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.
Narcolepsy Navigators Podcast
S3E7 Hustling with Narcolepsy: Hugh’s Freelance Path
What if managing a condition could open new doors and redefine your career path? Meet Hugh, a talented video technologist from Plymouth, UK who has navigated the unpredictable waters of narcolepsy while making waves in the live entertainment industry. From working on big rock concerts to contributing to cutting-edge virtual productions like “The Mandalorian,” Hugh shares his unique insights into balancing a demanding career with the challenges of a condition that began during his university years. Join us as we explore how his journey has led him to embrace self-employment, offering the flexibility he needs to manage his symptoms while pursuing his passion for entertainment and technology.
You'll learn how community support plays a vital role in living with narcolepsy, and the hurdles one might face due to medication restrictions across different regions. With candid discussions around symptoms like sleep paralysis and vivid hypnagogic hallucinations, Hugh opens up about the emotional and practical realities of living with this condition. Discover how he has adjusted his life and career, the importance of accommodating work environments, and the ways in which cultural perceptions of narcolepsy can influence opportunities in unexpected ways.
Throughout this episode, we also touch upon the significance of managing narcolepsy symptoms without medication, the impact of new treatments like Wackix, and the role of naps in maintaining productivity. Hugh's reflections extend to gender-specific challenges and the need for more research on hormonal changes affecting those with narcolepsy. This conversation is not just about living with a condition; it's a testament to resilience, adaptability, and the power of advocacy, offering invaluable insights for anyone affected by or interested in narcolepsy.
Chapters
(00:13) Narcolepsy Navigators Intro
(11:12) Living With Narcolepsy
(24:10) Navigating Life With Narcolepsy
(28:26) Empowering Narcolepsy Advocacy Through Self-Employment
(35:59) Managing Narcolepsy Symptoms Without Medication
(40:38) Navigating Narcolepsy and Gender Roles
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***If you find these symptoms relatable, please seek medical advice.***
