Narcolepsy Navigators

By: Kerly Bwoga
  • Summary

  • 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 and idiopathic hypersomnia. 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.
    © 2023
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Episodes
  • Mathilda: Thriving with Narcolepsy from Age Three
    Sep 22 2024

    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.***

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    52 mins
  • Raising a Narcoleptic Dog: Toast’s Story
    Sep 20 2024

    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.***

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    1 hr and 19 mins
  • Sarah: Dreams Interrupted
    Aug 28 2024

    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: @duncanpnw
    TikTok: @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.***

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    1 hr and 2 mins

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