Children with Narcolepsy
Beauty OR The Beast? Napping with Narcolepsy
I nap once or twice (or three times) every day. While napping, I may look like Sleeping Beauty, but waking up – I’m never quite sure who I’ll be – a kind calm beauty OR an angry beast. The trouble with napping: For me, napping is not pleasant. My naps are high-speed rollercoaster rides of…
Read MoreRandom Remmie Explains Narcolepsy & Sleep Cycle
“Narcolepsy explained so simply a caveman could understand it.” You may remember Random Remmie from this previous post, but recently she’s became a movie star, featured in two amazing educaitonal videos. The purpose of these videos is to explain narcolepsy to classmates of children with narcolepsy so they can better understand. Please take a…
Read MoreNarcolepsy – NOT Normal and NOT Alone
Narcolepsy is NOT normal. But who wants to be “normal” anyway? This video is an empowering salute to all those who are “different” for whatever reason. As young adults- “fitting in” seems so important. All too often, children and teens with narcolepsy face unfair ridicule, bullying, and lame jokes. Hang in there. I promise…
Read MoreThings I Love: EatSleepPlay at the Children’s Museum of Manhattan
“EatSleepPlay: Building Health Every Day” is an innovative exhibition at the Children’s Museum of Manhattan with over 70 interactive exhibits. This huge arts installation engages children (and adults) towards making healthy decisions in nutrition, sleep and active play. As reported by the New York Times:The “Sleep” section illustrates all the functions the body performs during nonwaking…
Read MoreLink between H1N1 flu and narcolepsy in children and adults: SLEEP 2013 Research Update Part I
At SLEEP 2013, I attended many fascinating sessions exploring the frontier of sleep science. I am not a scientist, but as a sleep and narcolepsy advocate, I will provide major takeaways from SLEEP 2013’s scientific program in upcoming blog posts. At the meeting, new data from Finland, France and China further suggested a link between…
Read MoreMy Twisted Fairytale: A Poem by Shelby Stein
I feel like a princess locked in a tower. My Narcolepsy is my dragon guard. My weight loss is the lava moat that makes me cower more. My evil witch is merely my medicine, At first we didn’t see the harm, For it had a magic disguise to seem so beautiful. My poison apple of my…
Read MoreTips for Students with Narcolepsy Video
I’m thrilled to release my 14th narcolepsy awareness video! This video offers tips for students with narcolepsy based on my personal experience and various community members’ input. Everyone is different – please share tips in the comments below. Check back soon for more videos! Thank you to Alex Withrow for his expert video production. Watch…
Read MoreSchool Accommodations with Narcolepsy Video
My latest video describes accommodations for succeeding in school with narcolepsy. Watch below or on YouTube: Check back soon for more videos. Thank you to Alex Withrow for generously giving his time and pro filming skills to make this possible! Watch full video series Watch Video #19: Riding the Waves of Narcolepsy – Waterskiing with…
Read MoreNarcolepsy Isn’t Like the Movies: 16 Secret Signs of Daytime Sleepiness
We all know the punch line of the narcolepsy joke – person falls asleep while standing or in the middle of the conversation. My daytime sleepiness doesn’t look like this. On the surface, it doesn’t look like much of anything. Internally – my sleepiness aches. My limbs become heavy and pressure pushes on my skull.…
Read MoreUnderstanding Pediatric Off-Label Drug Use and Insurance Coverage
Among challenges facing people with narcolepsy, securing health insurance to cover expensive medications can be a source of anxiety and fear. My personal experience with health insurance has been a roller-coaster but ultimately, I am thankful to have decent coverage now (knock on wood). However, I’ve heard multiple stories recently (in news articles, at conferences and…
Read More