Narcolepsy Doctors
Syncopation – Dancing with Narcolepsy & Cataplexy Guest Post by Elaine Golden
REM Runner’s note: Recently, Elaine of Chica Siesta joined the NARCOLEPSY: NOT ALONE campaign. After reading her beautiful blog, I asked her to share in a guest post here. Please enjoy Elaine’s powerful and fresh voice. Read more at chicasiesta.wordpress.com. Syncopation – by Elaine Golden Recently, my friends and I went swing dancing at a jazz club…
Read MoreWarning: Xposure to MedX May Xpand Your Mind – Attending Stanford’s Medicine X 2015
Goosebumps raised on my arms as we shuffled into the fake hospital exam room at Stanford Medical School. I hate hospital exam rooms, even fake ones apparently! About twenty of us lined the walls to watch two simulation exercises. Patient wears doctor’s white coat: In the first simulation, a real-life patient played a “doctor”, wearing a…
Read MoreThe Simpsons Modifies Homer Narcolepsy Episode “Somewhat” After Reading Narcolepsy Article
When the Simpsons premieres tonight at 8pm ET/PT, Homer will get “narcolepsy”. I’m thrilled to report that Executive Producer, Al Jean tweeted me: “The episode was modified somewhat after I read the extremely compelling article you wrote. Not sure you will be 100% happy…” Thank you, Al Jean and the Simpsons for thoughtfully reading and modifying…
Read More8 Years Since Narcolepsy Diagnosis: No Longer “Suffering the Silence”
Living in Silence: Eight years ago today, on Sept. 18, 2007, I was diagnosed with narcolepsy with cataplexy, a serious chronic neurological disorder of the sleep/wake cycle. I told friends and family right away. Finally, I had scientific words to describe my mysterious symptoms. But I hated people’s reactions. Some acted as if I’d said…
Read MoreNarcolepsy Presentations at UCLA Med School 2015 – “A learning experience for both medical students and seasoned physicians.”
On Sept. 1 – 3, I had the extraordinary opportunity to speak at UCLA Medical school three nights in a row, sharing my inspiring narcolepsy journey with 120 first-year medical students and a dozen faculty members. The first-year students were just days into their medical education – energetic and eager to learn! I spoke as part of the students’ required…
Read MoreLiving Bravely With Chronic Illness – Guest Post by Katie G. Nelson
As a 29-year-old, female journalist and photographer, I am accustomed to the words people use to define me; “Fearless”, “gutsy”, “courageous” are just a few. But, as a woman living with severe narcolepsy, I often struggle to reconcile these one-dimensional characterizations with my own sense of self. That disconnect was recently underscored when I announced…
Read MoreMy First Standing Ovation – Speaking at the Hypersomnia Conference 2015
Recently, I traveled to Atlanta to speak at the Hypersomnia Conference 2015. The conference featured a great variety of support groups and fantastic presentations by medical leaders, educational experts, patient advocates and a disabilities attorney. Uniquely, the conference also included hypersomnia, narcolepsy and KLS speakers and attendees, so we could share and learn from each…
Read MoreWorking with Narcolepsy: Part III – When Caring Comes Naturally
After my boss and leadership got even more involved – the nap room situation improved quickly. (Read Part I and Part II of this story.) Nap Bench on the Move: The nap bench was moved again, this time to a small room on the second floor along a nice secluded quiet hallway. The door’s sign was changed to Wellness Room.…
Read MoreWorking with Narcolepsy Part II: Hunting for a Nap Room
In December 2014, our office moved from Downtown Los Angeles to Irwindale, CA. My commute went from 7 miles to 25 miles. At the same time, our office environment went from private offices to cubicles. To be fair – I was well informed about this before I signed up for the job. (Read Part I…
Read MoreWorking with Narcolepsy: Part I – I Fought the Nap and the Nap Won.
On Friday, I was so surprised to be awarded a Values In Action (VIA) award for “Excellence” at work! As I approached the stage, the presenter read the comments from my nomination: Julie is always excited to take on any new task. She approaches her work with enthusiasm, regardless of how big or small the assignment is.…
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