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. 20 Years to Clarity: Glenn's Narcolepsy Experience

    2024/12/31

    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 分钟
  2. Rachel’s Superpower: Advocacy Through Sleep and Song

    2024/12/23

    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:

    1 小时 6 分钟
  3. Redefining Rest: Haley’s Resilience with IH and Chronic Illnesses

    2024/12/03

    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 分钟
  4. Living with Narcolepsy & Autism: Rahmat's Path

    2024/11/29

    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 分钟
  5. Awake in Colour: Angela’s Creative Outlet for Narcolepsy

    2024/11/17

    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 分钟
  6. Narcolepsy’s Hidden Toll: Tamby’s Journey

    2024/10/28

    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.***

    1 小时 1 分钟
  7. Mathilda: Thriving with Narcolepsy from Age Three

    2024/09/22

    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 分钟

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关于

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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