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23 episodes with Cataplexy
2 episodes with Cataplexy
4 episodes with Cataplexy
3 episodes with Cataplexy
2 episodes with Cataplexy
3 episodes with Cataplexy
2 episodes with Cataplexy
2 episodes with Cataplexy
2 episodes with Cataplexy
Welcome to this special episode of the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. For major FDA decisions in the field of neurology, we release short special episodes to offer a snapshot of the news, including the main takeaways for the clinical community, as well as highlights of the efficacy and safety profile of the agent in question. In this episode, we cover the recent approval of Avadel's sodium oxybate formulation (Lumryz) as a treatment for pediatric patients with narcolepsy aged 7 years and older. The new indication expands on its previous one, granted in May 2023, which included the the treatment of cataplexy or excessive daytime sleepiness in adults with narcolepsy. It's initial approval was based on data from the phase 3 REST-ON trial (NCT02720744), a large-scale study in which the therapy met all 3 of its primary end points of change from baseline in mean sleep latency on the Maintenance of Wakefulness test, Clinical Global Impression Improvement, and weekly cataplexy attacks. Following its new indication, NeurologyLive sat down with Anne Marie Morse, DO, FAASM, a pediatric sleep disorders expert, to discuss the significance of the new approval. Morse, director of Child Neurology and Pediatric Sleep Medicine at Geisinger Janet Weis Children's Hospital as well as the program director for Child Neurology Residency Program, provided commentary on the clinical considerations behind this once-nightly formulation of sodium oxybate, and how it should be used going forward. For more of NeurologyLive's coverage of sodium oxybate's (Lumryz) expanded indication, head here: FDA Approves Avadel's Sodium Oxybate for Cataplexy or Excessive Daytime Sleepiness in Pedatric Narcolepsy Episode Breakdown: 2:10 – Immediate reaction and significance 4:10 – Considerations and caution with prescribing sodium oxybate 8:20 – Closing remarks and the need to utilize highly effective treatments for narcolepsy Thanks for listening to the NeurologyLive Mind Moments podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com.
Welcome to the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. In this episode, Daniel Claaseen, MD, MS, a professor of neurology and chief of the Behavioral and Cognitive Neurology Division at Vanderbilt University Medical Center, offered his insight on phase 1/2 data that was recently presented at the International Parkinson and Movement Disorder Society (MDS) Congress on ATH434, an investigational drug in development from Alterity Therapeutics for multiple system atrophy (MSA). He dove into the therapy's mechanism of action and the currently known safety profile and considerations for its use, as well as the next steps in advancing care for patients with MSA as a whole. Looking for more movement disorders discussion? Check out the NeurologyLive® movement disorder clinical focus page. Episode Breakdown: 1:10 – Overviewing the conduct of the phase 1/2 studies 3:00 – Notable findings from data presented at MDS 4:30 – Mechanism of action behind ATH434 8:20 – Neurology News Minute 10:20 – Next steps in ATH434's development 11:15 – Current unmet needs for patients with MSA The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here: FDA Removes Partial Hold for Myotonic Dystrophy Agent AOC 1001 FDA Approves Avadel's Sodium Oxybate for Cataplexy or Excessive Daytime Sleepiness in Pedatric Narcolepsy FDA Approves AbbVie's 24-Hour Foscarbidopa/Foslevodopa Pump for Advanced Parkinson Disease Treatment Thanks for listening to the NeurologyLive® Mind Moments® podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com.
Curious about life with narcolepsy? Join me in an eye-opening conversation with my dear friend Lauren Thomas. We unpack her journey living with Narcolepsy Cataplexy, from navigating treatment to her unforgettable experience speaking at the White House. Tune in as we explore the importance of advocating for sleep equity and the personal challenges of seeking diagnosis. Lauren's story is a testament to resilience and the power of advocacy. Don't miss out on this insightful discussion that sheds light on the realities of living with multiple chronic illnesses and the importance of support. Check out out our first episode together https://youtu.be/HJjbZYJs1tA?si=imAcqyzk4CtAcmg3Follow Lauren on IG @lmt826Follow Cheurlin Champagne @cheurlin1788Follow me on Instagram @martis_mslifeVideo Pod: https://youtu.be/-Pl4AV5LUm4?si=nXznLhHzm7F9a8sMSend me a question and I will share it on the pod!: marti@marthines.com www.martihines.com
Sarah had a blast with Omid Singh in the bed this week. They talked about sign language, cuddling, cataplexy triggers, simulation theory, improv energy, and how to make political debates more fun! Omid Singh has an album out on YouTube: Omid Singh Lil Album, you can also follow him @omidsingh on IG and TikTok. Watch Full Episode Here! Sleeping with Sarah is a podcast where comedian and narcoleptic, Sarah Albritton interviews people in her bed. They talk about sleep, comedy, and relationships. Please like and subscribe. IG: @sleepingwithsarahpod, TikTok: @SleepingwithSarah, YouTube: @SleepingwithSarah, and Twitter: @sleepysarahpod. Jam in the Van Productions @jaminthevan You can follow Sarah on Instagram @sarahalbritton & Twitter: @sarahalbritton & TikTok @sarahalbrittoncomedy or visit her at www.sarahalbritton.com Music by Josh Bryant.
The MVP returns and demands we discuss multiple news stories (as fast as possible). Special Guest: Keith Gawla of Pop Up Filmcast and Munster Hunters JonBenet Ramsey Crime Tips Hotline (818) 308-4348 Show Links https://podfixnetwork.com/this-week-today/ Music by Silent Partner https://bit.ly/2SvEZ5z Custom logo by Phil Rood http://philrood.com/
In this week's episode, I spoke with Tara O'Connor, dog mom, aunt, EMG technician, and warrior of Type 1 Narcolepsy (Narcolepsy with Cataplexy). Tara and I talk about the importance of self-advocacy--especially in the school setting--to receive proper accommodations. Unfortunately, Tara talks about how she was denied accommodations for Narcolepsy by her sleep technology teacher in college! How unbelievable is that! Tara also shares the numerous rude remarks she has received due to her condition, but we talk about how she uses these experiences as motivation to advocate for Narcolepsy and improve the experiences of others with sleep disorders--she was even on the local news for World Narcolepsy Day! Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Follow me on Instagram- @neurologicaldisorderpodcast Email me at- neurologicaldisorderpodcast@gmail.com Follow Tara on Instagram- @sleepygal_96Links Tara mentioned to help those with Narcolepsy or any sleep disorderhttps://project-sleep.com/https://www.wakeupnarcolepsy.org/https://www.mayoclinic.org/diseases-conditions/narcolepsy/symptoms-causes/syc-20375497
Mackenzie is a recent college graduate who has lived for over a decade with the sleep disorder narcolepsy (specifically, Type 1 Narcolepsy with Cataplexy). Amazingly, Mackenzie has persevered with a positive attitude and accomplished more than many her age, including becoming an EMT in Italy during the Covid lockdown. Wise and kind, she shares about the impact Jesus has had on helping her deal with her illness and developing her self-confidence. Her story is inspiring, and you'll enjoy getting to know this impressive and thoughtful young woman. Mackenzie quotes the insightful Dr. Seuss: “Those who matter don't mind, and those who mind, don't matter.” You can also find this podcast episode and others on Ellen's EXTRAordinary Lives website at https://www.extraordinary.live/
CME credits: 1.00 Valid until: 14-08-2024 Claim your CME credit at https://reachmd.com/programs/cme/narcolepsy-1-and-2-recognizing-symptoms-including-excessive-sleepiness-and-cataplexy/15575/ This series of bite-sized episodes will take you through the latest information regarding disrupted nighttime sleep and its relationship to cardiovascular risk, plus patient/clinician preferences regarding the treatment of narcolepsy with sodium oxybates.
Emma is joined by Sharon Forstner, a patient advocate living with multiple sleep disorders who went undiagnosed for far too long. In this episode: * Sharon describes how her symptoms began and how she knew nothing about sleep disorders. * Working night shifts as a nurse and assuming that sleep problems were explained by that schedule. * Coping with having 2 kids and a deployed husband and symptoms of multiple undiagnosed sleep disorders. * Sharon describes seeing a neurologist and sleep specialist who missed her symptoms and referred her for mental health treatment. * Finally getting a diagnosis and the mixture of feelings Sharon felt. * The unique issues of CPAP compliance for people with insomnia and narcolepsy with cataplexy. * The need to set boundaries with extended family who don't necessarily understand sleep disorders. Connect with Sharon: www.instagram.com/sharon_elesia www.instagram.com/sleephealth_rn Email: sharonforstner@gmail.com Connect with Emma: Get on the email list here Follow the podcast on Instagram: @sleepapneastories Email Emma at sleepapneastories@gmail.com www.sleepapneastories.com Sponsors: BetterHelp https://www.betterhelp.com/emma for 10% off your first month of online therapy NEW! Support the Podcast! If you would like to support Emma and the 'Sleep Apnea Stories' podcast, you can now contribute monthly. https://podcasters.spotify.com/pod/show/emma-cooksey Click "Support this Podcast". Disclaimer: This podcast episode includes people with sleep apnea discussing their experiences of medical procedures and devices. This is for information purposes only and you should consult with your medical professionals before starting or stopping any medication or treatment. --- Support this podcast: https://podcasters.spotify.com/pod/show/emma-cooksey/support
This week's episode is with Matthew Horsnell, a dedicated advocate and father of 3 with Type 1 Narcolepsy or Narcolepsy with Cataplexy. He is also a researcher and has co-authored 3 papers and is the lead author of 1 other! During our conversation, we talk about the changes Matthew has made to accommodate Type 1 Narcolepsy, the importance of legislative advocacy, how social media is affecting the portrayal of narcolepsy, and how we all can make a difference to raise awareness for narcolepsy and help raise government funding for sleep research. We also touch on his research on narcolepsy and how interested individuals can get involved with narcolepsy research! Make sure to subscribe to the Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts! Follow me on Instagram- @neurologicaldisorderpodcast Email me at- neurologicaldisorderpodcast@gmail.com Links Matthew Mentioned: https://project-sleep.com/category/narcolepsy-nerd-alert/ https://www.wakeupnarcolepsy.org/https://www.hypersomniafoundation.org/
TRANSCRIPT HERE What do Moulin Rouge, My Private Idaho, and cheesy comedies Deuce Bigalow and Rat Race have in common? Terrible depictions of Narcolepsy! Today, Steph is joined by the fashionably creative and wonderful Charlene Barker, to discuss her real life experience of Narcolepsy with Cataplexy, and how it is depicted in the romantic comedy Ode To Joy, starring Martin Freeman. Charlene takes us through what life is like with Narcolepsy and if this film does it justice. Can't be worse than Rowan Atkinson falling asleep mid jog can it??? (p.s. You can watch Ode to Joy here on youtube for $4) Follow Charlene @charlenegirl and check out her amazing handmade jewelry @langlesandlings and vintage preloved clothing @volupture! CONTENT WARNING: injury, car accident, nightmares, some ableist terms. The Podcast episode the film was based on: I've Fallen In Love and I Can't Get Up - This American Life Project Sleep Resources connected to the film: Ode to Joy” PSA Ode to Joy: Resources | IFC Films Ode to Joy - Project Sleep (project-sleep.com) Short Film “Walking Through Peanut Butter” which we also discuss: Walking through Peanut Butter | Short Comedy - YouTube Follow Psychocinematic on Instagram, Twitter and Tiktok! or join our Facebook Group! Email us at psychocinematicpodcast@gmail.com. Join our PATREON to support us and get sikkkk benefits and bonus content! And check out our NEW WEBSITE!!! Find the SHAANT collection from Codex Labs here and use code PSYCHOCINEMATIC20 to get 20% off your first order! REFERENCES: Cataplexy: Causes, Symptoms, and Treatment | Sleep Foundation Narcolepsy - Treatment - NHS (www.nhs.uk) I have narcolepsy, and it's nothing like what you see in movies (mic.com) Narcolepsy is more than a Hollywood punchline, experts explain this mysterious condition - The Hollywood Digest A Comedy of Errors: Ode to Joy's Inaccurate Portrayal of Narcolepsy with Cataplexy - Wake Up Narcolepsy - ‘Ode to Joy' Filmmaker on Long Journey From Studio Rejection to Indie Release – The Hollywood Reporter Martin Freeman: ‘The worst thing anyone's said to me? "I don't love you"' | Martin Freeman | The Guardian Writer and Actor Anna Marr Channels Comedy and Personal Experiences While Combating Stereotypes About Narcolepsy in Short Film Walking Through Peanut Butter - RespectAbility NOTE: This podcast is not designed to be therapeutic, prescriptive or constitute a formal diagnosis for any listener, nor the characters discussed. The host is not representative of all psychologists and opinions stated are her own personal opinion, based on her own learnings and training (and minimal lived experience). Host and co-hosts do not have the final say and can only comment based on their own perspectives, so please let us know if you dispute any of these opinions – we are keen for feedback!
'I was unaware that it wasn't normal to fall asleep when you're sat still.'Ruth Chipperfield, a goldsmith and jewellery designer, had always experienced excessive tiredness, but didn't think anything more of it until a chat with a friend at uni revealed to her that not everyone struggled to stay awake at their desk in the same way she did. With the advice of her great uncle in Australia – where the condition was more recognised – Ruth was diagnosed with narcolepsy, an autoimmune disease that affects the brain's ability to regulate the sleep-wake cycle: when wanting to sleep a sufferer can wake up every second, and when awake they will want to sleep.At its worst for Ruth this meant collapsing up to 30 times a day, and needing constant care from her husband and mum. Ruth took time out from studying chemistry at university to apply for funding for the medication she needed to improve her life – with the help of her mother – and then to get used to it and the fundamental physiological and emotional effects that had on her. During those three years Ruth was able to visit antique fairs – always accompanied, for obvious reasons – where she was inspired to take her childhood love of junk modelling to new heights, and taught herself to work with precious metals and gems, as well as how to solder, make moulds, cast metal, and more, to create her own jewellery designs. Ruth was determined to return to uni, and completed her chemistry degree and Masters, which she is rightly very proud of, even though she had already decided that jewellery designing was the field she wanted to pursue. CreativityFound.co.ukInstagram: @creativityfoundpodcastFacebook: @creativityfoundpodcastPinterest: @creativityfoundTwitter: @creativityfounClubhouse: @clairewaitebrown and Creativity Found Connect clubResearched, edited and produced by Claire Waite BrownMusic: Day Trips by Ketsa Undercover / Ketsa Creative Commons License Free Music Archive - Ketsa - Day TripsArtworks: Emily Portnoi emilyportnoi.co.ukPhoto: Ella Pallet Support the showSupport the show hereSubscribe to the Creativity Found mailing list hereJoin the Creativity Found Collective here
Cynthia Zorn is a mom who has chosen to be a passionate advocate for her daughter, Mackenzie, who was diagnosed with narcolepsy (specifically, Type 1 Narcolepsy with Cataplexy), a serious sleep disorder, at the early age of 10. When Cynthia noticed uncharacteristic behaviors in Mackenzie, who went from being very active to sleeping an inordinate amount, Cynthia didn't give up on pursuing a diagnosis, which took a year. Cynthia's faith has remained strong, and she has been inspired by her daughter's vibrant relationship with Jesus. You'll hear about their trust in God in the midst of a difficult circumstance and their determination to bring good to others through it. Cynthia has written an article about being an advocate for your children. You can find it on my website, www.extraordinary.live/blog-1-1 or by clicking here. She also mentions a helpful organization for those who have or think they might have a sleep disorder: project sleep at https://project-sleep.com/.
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In this months episode we discuss narcolepsy with Matthew Horsnell. Matt is a narcolepsy patient and advocate, and we discuss his journey of living with narcolepsy. SHOW NOTES Introduction of Guest: (5:00) Matt’s Best Advice (11:00) Matt’s Role in the sleep community (12:40) Matt’s symptoms onset (15:00) Matt’s additional symptoms (19:00) Matt’s onset of cataplexy (23:00) Cataplexy triggers (24:45) Delayed diagnosis: (27:00) Nightmares and sleep paralysis onset (31:30) One more question about sleep paralysis (34:15) Partial cataplexy (37:50) Diagnosis and Management: (39:00) Pitolisant (43:45) Strategic Napping (44:15) Bitter Pills (45:15) AASM revised Guidelines (47:22) Sodium Oxybate and Cataplexy (49:00) Finding a sleep physician to manage narcolepsy (55:00) Sleep apnea (60:30) MSLT (62:15) Treat Clinically (65:00) 4 pillars of management (66:00) Patient request/feedback (68:00) Academic vs private practice (71:30) Links to articles and guidelines referenced in this episode are included Trotti LM. Central Disorders of Hypersomnolence. Continuum (Minneap Minn). 2020 Aug;26(4):890-907. Treatment of central disorders of hypersomnolence: an American Academy of Sleep Medicine clinical practice guideline
In this months episode we discuss narcolepsy with Matthew Horsnell. Matt is a narcolepsy patient and advocate, and we discuss his journey of living with narcolepsy. SHOW NOTES Introduction of Guest: (5:00) Matt’s Best Advice (11:00) Matt’s Role in the sleep community (12:40) Matt’s symptoms onset (15:00) Matt’s additional symptoms (19:00) Matt’s onset of cataplexy (23:00) Cataplexy triggers (24:45) Delayed diagnosis: (27:00) Nightmares and sleep paralysis onset (31:30) One more question about sleep paralysis (34:15) Partial cataplexy (37:50) Diagnosis and Management: (39:00) Pitolisant (43:45) Strategic Napping (44:15) Bitter Pills (45:15) AASM revised Guidelines (47:22) Sodium Oxybate and Cataplexy (49:00) Finding a sleep physician to manage narcolepsy (55:00) Sleep apnea (60:30) MSLT (62:15) Treat Clinically (65:00) 4 pillars of management (66:00) Patient request/feedback (68:00) Academic vs private practice (71:30) Links to articles and guidelines referenced in this episode are included Trotti LM. Central Disorders of Hypersomnolence. Continuum (Minneap Minn). 2020 Aug;26(4):890-907. Treatment of central disorders of hypersomnolence: an American Academy of Sleep Medicine clinical practice guideline
Welcome to the NeurologyLive® Mind Moments™ podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. In this episode, we spoke with Darin T. Okuda, MD, professor of neurology and director of Neuroinnovation and the Multiple Sclerosis & Neuroimmunology Imaging Program at The University of Texas Southwestern Medical Center at Dallas; and Karin Cook, senior vice president of medical strategy and clinical ethnographer, Heartbeat Medical Communications. The pair spoke about their research into the wasted costs associated with disease-modifying therapies (DMTs) for patients with multiple sclerosis, what they've observed at their center, the wide-reaching impact of this waste on the healthcare continuum, and the future solutions that are being worked on for this problem. Click here for more coverage of this story: Multiple Sclerosis DMT Waste Is Staggering, New Study Shows Wasted DMTs in Dr. Okuda's office [Image] Episode Breakdown: 1:45 – Background on the study conducted by Okuda et al. 4:05 – Perspective on the cost driven by DMT waste 6:30 – Current landscape of prescriptions and adherence in MS 8:35 – Disparities in MS treatment adherence 11:00 – The link to the physician-patient relationship 16:40 – The process of choosing a DMT and shared decision-making 23:00 – Neurology News Minute 25:45 – Finding solutions to the DMT waste problem 33:40 – The role of the individual neurologist and patient 38:30 – Access to specialist care and resources 42:40 – Building trust with patients and general medical mistrust 47:00 – Next steps and closing thoughts This episode is brought to you by the Medical World News streaming service. Check out new content and shows every day, only at medicalworldnews.com The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here: Zonisamide Oral Suspension FDA-Approved for Partial Seizures in Epilepsy FT218 Receives Tentative Approval for EDS, Cataplexy in Adults With Narcolepsy FDA Clears Rapid Hyperdensity Tool for Inclusion in RapidAI Platform for Neurovascular Conditions ALS Therapy Tofersen Has NDA Accepted by FDA, Granted Priority Review Thanks for listening to the NeurologyLive® Mind Moments™ podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com. REFERENCE 1. Okuda DT, Burgess KW, Cook K, McCreary M, Winkler MD, Moog TM. Hiding in plain sight: the magnitude of unused disease-modifying therapies in multiple sclerosis and strategies for reducing the economic burden. Mult Scler Relat Disord. 2022;63:103920. doi:10.1016/j.msard.2022.103920
Emma is joined by Matt Horsnell and together they discuss: * Matt's journey to a diagnosis of narcolepsy with cataplexy and how obstructive sleep apnea did show up on his original sleep test but wasn't deemed severe enough to treat. * Coping with depression and anxiety along with sleep disorders. * Getting a diagnosis with severe obstructive sleep apnea and beginning treatment with CPAP. * Matt finding ways for his sleep disorders to work for him and engaging with social support in the sleep disorders community. * Becoming involved with sleep patient awareness and advocacy and coming up with the title "the World's Strongest Man with Narcolepsy and Cataplexy". * Matt shares about the Project Sleep event he will take part in next month in Nashville. Find details here: https://project-sleep.com/events/nashville-innovations-in-narcolepsy-awareness-advocacy/ Follow Matt on Instagram: www.instagram.com/mhorsnell This episode is sponsored by Inspire https://www.inspiresleep.com/ Airway Management https://tapintosleep.com/ BetterHelp https://www.betterhelp.com/emma Follow the podcast on Instagram: @sleepapneastories Email Emma at sleepapneastories@gmail.com www.sleepapneastories.com Disclaimer: this episode of the podcast includes people with sleep apnea discussing their own experiences of medical procedures and devices. This is for information purposes only and you should consult with your own medical professionals before you start or stop any medication or treatment.
A good night's sleep is anything but quiet: a myriad of processes occupy our brains, crucial for every aspect of our waking lives. Our increased understanding of the neuroscience of sleep – that sleep may not affect the brain in its entirety – provides a window into the human experiences of sleep deprivation, lucid dreaming, spiritual visitations and a range of clinical sleep disorders, such as insomnia, dream enactment and sleep paralysis.A lecture by Guy LeschzinerThe transcript and downloadable versions of the lecture are available from the Gresham College website:https://www.gresham.ac.uk/lectures-and-events/neuroscience-sleepGresham College has been giving free public lectures since 1597. This tradition continues today with all of our five or so public lectures a week being made available for free download from our website. There are currently over 2,000 lectures free to access or download from the website.Website: http://www.gresham.ac.ukTwitter: http://twitter.com/GreshamCollegeFacebook: https://www.facebook.com/greshamcollegeInstagram: http://www.instagram.com/greshamcollege
#112 Shane Charles is no stranger to adversity. He has been through an incredible amount of challenge and turmoil in his life. The biggest challenge that he has faced is dealing with his narcolepsy. Narcolepsy is defined as a chronic sleep disorder that causes overwhelming daytime drowsiness. The cause of narcolepsy isn't well understood but may involve genetic factors and abnormal signaling in the brain. Imagine being at school and suddenly falling asleep! Imagine being at work and being fired for falling asleep. Imagine driving and almost wrecking your car because you fall asleep. Please join Shawn and Jen in the latest episode of the Hope Radio Podcast as they sit down and talk with Shane Charles about his life. He is positive and encouraging despite being afflicted with this incurable condition. Get ready for some hope and gratitude as you listen to him share about his life!
#39: In this episode, I chat with Julie Flygare, President & CEO of Project Sleep about World Narcolepsy Day 2021 (celebrated on September 22nd each year). I was diagnosed with Narcolepsy while I was a college student at Colorado State. Then in 2014, my cataplexy symptoms developed. This is a neurological condition that has so many stigmas and misinformation. I'm so grateful to Julie for the work she's doing to help people get diagnosed faster and just general awareness. To connect with Julie, click HERE To connect with Leyla, click HERE Check out Project Sleep, HERE Julie Flygare, JD, currently serves as President & CEO of Project Sleep. She is an internationally recognized patient-perspective leader, an accomplished advocate, and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. Since receiving a diagnosis of narcolepsy with cataplexy in 2007, Flygare advanced her leadership in the sleep and healthcare space through speaking engagements, publications, earned media, collaborations, and advocacy and awareness initiatives. Prior to accepting her current role as President & CEO of Project Sleep, Flygare served as President of Project Sleep's Board of Directors, while also gaining invaluable experience in marketing and philanthropy at the Pancreatic Cancer Action Network and City of Hope. Additionally, she served on the National Institutes of Health's Sleep Disorders Research Advisory Board from 2012 – 2015. Flygare received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009, focusing on health law, policy, and rare disease drug development.
Learn how Narcolepsy impacts suffers daily lives from failing classes and demon hallucinations to sleep walking shopping sprees. Just like the book Lexi mentions by Marguerite Utly .......Narcolepsy: A Funny Disorder That's No Laughing Matter.Today's episode is brought to you by HelloFresh! Use Link: https://hellofresh-ca.o5kg.net/c/2544961/791027/7893 Code: HFAFF80Offer: $80 Discount ($50 - $20 - $10) Including Free Shipping on First Box!
Tatiana Maria Corbitt is a writer, artist and advocate. Tatiana is also a person with Type 1 Narcolepsy. In this episode, Tatiana and Claire discuss how the onset of her symptoms occurred after having the flu, while in the first year of college. She was diagnosed in 2017 while studying Applied Biological Studies. Since she experienced such a drastic shift while in the midst of her college career, Tatiana had challenges navigating her studies, managing her symptoms, receiving appropriate accommodations and maintaining her mental health. Initially, Tatiana's family was supportive throughout her diagnosis process, but coming to terms that there wasn't a cure for narcolepsy has caused a strain within the familial relationships. Their hope for her to become a doctor was thwarted when Tatiana couldn't find a university with the appropriate disability resource office available that would advocate for her in her studies. Tatiana currently writes for Health Union about living with narcolepsy. Tatiana shares with Claire her current medication and the value of having a service dog. Her service dog, Kida, assists her in so many different facets which helps Tatiana feel safe while managing symptoms. Because Tatiana's narcolepsy caused such a drastic change in her quality of life, she has had to navigate changes in friendship and familial relationships. Thankfully, she has found community in the Wake Up Narcolepsy Online Support Groups. She recently became a facilitator for a WUN Support Group - LGBTQIA Support Group. You can follow Tatiana on @saltytatertats on Instagram. Her art Instagram is @studioslumber. You can check out her writings about living with narcolepsy here. Tatiana says, “I recommend the Wake Up Narcolepsy Narcolepsy LGBTQIA+ Support Group that I lead on Fridays. They also have other support groups for people with Narcolepsy that I've participated in and highly recommend, especially for people that are newly diagnosed or who don't have support systems at home.” You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
Emma is joined on the podcast by Julie Flygare, President and CEO of Project Sleep. Julie has suffered with Narcolepsy with Cataplexy and is an accomplished sleep disorders advocate. Emma and Julie discuss: *Symptoms and early warning signs of Narcolepsy; *Julie's journey through diagnosis and treatment; *How sleep studies for Narcolepsy differ from those for Sleep Apnea; *The need for more awareness around Sleep Disorders and more money for Sleep Disorders Research; *How listeners can get involved in supporting Project Sleep. You can find all the information about Project Sleep, including social media handles on the website: https://project-sleep.com/ Julie's book "Wide Awake and Dreaming: A Memoir of Narcolepsy" is available now. Find all the details of where to buy it here You can follow Emma on Instagram @sleepapneastories Sign up for email updates about the podcast and get a free printable pdf called "CPAP Lessons I Learned the Hard Way" here
Nikki Moon has survived a full gamut of severe challenges, including issues with sleep, physical health, mental health and trauma. Specifically, she suffered one of the most devastating traumas a person can face — an incident of sexual assault and rape. Whatever the obstacle, however, Nikki turns pain into power: From her narcolepsy and cataplexy she’s learned to use medication pragmatically, and from her assault she’s learned to accept the compassion surrounding her. In this interview, she takes us through what coping has meant for her, how she’s found peace with the personal narrative of her experiences, how she’s braved the difficulty of sharing her story and how she navigates her mental health today. Check out beautiful crafts made of reclaimed wood by Nikki’s family at Lunar Canyon! If you have a story or perspective you’d like to share on the podcast, feel free to tell me a bit about it using this form! Support Redeeming Disorder by contributing to their Tip Jar: https://tips.pinecast.com/jar/redeeming-disorder
Grace McGinnis is a college student studying Pre Med, a Division 1 college athlete and also a person with Type 1 Narcolepsy. In this episode, Grace and Claire discuss how Grace functioned as a “sleepy child” and how she was aware at a young age that her experience of sleepiness wasn’t normal. In her sophomore year of high school, her health and performance as a swimmer were deteriorating. She sought insight from doctors. Around the 5th doctor, they suggested she get a sleep test. She was diagnosed with Type 1 Narcolepsy. Now, Grace is in college and is also a competitive swimmer for the University of Miami! Grace candidly shares how she navigates her daily life of practice, school and friendship. She recommends structure, schedule and naps! She also offers insight into what it has been like to be so transparent about her narcolepsy. Grace’s honesty is so welcoming and it is no surprise as she has created a blog called Sleep G, to share her experience with sleep health and narcolepsy. You can follow Grace at @sleepyg_zzz and @Grace_McGinnis on Instagram. She recommends joining narcolepsy groups on Facebook because as she says, “ It’s a great way to connect with people and learn more.” You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
Nikki Moon has survived a full gamut of severe challenges, including issues with sleep, physical health, mental health and trauma. Specifically, she suffered one of the most devastating traumas a person can face — an incident of sexual assault and rape. Whatever the obstacle, however, Nikki turns pain into power: From her narcolepsy and cataplexy she’s learned to use medication pragmatically, and from her assault she’s learned to accept the compassion surrounding her. In this interview, she takes us through what coping has meant for her, how she’s found peace with the personal narrative of her experiences, how she’s braved the difficulty of sharing her story and how she navigates her mental health today. Check out beautiful crafts made of reclaimed wood by Nikki’s family at Lunar Canyon! If you have a story or perspective you’d like to share on the podcast, feel free to tell me a bit about it using this form! Support Redeeming Disorder by contributing to their Tip Jar: https://tips.pinecast.com/jar/redeeming-disorder
Andy is joined by Dylan Black, a Personal Trainer from Cork who also suffers from Narcolepsy, a condition most people are not overly familiar with but one which has implications on the daily lives of those who live with it. In an incredibly intriguing episode, Dylan tells us what narcolepsy is in easy to understand language and, more importantly, how it affects his life and his fitness. www.thegymadvisors.ie/dylanblackfitness www.thegymadvisors.ie/online-fitness
Dr. George Church is a Professor at Harvard & MIT, co-author of 580 papers, 143 patent publications & the book "Regenesis"; developed methods used for the first genome sequence (1994) & million-fold cost reductions since (via fluor-NGS & nanopores), plus barcoding, DNA assembly from chips, genome editing, writing & recoding; co-initiated BRAIN Initiative (2011) & Genome Projects, machine learning for protein engineering, tissue reprogramming, organoids, xeno-transplantation, in situ 3D DNA, RNA and protein imaging. He is also a person with Type 1 Narcolepsy. In this episode, Dr. Church shares his diagnosis story which occurred alongside his daughter’s diagnosis of narcolepsy. He offers insight on how he navigated his symptoms prior to diagnosis. He also shares how he currently manages his symptoms to live optimally at home and in his thriving lab. Claire was fortunate enough to have Dr. Church explain what his lab focuses on and if he has any future plans to conduct narcolepsy research. You can follow Dr. George Church on Twitter @geochurch and learn more about his research and work here. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
Emma and Gil sit down with Carla Kopp of Weird Giraffe Games and Galactic Raptor Games to discuss designing solo modes for games, the merits of "bots" in solo games, and how these bots tend to be named "Steve." SHOW NOTES 2m00s: Carla's first published game Super Hack Override. 4m53s: We spoke with Morten Monrad Pedersen on Ludology 154 - Leave Me Alone! about using Automa to make solo versions of games. 7m02s: Sarah Reed is a game designer, disability advocate, and all-around excellent person. 11m00s: The Cat Lady implementation for iOS and Android. 18m20s: Just a quick reminder that we’re talking about the digital implementation of the game Cat Lady, as opposed to Carla’s tabletop AIs. AI difficulty levels are more common in apps than they are in tabletop games. 19m45s: The Splendor digital implementation is sadly no longer available. 20m34s: Gil mentions the solo mode that comes in the tabletop version of It’s a Wonderful World. Emma mentions the solo mode from the Galaxy Trucker app. 21m13s: Calico 21m47s: Gil forgets to mention that Friedemann Friese included an “achievement sheet” in Copycat. 23m49s: Race for the Galaxy. We chatted with Theresa Duringer, CEO of Temple Gates, who developed the app, in Ludology 177 - AI AI, Captain! 24m26s: We're talking about the COIN (Counterinsurgencies) series of games, which have asymmetry built into them. Usually, each faction has a bot that allows many or all factions to be present in the game, even at a low player count. We talked to Volko Ruhnke, who began the series, in Ludology 178 - COIN Operated. 24m56s: The virtual gaming platform Tabletop Simulator. 26m54s: The three-body problem. 27m19s: Power Grid: The Robots 28m33s: Dune: Imperium, Smartphone Inc. 29m21s: Gil's second published game Battle Merchants. 31m24s: The Networks 33m10s: The underrated but absolutely amazing Fantasy Realms. 34m49s: Seven Wonders and Alhambra. We discussed desicion scales in games with Matt Wolfe in Ludology 157 - Come Scale Away. 35m36s: Abandon All Artichokes 36m51s: Skull, Space Dealer 37m33s: Weird Giraffe's upcoming games: Sara Perry's Gift of Tulips, and Fertessa Alysse's Wicked & Wise. 40m12s: Tokaido 48m02s: Carla's company with Dan Letzring, Galactic Raptor. Dan also runs Letiman Games. 51m45s: Bunny Kingdom, Root. We interviewed Root's designer, Cole Wehrle, most recently on Ludology 222 - Johnny Fairplay. 53m07s: Charterstone, Feudum 55m48s: The free cardmaking program nanDECK. 56m59s: The often-linked conditions of Narcolepsy and Cataplexy. 1h05m58s: "Tony" here is designer, podcast host, and excellent person Tony Miller. 1h09m09s: Carla’s website, Discord, and Twitter.
Sometimes our heroes aren’t legendary figures, they're the ones right in our home. Bethany Cook’s world shattered when she was diagnosed with Narcolepsy and Cataplexy on the brink of young adulthood. Her mother, Tamara Cook was there to catch her as she fell into grief. As Bethany faced loss of identity, Tamara dealt with the loss of loved ones. Together the two have marched side-by-side in the battlefield of life while caring for each other’s needs. In this episode Bethany, a grad student pursuing psychology, and her mother Tamara, founder of the nonprofit Heart 4 Children, dive into their unbreakable bond that developed out of an unexpected place: mutual suffering. Tamara explains how she was able to draw on her own life experiences to be the compassionate caregiver her daughter needed. Bethany recounts the ways her mother was a steady anchor during turbulent times with her chronic illness, offering just the right balance between encouragement and listening. It’s an intimate conversation on grief, acceptance and what it looks like to care for others in their time of need.
Dr. Jennifer Gudeman is the Vice President, Medical and Clinical Affairs at Avadel Pharmaceuticals. In this episode, Dr. Gudeman and Claire discuss how Avadel Pharmaceuticals is seeking FDA approval for a once-nightly form of sodium oxybate (FT218) for the treatment of EDS and cataplexy in people with narcolepsy. Dr. Jennifer Gudeman was appointed Vice President, Medical and Clinical Affairs at Avadel in December 2020. Avadel is a global biopharmaceutical company committed to improving the standard of care for people with narcolepsy. Dr. Gudeman and her team are focused on publications of primary and secondary data from the phase 3 REST-ON trial of investigational once-nightly FT218 and building out the medical affairs programs. They are also leading an ongoing open-label extension clinical study, called Restore, to evaluate the long-term safety and tolerability of investigational once-nightly FT218. Dr. Gudeman has published numerous peer-reviewed papers and provided domestic and international presentations on partnership with industry for drug development. In 2017, Dr. Gudeman received the Healthcare Businesswomen’s “Rising Star” award. During her career, she has led or contributed to six commercial product launches and three clinical development programs, as well as led interactions with medical societies and patient advocacy organizations to help ensure that commercial medications fulfill their clinically proven therapeutic benefits to patients and providers. Prior to joining Avadel, Dr. Gudeman was Vice President, Medical Affairs at AMAG Pharmaceuticals, overseeing a team of medical science liaisons and scientific communications. Dr. Gudeman graduated summa cum laude with a bachelor’s degree in pharmacy and magna cum laude with a doctorate in pharmacy from St. Louis College of Pharmacy in 1999 and 2000, respectively. To find out more information about Avadel’s Restore Study please go here. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
Shamarla Morgan is a PWN and a narcolepsy advocate. In this episode, Shamarla shares how despite a self-diagnosis of narcolepsy type 1 within the first year of her symptoms, it took four years for her to receive a proper diagnosis. She experienced many frustrating interactions with doctors who didn’t take her communication about the disorder and her symptoms seriously. They chose to test her for other issues. What Shamarla experienced was medical racism and part of her narcolepsy advocacy is to help raise awareness and educate doctors so that other Black Americans and people of color will be listened to when they communicate their symptoms. Shamarla also shares her experience with not taking medication and the decision to take medication when she was in college. Shamarla is really in tune with her body and her biggest lifestyle recommendation is to take naps. Sleep is medicine! You can follow Shamarla on Instagram @sincerelyymorgan and on Facebook @shamarla.morgan. You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
We're so fortunate to be joined in the studio this week with Australian dance music icon, formerly one half of Itch-E and Scratch-E, Stereogamous, The Dissociatives, and so much more that it's difficult to keep up, Paul Mac. His astonishing record, Mesmerism is the culmination of renewed pursuit in experimentation and a return to study at the Sydney Conservatorium of Music. A hypnotically beautiful and engaging piece that only further cements his incredible legend. TRACKS PLAYED: ‘Mesmerism' ‘Seeking A Home In The Goldilocks Zone' ‘Nightingale feat. Lamorna Nightingale' ‘Redfern Address (In Memory Of Vision)' ‘Charnel Hill feat. Jason Noble' ‘Cataplexy' ‘Six Years In Seven Minutes' ‘Flamenco'. See omnystudio.com/listener for privacy information.
This week Candice tells us about a scary condition that could leave you locked in a morgue and Deanna tells about the death by torture method used by Shelly and David Knotek. Please remember to subscribe and rate us/review us! Follow us on Instagram! Become a patron and support us via Patreon! Email us your f*cked up stories at NFWpodcast@gmail.com we'd love to hear from you! C U Next Tuesday!
Diagnosing and managing pediatric narcolepsy with cataplexy poses a significant challenge to clinicians. In younger children, EDS may be vague and present as behavioral problems or concentration difficulties, and its treatment is considered to be similar to that of adults. Yet, the same challenges in diagnosing and treating narcolepsy in adults seem to be exacerbated […]
Here are the links for everything discussed in Episode 40, I'm also including times here so feel free to skip ahead to the topics that interest you. (1:27) Approval of Brextri for COPD maintenance (4:45) Xywav approved for cataplexy (7:42) New treatment for head lice - Xeglyze (10:19) Tecartus approval for MCL CDC updates on COVID-19 & influenza reportingConnect with The Rx Daily Dose:Twitter Instagram YouTube Linkedin WebsiteEmail: therxdailydose@gmail.comConnect with Ian Parnigoni PharmD. on social media:Twitter Instagram Linkedin ★ Support this podcast on Patreon ★
At night our brain can have adventures. Even if they're fully asleep, some people end up sleep walking or sleep driving! The neuroscience of nightmares and dreaming—and what they can tell us about the workings of our brain. This program was originally broadcast in June 2019.
At night our brain can have adventures. Even if they're fully asleep, some people end up sleep walking or sleep driving! The neuroscience of nightmares and dreaming—and what they can tell us about the workings of our brain. This program was originally broadcast in June 2019.
Narcolepsy is a chronic sleep disorder characterized by overwhelming daytime drowsiness and sudden attacks of sleep. People with narcolepsy often find it difficult to stay awake for long periods of time, regardless of the circumstances. Narcolepsy can cause serious disruptions in your daily routine. Our guest today is Lindsey who will discuss her life with narcolepsy. Lindsey grew up in Charlotte NC and is currently residing nearby in Belmont, NC with her husband and dog. She was diagnosed in May of 2019 after dealing with symptoms since childhood. She was previously misdiagnosed and had doctors dismiss her sleepiness for being a normal teenager or college student. She continued to press doctors for answers and finally received a diagnosis and began treatment less than a year ago. She is now trying to speak out an advocate so that others do not have to have the same long path to diagnosis she did.
Episode 11 Chlamydia with Clau The sun rises over the San Joaquin Valley, California,today is May 8, 2020. On April 28, 2020, the USPSTF released a final recommendation about prevention of tobacco use in children and adolescents. It is recommended that primary care clinicians provide interventions, including education or brief counseling, to prevent initiation of tobacco use among children and adolescents. Note that it doesn’t say prevention of “smoking”, it says prevention of “tobacco use” because we know that vaping is “a thing” among youth nowadays. This is a grade B recommendation, which means there is moderate to substantial benefit for this service. Now, an update about COVID-19. As of May 4, 2020, the CDC reports a total of 1,160,000 cases and 68,000 deaths due to COVID-19 in the USA. It has been a rough year so far for humanity! On May 1st, 2020, the FDA issued an Emergency Use Authorization to remdesivir for the treatment of COVID-19. Remdesivir can be used in hospitalized patients with severe disease. Remdesivir may shorten the time it takes to recover from the infection. It is given intravenously only. The issuance of an Emergency Use Authorization is different than FDA approval. Let’s stay up-to-date as this pandemic continues to evolve.***Welcome to Rio Bravo qWeek, the podcast of the Rio Bravo Family Medicine Residency Program, recorded weekly from Bakersfield, California, the land where growing is happening everywhere.The Rio Bravo Family Medicine Residency Program trains residents and students to prevent illnesses and bring health and hope to our community. Our mission: To Seek, Teach and Serve. Sponsored by Clinica Sierra Vista, Providing compassionate and affordable care to patients throughout Kern and Fresno counties since 1971. [Music continues and fades…] ***"As you would have people do to you, do to them; and what you dislike to be done to you, don't do to them." Taken from Al-Kafi, a Muslim book.In a way or another, the Golden Rule is preached by many major and minor religions, “Do unto others as you would have them do unto you.” I think it’s a wonderful rule. Today we have a very sweet guest who is a very positive person and a hard worker. Welcome Dr Claudia Carranza, thanks for accepting my invitation to talk in front of the microphone… again! As you know, we ask 5 questions in this podcast, and we’ll start with question number 1.Question Number 1: Who are you?My name is Claudia Carranza, I am a second-year family medicine resident in the wonderful Rio Bravo Family Medicine Residency program in Bakersfield, CA. I grew up in Peru then moved to the States for college, attended a couple of community colleges before transferring to UCSD as a Biology major. Then went to Ross University School of Medicine in the Caribbean where I earned my medical degree. I did 1 year of Internal Medicine residency, and then transferred to Family Medicine and I could not be happier!I am also a wife to a very busy IM resident, I am a Dog mom to Chewie. I don’t have lots of time for hobbies but when there’s time I like to do some strength training, dance, go on walks or runs with Chewie, cook healthy meals, bake and hang out with my hubby and friends. My favorite movie is Love Actually, and my favorite sport is swimming.Question number 2: What did you learn this week?This week I learned about the difference between Chlamydia Test of Cure (TOC) and Retesting. At our clinic, we have quite a few obstetrics patients, and they all get tested for Chlamydia as new OB patients, as part of their prenatal lab panel. When they are positive, they get treatment, and after treatment they undergo a Test Of Cure or TOC, no earlier than 3 weeks after completion of therapy. All patients with documented infection should also undergo retesting; this includes pregnant patients. When we have a pregnant patient who is infected we inquire about their partner and encourage the partner's treatment. Those partners, just like anyone with a documented infection, should have retesting done. Example: Let’s say we get a positive C. trachomatis test on one of our pregnant patients. We have to notify the patient of the results and the need for treatment. The recommended regimen for treatment is 1g oral Azithromycin given as a single dose.If you have a patient who CANNOT tolerate Azithromycin then you may treat with either amoxicillin or erythromycin.Recommended doses: Amoxicillin 500mg orally TID for 7 days, Erythromycin base 500mg QID for 7 days or 250mg QID for 14 days, Erythromycin ethylsuccinate 800mg QID for 7 days or 400mg QID for 14 days.Remember after treating the patient and hopefully also their partner, the pregnant patient will need a TOC. Other patients who require a test of cure are any patients that show persistent symptoms or that were treated using a regimen with inferior cure rates, such as erythromycin or amoxicillin. RetestingRetesting is done to check if a patient has been re-infected. This can be done 3 months after treatment or at their first visit thereafter within 12 months of treatment.Now, think you are at the hospital and you have a pregnant patient that comes to triage in active labor. They brought some of their prenatal records and you know they had a positive C. trachomatis test, and she was treated but she did not have a test of cure, or you don’t have the records to confirm the results. In this case, there is usually not enough time to get a test of cure or retest prior to delivery, so these patients NEED TO BE TREATED upon admission with one of the recommended regimens. Of note, when treating pregnant patients; the antibiotics contraindicated during pregnancy (and lactation) are: Doxycycline, levofloxacin, ofloxacin, and erythromycin estolate.Comment: The pregnancy categories by letters (A, B, C, D, X) were updated on June 30, 2015, by the FDA. Now, all medications are required to include three sections with explanations: Pregnancy, Lactation and Females and Males of Reproductive Potential. Erythromycin should not be used during the first trimester of pregnancy. However, it may be appropriate as an alternative agent for the treatment of chlamydial infections in pregnant women (consult current guidelines)Treatment of the partner(s)There are certain states in which Expedited Partner Therapy (or EPT) is permissible. This means a physician can treat the sex partner of a patient who is being treated for chlamydia; in other words, prescribe their partner medication without having examined them. California is one of the 44 states in which EPT is permissible. Question number 3: Why is that knowledge important for you and your patients? C. trachomatis is the most commonly reported sexually transmitted disease. First of all, the reason why it is important to treat a pregnant patient is to prevent infection transmission during vaginal delivery. If infection is present during delivery the newborn is at risk for developing conjunctivitis or pneumonia. The most effective therapy if the newborn develops either or both is oral erythromycin; Why can we just treat the newborns? It is not that simple. There are studies that have shown an increased risk of hypertrophic pyloric stenosis (IHPS), especially if the infant is treated before 2 weeks of life. How likely is an infant to get IHPS if treated with erythromycin? There is a study by Rosenman and associates that compared the use of erythromycin prophylaxis with watchful waiting in a hypothetic cohort of neonates exposed to C. trachomatis. For every30infants treated with erythromycin, one additional case of pyloric stenosis would occur. This would be quite a few infants if we let chlamydia go untreated and newborns requiring treatment.Pyloric stenosis in a nutshell is a disorder in which the pylorus or gastric outlet can become very narrow or even obstructed which leads to forceful vomiting and requires surgery to fix it.Another caveat to treating an infant is that Erythromycin is effective in up to 90 percent of cases of conjunctivitis and approximately 80 percent of cases of pneumonia caused by C. trachomatis. Therefore, the infant needs close monitoring and at times a second round of treatment. I want the listeners to think for a minute and Just ask your adult self: How fun is it to take antibiotics? The answer is most likely, NOT at all fun; there are always side effects and your GI system is usually the most affected. Now imagine how a tiny little baby must feel. I would NOT want to put an infant through this treatment unless it is ABSOLUTELY necessary, so if we can prevent it by testing and treating mothers then let’s do that! Question number 4: How did you get that knowledge? I mostly read UpToDate, AAFP, NEJM, and check the CDC website for updates. If I am not quite sure where I will be able to find a specific topic then sometimes I google what my question is and look through the list to see if any of the sources are reputable or if the articles are from a well known journal then I read the contents. Question number 5: Where did that knowledge come from? For this topic, I initially had the help of our host Dr Arreaza and then I read different articles in UpToDate, such as “Treatment of Chlamydia Trachomatis infection” and “Chlamydia trachomatis infection of the newborn”. I also read an AAFP article from American Family Physician “Chlamydia trachomatis exposure in newborn”, the CDC “Legal Status of Expedited Partner Therapy”, “Chlamydial infections”, “STDs Clinical Prevention Guidance” and finally Pubmed “Azithromycin in early infancy and pyloric stenosis.”____________________________OTHER SECTIONSSpeaking Medical: Cataplexyby Terrance McGillThe Medical word of the week is Cataplexy. Cataplexy is emotionally-triggered transient muscle weakness. Most episodes are triggered by strong, generally positive emotions such as laughter, joking, or excitement. Episodes may also be triggered by anger or grief in some individuals. Cataplexy develops within three to five years of the onset of sleepiness in 60 percent of people with narcolepsy. Remember the word of the week: Cataplexy, See you next week!____________________________Espanish Por Favor: Agruras by Yodaisy RodriguezThe Spanish word of the week is agruras. Agruras means heartburn (the medical term is pyrosis), and it is typically described as a burning sensation in the retrosternal area, most commonly experienced in the postprandial period, but can be used as well when trying to describe reflux. The scenario will be a patient saying: “Doctor, tengo agrugras”. Agruras is probably a common complaint among our “chili pepper lovers”. Patients with agruras may require additional evaluation if they have red flags, such as weight loss, hematemesis, loss of appetite, vomiting, or more.Now you know the Spanish word of the day, agruras, all you need to do now is asses your patient’s heartburn.____________________________For your Sanityby Fermin Garmendia and Terrance McGill—Doc, Doc—Who’s there?—Disease—Disease who?—Disease the worse disaster I’ve ever seenWhat’s the anesthesiologist’s ABC? Airway, Book, Chair!Conclusion: Now we conclude our episode number 11 “Chlamydia with Clau”. Remember to order a TEST OF CURE for ALL your positive chlamydia patients who are pregnant, and RETEST everyone after 3 months of treatment. Don’t forget to treat sexual partner (or partners) to prevent chlamydia reinfection. It is permissible to send a prescription for the partner, even if you have not seen them. Cataplexy is an interesting symptom in narcolepsy, although it’s uncommon, you need to recognize it when you see it. And, if you have a heartburn after eating your pizza, remember the Spanish word of the day, agruras. _____________________This is the end of Rio Bravo qWeek. We say good bye from Bakersfield, a special place in the beautiful Central Valley of California, United States, a land where growing is happening everywhere.If you have any feedback about this podcast, contact us by email RBresidency@clinicasierravista.org, or visit our website riobravofmrp.org/qweek. This podcast was created with educational purposes only. Visit your primary care physician for additional medical advice. _____________________Our podcast team is Hector Arreaza, Claudia Carranza, Yodaisy Rodriguez, Terrance McGill and Fermin Garmendia. Audio edition: Suraj Amrutia. See you soon! ______________________References “Treatment of Chlamydia trachomatis infection” by Katherine Hsu, MD, MPH, FAAP, last updated: Mar 02, 2020, UpToDate, https://www.uptodate.com/contents/treatment-of-chlamydia-trachomatis-infection?search=Treatment%20of%20Chlamydia%20Trachomatis%20infection&source=search_result&selectedTitle=1~143&usage_type=default&display_rank=1 “Chlamydia trachomatis infections in the newborn” by Margaret R Hammerschlag, last updated: Nov 15, 2018, UpToDate, https://www.uptodate.com/contents/chlamydia-trachomatis-infections-in-the-newborn?search=2)%09Chlamydia%20trachomatis%20infection%20of%20the%20newborn&source=search_result&selectedTitle=1~143&usage_type=default&display_rank=1 “Chlamydia Trachomatis Infections: Screening, Diagnosis, and Management” by Ranit Mishori, Erica McClaskey and Vince J. Winklerprins, Georgetown University School of Medicine, Washington, District of Columbia, American Family Physician, www.aafp.org/afp, Volume 86, Number 12, December 15, 2012. “Legal Status of Expedited Partner Therapy”, Centers for Disease Control and Prevention, https://www.cdc.gov/std/ept/legal/default.htm , accesed on May 6, 2020. “Chlamydial infections”, Centers For Disease Control and Prevention, https://www.cdc.gov/std/tg2015/chlamydia.htm , accessed on May 6, 2020. “STDs Clinical Prevention Guidance”, Centers for Disease Control and Prevention, https://www.cdc.gov/std/tg2015/clinical.htm , accessex on May 6, 2020. “Azithromycin in early infancy and pyloric stenosis” by Matthew D. Eberly, Matilda B. Eide, Jennifer L. Thompson and Cade M. Nylund, Pediatrics, The Official Journal of the Amercan Academy of Pediatrics, March 2015, https://pediatrics.aappublications.org/content/135/3/483 “Clinical features and diagnosis of narcolepsy in adults” by Thomas E Scammell, last updated: Feb 12, 2020, UpToDate, https://www.uptodate.com/contents/clinical-features-and-diagnosis-of-narcolepsy-in-adults?search=8)%09Clinical%20features%20and%20diagnosis%20of%20narcolepsy%20in%20adults,%20Author:%20Thomas%20E%20Scammell,%20MD&source=search_result&selectedTitle=1~150&usage_type=default&display_rank=1#H1
On today's show Matthew welcomes three of his legacy best friends from high school, Salvatore Diana, Elura Nanos, and Karen Marinelli. A bit of an origin story, the three reminisce about the simpler times back in the 1980s when the biggest thing the world had to worry about was nuclear holocaust — and also when Matt had hair. Lots and lots of hair. Both Elura and Karen are mothers to children with rare diseases so the conversation does get pretty real. We hope you enjoy it.
Mike McHargue is a bestselling author of Finding God in the Waves, and soon to be released You’re a Miracle (and a Pain in the Ass). He is the host of Ask Science Mike podcast and co-founded The Liturgist Podcast. He also is an international speaker, science advisor and story consultant for film and television. This past year he was diagnosed with narcolepsy type 1. In this episode, Mike shares how a health crisis led to multiple diagnoses, including narcolepsy type 1. He discusses how he is adapting to a new lifestyle and despite his multiple comorbid conditions, he is able to continue to do fulfilling work. Mike also gives insight on how his family is adapting to the changes as well. Mike has a great book coming out on April 28th, You’re a Miracle (and a Pain in the Ass), which he and Claire dive into. Mike sees his position in the public eye as an opportunity to be “open, honest and un-self-conscious” about his disabilities. You can follow Mike at @mikemchargue on Instagram, Twitter and Facebook. You can learn more about his new book and podcast at https://asksciencemike.com/. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.
Please rate the show so others can find it to use as a resource.Matt's background.Symptoms of Narcolepsy with Cataplexy and effects on everyday life.Physical Activity, lifting heavy things and what that does for Matt.The problem with men and chronic conditions...Using social media for good.Meeting a childhood hero & deciding to lift weights.Freeing oneself by fighting back.Invisible illness.Support groups.Matt's thoughts about control, being aggressive and being a father.Setting goals and what's next?Support the show (http://www.patreon.com/chronicvictory)
#4: Julie Flygare is a narcolepsy spokesperson and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy. She lives in Los Angeles and speaks across the country and world to open people's hearts and minds to the real narcolepsy, a neurological disorder affecting 3 million people worldwide. Julie is also the founder of Project Sleep, which aims to improve public health by educating individuals about the importance of sleep health and sleep disorders. Project Sleep educates and empowers individuals using events, campaigns, and programs to bring people together and talk about sleep as a pillar of health. In this episode, you’ll learn about Julie and her own narcolepsy story, how she approaches being present, saying no, living life on her own terms, and how she went about getting an international day dedicated to narcolepsy! (September 22nd!) To connect with Julie Flygare, click HERE To connect with Leyla Sarper (host), click HERE To find out more about Project Sleep & World Narcolepsy Day check out: https://project-sleep.com/worldnarcolepsyday/ To learn more about Julie Flygare check out: http://julieflygare.com/ Don’t forget to subscribe to the show so you can see when the next episode is posted! If you enjoyed this episode, please share with a friend who may also get value from it. And finally, please leave a review and let us know what you liked or any valuable takeaways you left with. Thank you! XO Leyla
Sarah is an 18 year old who was diagnosed with Narcolepsy with Cataplexy. She has been on a very hard journey through her very young life. She is such an incredible inspiration and has such a positive attitude about her situation. Please reach out to her on IG @psych0_but_cute and on her blog page https://thoughtoutlet297297228.wordpress.com/She is going to change the world!Also at https://linktr.ee/chronicmomsclubProducts: https://linktr.ee/ilenabickley
Julie Flygare is an author, Founder, CEO & President of Project Sleep, an advocate and a person with narcolepsy. She started the Narcolepsy Not Alone Campaign, the Jack and Julie Scholarships for college-age students with narcolepsy and the Rising Voices of Narcolepsy Program. In this episode, Julie shares her diagnosis story which led her to change her career trajectory and embark on becoming a vocal advocate for people with narcolepsy. Her advocacy has allowed her to write a memoir, found a non-profit, work in the public policy space, create international social campaigns, and develop programs that empower other pwns to become advocates. She also shares the exciting upcoming World Narcolepsy Day launch which takes place September 22, 2019. This episode is jam-packed with information about the programs and support Project Sleep is currently offering. Julie and Claire discuss what is going on with federal funding for sleep and narcolepsy research. How to use social media as an advocate, and what it’s like to write a memoir! It was such a pleasure to hear Julie's story and work. You can follow Julie at @REMRunner on Instagram & Twitter and @JulieFlygareAuthor on Facebook. You can learn more about advocacy work at www.julieflygare.com. You can also follow Project Sleeps efforts at @project_sleep on Instagram & Twitter and @ProjectSleepAwareness on Facebook. You can learn more about the programs, initiatives, and support Project Sleep offers at www.project-sleep.com. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
At night our brain can have adventures. Even if they're fully asleep, some people end up sleep walking or even sleep driving! The neuroscience of nightmares and dreaming—and what they can tell us about the workings of our brain.
Dr. Jason Ong is an Associate Professor in the Dept of Neurology and the Center for Circadian and Sleep Medicine at the Northwestern University Feinberg School of Medicine. In this episode, Dr. Ong and Claire discuss narcolepsy and mental health. Dr Ong’s primary research interest is focused on non-pharmacological sleep disorders, including cognitive-behavioral therapy (CBT) and mindfulness meditation. He has a clinical practice where he delivers CBT for insomnia and provides psychosocial support for patients with narcolepsy. He also shares recent findings is research on how to improve sleep quality through behavioral sleep medicine. We are so grateful for the research and work Dr. Ong is doing and how understanding and effective way to treat mental health and sleep habits can improve the lives of people with narcolepsy. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
Elle Wales is a graphic designer, known as Falling Asleep Elle (on the internet), creator of narcolepsy memes and a person with narcolepsy. In this episode, Elle shares her diagnosis journey with Claire and how she navigated her university education while figuring out how to best manage symptoms. In the midst of all these transitions, Elle’s imagination, creative talents, passion for advocacy and honesty influenced her to first create a narcolepsy guidebook for her honours project, which you can access on falling-asleep.com. Elle also discusses the transition from school to maintain full-time work. Elle has continued her creative advocacy endeavors by creating #NarcolepsyMemes. #NarcolepsyMemes are shareable images or gifs that usually speak about the reality of living with narcolepsy in a humorous but not belittling way. Through Instagram and #NarcolepsyMemes, Elle educates, advocates, and simply shares the day to day life of a PWN. She also has been honest and open about her mental health and how it does/does not relate to her narcolepsy. It was such a pleasure to hear Elle’s story and work. You can follow Elle at @falling_asleep_elle on Instagram and @fallingasleepnarcolepsy on Facebook. You can learn more about narcolepsy on falling-asleep.com. Elle’s from Australia, so she recommends the Narcolepsy Support Australia Facebook Group. She also recommends the Rising Voices of Narcolepsy Program facilitated by Project Sleep. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
In this podcast with Jeffrey M. Dayno, M.D., Neurologist and Chief Medical Officer for Harmony Biosciences, we hear a first hand update on drug pitolisant, an “investigational drug to help improve excessive daytime sleepiness and cataplexy in people with narcolepsy.” Dayno tells the listeners that “Pitolisant works differently than other therapies because it increases histamine in the brain.” He refers to narcolepsy as a “disorder of sleep/wake state instability. The sleep/wake switch is deep in the core of the brain…and narcolepsy is similar to a flickering light bulb because states of sleep and wakefulness are so unpredictable.” According to Dayno, Harmony Biosciences is “very committed” to a better understanding of the sleep/wake state and the role of histamine to stabilize sleep and wakefulness. Dayno tells the listeners that there are other symptoms to narcolepsy besides excessive daytime sleepiness. Cataplexy, or a decrease in muscle tone, can be as subtle as dropping objects or droopy eyelids. Hallucinations and vivid dreams are also signs of narcolepsy. You can find more information at www.knownarcolepsy.com. Dayno mentioned that the FDA allowed Harmony to open an expanded access program for appropriate patients. For more information, please visit www.thepeacenarcolepsyprogram.com and speak with your doctor.
Nicole Jeray is an LPGA tour player and long-time advocate for narcolepsy awareness. Since graduating from Northern Illinois University, she has played professional golf worldwide for 22 years. Nicole is her own agent and has negotiated all of her sponsorship arrangements. In this episode, we hear Nicole’s diagnosis journey and how she navigated her professional career while managing symptoms of narcolepsy. Nicole has always been vocal and honest about her condition and discusses with Claire why she never felt the need to hide the truth of her situation. Nicole also shares lifestyle tips she has learned along the way to her professional golfing career. She is a member of the WUN board of directors and leads the narcolepsy young adult online support group. She will be presenting at our upcoming Wake Up Narcolepsy Education Day in Rochester, Minnesota at Mayo Clinic. She will be talking about, “Living Well with Narcolepsy”. You can register for the event on our website: www.wakeupnarcolepsy.org You can follow Nicole at @nicole.jeray on Facebook. You can find out more about her professional golfing career at http://www.nicolejeray.com/. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
This is this second of a two-episode series in our deep dive into idiopathic hypersomnia and potential relation to type 2 narcolepsy. This week we are speaking Betsy Ashcraft. Betsy Ashcraft is a retired lawyer who practiced law for over 20 years specializing in securities and corporate litigation, and capital markets. She is also the mother of a person with idiopathic hypersomnia. In this episode, Claire and Betsy discuss the journey to get her son properly diagnosed with IH and how originally doctors believed he had narcolepsy. Betsy details the symptoms that she saw in her son that didn’t line up with narcolepsy symptoms and how an article on Dr. David Rye helped her realize he had IH. Betsy also shares about the programs, awareness work and resources the Hypersomnia Foundation provides to those who are seeking out more information about idiopathic hypersomnia. To find out more information about Idiopathic hypersomnia go to www.hypersomniafoundation.org. You can Follow Hypersomnia Foundation at @hypersomniafoundation on Instagram and Facebook and @hypersomnianews on Twitter. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
This is this first of a two-episode series in our deep dive into Idiopathic hypersomnia and potential relation to type 2 narcolepsy. This week we are speaking Dr. David Rye. Dr. David Rye is Professor of Neurology at Emory University, board certified in Neurology and Sleep Medicine. Dr. Rye is also chair of the Scientific Advisory Board for Hypersomnia Foundation. In this episode, Claire and Dr. Rye discuss Idiopathic hypersomnia, another complex sleep disorder that often takes people with Idiopathic hypersomnia years to get properly diagnosed. He details the differences between IH and narcolepsy and current treatments for Idiopathic hypersomnia. He also shares the good work that Hypersomnia Foundation is doing to inform and spread awareness about Idiopathic hypersomnia. To find out more information about Idiopathic hypersomnia go to www.hypersomniafoundation.org. You can Follow Hypersomnia Foundation at @hypersomniafoundation on Instagram and Facebook and @hypersomnianews on Twitter. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
Anna Leigh Marr is an actor, writer, voice-over artist and a person with Narcolepsy. In this episode, Anna shares her diagnosis journey whereupon it took 4 years to get properly diagnosed and all they while she completed her BA at Northwestern University. Claire and Anna discuss our culture’s glorification of the overworked/underslept lifestyle and how it might confuse those experiencing symptoms of narcolepsy. Anna also shares her experience of being an actor and writer with a focus on comedy and improv while her cataplexy was slowly developing. Anna is determined to be an advocate for others with narcolepsy and spreading awareness through comedy that doesn’t perpetuate stereotypes or spread misinformation. Currently, she is developing a web series about a comedian trying to make in NYC while coming to terms with their narcolepsy and cataplexy. She is highlighting the funny and potentially awkward things that narcolepsy brings out in life. Anna also is the co-founder of Bluelaces Theatre Co. which creates immersive, multi-sensory theatrical experiences specifically designed for audiences with autism and other developmental differences. You can follow Anna at @marrzipanna on Instagram and Twitter. You can find out more about Bluelaces Theatre Co. at www.bluelaces.org/. She recommends participating in the Project Sleep's Rising Voices of Narcolepsy program. She also recommends doing CBT (cognitive behavioral therapy) as part of your symptom management and find a behavioral sleep specialist in your area. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
HTH007 Paul Mac - Cataplexy (Borderland State Remix) by Here To Hell
Sara Kowalczyk is a mother and women’s health patient advocate, clinical researcher, regulatory writer and person with Narcolepsy. In this episode, Sara shares her diagnosis story but also her decision and experience in becoming a mother. Claire and Sara discuss how Sara developed an expertise on narcolepsy and women’s health while going through two pregnancies with narcolepsy/cataplexy. She conducted a survey and has led support groups surrounding narcolepsy, pregnancy and motherhood. Sara earned 2 masters-level degrees from Boston University in medical science and public health (epidemiology and biostatistics). She has conducted independent survey-based research studies on pregnancy perceptions and experiences, cognitive-related symptoms, and patient reported outcomes (the latter is called the Boston University Narcolepsy and Idiopathic Hypersomnia Patient Perspectives Study (BUNIHPPS). When Sara isn’t working on her passions related to patient advocacy, she is enjoying time spent with her family and adorable children, Brendan and Julia. Sara recommends the following Facebook Groups: Xyrem Support group, Pregnant people with narcolepsy and mothers, Narcolepsy/cataplexy education focused group and BUNIHPPS. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
#Narcolepsy #cataplexy #sleepparalysis #hypnagogichallucinations #fibromyalgia #NarcolepsyNotAlone #ChronicLife #RareDiseaseWeek #rarediseaseadvocate #sleeperofthehouse #chronicillness #invisibleillness #autoimmunedisease #health #spoons #illness #fibromyalgia #SleepAwarenessWeek #multiplesclerosis #idiopathichypersomnia #rare Disease Day #NapCave #sleepyamerican #sleepytees #disability #dreaming #beYou #batman #cape #superheroes #sleephero #sleepin2019 #pillow #Gifts #daylightsavings I love someone with Narcolepsy w Cataplexy, Restless Legs Synd, Fibromyalgia, Arthritis, central sleep apnea, MS, depression—myself. #Happysleepweek #womensday --- Send in a voice message: https://anchor.fm/thenapcast/message
Andre Royal is a father, chef, entrepreneur, and person with Narcolepsy. In this episode, Andre shares his complicated journey to get properly diagnosed since he was living with multiple complicated medical conditions. Getting diagnosed created a career crossroads for Andre. Since then, Andre has worked to find a career that will best support him and his schedule but also fulfill him in the work that he is doing. Feeling inspired by the power of social media, Andre began posting food creations on Instagram which built his reputation in his community. This has led him to be sponsored by food companies but also launch a non-profit! Suddenly Sleepy Sleepwalk is an annual 5k that raises awareness about narcolepsy in Eugene, Oregon. It is a fun-filled family event and if you are close by please come out on March 10, 2019, and participate. This next year Suddenly Sleepy will become a non-profit and continue to expand its opportunities to raises awareness about narcolepsy. You can follow Andre at @chef_andre_royal on Instagram and @chefandreroyal on Facebook. You can also learn more about Suddenly Sleepy Sleepwalk here and follow along at @suddenlysleepysleepwalk5K on Instagram. You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
Erin Carey is a mother of five girls and two are CWN (children with narcolepsy). When Kyla started showing symptoms of narcolepsy Erin initially thought it was diabetes. When Kyla communicated she was falling asleep at school, Erin knew due to her sister’s own diagnosis of narcolepsy, that Kyla most likely had narcolepsy as well. In this episode, Erin shares how once Kyla was properly diagnosed she knew that Kendall, Kyla’s younger sister, also had narcolepsy. Erin had her family get genetic testing to see if any of the other kids had the genetic marker. Kendall did and shortly after was diagnosed with narcolepsy. As a mother two children with narcolepsy, Erin details how she works to allow her family to be able to do what they love. When it comes to medication, schedule and schooling Kyla and Kendall have differing plans, but the entire family has adapted to the Keto diet. Erin now is a keto coach and also started a non-profit FACES (Families and Children Experiencing Symptoms) of Narcolepsy. You can follow Erin and learn more about FACES at https://facesofnarcolepsy.org/ and @FACESofNarcolepsy on Facebook. You can also learn more about keto on Keto with Erin Facebook Group You can follow us at @narcolepsy_360 on Instagram and @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
Kelsey Biddle is a PWN (person with narcolepsy) that was diagnosed, just over a year ago, with Type 1 Narcolepsy. In this episode, Kelsey shares the unique journey of being diagnosed within six weeks of the onset of symptoms. Kelsey has taken this past year to fully transition into her “new normal” by finding the right medications and creating a supportive schedule that allows her to do her job well as a clinical research coordinator in an Alzheimer’s research group in the Psychiatry & Neurology department at Brigham & Women’s hospital. Kelsey shares with Claire how she has allowed herself to grieve since coming to terms with her narcolepsy, but also she hasn’t given up hope in becoming a doctor. Kelsey offers great advice on self-care and how she schedules her days to promote wakefulness. Oh, and Kelsey is currently training for the Boston Marathon! Kelsey is part of Wake Up Narcolepsy’s 2019 Team for the Boston Marathon and is working to raise $50,000 for narcolepsy research. You can follow Kelsey at @biddlekd on Instagram and Facebook. You can also follow her @kbiddle616 on Twitter. If you are interested in Kelsey’s “coming out” story click here. You can also support her in her marathon training by donating here. You can follow us at @narcolepsy_360 on Instagram and @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
Dr. Brian Murray is an Associate Professor, Neurology and Sleep Medicine at University of Toronto Department of Medicine, Chair of Royal College Specialty Committee in Neurology and Head of Division of Neurology & Chair of Research Ethics Board Sunnybrook Health Sciences Center. Dr. Murray cares mostly for adult people with narcolepsy and also, young adults with narcolepsy transitioning from pediatrics into adult care. In this episode, Dr. Murray shares his expertise and approach to supporting the young adult patients who are transitioning into adult care. Claire and Dr. Murray discuss college accommodations, medication responsibility, life & family planning, and sleep hygiene. Dr. Murray also offers insight into how treatment may change or rather be fine-tuned with the digitization of sleep studies. He also shares simple ways you can utilize health tracking apps on smartphones to better gather data on individual’s daily symptoms and management of those symptoms. We are grateful for Dr. Murray’s insight and passion for treating PWN’s and supporting them to have a full life. You can follow us at @narcolepsy_360 on Instagram and @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
Gina Dennis is a PWN (person with narcolepsy), but is also an FWN (family with narcolepsy), since her mother, son and ex-husband all have narcolepsy. In this episode, Gina shares the decades-long journey to be diagnosed with narcolepsy. She remembers having narcoleptic symptoms as early as 5 years old but wasn’t diagnosed until her thirties. Once her son was diagnosed, she deep dived on the internet to help finds ways to mitigate his symptoms. In her research, she found adapting to a low-carb eating lifestyle could mitigate symptoms. Naturally, she experimented with herself first and convinced her family to try this eating habit as well. Gina, her mom and son all are keto and it has brought greater energy and outlook to them all. Gina has since shared her findings with the narcoleptic community, became a Certified Health Coach, and launched a website called Madcap Narcolepsy. In her free time, she coaches others on holistic approaches and lifestyle changes to live a more wakeful life. You can follow Gina @madcapnarcolepsy on Facebook, Instagram, Youtube and @MadcapMiss on Twitter. Interested in learning more about Gina and her work? Go to madcapnarcolepsy.com. Interested in learning more about Keto? Join her Madcap Keto for Narcolepsy Facebook Group. You can follow us at @narcolepsy_360 on Instagram and @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
Matt Hieb is the father of Madi, a child living with narcolepsy. In this episode, Matt recounts the journey on getting Madi properly diagnosed with narcolepsy. She was five when her symptoms started, so doctors didn’t take her symptoms as signs of a sleep disorder. Since Madi’s diagnosis, the Hieb’s have been learning their new “normal”. Matt shares first-hand experience advocating for Madi in her school, to her doctors, and even to Madi herself. He touches on how narcolepsy effect Madi socially and how they have started multiple fundraising initiatives to promote awareness and offset travel cost for CCK. Matt recommends two Facebook Groups- Parents of Children with Narcolepsy (United States) and Online Auction to Support Camp for Children with Narcolepsy You can follow us at @narcolepsy_360 on Instagram and @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.
Dr. Kiran Maski is a Pediatric Neurologist that specializes in Sleep Medicine. She is the Director of the Neurology Sleep Clinic at Boston Children's Hospital @bostonchildrens. In this episode, Dr. Maski shares how she got into studying Sleep Medicine and how she leads the Sleep Clinic at Boston Children's Hospital. She also details how she brings in a group of other specialists that address the comorbidity that tends to come into to play with a narcolepsy diagnosis.Dr. Maski is passionate about improving diagnostic delays and she has developed a screening tool to identify children and adolescents with narcolepsy and idiopathic hypersomnia in the community. With this tool, she hopes to bring awareness about CNS hypersomnia conditions to children, parents, teachers, school nurses, and healthcare providers. She is partnering with Wake Up Narcolepsy and other sleep centers to validate this Hypersomnia Screening Tool validated. If you are interested in participating in the study please click here. We are grateful for Dr. Maski who works to raise awareness of narcolepsy and prompt referrals to appropriate pediatric specialists for faster diagnoses.You can follow us at @narcolepsy_360 on Instagram and @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes.Disclaimer: Since recording this episode, Sodium oxybate has been approved by the FDA for pediatric use. Narcolepsy 360 is a production of Wake Up Narcolepsy, in partnership with Jazz Pharmaceutical.
Henry Nicholls is a person with narcolepsy, an author and science journalist specializing in evolutionary biology, conservation, the history of biology and sleep. His most recent publication is SLEEPYHEAD: The Neuroscience of a Good Night's Rest. In this episode, Henry shares about his own experience in getting his narcolepsy diagnosed and how he has been able to build a career through writing and journalism. He also details how in writing a book about sleep disorders, he was able to identify that he deals with multiple sleep disorders beyond narcolepsy, and also how this is common for people living with narcolepsy. He traveled all over the world interviewing sleep experts, clinicians, and researchers about sleep disorders-- in many ways, it was clarifying and illuminating to see the science behind disorders that affect him. So much so that he has been able to achieve better sleeping habits and get actually restful sleep! You can follow Henry @WayOfThePanda on Twitter and @SleepyheadByHenryNicholls on Facebook. If you are interested in learning more about his journalism and books, please go to http://henrynicholls.com. You can follow us at @narcolepsy_360 on Instagram and @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes. Narcolepsy 360 is a production of Wake Up Narcolepsy, in partnership with Jazz Pharmaceutical.
Monica and David Gow are co-founders and board members of Wake Up Narcolepsy. They are parents of a young adult with narcolepsy. In this episode, Monica and David share their journey on getting their son properly diagnosed with narcolepsy. The struggle and gross negligence of doctors, who didn’t take their sons symptoms seriously, led them to start Wake Up Narcolepsy, a non-profit organization to raise research funds for a cure and raise awareness about narcolepsy. This month they are celebrating the 10 year anniversary of Wake Up Narcolepsy. Monica and David also tell us about how it all started and what they hope Wake Up Narcolepsy offers in the next 10+ years. You can follow Monica @wognom on Twitter. If you are interested in any of the events, services, and support Wake Up Narcolepsy offers, please go to www.wakeupnarcolepsy.org. You can follow us at @narcolepsy_360 on Instagram and @wakeupnarcolepsy on Instagram, Twitter, and Facebook. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on iTunes. Narcolepsy 360 is a production of Wake Up Narcolepsy, in partnership with Jazz Pharmaceutical.
Sleep disorders can be difficult to diagnose and treat. A science journalist discusses his efforts to overcome narcolepsy, which produces extreme daytime sleepiness, and cataplexy, which produces instant sleep-like paralysis, as well as the science behind sleep disorders.
On this episode we discuss Narcolepsy with Jennifer Martin. Jennifer has been diagnosed with this sleeping disorder and is very excited to share her experiences with us and our listeners. Narcolepsy is a disabling sleep disorder whereby individuals have excessive daytime sleepiness, or a constant urge to sleep, because their sleep is fragmented, meaning that we do not go through the usual cycles of sleep and are left in a state of sleep deprivation the following day. For me personally I can sleep 10 or 12 hours straight at night and still have symptoms the next day. It's about the quality of sleep rather than the quantity. Some narcoleptics, because of this lack of quality sleep, experience hallucinations, short-term memory problems, slurred speech, difficulty concentrating, automatic behavior and even something called cataplexy.
This week Sarah had New York comedian Amy Shanker in her bed. You can follow Amy on Twitter and Instagram @AmyShanker. They got into it talking about cataplexy triggers, restless leg syndrome, the first couple years in stand up and teaching. Sleeping with Sarah is a podcast where comedian and narcoleptic, Sarah Albritton interviews people in her bed. They talk about sleep, comedy, and relationships. Visit www.sleepingwithsarah.com for more information. You can follow Sarah on Instagram @sarahalbritton & Twitter:@sarahalbritton or visit her at www.sarahalbritton.com To find out more about Super Narcoleptic Girl, please follow on Twitter @SNGWebSeries & Instagram or visit the SNG Website.
Our new friend Hilary spends her days learning the ins and outs of speech pathology while trying not to fall asleep in the middle of it all. This week we dive into Narcolepsy (w/ Cataplexy). We talk about a whole bunch of wacky stuff like, tongues that grow hair?!? Doctors writing like intoxicated 5 year olds, Taylor's debilitating snoring problems, Jeff's low grade narcolepsy, falling asleep in the middle of hanky-panky and much much more!
Our new friend Hilary spends her days learning the ins and outs of speech pathology while trying not to fall asleep in the middle of it all. This week we dive into Narcolepsy (w/ Cataplexy). We talk about a whole bunch of wacky stuff like, tongues that grow hair?!? Doctors writing like intoxicated 5 year olds, Taylor's debilitating snoring problems, Jeff's low grade narcolepsy, falling asleep in the middle of hanky-panky and much much more!
Our new friend Hilary spends her days learning the ins and outs of speech pathology while trying not to fall asleep in the middle of it all. This week we dive into Narcolepsy (w/ Cataplexy). We talk about a whole bunch of wacky stuff like, tongues that grow hair?!? Doctors writing like intoxicated 5 year olds, Taylor's debilitating snoring problems, Jeff's low grade narcolepsy, falling asleep in the middle of hanky-panky and much much more! Get exclusive content on Patreon: http://www.patreon.com/sickboy Subscribe on Apple Podcasts: https://itunes.apple.com/ca/podcast/sickboy/id1034035933?mt=2# Visit http://www.hellofresh.ca/sickboy and enter promo code SICKBOY to get 50% your first Hello Fresh box Visit http://www.freshbooks.com/sickboy and enter Sickboy in the ‘How did you hear about us’ section to get your free one month trial of this amazing cloud accounting software
Annie Howard, LA based filmmaker, editor at The Hollywood Reporter Narcolepsy with Cataplexy Generally, narcolepsy comes about between the ages of 10-25, presenting with symptoms like excessive daytime sleepiness, cataplexy, sleep disruption, sleep paralysis and hallucinations. It takes most people an average of seven doctors and ten years to get the correct diagnosis. What exactly triggers narcolepsy is unknown and being studied. Cataplexy presents as the weakening of muscles when you feel strong emotions and is often a sign of narcolepsy but does NOT always present with narcolepsy. Join us in this episode as we discuss Annie's journey of symptoms, diagnosis and treatment!! Weekly Challenge: Beautiful friends, this week you are going to be glowing because we are getting hot and steamy in the tub. That's right: The challenge is to take as many hot baths as are appropriate for you!! This is a super duper self-love practice. Calm the nerves, find some quiet, fall in love with yourself and treat your body how it deserves to be treated. If you do not have a tub, I urge you to treat yourself to the Korean spa or a sauna this week. Follow me of IG @sheajackie for bath updates! Don't forget that updates are often in my stories.. In This Episode, We Discuss: Narcolepsy symptoms Cataplexy symptoms Why it's hard to diagnose How to diagnose with PST and MSLT Emotional connections to the symptoms Treating cataplexy and narcolepsy How to have a demanding job with narcolepsy The drugs prescribed Holistic benefits from things like sunshine, water and meditation Expressing and exploring your anger and frustration around illness Resources from this Episode: Stanford Sleep Medicine Center Annie's neurologist Happy listening! SaveSave SaveSave
It's episode 02 of Season 8. On this week's show we have six tales about bullies, burnings, and bedlam. "Her Last Call"† written by S.H. Cooper and performed by Jessica McEvoy & Addison Peacock & Nichole Goodnight & Alexis Bristowe. (Story starts around 00:05:00) "Video Footage"† written by A.L. and performed by Alexis Bristowe & Atticus Jackson & Addison Peacock & Nichole Goodnight & Kyle Akers & James Cleveland. (Story starts around 00:26:30) "Diary of a Woman with Cataplexy"‡ written by Shelby Scott and performed by David Ault & Nikolle Doolin & Mike DelGaudio. (Story starts around 00:40:00) "Forgetful Jones"† written by Lindsay Moore and performed by Nichole Goodnight & Jessica McEvoy & Nikolle Doolin & Elie Hirschman & Erika Sanderson. (Story starts around 01:04:00) "Saying Goodbye to Victor"‡ written by Rona Vaselaar and performed by Erika Sanderson & James Cleveland. (Story starts around 01:23:50) "Christopher"† written by AE Peters and performed by Jessica McEvoy & Addison Peacock. (Story starts around 01:37:35) Click here to learn more about the voice actors on The NoSleep Podcast Click here to learn more about Darkest Night podcast. Click here to learn more about S.H. Cooper Click here to learn more about Lindsay Moore Click here to learn more about Rona Vaselaar Executive Producer & Host: David Cummings Musical score composed by: Brandon Boone Audio adaptations produced by: Phil Michalski† & Jeff Clement‡ "Diary of a Woman with Cataplexy" illustration courtesy of Lukasz Godlewski Audio program ©2016 - Creative Reason Media Inc. - All Rights Reserved - No reproduction or use of this content is permitted without the express written consent of Creative Reason Media Inc.. The copyrights for each story are held by the respective authors.
It's episode 02 of Season 8. On this week's show we have six tales about bullies, burnings, and bedlam. "Her Last Call"† written by S.H. Cooper and performed by Jessica McEvoy & Addison Peacock & Nichole Goodnight & Alexis Bristowe. (Story starts around 00:05:00) "Video Footage"† written by A.L. and performed by Alexis Bristowe & Atticus Jackson & Addison Peacock & Nichole Goodnight & Kyle Akers & James Cleveland. (Story starts around 00:26:30) "Diary of a Woman with Cataplexy"‡ written by Shelby Scott and performed by David Ault & Nikolle Doolin & Mike DelGaudio. (Story starts around 00:40:00) "Forgetful Jones"† written by Lindsay Moore and performed by Nichole Goodnight & Jessica McEvoy & Nikolle Doolin & Elie Hirschman & Erika Sanderson. (Story starts around 01:04:00) "Saying Goodbye to Victor"‡ written by Rona Vaselaar and performed by Erika Sanderson & James Cleveland. (Story starts around 01:23:50) "Christopher"† written by AE Peters and performed by Jessica McEvoy & Addison Peacock. (Story starts around 01:37:35) Please visit www.thenosleeppodcast.com for full show notes and links to learn more about our authors, voice actors, and producers. Executive Producer & Host: David Cummings Musical score composed by: Brandon Boone Audio adaptations produced by: Phil Michalski† & Jeff Clement‡ "Diary of a Woman with Cataplexy" illustration courtesy of Lukasz Godlewski Audio program ©2016 - Creative Reason Media Inc. - All Rights Reserved - No reproduction or use of this content is permitted without the express written consent of Creative Reason Media Inc.. The copyrights for each story are held by the respective authors.
Grace Lusk & I got under the covers and talked about lucid dreaming, slumber parties, weird food combinations, physics and more! Grace Lusk is an LA-based comedian, writer and actress. You can find out more at www.gracelusk.com and follow her on Twitter @gracelusk and instagram @graycpoo. This podcast is brought to you by audible.com. You can get a free audio book and a 30-day trial by going to http://www.audibletrial.com/sleepingwithsarah Sleeping with Sarah is a podcast where comedian and narcoleptic, Sarah Albritton interviews people in her bed. They talk about sleep, dreams, relationships, sex, comedy & more. You can follow Sarah on twitter:@sarahalbritton or visit her website http://www.sarahalbritton.com or http://www.sleepingwithsarah.com. Music by Josh Bryant. You can view the video version of the podcast on Sarah's Youtube channel.http://www.youtube.com/sarahalbrittoncomedy
Sarah Albritton sleeps with Jamie Campbell and they talk about cataplexy, sleeping with friends, adjusting to LA and admitting things when half-awake! This podcast is brought to you by audible.com. You can get a free audio book and a 30-day trial by going to http://www.audibletrial.com/sleepingwithsarah Jamie Campbell is a stand up comedian and actor based in LA. He stars in the webseries Lunch & Learn by Designer Pages. His debut album, Tell Me You're Proud of Me, debuted at #1 on Amazon comedy charts. You can find upcoming dates at http://www.jamiecampbellcomedy.com and follow him on Twitter: http://www.twitter.com/jamiecampbell Sleeping with Sarah is a podcast where comedian and narcoleptic, Sarah Albritton interviews people in her bed. They talk about sleep, dreams, comedy, life and whatever else comes up. You can follow Sarah on twitter:@sarahalbritton or visit her websitewww.sarahalbritton.com or www.sleepingwithsarah.com. Music by Josh Bryant. You can view the video version of the podcast on Sarah's Youtube channel.
Question: Which sleep disorder is associated with cataplexy? Answer: A. Narcolepsy Rationale: Cataplexy describes an involuntary loss of muscle function that is temporary. Cataplexy is most commonly associated with narcolepsy, which involves increased sleepiness during the daytime. A patient with narcolepsy may take medications that act as stimulants to help keep him awake; some of […] The post QOD 72: Cataplexy and Sleeping Disorders (Neuro/Basic Care and Comfort) appeared first on NURSING.com.
NRSNG NCLEX® Question of the Day (Nursing Podcast for NCLEX® Prep and Nursing School)
Question: Which sleep disorder is associated with cataplexy? Answer: A. Narcolepsy Rationale: Cataplexy describes an involuntary loss of muscle function that is temporary. Cataplexy is most commonly associated with narcolepsy, which involves increased sleepiness during the daytime. A patient with… The post QOD 72: Cataplexy and Sleeping Disorders (Neuro/Basic Care and Comfort) appeared first on NURSING.com.
Imagine sleeping all the time but never feeling rested or falling asleep while driving. LPGA Player Nicole Jeray discusses her battle with Narcolepsy and Cataplexy as well as the difficulties she encountered while playing the tour. … Read more about this episode...
Imagine sleeping all the time but never feeling rested or falling asleep while driving. LPGA Player Nicole Jeray discusses her battle with Narcolepsy and Cataplexy as well as the difficulties she encountered while playing the tour. … Read more about this episode...
Ultimatum emerges from their sudden sabbatical to bring you the first new IMC in months. We fully disclose where we've been. We took L'americano to the L.A. Shorts Fest and met friends from the movie Cataplexy.We talk about our experiences in working on the indie feature The Banshee Chapter.We finally released M v. W online with special thanks to Andy Gabrys for doing the score.The making of our newest movie Eden, made for the Producer's Guild's Weekend Shorts Contest.Schmollywood gets skipped over.Think How I Think:we do one-sentence reviews for every movie we've seen since June during the "Year of Garbage" including Harry Potter, Captain America, Attack the Block and Drive among many others.
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