’s lack of communication in the group i i don’t i haven’t figured out how to get people or gentlemen to talk about it it’s very difficult to get the conversations going because um cancer affects a whole lot it doesn’t just affect your body it’s body mind and soul cancer as a gay man has affected my relationship with my partner not just emotional but physical intimacy not on his end it’s all me because i i put barriers and i set up walls uh because i haven’t had a chance to sit down with other to be very specific to with other gay anal cancer survivors and go how does this affect you with your relationship how does it affect you sexually uh how do you see your body now my last guest for this episode is Ania Flatau who you may remember from the last podcast episode about dance Ania lives in southern california is an avid dancer and was born with spina bifida have you seen you know growing up or now as an adult any images of people with spina bifida they you know had an impact on you positive or negative oof um you know not really like i mentioned like in the the spinal in spinal disability spinal cord injury world i’m growing up i saw a lot of images and and like there’s even a show on tv called push girls oh yeah like all of the representation i saw growing up was people with um spinal cord injuries and um you know i grew up thinking that it was because people like people who are in the mainstream society kind of look at spinal cord injuries as like for lack of a better term sexier than spina bifida so like their stories like they they relate more to the stories of people who’ve gone through trauma than they do you know somebody who’s going to talk to you about like a neural tube defect you know and i was born with blah blah blah blah that’s how i grow up grew up thinking and um i never really saw a lot of images of like influencers with spina bifida and that’s why i feel like it’s so important for like when people with spina bifida have like their conferences and their get-togethers for people with spina bifida that they realize that like even if you’re like not an influencer and you’re not famous because you lived your life with spina bifida and you you work and you you you live your life and and do it to the best of your ability you are an influencer you don’t have to be on tv to be an influencer as long as you’re living a life and and doing something that someone behind behind the lens is looking at and going like i want to do that you are an influencer and you are making an impact um in somebody’s life i’ll give you a quick story so when i graduated from college right um i brought my friend with me who has cerebral palsy and he was struggling with the thought like do i go to school do i not go to school just the fact that he saw me graduate and that i had my diploma in my hand was enough for him to go i’m going i’m going to college like this is what i’m going gonna do and that’s what i mean like you never know who’s looking and you never know who’s like watching every step that you make and is drawing inspiration from what you do yeah i think that like you really don’t have to have that i’m famous label to be of influence every single one of us has that ability that’s my answer to that question um i think that like even though we’re not on tv it’s okay because there will be somebody in your immediate community that is going to make you go that is freaking cool i want to do that you know like you know like well okay i lied there is aaron fathering him aaron fatheringham has spina bifida and you know he’s competed in nitro circus and he’s definitely made a name for himself so he definitely is i haven’t heard of him what does he do no he doesn’t he’s a i mean i’ll google it but yeah he does um it’s i can’t remember the specific name for it but basically it’s like wheelchair skateboarding so if you if you look up nitro circus it’s this massive um like extreme sports um i don’t even know like competition like they have biking and and skateboarding and like they do all these massive tricks and he’s one of those people that like like he was the first person in a wheelchair to do a backflip on a massive like really massive skate skate ramp wow so yeah he is definitely one of those one of those people who is like you know he’s made a name for himself and and you know you throw his name out there and you have spina bifida like 90 90 of us are gonna know who he is um yeah that guy’s crazy but um i mean i would never do it but i definitely see him and i go okay he’s he’s living his best life so why can’t i you know what i mean like whatever that whatever that definition is for you just live your best life is like i think that that’s the point of being an influencer is like seeing somebody killing it and you being like i can do that too you know well i think i can say that none of us seem to be thrilled with how we’re represented in popular media about a week ago i was on a community we go health zoom call and a woman on the autism spectrum urged all of us on the call to boycott a movie i wasn’t familiar with this so i googled it and the movie is called music and sia the musical performer is the director apparently many in the autism community find the yet to be released film offensive it includes spirit stereotypes and they’re upset that the character is played by an actress who is neurotypical of course i can’t comment on any of this since i know few facts but i invite any filmmaker or writer to include a character with my atonic dystrophy in their next creative work and i won’t mind you know if elizabeth moss amanda pete or kate planned [ __ ] play her or me

    thank you for listening to glass half full leslie invites you to leave a rating and review on iTunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot online class half full dot online

  • Coping Just Fine: Working from Home, Streaming Media & Making Masks

    Coping Just Fine: Working from Home, Streaming Media & Making Masks

    Featured are four people — with their own unique health conditions — that are coping and making the best of the quarantine and pandemic.

    Luda Gogolushko, who has SMA Type 3 and lives in Southern California, continues to write and publish from the safety of her home.

    Lindsey Kizer, in North Carolina, gets to telecommute for her job and tries to maintain self-care routines to avoid narcoleptic flare ups.

    Jay Carr, with myotonic dystrophy in Virginia, spends more time with his teenage son during the lockdown. He also cheers others with his humorous Facebook posts and musical interludes.

    Peter Slobodnik, outside of Sacramento, keeps himself busy by making masks for friends and family while also planning an advocacy bike ride to draw attention to his rare disease, Hereditary Spastic Paraplegia.

    Each of these podcast guests has found their own way to cope with the pandemic.

  • Sleep Disorders: Insomnia, Restless Leg Syndrome, Central & Obstructive Sleep Apnea, and Sleep Hygiene

    Sleep Disorders: Insomnia, Restless Leg Syndrome, Central & Obstructive Sleep Apnea, and Sleep Hygiene

    In 2018, a research study found that at least 36% of Americans were sleeping less than seven hours each night. Inadequate sleep can lead to a number of physical and/or emotional conditions. Some common sleep disorders include insomnia, restless leg syndrome, central or obstructive sleep apnea, and sleepwalking.

    Have you perfected your sleep hygiene behaviors to achieve optimal rest and sleep each night? If not, perhaps you’ll want to hear what sleep specialist, Dr. Catherine Darley, has to say.

    In addition to Dr. Darley’s advice, as well as the sleep hygiene tips I offer at the end of this podcast episode, check out this blog post on Brain & Life‘s website.

    Transcript

    welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready hello and happy new year to you happy new decade i was going to close out 2019 with this episode on sleep hoping you could use some of the tips during the frenzied holidays but i got to frenzied so now you can add this to your new year resolutions heck i’m always looking for new advice or research to help my sleep and rest routines i’ve been scrutinizing my sleep for a while now i’ve made changes to my daily rituals all with the intention of improving my night’s sleep i know sleep issues are common amongst my patient community amongst my friends pretty much across the western world there are many books about improving your sleep i’ve read many of them in the glass half full facebook group i did an informal poll asking people about their sleep there were four options do you have trouble falling asleep staying asleep waking up or is your sleep perfect the way it is well no one responded to the last option the majority of the respondents had trouble staying asleep and that’s usually my problem though here and there i have nights where i just can’t fall asleep at the end of this episode i’ll share some of my sleep hygiene tips with you everyone’s different so i don’t know if they’ll help you but i think i found a great guest for this episode her name is catherine darley dr darley is a naturopathic doctor and these types of doctors are guided by principles that include the healing power of nature they first try treatments that are of a lower force and have fewer side effects like behavioral or dietary treatments this happens before prescribing any pharmaceuticals and that philosophy certainly appeals to me i met dr darley at a day-long class she taught about sleep and mental health it was geared toward therapists counselors and nurses i was incognito she travels around the country teaching people about sleep research you can check out her website the link is in the podcast notes on the glass full website what is a sleep specialist so a sleep specialist is a physician who has not only the training of primary care but has also gotten specialized training in sweden as a student and there is actually an academy of sleep medicine which is part of the american academy of medicine and is it is it like a subset of neurology or is it just completely its own special it’s entirely recognized in its own right sleep medicine is actually a relatively new discipline of medicine compared to some others like cardiology or respiratory medicine the sleep annual sleep meeting has only been happening for about 27 years so it’s a relatively new discipline in light of some of the longer history of other disciplines yeah okay yeah it’s interesting i wonder if it’s a comment on society or where is our sleep has it just become progressively worse yeah i don’t know i think that you know it sleeps interesting to me in um you know in our social standing because even though we all sleep and we all must sleep it seems like it’s been an area that really hasn’t gotten much focus until the last 30 years or so and uh and that’s kind of surprising considering how essential and how basic it is but did we know how important it was you know more than 30 years ago did we just take it for granted i think it is taken for granted although there was certainly research being done since the 1940s if not earlier looking at sleep and one of the first when i first started getting interested in sleep was about 1991 in college and so i was doing literature reviews and reading research papers and at that point we knew that at least animals would die without sufficient sleep so i think that’s a pretty good indication of how essential it is and uh you know early 90s that’s a long time ago and the research i was reading at that point had been you know conducted in the 10 or 15 years prior to that so we’ve certainly known for a long time how essential it is so what did bring you into this field of expertise was it those you know that original that research that sort of lit a fire for you i have always found sleep very just personally interesting to me i’ve always been a pretty good sleeper and i’ve really my parents my household that i grew up in prioritized getting sleep and i’ve prioritized getting enough sleep and so i’m really very aware of what happens to my experience personally when i don’t get enough sleep and so that’s part probably of what motivated me i also when i was a kid i slept walked uh into the neighbor’s house when i was 12 which was a pretty um wow noteworthy experience and i think speak to my interest yeah so oh wait so did that run in your family or was that an anomaly or did you have an issue with sleepwalking my i don’t believe that sleepwalking ran in my family but i was a little bit of a sleepwalker that was the most extreme case or example of my sleepwalking but there were a few other times that i would sleepwalk and the last time was when i was in college about age 21. so how it ended abruptly i mean did you cause it to end abruptly by no i didn’t do any treatment it’s sleepwalking is something that people often outgrow it kind of peaks when people are around seven to twelve years old although certainly adults there can be adults who sleepwalk regularly but i’m not one of them okay that’s good because you you you spend time in a lot of hotels with the work you’re doing i’m sure that would be a little scary yes and for people who are regular sleepwalkers adults it can be distressing but it seems every magazine i pick up it doesn’t matter what kind of magazine there’s something about sleep and i’ve read you know a lot of books on sleep i attended your workshop i mean i’m just so intrigued about it but it seems like perhaps a lot of america is intrigued about it so i was wondering if you could tell me you know some of the statistics about sleep or or lack of sleep that contribute to poor physical sure i can and i want to comment on your your observation about many magazines now will have articles about sleep and that it’s something that’s really captured the interest a huge uptick in the amount of media interest and attention and public interest years ago so i think that’s a really positive sign for us improving our sleep on the other hand there’s some new research that evaluated americans sleep up to 2018 and found that 36 of americans are sleeping seven hours or is not enough sleep for adults most adults seven hours or less so that’s a increase in the percentage percentage of americans not getting adequate sleep and i think about it impacting five domains leslie i think i talked about this briefly in the course that you’ve got your physical health and and our quality of life and our kind of non-diagnosable symptoms to full-blown diagnosable anxiety depression as i think of our physical performance and mental performance so many people in america operate cars right which is a form of is absolutely impaired when you’re sleep deprived then there’s this cognitive performance things from simple memory all the way up to complex problem solving are going to be worse your performance will be worse in those areas if you’re not getting adequate sleep and then the fifth dome appropriately to them which can cause disharmony in your relationships and your social functioning basically i asked dr darley to tell me about other common sleep disorders especially insomnia we definitely want to be treating obstructive sleep apnea and there are other sleep breathing disorders is insomnia and we think this person’s uh insomnia is chronic if they’ve had it for more than three months which you know three months can speed by right and someone’s acute insomnia due to maybe a life event a good insomnia continues after that other categories would be movement disorders things like restless leg syndrome other categories are circadian rhythm disorders and this is a category that’s getting a lot more attention now as we learn how pervasive our circadian systems are throughout our bodies one population that really struggles with circadian issues is shift workers about 20 of americans do shift work where they’re commuting to work or working at times they would naturally be sleeping that can cause a big problem and actually increase cancer risk other two categories of sleep disorders are hypersomnias like narcolepsy and then the last category is parasol it’s where we see those more abnormal sleep features such as the sleep walking sleep eating those types of conditions one is you know roughly how common is sleep apnea and i recently read just a short little blurb that there are different types of sleep apnea can you you know elaborate a little on that so we think it’s somewhere between five and ten percent of men have sleep apnea and slightly lower percentage in women but i’d like to make sure that your listeners know that when women get through menopause and their post-menopausal at that point the rates of um be equivalent to the rates in men and it’s because estrogen has a protective function keeping the airway toned and as women go through menopause and no longer have such high estrogen levels their airway is more easily obstructed like men of their age so that’s something to keep in mind for women as they get older and yes there are another type of apnea is called central sleep apnea and the physiology of obstructive versus central sleep apnea is quite quite different what happens with obstruction of sleep apnea the brain is still telling the body to breathe so you’ll still see the diaphragm the chest rising and falling as the person tries to breathe but they’ve got an obstruction in their upper airway kind of right at the back of the throat usually but in central sleep apnea there’s a problem with the brain respiratory drive and the brain is not giving a signal to breathe and so the diaphragm actually will be still during these apnic pauses and they’re not even trying to bend again it may panel even attempt at respiratory effort the obstruction of sleep apnea is more common in people who have high bmi high body mass index but it’s not exclusively true and i think that we generally think that women tend to be more missed diagnosis of obstructive sleep apnea because they tend to be slimmer or smaller people and so we don’t want to just assume that someone who isn’t overweight doesn’t have obstructive sleep apnea because thin young women could have obstructed sleep apnea also it’s really not only is it the entire body habitus but it’s the shape of the airway so for people who have maybe a small or recessed jaw they’re going to be at increased risk people who may have a deviated septum and can’t breathe through their nose and so therefore they’re breathing through their mouth that increases their risk of obstructive sleep apnea or you know if they have a large tongue or enlarged tonsils making the airway more crowded it’s easier to obstruct you know we did you know year decades ago think of it more as a overweight person’s disease but now we know it’s really mostly impacted by the shape of the airway i asked for a bit of an elaboration on the circadian rhythm and how it impacts us so our circadian rhythm is several many systems in our body that help us stay entrained to the 24 hour a day that we’re seeing on our earth and it’s signaled mostly and it’s uh we’re entrained to the day uh environmental day by the time that we get bright light in the morning so you know sometimes people really focus on getting to bed at the same time and that that is the most important for sleep but i would suggest that actually getting up at the same time each morning and getting bright light as soon as you can helps in train your circadian rhythm and your sleep we want our circadian rhythm to be robust so that we are widely awake during the day and deeply asleep at night one of the things that is really confusing our bodies now in modern lifestyle is the amount of artificial bright light that we have available to us at night both on our electronics on the evening cell phones tablets computers tvs etc and then also just with the ambient lighting that we have in our homes and that is that actually causes a delay in our sleep hormone melatonin and it causes a shorter time of that root melatonin is being released each night so that can impact our sleep so in these uh winter months where you know we have less light and i often wake up here in northern california and i don’t have a clock in in the bedroom but i look and it you know i think oh my god it’s like 5 a.m but it turns out to be 8 a.m and there’s just you know like minimal sun and even you in seattle you know how do you how do you get that hit if it doesn’t exist naturally for some people they may choose to use a light box other people may choose to just get up you know even though it’s dark and maybe cold outside get up at the same time turn the lights on really actively start their day and then as soon as it’s light out a great practice is to go out for a walk 20 minutes of a walk with the bright outside light and for those of your listeners who are in seattle or other places that are known for being overcast and cloudy even on an overcast morning it’s going to be brighter outside than almost any indoor setting is going to be and that amount of light will really help clue to your body its day and switch into daytime physiology awake physiology and then i think the other corollary is to purposely be turning down the lights in your home and not only turning down the brightness of them but also switch to more historical types of light waveforms that people would historically be exposed to at in the evening which would be your yellow and think uh sunset or fire light or candlelight those kinds of hues of lighting so what i recommend is people set an alarm on their phone or something for an hour hour and a half before their bedtime and at that time they turn off all the lights in their home except for maybe one light which they’ve put kind of a yellowish hued relatively dim bulb in so they can still do their recreational wind down activities you know snuggling and talking with the family or reading a book or doing some gentle yoga or listening to a podcast or something but they’re not getting bright light they’re not getting blue light i was curious if jack and darling could give us more suggestions on how to improve our sleep hygiene nutrition and exercise have gotten a lot more media attention over the last 60 years than sleep has well if you just had the exercise and nutrition piece that’s not very stable is it you’ve got to have the sleep piece and then i think of some other some other pieces of a healthy foundation being positive social relationships loved ones that we can count on and that we and who have esteem for us and we have esteem for them another one would be joy having joy in our lives and then the sixth connection to nature and there’s lots of research coming out now about how nature improves our health and i know when i’ve been out nature or i exercise on a day my sleep my ability to sleep that evening is easier is enhanced so sleep hygiene is basically creating a lifestyle that promotes healthy sleep and a strong circadian rhythm uh and so there’s many many components of this if i was just going to choose out the top five components of sleep hygiene i would say i mentioned bright light in the morning for 20 minutes ideally in the first hour or two of getting up sooner the better after getting up the second one would be like i said earlier avoiding the blue light and the artificial light at night and replicating as best you can naturalistic historical lighting conditions which would be dim yellowish reddish spectrum of light would be deciding to give yourself enough hours of sleep because insufficient sleep syndrome is definitely the most common sleep problem that i see people having and it contributes to so many domains that can be negatively impacted the physical health the physical performance measures so the way that i think about this which i’m not sure that other people do is that if you are an eight hour sleeper and that’s the ideal amount of sleep for you that means you can have a 16-hour day and if you’re trying to have 17 or 18 hours of activity each day you’re not going to be getting the sleep you need and therefore you’re going to be having some domain and i encourage people to think about the question would you rather have a long day or would you like to have a good healthy day that’s shorter because you’re getting enough sleep and i’m not sure that people are thinking about it quite as explicitly or quite in those terms so that would be the third thing get enough sleep the fifth thing is your sleep hours to rest and sleep and don’t take your daytime rolls and responsibilities to bed with you i think that idea that we’ve probably all heard of leave a bet pad of paper and pencil at your bedside so if you have a good idea in the night you can jot it down i think actually that’s a horrible idea because it trains you to be on all the time instead of practicing some limit setting that it’s okay and it’s valid for me to stop taking care of my responsibilities and just rest and sleep and recover and be recharged for the next day when i can pick those up again so those are my recommendations and then the fifth one would be about probably exercise and just giving yourself enough wind down time between your active day or eating or exercise and turning lights out some people transition more quickly others need a little bit more time but you know kind of evaluating that for yourself and determining how much time you need to wind down so that you’re ready to sleep once you’re in bed regarding insomnia does this refer to something more than having difficulty falling asleep i asked dr darley about waking up in the middle of the night and not being able to fall back to sleep depending on what their problem is if they are aware of waking up gas with a gasp in the middle of the night or if a bed partner or someone sharing the room says that they’re snoring loudly or pausing in their breathing at night they definitely should be evaluated for a sleep breathing disorder if they’re having difficulty with intimates at the beginning of the night to fall asleep being awake in the middle of the night or waking up too early not refreshed not ready for their days insomnia can manifest at all those different points in the night that is something that should be addressed we know that the more episodes of acute insomnia that somebody has the greater their chances of having insomnia in the future so that would be important and then if they have restless leg syndrome where they’re feeling like they just have to move their legs in the evening and that movement uh or that sensation subsides when they move that would be an indication to go see a sleep specialist such high percentage of americans are not getting adequate sleep i would really encourage people to do an optimal sleep plan for two weeks where they’re really prioritizing getting the amount of sleep that they need and just then noticing how does it impact their health and their sense of well-being is it worth it to get more sleep does it really make a difference and how can you do that that’s what i would recommend and i think i ended with that leslie in our sleep class i’m wondering if you had the chance to do it and if so how did that work for you oh i know yeah the more i sleep the better i feel years ago i did my silver presentation i was doing for my patient in my disease community and i had you know impairment like maslow’s hierarchy of needs but it was based on my self-care routine and the foundation is sleep and getting a good night’s sleep is critical for my next day and a lot of what i do during the day is to lead to that optimal sleep experience so it’s based on exercise and winding down stimuli like lights and sounds i take a hot bath every night the only thing i do which is probably contrary to uh what sleep experts suggest is i i watch a little tv in bed i mean there’s you know there’s these recommendations that we make that are based on physiology but every person is an individual and has different success abilities i mean as we know we we’ve all got probably friends who can drink more and and handle it fine you know there’s you know we can give examples in any area of health where we see individual variability and so i encourage people to follow the rules and then if they find that they can break them in one area more power to you dr darley has certainly provided us with food for thought one thing i’ll definitely start doing is getting outside in the morning even if it’s overcast not mentioned in this podcast but we did talk about it during our conversation is starting a sleep journal or diary there are also online versions or apps to help with this dr darley believes it’s good to document and look for trends rather than relying on your subjectivity and another way to track sleep and include relevant data is to use a wearable device to sleep this wouldn’t be comfortable for me but my partner does it and can check to see how much sleep she got the previous night and at what time she may have awakened during the night i remember from my time receiving regular acupuncture treatments that when you wake up in the middle of the night i can point to issues related to different body organs this is all part of traditional chinese medicine so you might if you find that you’re waking up at a particular time every night you might want to consult an acupuncturist anyhow as i mentioned in my conversation with dr darley i am intentional during my day to create a fertile ground for restful sleep i exercise earlier in the day i eat frequent small meals with my last meal several hours before i’m gonna go to bed i do wind down and i limit stimuli such as lights and noise and i take a hot bath using essential oils like lavender which is known to have a relaxing effect and i also take a one to one thc a cbd tincture sublingually under my tongue about an hour before i anticipate falling asleep and this routine usually works but nothing is foolproof anxiety can still rear its ugly head and keep me awake or arouse me from asleep it’s all a work in progress so rest peacefully my friends and when you wake up well rested the next day turn one of your friends onto this podcast thanks for listening

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