7 episodes
Narcolepsy Navigators Kerly Bwoga
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- Health & Fitness
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.
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Henry's Narcolepsy Journey: A 13-year Battle
What if a sleep study could be the key to unlocking a 13-year mystery? Join us as we sit down with Henry from Queens, New York, who shares his deeply personal journey from experiencing his first symptoms of narcolepsy type 2 in 1996 to finally receiving a diagnosis in 2009.
In this episode, Henry opens up about his trial-and-error process with medications, to experiencing the highs and lows of finding the right combination, including his experiences with Xyrem. Learn how narcolepsy impacted his work life, requiring adaptable environments and a supportive network to help him maintain a sense of normalcy and identity.
Tune in as Henry discusses practical coping mechanisms for dealing with symptoms like brain fog and hallucinations and highlights the invaluable support of community groups. This episode is a testament to the power of awareness, education, and unwavering support in overcoming the obstacles posed by narcolepsy.
Chapters:
(00:06) - Narcolepsy Awareness
(07:21) - Managing Narcolepsy and Work Life
(13:31) - Challenges of trying to adopt with Narcolepsy
(19:04) - Managing Narcolepsy
Highlights:
(02:51 - 04:01) Journey to Narcolepsy Diagnosis (70 Seconds)
(12:31 - 13:31) Narcolepsy and Self-Identity (60 Seconds)
(16:32 - 17:38) Support and Understanding of Narcolepsy (66 Seconds)
(21:57 - 24:08) Understanding and Managing Narcolepsy (131 Seconds)
(29:16 - 30:58) The Red Button (102 Seconds)
Subscribe for more inspiring episodes, share to raise narcolepsy and idiopathic hypersomnia awareness, and join the conversation by sharing your experiences.
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*If you find these symptoms relatable, please seek medical advice. -
Adapting to the Unpredictable: Natalie's Narrative
Nobody wants to embark on a journey across the turbulent seas of narcolepsy, but Natalie, a German mother and teacher, offers her moving story of doing just that. In her world, the emergence of narcolepsy in her late twenties was only the start of a journey marked by delayed diagnosis, developing cataplexy, and the struggle with ineffective sleep apnea therapies. This episode gives us access to her universe. Her narrative is not limited to the difficulties she faced; it also explores the resiliency needed to balance her rigorous professional obligations with the subtleties of parenting an autistic child.
Throughout our heartfelt conversation, the spectrum of emotions and adjustments Natalie has faced becomes apparent. She clarifies the challenges teachers face on the job, including the social ramifications of medicine, the difficulties of maintaining safe driving practices, and the difficult route to treatment accessibility in Germany.
Natalie's story sheds light on the transformative effect of lifestyle adjustments and the comfort found in support networks in a society that frequently takes pride in its unwavering productivity. Her choice to treat her narcolepsy non-medically resulted in major life changes, such as changes in her diet and employment, demonstrating her dedication to putting her health first.
Chapter Timestamps
(03:52 - 05:03) Discovery of Narcolepsy Symptoms
(08:00 - 10:11) Managing Cataplexy as a Teacher
(11:24 - 12:30) Understanding Narcolepsy and Supportive Environment
(16:58 - 17:48) Managing Epilepsy in Germany
(21:58 - 23:18) Parenting and Narcolepsy
(30:04 - 31:33) Managing Nerve Pain From Electromagnetic Radiation
(33:49 - 35:18) Collaboration Between Doctors and Patients
(37:16 - 39:08) Embracing and Learning From Narcolepsy
Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences.
Follow us on Instagram for updates: https://www.instagram.com/narcolepsynavigatorspodcast/
*If you find these symptoms relatable, please seek medical advice. -
When Sleep Interrupts Life - Sakhara's Story
Discover the untold stories of life with narcolepsy as Sakhara Johnson joins us for an intimate conversation about her journey. We peel back the curtain on her day-to-day battles, from the initial misdiagnoses and the arduous path to discovering she had severe narcolepsy, to the ongoing struggles with treatments and their impact on her personal life. Sakhara doesn't hold back in sharing the gritty details of using a CPAP machine, undergoing surgeries, and the toll these take on her academic and social experiences. Her resilience in the face of such trials is nothing short of inspiring, offering a beacon of hope for anyone facing similar hardships.
This episode isn't just Sakhara's narrative; it's a critical examination of the broader issues at play within the narcolepsy community, especially for people of color. We probe the need for better representation and participation in events like World Narcolepsy Day, discussing the complexities of cultural stigmas and the barriers that hinder support. Sakhara opens up about her own path to acceptance and the role of community and faith in navigating the challenges of this often misunderstood condition.
Chapter Timestamps
(00:06) - Living With Narcoleptic Challenges
(13:35) - Representation and Acceptance of Narcolepsy
(23:21) - Impact of Narcolepsy on Relationships
(28:53) - Navigating Relationships With Narcolepsy
(39:45) - Navigating Narcolepsy in Dating
Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences.
Follow us on Instagram for updates: https://www.instagram.com/narcolepsynavigatorspodcast/
*If you find these symptoms relatable, please seek medical advice. -
A Deep Dive Into Idiopathic Hypersomnia with Ross
This has been a highly anticipated episode for us here on the Narcolepsy Navigators podcast. Our hosts Kerly and Liz, are both taking on an incredibly deep and detailed dive into what living with Idiopathic Hypersomnia is really like and what is actually the difference between narcolepsy and IH?
Chapters
(01:57 - 05:22) Living With Idiopathic Hypersomnia in UK (05:19 - 05:37) Unusual Problem With Unknown Cause (07:20 - 09:38) Sleep Patterns in Idiopathic Hypersomnia (14:14 - 18:47) Struggles With Medication Effectiveness (21:23 - 22:41) Hallucinations in Narcolepsy and IH (40:02 - 41:50) Struggling With Unpredictable Sleep Attacks(45:19 - 47:06) Nap's Importance and Grogginess (52:44 - 55:05) Strategies for Managing Narcolepsy Symptoms (57:59 - 01:00:30) Managing Sleep Patterns With Medication (01:10:24 - 01:11:58) Idiopathic Hypersomnia
Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences.
Follow us on Instagram for updates: https://www.instagram.com/narcolepsynavigatorspodcast/
*If you find these symptoms relatable, please see a medical professional. -
Navigating the World with Narcolepsy: Liz's Travel Tales
In this engaging episode, host Kerly Bwoga chats with Liz, who shares her experiences of traveling with narcolepsy. Diagnosed at 18, Liz offers a candid look into the highs and lows of her travel adventures, providing valuable insights for anyone facing similar challenges.
Chapters:
Welcoming Liz and Introduction [0:00]
Liz's Narcolepsy Diagnosis and Background [2:15]
The Realities of Traveling with Narcolepsy [5:30]
Joyful Experiences in Liz's Travels [10:45]
Confronting Travel Challenges [15:20]
Liz's Tips for Traveling with Narcolepsy [20:35]
Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences.
Follow us on Instagram for updates: https://www.instagram.com/narcolepsynavigatorspodcast/
*If you find these symptoms relatable, please seek medical advice. -
Meet The Host: Kerly's Narcolepsy Journey
In this episode, host Kerly opens up about her narcolepsy journey. She discusses the early signs, the path to a proper diagnosis, the challenges she faced in her education, and her reasons for founding 'Narcolepsy Navigators' and 'Naps for Life'."
Key Topics:
Kerly's Experience with Narcolepsy and Cataplexy during Festive Seasons [0:00]
The Road to Narcolepsy Diagnosis: Early Signs and Misdiagnoses [3:00]
Overcoming Academic Challenges with Narcolepsy [8:00]
The Crucial Steps to a Correct Narcolepsy Diagnosis [15:00]
Coping Mechanisms and Medication Management [20:00]
The Inspiration Behind "Narcolepsy Navigators" and "Naps for Life" [25:00]
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"Share a Story to Change a Story." - Team NN