NARCOLEPSY: NOT ALONE
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 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 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 MoreYOU CAN AND YOU WILL (Marathon Part II)
As I crossed the start line of the San Diego Rock n Roll Marathon, runners started passing me. I laughed when a pack of Elvis(s) passed me. Typical. “Slow and steady. No one to beat. Nothing to prove,” I told myself. My shirt was drenched with sweat within 3 miles. Soon my hands raisined and…
Read MoreWake, Julie. It’s Late and We’ve Miles to Go Together. (Marathon Part I)
The week of the marathon, I forgot I was running a marathon. “Have you booked your hotel yet?” my co-worker, Betsy asked me on Wednesday. “Uh, no, but I will…” My mind was preoccupied with other efforts, the Jack & Julie Narcolepsy Scholarship and Sleep Walk Dallas. So, I was last minute about everything –…
Read MoreNARCOLEPSY: NOT ALONE Runs Great Ocean Road Marathon in Australia
Just 9 days until my marathon and I’m super inspired by Louise, Jacob and their crew of 20 people who sported NARCOLEPSY: NOT ALONE for the Great Ocean Road Marathon in Australia last weekend. 12 runners wore the shirts (including 3 young doctors who have promised to spread the word amongst their peers!), and 8…
Read MoreVisiting Australia for the Narcolepsy Support Australia Conference
“What could I say that they don’t already know?” This question haunted me in the months, weeks and days leading up to Narcolepsy Support Australia Conference. Over a year ago, when NSG Australia’s leader-extraordinaire, Melissa asked me to be a keynote speaker at their inaugural patient conference, I said “Yes!!!” right away. No question, I wouldn’t miss…
Read MoreCataplexy Caught on Camera – Guest Post by Sally Abboud
Four lovely ladies walk into a photo booth, one has narcolepsy with cataplexy, her name is Sally. Something is funny and as Sally laughs, the camera perfectly captures the stages of her cataplexy attack. Sally (top-middle) describes: This was a photo booth at a friend’s wedding that takes a photo every 5 seconds. The three other ladies…
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