Narcolepsy Diagnosis
Running a Marathon for Narcolepsy Scholarship
It’s official! I’m training to run the San Diego Rock n’ Roll Marathon on May 31, 2015 to support the Jack & Julie Narcolepsy Scholarship. Please consider supporting in one of two ways: Purchase a NARCOLEPSY: NOT ALONE t-shirt or sweatshirt here. Deadline: Feb. 15. Delivered in time to wear for National Narcolepsy Day/Suddenly Sleepy Saturday March 7,…
Read MoreA Day In The Life… NPR Features Narcolepsy
I’m thrilled that NPR station WHYY featured my story of narcolepsy on the radio today. Listen online here: “A Day In The Life of a Narcoleptic” by Steven Jackson. When the reporter for NPR asked to follow me around for 24 hours, I said “YES!” right away. I’m always looking to raise awareness about narcolepsy. I am…
Read More5th Grader Raises Narcolepsy Awareness at School
This past year has been very tough for Daishia, age 11, who was recently diagnosed with narcolepsy with cataplexy. In addition to narcolepsy, she is also dealing with a seizure disorder, migraines and obstructive and central sleep apnea. “I wish I could take all her pain and struggles away and make things easier for her,” describes her…
Read MorePatients Included: Narcolepsy Patient Voice in American Journal of Medicine
The patient’s voice is rarely included in medical journals, but luckily, I love breaking down superficial barriers between patients and medical professionals. Check out: “Narcolepsy: Let the Patient’s Voice Awaken Us”, by Julie Flygare, JD and Sairam Parthasarathy, MD, (American Journal of Medicine, January 2015). I feel so lucky to have collaborated with Dr. Parthasarathy on this project, he’s a doctor…
Read MoreDental Considerations with Narcolepsy: Guest Post by Heather Dudeck
My name is Heather Dudeck, PWN Supporter of my husband Mitch and registered Dental Hygienist in Indiana. I’ve been in the dental field for nearly seven years; three as a dental hygienist and the first four as a dental assistant. I was asked quite a few questions about oral health at the Denver Narcolepsy Network…
Read MoreA Wicked Awesome Moment
London 2007 F*CK, I slept through Wicked. In February 2007, I was in London for spring break and splurged on an overpriced “half-price” ticket to see my favorite musical, Wicked. I’d listened to the soundtrack a hundred times, but never seen it. The first act was magical, but as the curtains raised for the second…
Read MorePutting the RUNNER back in REM Runner!
Tonight, I was glowing after my very first training to prepare for the San Diego Rock n Roll Marathon on May 31, 2015 to raise funds for the Jack & Julie Narcolepsy Scholarship! I was going to wait to make a big announcement but I had to share this now. I’ve been feeling overweight, dark…
Read MoreFor Your Consideration: VOTE for Narcolepsy Blog in Best Health Blog Contest
Friends, please vote for the REM Runner blog in the Best Health Blogs Contest. It takes 2 seconds to vote via FB or Twitter, once per day. Click here to vote! Why vote? For five years, the REM Runner blog has offered hope, inspiration and awareness tools for the narcolepsy community. People with narcolepsy often feel lost and alone, until…
Read MoreSpeaking in Spoons – The Spoon Theory and Narcolepsy
My boyfriend and I speak in spoons. If you don’t know what I’m talking about, read The Spoon Theory by Christine Miserandino now. Seriously, stop everything and visit: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. Alex has been really supportive of my narcolepsy from day one. We quickly fell into great routines for managing my excessive sleepiness and cataplexy. Yet, my narcolepsy is so much more than…
Read MoreSpeaking at the Hypersomnia Conference 2015
I’m thrilled to be a featured speaker at the Hypersomnia Foundation’s Annual Conference on Fri. July 17 – Sat. July 18, 2015 at Emory Conference Center Hotel in Atlanta, GA. Join us: http://bit.ly/2015HSFConference. I will present two sessions, one sharing my inspiring journey from hiding my narcolepsy to becoming a vocal advocate and a second session on communicating about sleepiness.…
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