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 [https://www.instagram.com/saltytatertats/] on Instagram. Her art Instagram is @studioslumber [https://www.instagram.com/studioslumber/]. You can check out her writings about living with narcolepsy here [https://narcolepsy.sleep-disorders.net/author/tatianacorbitt]. 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 [https://www.instagram.com/narcolepsy_360/] on Instagram, @wakeupnarcolepsy [https://www.instagram.com/wakeupnarcolepsy/] on Instagram and Facebook and @wakenarcolepsy [https://twitter.com/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 [https://www.instagram.com/tgow14/] on Instagram and on Facebook. [https://www.facebook.com/thomas.gow.14] You can follow Wake Up Narcolepsy at @narcolepsy_360 [https://www.instagram.com/narcolepsy_360/] on Instagram, @wakeupnarcolepsy [https://www.instagram.com/wakeupnarcolepsy/] on Instagram and Facebook and @wakenarcolepsy [https://twitter.com/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 [https://www.instagram.com/mamainthenow/] on Instagram, Facebook, Twitter and Pinterest. You can also check out her blog Mama In the Now here [https://mamainthenow.com/]. Tove recommends joining The Facebook Group: Real Moms in the Now [https://www.facebook.com/groups/realmomsinthenow]- A fun group for mothers from all stages of motherhood. Also, The Hygge Movement [https://www.facebook.com/groups/thehyggemovement]- 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 [https://www.instagram.com/narcolepsy_360/] on Instagram, @wakeupnarcolepsy [https://www.instagram.com/wakeupnarcolepsy/] on Instagram and Facebook and @wakenarcolepsy [https://twitter.com/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 [https://www.instagram.com/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 [https://www.instagram.com/narcolepsy_360/] on Instagram, @wakeupnarcolepsy [https://www.instagram.com/wakeupnarcolepsy/] on Instagram and Facebook and @wakenarcolepsy [https://twitter.com/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 [http://www.sleephealthresearch.com/] at the University of Arizona [http://www.arizona.edu/], Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center [https://www.uahealth.com/services/psychiatry], and an Associate Professor in the Department of Psychiatry [http://psychiatry.arizona.edu/] at the UA College of Medicine [http://medicine.arizona.edu/], with joint appointments in the Departments of Medicine, [http://deptmedicine.arizona.edu/] Psychology [http://psychology.arizona.edu/] (UA College of Science [http://cos.arizona.edu/]), Nutritional Sciences [https://nutrition.cals.arizona.edu/] (College of Agriculture and Life Sciences [https://cals.arizona.edu/]), and Clinical Translational Science [https://cts.uahs.arizona.edu/]. 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 [https://www.michaelgrandner.com/about.html]. You follow Dr. Grandner @michaelgrandner [https://twitter.com/michaelgrandner] on Twitter and @drgrandner [https://www.facebook.com/drgrandner/] on Facebook. You can follow Wake Up Narcolepsy at @narcolepsy_360 [https://www.instagram.com/narcolepsy_360/] on Instagram, @wakeupnarcolepsy [https://www.instagram.com/wakeupnarcolepsy/] on Instagram and Facebook and @wakenarcolepsy [https://twitter.com/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.