Narcolepsy Navigators Podcast

Kerly Bwoga
Narcolepsy Navigators Podcast

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. Jamie Nicole: Turning Diagnosis into Purpose

    FEB 13

    Jamie Nicole: Turning Diagnosis into Purpose

    In this inspiring episode of Narcolepsy Navigators, we meet Jamie Nicole, a certified Holistic Health Coach, Autoimmune Strategist, and unstoppable advocate. Diagnosed with narcolepsy type 2 at 39, Jamie shares her journey of battling years of exhaustion, misdiagnoses, and systemic barriers—all while juggling life as a student, mother, and professional. Jamie dives deep into her experience with autoimmune diseases, the emotional toll of undiagnosed narcolepsy, and how holistic health practices helped her regain control. From reversing Hashimoto's symptoms to managing narcolepsy through nutrition, movement, and mindset shifts, Jamie’s story is a masterclass in resilience. Join us as Jamie uncovers the power of self-advocacy, the importance of community support, and why living fully with chronic illness is not just possible—it’s revolutionary. Chapters (00:14) Living With Narcolepsy12:52) Autoimmune Diseases and Narcolepsy Relationships(22:40) The Struggle With Narcolepsy Diagnosis(27:59) Narcolepsy and Autoimmune Lifestyle Changes(41:24) Community Support for Chronic Illness(46:49) Autoimmune Protocol and Nutrition Strategies(53:06) Living Optimally With Chronic Illness Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Jamie Nicole: Website: https://naturalhealing.coach/Instagram: https://www.instagram.com/healcoach/ LinkedIn: https://www.linkedin.com/in/healcoach/  Follow and support Narcolepsy Navigators: OFFICIAL WEBSITE GUYS >>>>>>> www.napsforlife.com   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:

    58 min
  2. Sleeping for Weeks: Imaarl’s Story with KLS

    FEB 4

    Sleeping for Weeks: Imaarl’s Story with KLS

    London’s rush never stops—but for Imaarl Duprey, time did. At 18, what should have been a typical New Year’s Eve turned into the beginning of a mystery illness that would steal weeks, even months, of her life at a time. Diagnosed with Kleine-Levin Syndrome (KLS), or Sleeping Beauty Syndrome, Imaarl found herself trapped in a cycle of disbelief, misdiagnosis, and isolation, waking up to a world that had moved on without her. In this episode of Narcolepsy Navigators, Imaarl shares what it’s like to lose time, battle stigma, and fight to be believed. She dives into the emotional toll on her family, the frustration of an untreatable condition, and the resilience it takes to rebuild a life interrupted by sleep. Now a mental health advocate and researcher, she’s turning her story into awareness, challenging misconceptions, and proving that rare disorders deserve recognition. Listen now for a powerful conversation on resilience, advocacy, and reclaiming time. Chapters (00:10) Living With Klein-Levin Syndrome(10:50) Uncontrollable Sleep Episodes and Diagnosis(14:41) Navigating Life With KLS Diagnosis(21:44) Impact of KLS Episodes on Life(27:53) Living With KLS(36:51) Navigating Stigma Around KLS(44:48) Navigating Uncertainty With KLS(50:29) Navigating Life With KLS Challenges Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: OFFICIAL WEBSITE GUYS >>>>>>> www.napsforlife.com   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  ***If you find these symptoms relatable, please seek medical advice.***

    57 min
  3. Dreams, Hallucinations, and Chloe's Life with Narcolepsy

    JAN 12

    Dreams, Hallucinations, and Chloe's Life with Narcolepsy

    In this episode, we are joined by Chloe, who shares her compelling journey of balancing narcolepsy type 1 and obstructive sleep apnea while pursuing a career in optometry. From the thrill of quad biking to the challenges of everyday tasks like getting a haircut, this episode uncovers the rollercoaster ride of managing sleep disorders. From the comical to the challenging, we explore how everyday tasks like getting a haircut can become monumental experiences. Our conversation ventures into the nuanced aspects of narcolepsy, such as vivid dreams, hallucinations, and the comforting role pets can play during uncertain times.  We share strategies for staying awake during important moments, like lectures, and the unique ways our pets help us navigate these challenges. Listen in as we tackle misconceptions head-on and reveal how narcolepsy has not only shaped our relationships and social interactions but has also become a significant part of who we are. Chapters (15:55) The Emotional Impact of Diagnosis(23:13) Managing Narcolepsy: Medication and Daily Life(28:22) Coping Mechanisms for Narcolepsy(30:23) Experiencing Hallucinations(36:11) The Impact of Trauma on Hallucinations(39:44) Auditory Hallucinations and Their Comfort(44:53) Navigating Relationships with Hallucinations(52:29) Social Challenges in University Life Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: OFFICIAL WEBSITE GUYS >>>>>>> www.napsforlife.com   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  ***If you find these symptoms relatable, please seek medical advice.***

    1h 1m
  4. 20 Years to Clarity: Glenn's Narcolepsy Experience

    12/31/2024

    20 Years to Clarity: Glenn's Narcolepsy Experience

    Summary Glenn takes us through his remarkable journey to a proper diagnosis of narcolepsy type 2 after 20 long years, sharing how his life and career in local government have been influenced by his symptoms and the critical importance of workplace understanding and accommodation. The episode sheds light on many struggles faced by those with undiagnosed narcolepsy, like Glenn, whose excessive yawning and unintended naps were often misinterpreted. We talk about the broader challenges of receiving proper medical guidance, initial misdiagnosis, and how additional health issues like osteoporosis and vertigo complicate the path to understanding and managing narcolepsy. The social and professional hurdles are real, and Glenn recounts personal anecdotes about how these experiences shaped his life, emphasizing the need for awareness and correct support. Glenn's candid conversation about the underrepresentation of men in the narcolepsy community, along with the stigma of acknowledging such conditions, is a powerful reminder of the need for diverse voices. As we explore themes of acceptance, self-kindness, and the impact of community connections on mental health, Glenn and I underline the importance of normalizing narcolepsy. We also reflect on the strength gained through sharing stories within the community, leaving listeners with a message of resilience and the importance of self-care. Join us to explore the wisdom found in connection and the power of letting go of shame to embrace a full life despite narcolepsy. CHAPTERS (03:26) Living with Narcolepsy Type 2(05:37) Impact of Diagnosis on Career(09:08) Misdiagnosis and the Road to Narcolepsy(16:11) Challenges in Seeking Help(22:47) Support and Community in Australia(25:57) Advocacy and Representation in Narcolepsy(34:01) Social Life and Narcolepsy(37:24) Stress Management Strategies(44:29) The Importance of Self-Kindness(48:34) Community and Connection   Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow and support Glenn:https://www.instagram.com/glenn2145/  Follow and support Narcolepsy Navigators: DONATE: https://square.link/u/AhLKgFK4  OUR WEBSITE GUYS>>>>>>> https://napsforlife.wixsite.com/napsforlife  Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn:

    58 min
  5. Rachel’s Superpower: Advocacy Through Sleep and Song

    12/23/2024

    Rachel’s Superpower: Advocacy Through Sleep and Song

    Summary In this episode of Narcolepsy Navigators, Rachel Nesmith, also known as Sleepy American, shares her personal journey with narcolepsy, the challenges of motherhood, and how she uses music as a platform for advocacy. Rachel discusses her diagnosis, the impact of narcolepsy on her life and family, and the importance of community support. She emphasizes the need to change public perceptions of narcolepsy through her music, aiming to raise awareness and provide relatable content for others facing similar challenges. In this conversation, the speakers discuss the critical importance of advocacy for narcolepsy awareness, the challenges faced in diagnosis and treatment, and the personal experiences of living with narcolepsy. They emphasize the need for better representation and understanding of the disorder, using transformative analogies to convey the realities of narcolepsy. The discussion also touches on identity, acceptance, and the significance of community support in navigating life with narcolepsy. Chapters (02:52) Understanding Narcolepsy and Its Impact(05:46) Family Dynamics and Support Systems(09:09) The Challenges of Motherhood with Narcolepsy(12:00) Music as a Medium for Advocacy(14:47) The Role of Music in Raising Awareness(20:46) Navigating Treatment and Support(23:59) The Importance of Community and Advocacy(36:30) Challenges in Diagnosis and Treatment(51:04) Identity and Acceptance of Narcolepsy(57:12) Community Support and Connection Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow and support Rachel:Linktree: https://tinyurl.com/dmvcxjda Instagram: https://www.instagram.com/thenapcave/  Follow and support Narcolepsy Navigators: OUR WEBSITE GUYS>>>>>>> https://napsforlife.wixsite.com/napsforlife  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:

    1h 6m
  6. Redefining Rest: Haley’s Resilience with IH and Chronic Illnesses

    12/03/2024

    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
  7. Living with Narcolepsy & Autism: Rahmat's Path

    11/29/2024

    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

Ratings & Reviews

5
out of 5
2 Ratings

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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