58 episodes

Every person diagnosed with narcolepsy embarks on a unique journey. There is no standard path, and for many, this proves to be among the most challenging aspects of the disorder.

The Narcolepsy 360 podcast is a series of interviews that take a panoramic view of narcolepsy from the patient, caregiver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From the latest research to lifestyle tips, our podcasts shed light on the less discussed issues around narcolepsy.

Join Claire Crisp, our Executive Director, as she chats every week with people within our community.

Narcolepsy 360 Wake Up Narcolepsy

    • Health & Fitness
    • 4.9 • 55 Ratings

Every person diagnosed with narcolepsy embarks on a unique journey. There is no standard path, and for many, this proves to be among the most challenging aspects of the disorder.

The Narcolepsy 360 podcast is a series of interviews that take a panoramic view of narcolepsy from the patient, caregiver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From the latest research to lifestyle tips, our podcasts shed light on the less discussed issues around narcolepsy.

Join Claire Crisp, our Executive Director, as she chats every week with people within our community.

    Narcolepsy 360: Tatiana Maria Corbitt

    Narcolepsy 360: Tatiana Maria Corbitt

    Tatiana Maria Corbitt is a writer, artist and advocate. Tatiana is also a person with Type 1 Narcolepsy.
    In this episode, Tatiana and Claire discuss how the onset of her symptoms occurred after having the flu, while in the first year of college. She was diagnosed in 2017 while studying Applied Biological Studies. Since she experienced such a drastic shift while in the midst of her college career, Tatiana had challenges navigating her studies, managing her symptoms, receiving appropriate accommodations and maintaining her mental health.
    Initially, Tatiana’s family was supportive throughout her diagnosis process, but coming to terms that there wasn’t a cure for narcolepsy has caused a strain within the familial relationships. Their hope for her to become a doctor was thwarted when Tatiana couldn’t find a university with the appropriate disability resource office available that would advocate for her in her studies.
    Tatiana currently writes for Health Union about living with narcolepsy.  Tatiana shares with Claire her current medication and the value of having a service dog. Her service dog, Kida, assists her in so many different facets which helps Tatiana feel safe while managing symptoms. 
    Because Tatiana’s narcolepsy caused such a drastic change in her quality of life, she has had to navigate changes in friendship and familial relationships. Thankfully, she has found community in the Wake Up Narcolepsy Online Support Groups. She recently became a facilitator for a WUN Support Group - LGBTQIA Support Group.
    You can follow Tatiana on @saltytatertats on Instagram. Her art Instagram is @studioslumber. You can check out her writings about living with narcolepsy here. 
    Tatiana says, “I recommend the Wake Up Narcolepsy Narcolepsy LGBTQIA+ Support Group that I lead on Fridays. They also have other support groups for people with Narcolepsy that I’ve participated in and highly recommend, especially for people that are newly diagnosed or who don’t have support systems at home.” 
    You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

    • 29 min
    Narcolepsy 360: Thomas Gow

    Narcolepsy 360: Thomas Gow

    Thomas Gow is a Client Experience Analyst at TruDataRx. Thomas is also a person with Type 1 Narcolepsy and one of the inspirations to the creation of Wake Up Narcolepsy.
    In this episode, Thomas shares his experience of diagnosis at the age of 10 and how it wasn’t until he began to experience cataplexy that something bigger was going on beyond just being sleepy.
    He shares how he navigated his educational journey from middle school to grad school, playing sports and now working a full-time job. In his acceptance of narcolepsy, he took logical risks to see how his body could handle different life experiences. Routines, goals, support systems and logical risks have all played a part in helping him embrace his narcolepsy. 
    He believes narcolepsy has allowed him to grow in a way that gives him a completely different perspective on the world. He says, “[Narcolepsy] is along the ride to where you want to go in life.” It isn’t driving you. 
    You can follow Thomas @tgow14 on Instagram and on Facebook.
    You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

    • 40 min
    Narcolepsy 360: Tove Maren Stakkestad

    Narcolepsy 360: Tove Maren Stakkestad

    Tove Maren Stakkestad is a Danish American Writer and Blogger. She is currently sharing her experience of being a mom of 4 boys  on her blog Mama In The Now. Tove is also a person with Type 1 Narcolepsy.
    In this episode, Tove reflects that she believes both her father and grandfather had narcolepsy and she had a sleepy childhood. When her mother took her to the doctors they thought it was childhood epilepsy and didn’t require further treatment. When she started falling asleep during client meetings, she sought out doctor’s insight about her sleepiness. It was then she was diagnosed with Type 1 Narcolepsy.
    As her fourth child was on the way, Tove’s husband suggested that she start a blog as a means to creating an income and assist her in the ability to stay home and raise her kids. She writes about motherhood with honesty and humor. 
    Tove is currently unmedicated and lives a lifestyle she calls unapologetic self-care. There is so much to learn through Tove’s blog but Claire asks specifically about a post where Tove describes how narcolepsy has made her a better parent.  
    You can follow Tove @mamainthenow on Instagram, Facebook, Twitter and Pinterest. You can also check out her blog Mama In the Now here.
    Tove recommends joining The Facebook Group: Real Moms in the Now- A fun group for mothers from all stages of motherhood. Also, The Hygge Movement- This is a cozy drama-free group of women who embrace the Danish lifestyle of “hygge” (mindfulness and coziness). We share book recommendations, arts and crafts - just all the things that make you feel warm and fuzzy inside.
    You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

    • 38 min
    Narcolepsy 360: Desireé Gorbea-Finalet

    Narcolepsy 360: Desireé Gorbea-Finalet

    Desireé Gorbea-Finalet is a person with Type 1 Narcolepsy and a student of Peace and Conflict Studies. 
    In this episode, Claire and Desireé discuss how because she was labeled as a “good sleeper” as a young child that it may have contributed to a delayed diagnosis. Growing up in Puerto Rico, her family had a history of migraines so when she sought out help her doctors and neurologists focused on the migraines rather than her excessive daytime sleepiness. 
    Despite struggling with excessive daytime sleepiness, Desireé was always super productive during her wakefulness. She participated in extracurricular activities and completed both high school and her undergrad within three years. In 2017, after the destructive effects of Hurricane Maria, Desireé came to the States. Since coming to the States she has been able to receive better narcolepsy care and get plugged into a local support group.
    Desireé encourages everyone to listen to their bodies and intuition and to not give up advocating for yourself until you find out what is “wrong” with your body. 
    You can follow Desireé @uniboricua on Instagram. She recommends the following Facebook groups -- Foothills Narcolepsy Support Group (Specifically for individuals living in North-Western North Carolina and Southern Virginia), Narcolepsy Humor, and Narcolepsy Support Group.
    You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

    • 30 min
    Narcolepsy 360: Dr. Michael Grandner

    Narcolepsy 360: Dr. Michael Grandner

    Dr. Grandner is the Director of the Sleep and Health Research Program at the University of Arizona, Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center, and an Associate Professor in the Department of Psychiatry at the UA College of Medicine, with joint appointments in the Departments of Medicine, Psychology (UA College of Science), Nutritional Sciences (College of Agriculture and Life Sciences), and Clinical Translational Science. His research focuses on how sleep and sleep-related behaviors are related to cardiovascular disease, diabetes, obesity, neurocognitive functioning, mental health, and longevity.
    In this episode, Claire and Dr. Grandner discuss how although he is a clinical psychologist, his focus is on sleep behavior. He is interested in understanding collectively our relationship with sleep and what causes disruptions in our sleep and therefore affects our day-to-day functions.
    Dr. Grandner shares what his lab is currently studying, but also deep dives into how sleep greatly affects our mental health, mental wellness, memory and mental acuity. He shares his insight on how diet, nutrition and sleep all intricately interact. Dr. Grandner is constantly asking, “How do we improve people’s sleep?”
    We really appreciate learning about sleep and sleep health from a sleep behavioral approach, thank you Dr. Grandner for your time and sharing with our community.
     To learn more about Dr. Grandner's research and work you can check his website. You follow Dr. Grandner @michaelgrandner on Twitter and @drgrandner on Facebook.
    You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

    • 45 min
    Narcolepsy 360: Nicole Kenyon

    Narcolepsy 360: Nicole Kenyon

    Nicole Kenyon is a person with Type 1 Narcolepsy. She is also a multi-faceted narcolepsy advocate. She is an author of a memoir, a blogger, legislative advocate, personal trainer and the face of @fitniknarcoleptic Instagram where she shares workout routines.
    In this episode, Nicole shares how she struggled with excessive sleepiness most of her childhood, but because she was very athletic it was often glossed over. Multiple times she went to doctors seeking help but whether it was her weight or her active lifestyle, they didn’t listen and her diagnosis was delayed. It wasn’t until college while talking to a fellow rugby teammate who recently was diagnosed with narcolepsy did she find the answer to her experience as well.
    Despite knowing she had narcolepsy it still took a while before getting diagnosed, and the doctor who initially oversaw her treatment didn’t provide effective care. Today, Nicole has a great sleep specialist. Because of her arduous experience, Nicole is passionate about advocating for CWN. 
    Nicole in early 2020 was diagnosed with MS. This has brought about new questions on whether MS caused her narcolepsy. Nicole has invested in herself through fitness and a healthy lifestyle. She offers insight into the importance of working out for health reasons and learning to love yourself. 
    You can follow Nicole at @fitniknarcoleptic on Instagram. You can read her memoir here Part 1 and Part 2. You can also read her blog here.
    You can follow Wake Up Narcolepsy at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.

    • 51 min

Customer Reviews

4.9 out of 5
55 Ratings

55 Ratings

Harsh divine ,

Narcolepsy 360

This series is so informative. I enjoyed learning from the different perspectives of narcolepsy from the PWN to the science behind it. Looking forward to the second season.

kethans ,

Such a treasure for those affected by narcolepsy

As a PWN, I am always searching for stories of others with narcolepsy. I absolutely loved this podcast and hope there is more to come!

Winkebach ,

Refreshing, Emotional, and Vindicating

Narcolepsy is rare enough, that I have no one who can relate with my life experiences. It is refreshing, emotional, and vindicating to find and hear from others who know what life is like with narcolepsy and cataplexy. Two Thumbs Up!!!

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