Narcolepsy 360

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.

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.

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.

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.

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.

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.

Matthew Horsnell is a person with Type 1 Narcolepsy. He also is a multi-faceted narcolepsy advocate. He’s a speaker, a blogger, legislative advocate and narcolepsy support group leader.

In this episode, Matthew and Claire discussed how becoming a dad pushed him to figure out his extreme daytime sleepiness that he dealt with throughout his childhood.  He, in his words, “passed the test with flying colors,” and was diagnosed with Type 1 Narcolepsy. 

After navigating living with narcolepsy, being a parent and generally being an adult for a few years, Matthew realized he wanted to be vocal about his narcolepsy and spread narcolepsy awareness. Matthew is a generous narcolepsy advocate. He first entered into advocacy through the Know Narcolepsy awareness campaign. He participated in Project Sleep’s Rising Voices of Narcolepsy Program to help him confidently speak about living with narcolepsy. Today he advocates by speaking at events, webinars, and participating as a legislative advocate in DC. He writes blogs on Health Union about living with narcolepsy. He facilitates a weekly online support group through Wake Up Narcolepsy.  He also is an active social media advocate posting and spreading awareness with the hashtag = #worldsstrongestpersonhavingnarcolepsywithcataplexy.

Matthew shares about how exercise, therapy, support groups, and connecting with the narcolepsy community have brought about a fuller life. We really appreciated Matthew’s honesty and empathy that he offers in sharing his experiences living with narcolepsy.

You can follow Matthew at @mhorsnell on Instagram and  @matthorsnell on Twitter. You can read his writings about narcolepsy for Health Union here. You can watch his Rising Voices of Narcolepsy Story Sharing Event. You can also watch his presentation, "Social Support and Counseling: Navigating Narcolepsy And Mental Health Comorbidities" during Wake Up Narcolepsy REAL: Navigating Narcolepsy and Mental Health Education Day Webinar.

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.

Grace McGinnis is a college student studying Pre Med, a Division 1 college athlete and also a person with Type 1 Narcolepsy. 

In this episode, Grace and Claire discuss how Grace functioned as a “sleepy child” and how she was aware at a young age that her experience of sleepiness wasn’t normal. In her sophomore year of high school, her health and performance as a swimmer were deteriorating. She sought insight from doctors. Around the 5th doctor, they suggested she get a sleep test. She was diagnosed with Type 1 Narcolepsy. 

Now, Grace is in college and is also a competitive swimmer for the University of Miami! Grace candidly shares how she navigates her daily life of practice, school and friendship. She recommends structure, schedule and naps! She also offers insight into what it has been like to be so transparent about her narcolepsy.

Grace’s honesty is so welcoming and it is no surprise as she has created a blog called Sleep G, to share her experience with sleep health and narcolepsy.

You can follow Grace at @sleepyg_zzz and @Grace_McGinnis on Instagram. She recommends joining narcolepsy groups on Facebook because as she says, “ It’s a great way to connect with people and learn more.”

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.

Dr. George Church is a Professor at Harvard & MIT, co-author of 580 papers, 143 patent publications & the book "Regenesis"; developed methods used for the first genome sequence (1994) & million-fold cost reductions since (via fluor-NGS & nanopores), plus barcoding, DNA assembly from chips, genome editing, writing & recoding; co-initiated BRAIN Initiative (2011) & Genome Projects, machine learning for protein engineering, tissue reprogramming, organoids, xeno-transplantation, in situ 3D DNA, RNA and  protein imaging. 

He is also a person with Type 1 Narcolepsy. 

In this episode, Dr. Church shares his diagnosis story which occurred alongside his daughter’s diagnosis of narcolepsy. He offers insight on how he navigated his symptoms prior to diagnosis. He also shares how he currently manages his symptoms to live optimally at home and in his thriving lab. Claire was fortunate enough to have Dr. Church explain what his lab focuses on and if he has any future plans to conduct narcolepsy research. 

You can follow Dr. George Church on Twitter @geochurch and learn more about his research and work 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.

Ginna Freehling is a neuroscience graduate and works in cancer clinical research at a biotech company. She is also a PWN.

In this episode, Ginna shares how at the age of twenty she started experiencing symptoms of narcolepsy. In the process of trying to figure out what was going on, she was discouraged by her sleep specialist to not seek a formal diagnosis. For the next few years, she managed her symptoms on her own. Finally, as symptoms worsen she was able to get a sleep test at Stanford and was diagnosed with Type 1 narcolepsy.

Ginna offers insight on medication titration, her experience with disclosing her diagnosis with work, navigating friendship, and her passion for sleep education. She says, “As a society, we don’t put enough emphasis on the value of sleep.”

You can follow on Instagram @Ginna24. She says, “The XYREM/XYWAV Facebook group has been helpful to learn about others' experiences in switching to XYWAV from XYREM.”

Ginna also offers, “In general I would say exercise and a diet low in simple carbohydrates can help with EDS. I follow a gluten-free diet due to a wheat allergy and IBS but have subsequently found that it helps my daytime wakefulness as well. Individuals with resources surrounding this include Belle Hutt @bellehutt on Instagram and Gina Dennis' page madcapnarcolepsy.com.”

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.