Narcolepsy 360

Kayla Douglas, known as @nomadnarcolepsy on Instagram, is a person with narcolepsy, a narcolepsy life coach and an extensive world traveler!

In this episode, Kayla details her childhood with narcolepsy that led to diagnosis. As a child, she loved to read about the world and in her mind, she traveled all over. It was in college that she was able to make that dream a reality through studying abroad. After that first bit of travel she was motivated to travel more and boy did she travel!

It wasn’t until she left the US to work in Spain, she realized she wasn’t thriving despite being on medication and managing symptoms. With the help of a doctor, she was able to reduce her medication by changing her diet and implementing other stress-relieving practices.

To date, Kayla has traveled to AT LEAST 22 countries! Also, she is currently medication free. Kayla offers advice on how to travel with narcolepsy, and now is offering life coaching services to people with narcolepsy.

You can follow Kayla at @nomadnarcolepsy on Instagram and Facebook. You can learn more about her coaching services and read her blog at https://www.kaylamdouglas.com/.

Kayla recommends Positively Narcolepsy facebook group and Going Beyond Coping blog, in her words, “As they have helped me so much with keeping a positive attitude and finding the most creative little life hacks.” She also recommends Gina Denis, aka Madcap Narcolepsy, if you're interested in learning more about the ketogenic diet. She also recommends the Rising Voices of Narcolepsy Program facilitated by Project Sleep. Because of Rising Voices, she felt empowered to publish this first writing piece - Scared of the Dark: The Narcolepsy Symptoms that Nobody Talks About.

You can follow us 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 iTunes.

Part of Wake Up Narcolepsy’s mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources.

We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure. We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time.

Our first episode in our Doing Life During COVID-19 miniseries is addressing mental health and mindfulness practices. In this episode, Wake Up Narcolepy's Executive Director, Claire Crisp has a conversation with Dr. Jason Ong, Associate Professor in the Department of Neurology at Center for Circadian and Sleep Medicine at Northwestern University Feinberg School of Medicine, about mental health, depression, anxiety and mindfulness for people with narcolepsy, especially during this time of safer at home.

Part of Wake Up Narcolepsy’s mission is to provide supportive resources for people with Narcolepsy and their families. During this time of massive daily life alterations, we want to continue to offer those resources.

We are all going through a traumatic event together and as we are adapting to a new normal within our homes some may find it difficult to create structure.

We created a miniseries called Doing Life During COVID-19 to address different aspects of daily life we may need extra support with during this time.

Our fourth episode in our Doing Life During COVID-19 miniseries is addressing food + nutrition during the pandemic. Wake Up Narcolepsy's Executive Director, Claire Crisp has a conversation with Andre Royal, chef, entrepreneur, author and PWN. They discuss what food to focus on to boost your immune system, to give yourself grace, tips on how to meal prep, and staple pantry items to have.

Andre and Claire also talk about Andre’s new coloring book that he authored and his son illustrated- The Hippo Critic. It may be a great way to relieve stress while practicing safer at home protocols.

Here are some websites he recommends you check out to help you with cooking at home!

• AllRecipes.com
  • ( tip: check the ratings and the comments of recipes you are interested in cooking)
• Cookie + Kate
• Serious Eats- Corona Virus Cooking Guide on Beans
  • (Excellent tips overall, even on technique)
• MadCap Narcolepsy
  • (Narcolepsy Dietary & Lifestyle Changes)

You can follow Andre on Instagram and Facebook. You can learn more about his new book The Hippo Critic on Instagram, Facebook and Twitter.

You can follow us 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.

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.

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.