Narcolepsy Navigators

Kerly Bwoga
Narcolepsy Navigators

Narcolepsy Navigators isn't just another podcast; it's a lifeline, a space where every story shared is a step towards changing the narrative around narcolepsy, idiopathic hypersomnia and Klein-Levin syndrome. Every episode is a peek into the lives of people navigating these conditions every single day. It's raw, it's real, and it’s about sharing stories that are way too important to miss. Because when we share, we have the power to change narratives – that’s our mantra, "Share a story to change a story." Everyday life with these conditions is an unseen odyssey, an intricate dance of challenges that most can't fathom. But we're here to bring those stories into the light, to give a voice to the silent struggles and the victories that often go unnoticed. It's about time the world saw beyond the misconceptions and understood the full impact these conditions have on someone's life.

  1. Redefining Rest: Haley’s Resilience with IH and Chronic Illnesses

    DEC 3

    Redefining Rest: Haley’s Resilience with IH and Chronic Illnesses

    Years ago, Hayley Wall made the bold decision to transition from a demanding hospital role to a flexible occupational therapy position in pediatric home health. This change not only suited her professional skills but also provided the adaptability needed to manage her idiopathic hypersomnia (IH). In this episode, Hayley opens up about how this career shift has empowered her to effectively balance her health with her work and personal life. We also hear from our co-host Liz, who shares her anticipation of an upcoming family event and reflects on her own journey living with narcolepsy. Navigating the complexities of chronic illness is no easy feat, especially when conditions like type 1 diabetes, idiopathic hypersomnia, and even narcolepsy intersect. Our conversation traverses the landscape of symptoms, diagnostics, and the technological aids that assist in managing these conditions. Hayley and I exchange stories about how self-awareness has been vital in recognizing and addressing the symptoms of our respective illnesses. The dialogue offers insights into the diagnostic processes for IH and the differences from narcolepsy, painting a vivid picture of the day-to-day challenges faced by those living with these conditions. The power of community, advocacy, and transparency emerges as a central theme throughout our discussion. Hayley shares her passion for advocacy through her social media presence, the Sleepy_OT, and underscores the importance of being open about health challenges with employers to ensure the necessary accommodations are in place. As we explore the balance between professional duties and personal health, we highlight the significant role of supportive communities in making the journey less isolating. Wrapping up with a note of encouragement, we remind our listeners to engage in self-care and seek professional guidance for their health needs.   Chapters Timestamps (02:44) Benefits of Pediatric Home Health(07:59) Parental Control and Support for Diabetes (16:37) Managing Productivity and Energy Levels (19:37) Using Yoga Balls for Sensory Input (24:28) Flexibility and Understanding in Home Health (29:36) Raising Awareness of Idiopathic Hypersomnia (36:23) Navigating Professional Identity With Chronic Conditions (48:03) Overlap in Sleep Disorders and Comorbidities Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow and support Haley:Instagram: https://www.instagram.com/thesleepy_ot/ Rare Patient Voice: https://rarepatientvoice.com/rp/thesleepyot Follow and support Narcolepsy Navigators: OUR WEBSITE GUYS>>>>>>> https://napsforlife.wixsite.com/napsforlife  Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/

    50 min
  2. Living with Narcolepsy & Autism: Rahmat's Path

    NOV 29

    Living with Narcolepsy & Autism: Rahmat's Path

    Rahmat Farina's journey with narcolepsy began at the age of 20, and it has been marked by resilience and introspection. Imagine trying to maintain your education and daily life while being suddenly overtaken by sleep attacks and sleep paralysis—this was Rahmat's reality. His initial struggles were compounded by disbelief from his family, but understanding grew as his condition became more visible to those around him. With a background in psychology, Rahmat was well-equipped to seek the right medical guidance, shedding light on the perseverance required to navigate the unknown and find answers. His story is a powerful reminder of the importance of early diagnosis and the transformative impact of self-awareness. In our conversation, the complexities of living with both narcolepsy type 2 and autism are laid bare, revealing the necessity for personalized strategies. Rahmat shares how lifestyle changes, such as diet and exercise, have contributed to managing his symptoms. We also delve into the emotional intricacies of relationships, focusing on the support and understanding that are crucial for someone with chronic health challenges. Rahmat's insights reveal the profound strength found in community and connection, underscoring the hope for increased global awareness of narcolepsy, particularly in Indonesia. This episode is not just a narrative of personal growth but an invitation to foster understanding and support among those facing similar paths.   Chapters Timestamps   (04:33) Sharing About Sleep Paralysis Symptoms  (08:53) Finding a Diagnosis  (13:18) Impact of Undiagnosed Narcolepsy on Health  (17:01) Evolving Friendships and Support System  (22:36) Identifying Food Triggers for Sleepiness  (34:02) Raising Awareness for Narcolepsy Support    Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  NEW WEBSITE GUYS>>>>>>> https://napsforlife.wixsite.com/napsforlife    ***If you find these symptoms relatable, please seek medical advice.***

    40 min
  3. Awake in Colour: Angela’s Creative Outlet for Narcolepsy

    NOV 17

    Awake in Colour: Angela’s Creative Outlet for Narcolepsy

    In this compelling episode of Narcolepsy Navigators, we meet Angela, an inspiring artist living with narcolepsy and cataplexy. Through her candid storytelling, Angela reveals how creativity and support systems have become her sanctuary amidst the challenges of living with unpredictable sleep disorders. What You’ll Learn: How Angela uses bead art as a therapeutic escape from medical trauma and daily challenges. The role of emotional support animals, including Angela’s beloved rat, Didamus, in fostering mental well-being. The complexities of living with cataplexy, including sudden muscle weakness, public misconceptions, and the proactive steps Angela takes to educate others with resources like pamphlets for healthcare professionals. Why Angela turns to horror and sci-fi films as a coping strategy for managing cataplexy triggers and the fascinating intersection of lucid dreaming with her condition. Highlights: Angela’s resilience in turning challenges into triumphs, including gaining international recognition for her art and accolades from the drag community. The vital role of supportive caregivers and networks in helping those with narcolepsy navigate life’s hurdles. Insights into the need for greater empathy, awareness, and accurate representation of narcolepsy and cataplexy in society and media. Join us as Angela shares her journey of creativity, advocacy, and resilience, proving that even in the face of immense challenges, art and community can be transformative. Listen Now: Discover how Angela’s story sheds light on the realities of living with invisible disabilities and the profound impact of art and support on mental health. Chapter Timestamps (00:10) Navigating Life With Narcolepsy and Art(13:54) Living With Severe Cataplexy Challenges(24:07) Artistic Escape and Lucid Dreaming(33:44) Navigating Life Through Art and Narcolepsy Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow and support Angela: Website: https://sleepyunicornpixelart.com Instagram: https://www.instagram.com/awesomeangela13/ TikTok: https://www.tiktok.com/@awesomeangela13?is_from_webapp=1&sender_device=pc  Follow and support Narcolepsy Navigators: Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  NEW WEBSITE GUYS>>>>>>> https://napsforlife.wixsite.com/napsforlife  THANK YOU TO EVERY SINGLE PERSON WHO TAKES THE TIME TO LISTEN. WE APPRECIATE THE SUPPORT SO MUCH!

    46 min
  4. Narcolepsy’s Hidden Toll: Tamby’s Journey

    OCT 28

    Narcolepsy’s Hidden Toll: Tamby’s Journey

    Welcome back to Narcolepsy Navigators for an eye-opening Season Two episode that dives into Tamby's journey with narcolepsy. In this heartfelt conversation, Tamby shares the raw reality of living with a misunderstood condition, navigating cultural misconceptions, and dealing with a whirlwind of challenges, from hallucinations to unexpected cataplexy attacks. She recounts memorable moments, like when family members tried to ward off “evil spirits” by breaking eggs over her head, and reveals how even a Seventh-day Adventist boarding school, where she hoped for understanding, fell short. This episode goes deeper, uncovering the well-intentioned, if unconventional, interventions from teachers and family, and Tamby’s resilience through years of misdiagnoses and social stigma. Together, we explore why advocacy and accurate portrayals in media matter, and how support systems shape the lives of people with narcolepsy. Join us for Tamby’s incredible story and a closer look at the strength, humour, and humanity needed to live boldly with narcolepsy. Chapter Timestamps (00:10) Life With Narcolepsy(09:17) Struggles With Sleep and School(21:24) Navigating School and Misdiagnoses(27:36) Navigating Narcolepsy and Misunderstanding(40:38) Challenges of Living With Narcolepsy(51:28) Living With Narcolepsy and Advocacy Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow us on Social Media for updates: Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast ***If you find these symptoms relatable, please seek medical advice.***

    1h 1m
  5. Mathilda: Thriving with Narcolepsy from Age Three

    SEP 22

    Mathilda: Thriving with Narcolepsy from Age Three

    Imagine being the youngest person ever diagnosed with narcolepsy at just three years old. Today, we're honoured to share the extraordinary journey of Mathilda, who has spent her life battling and thriving despite this complex condition. Joined by our Marketing Manager Iris, also living with narcolepsy type 1, we dive into Mathilda's world—from her early diagnosis to the release of her mother Claire's heartfelt memoir, "Waking Mathilda." In this deeply personal episode, Mathilda opens up about the emotional challenge of reading her own story through her mother's eyes and the resilience it takes to navigate life with narcolepsy and cataplexy. Hear firsthand how she has managed to maintain her sense of self and privacy amidst the attention brought by her unique medical journey. Whether you're familiar with narcolepsy or just learning, Mathilda's story is sure to inspire and enlighten. From her family dynamics to her personal thoughts on privacy and public attention, Mathilda shares her unique perspective for the first time. Join us for this inspiring episode that promises to educate, move, and resonate with anyone touched by narcolepsy. Chapter Timestamps (03:00) - Mathilda's Early Diagnosis(07:00) - Reading "Waking Mathilda"(17:00) - Maintaining Privacy and Self-Identity(21:00) - Family Dynamics(25:00) - Public Speaking and Sharing Her Story(30:00) - Final Thoughts Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow us on Social Media for updates: Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast ***If you find these symptoms relatable, please seek medical advice.***

    52 min
  6. Raising a Narcoleptic Dog: Toast’s Story

    SEP 20

    Raising a Narcoleptic Dog: Toast’s Story

    Join us on this heartwarming episode of Narcolepsy Navigators as we welcome our special guests Laura, an experienced animal foster parent from Illinois, and her narcoleptic dog, Toast.  From being a breeder dump to becoming a beloved family member, Laura's journey is filled with challenges, adaptations, and the joy of raising a special needs pet. Laura recounts her initial struggles with understanding Toast's condition, the unique measures taken to manage his narcolepsy, and the joyous connections he's fostered within their community. Laura provides valuable insights into daily routines designed to manage Toast's cataplectic attacks, from utilizing white noise at bedtime to specialized feeding techniques. Gated stairs, supervised outdoor activities, and puzzle bowls are just a few of the adjustments that have helped Toast thrive. Laura emphasizes the importance of exposing Toast to various environments, despite criticism, to better manage his triggers.  This discussion highlights the significance of allowing special needs pets to live fulfilling lives and the gradual training required for them to handle their triggers effectively. We also touch on the broader implications and common misconceptions surrounding narcoleptic pets, advocating for greater awareness and empathy. As we wrap up, we focus on the broader narcoleptic community and the quality of life for both humans and animals with narcolepsy and cataplexy. Laura shares her experiences and the profound joy that special needs pets bring into our lives, dispelling common misconceptions and advocating for awareness. We explore the supportive role of social media, the potential for Toast to become a therapy dog, and the critical importance of community support and shared experiences. Tune in for an inspiring conversation that champions understanding and compassion for all beings with special needs. Chapter Timestamps (00:10) - Narcolepsy Navigators(08:46) - Managing Narcolepsy in Dogs(17:00) - Exploring Narcolepsy in Dogs(23:40) - Quality of Life for Narcoleptic Dog(31:36) - Cataplexy and Narcolepsy in Humans(36:41) - Rescuing Special Needs Animals(49:22) - Expansion of Narcoleptic Dog Community(55:46) - Supporting Animals With Special Needs Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow Toast on Social Media: Instagram: @toastthenarcoleptic Follow us on Social Media for updates: Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast ***If you find these symptoms relatable, please seek medical advice.***

    1h 19m
  7. Sarah: Dreams Interrupted

    AUG 28

    Sarah: Dreams Interrupted

    Experience the raw and transformative journey of Sarah Duncan, a courageous 29-year-old from Oregon, as she navigates the complexities of life with narcolepsy. From her pre-med college days filled with relentless fatigue to the frustrating misdiagnoses that dismissed her symptoms as mere anxiety and depression, Sarah's story highlights the often-overlooked struggles of those living with this condition. This episode of Narcolepsy Navigators sheds light on the emotional and physical challenges Sarah faced, emphasizing the critical role of self-advocacy in the pursuit of proper medical recognition and treatment. Discover the profound impact of Sarah’s narcolepsy diagnosis on her aspirations of becoming a doctor. Working in a beloved hospital, she encountered the harsh realities of America's medical system, often leaving patients to fend for themselves. Sarah's narrative not only underscores the systemic barriers in medical education and practice but also explores the broader challenges disabled individuals face in both educational and professional settings. Learn about Sarah's difficult decisions and the alternative paths she pursued to create a fulfilling life despite the limitations imposed by her condition. Explore the nuanced interplay between narcolepsy, ADHD, and the endocrine system as Sarah details her journey towards managing her symptoms. From the significance of simple accommodations to the emotional liberation of embracing her identity, Sarah's experience is a testament to resilience and self-discovery. This episode delves into the societal pressures and stigmatization around disabilities, emphasizing the importance of embracing one's identity and advocating for necessary resources. Join us for an eye-opening conversation that challenges societal norms and celebrates the strength found in vulnerability. CHAPTER TIMESTAMPS (00:10) Navigating Life With Narcolepsy(04:30) Misdiagnosis and Medication Pressure(11:23) Navigating Medical School With Narcolepsy(17:34) Navigating Accommodations in Medical School(20:18) Navigating Disability in Medical Education(31:31) Exploring Sleep-Inducing Aromatherapy Tea(36:04) Narcolepsy and Body Regulation(39:05) Exploring Asexuality and Disability in Relationships(43:39) Evolution of Disability Identity(51:22) Reevaluating Disability and Support(56:33) Understanding Disabling Labelling and Ableism Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow Sara on Social Media: Instagram: @duncanpnwTikTok: @missalexandria Follow us on Social Media for updates: Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast ***If you find these symptoms relatable, please seek medical advice.***

    1h 2m

Ratings & Reviews

About

Narcolepsy Navigators isn't just another podcast; it's a lifeline, a space where every story shared is a step towards changing the narrative around narcolepsy, idiopathic hypersomnia and Klein-Levin syndrome. Every episode is a peek into the lives of people navigating these conditions every single day. It's raw, it's real, and it’s about sharing stories that are way too important to miss. Because when we share, we have the power to change narratives – that’s our mantra, "Share a story to change a story." Everyday life with these conditions is an unseen odyssey, an intricate dance of challenges that most can't fathom. But we're here to bring those stories into the light, to give a voice to the silent struggles and the victories that often go unnoticed. It's about time the world saw beyond the misconceptions and understood the full impact these conditions have on someone's life.

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