Narcolepsy Symptoms
Exciting News! Giving a TEDx Talk in San Diego
SO beyond excited to share this news: I’ll speak at TEDxSDSU on March 22, 2020 in San Diego, CA! Giving a TEDx talk has been a major life goal for about 7 years now, when i put it in my art journal as one of my major aspirations. And I’ve applied to many over the…
Read MoreCelebrating 10 years of the REM Runner Blog!
Ten years ago today, I came out as a person with narcolepsy. On November 10, 2009, I started this REM Runner blog, disclosing on the internet for the first time that: “Hi! I’m Julie Flygare, a person living with narcolepsy with cataplexy.” From my original About Me: “Narcolepsy has changed my life for better and…
Read MoreListen Now: Social Experience of Narcolepsy on Sleep Junkies Podcast
“I remember keeping [my narcolepsy] private and always feeling like it was this thing sitting at the back of my throat that I wanted to share, but just stopping myself, remembering ‘you’ll get a bad reaction, this person won’t understand.’” – Julie Flygare, Sleep Junkies podcast “So you went from something being a secret to the…
Read MoreNew and Upcoming Treatments for Narcolepsy 2019! Part II Update from World Sleep
Did you know the FDA has approved 27 novel drugs so far in 2019, and two of those are for narcolepsy?! How amazing is that?! The diversification of treatment approaches and new therapies under development and gaining FDA-approval for narcolepsy in the U.S. is SO EXCITING! In this post, I will provide an update on the narcolepsy…
Read MoreTaking a “Sick Day” with Narcolepsy
When working in traditional offices, I struggled with “sick days.” I didn’t often get colds or flus. I just dealt with my narcolepsy with cataplexy, which was fairly stable and “well-managed” by the time I took these jobs. Yet narcolepsy was still with me every day, to varying degrees — from minor annoyance to extreme…
Read MoreLiving One-Third of My Life with Narcolepsy
Twelve years ago today, I was diagnosed with a classic case of type 1 narcolepsy with cataplexy, just four days after my 24th birthday. So as of today, four days after my 36th birthday, I’ve now spent one-third of my life officially as a “person with narcolepsy” (not counting the years of symptoms before diagnosis). For fun today,…
Read MoreShare! Narcolepsy with Cataplexy PSA Video with Ode to Joy Movie
Friends: I’m SO beyond thrilled to share the news with you today that Project Sleep proudly partnered with IFC Films and Ode to Joy Director, Jason Winer, to create a PSA to raise awareness about narcolepsy with cataplexy. Please watch and share with friends! Teamwork makes the dream work I am so grateful to Jason…
Read More“Ode to Joy” Movie Review From A Person Living with Narcolepsy with Cataplexy
Today, the new feature film, Ode to Joy opens in select theaters (in New York and Los Angeles) and releases via video on demand across the United States. Ode to Joy is a movie about a man, Charlie (played by Martin Freeman) navigating romance while living with narcolepsy with cataplexy. I was not involved in the development…
Read MoreCelebrating 20 Years of Hypocretin/Orexin: Narcolepsy’s Big Breakthrough
LET’S PARTY LIKE IT’S 1999: Twenty years ago today, a dog named Kahlua was on the cover of the journal Cell. Kahlua was a doberman pinscher with canine narcolepsy and an important piece of history. Today marks 20 years since Dr. Emmanuel Mignot, MD, PhD, and his team at Stanford University published their key paper…
Read MoreListen Now: CALM + COZY podcast interview
Apparently I felt comfortable and a bit snarky on the day that I recorded this CALM + COZY podcast interview with the amazing host, Beth Wyatt (@sleepcoachbeth on IG), because I’m pretty honest and animated here! Beth asked great questions that led to unique conversations not part of my usual “talking points” repertoire. My favorite discussion…
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