Julie Flygare is a narcolepsy spokesperson and is an award winning author of the book “Wide Awake and Dreaming: A memoir of Narcolepsy.” She lives in Los Angeles and has taken to passionately speaking out across the country about how to cope with narcolepsy.
I recently returned from Sweden, where I was honored to be the keynote speaker at a narcolepsy event hosted by Narkolepsi Föreningen, an association for people affected by narcolepsy due to the Pandemrix vaccine against swine flu in 2009-2010 and their relatives. The retreat took place on May 11-13, 2018, but I traveled to Sweden a week early to explore a bit of my Swedish heritage and adjust my clock before the conference.
Some of my favorite touristy activities included visiting the Vasa Museum, Millesgarden, Fotografiska, Old Town and of course, the ABBA Museum! Very special video below, lol.
I lucked out with the most beautiful weather – it was 70-80 degrees and sunny my entire trip. So, I really enjoyed wandered Stockholm, ducking into cute shops, snapping photos and taste-testing all the cardamom-laced pastries, oat milk lattes and gummy candy.
Soccer is No Joke
Attending my first soccer game was a huge highlight, with Djurgärden (the team we were cheering for) defeating Malmö 3-0 to win the Sweden Cup! The “fan spirit” far exceeding my expectations – with both enthusiastic cheer AND angry rioting (Malmö fans). Scroll through this Instagram post for videos of the mayhem.
Learning How to Pronounce My Last Name
While in Sweden, I also learned how to pronounce “Flygare” — my own last name (at the age of 34)! I’ve known for a while that our U.S. pronunciation wasn’t the original Swedish version, but it took me a week of practice to really getting the correct pronunciation right. Learn how to say “Flygare” (scroll to watch video)!
Speaking at the Narcolepsy Retreat
After an awesome week in Stockholm, I was excited to travel 30 minutes outside the city for the narcolepsy event. Each spring, Narkolepsi Föreningen hosts this retreat for its membership to come together at a beautiful retreat center. The organization also hosts a larger conference for both its members and their families in the fall.
Sixty-eight people with narcolepsy signed up to attend the retreat. While Narkolepsi Föreningen’s membership definitely varies, a majority developed narcolepsy at a young age. So, in a sense, these individuals have grown up with narcolepsy and with each other through their organization’s wonderful community. I hoped my presentation would resonate with them and add value. Also, I hoped that they would understand my English okay, although everyone’s English seemed amazing, I know I can talk too fast.
Ultimately, my presentation was an extremely emotional one, more than usual. As I looked into the eyes of the young adults with narcolepsy – they nodded, laughed and I saw tears well in some of their eyes. I knew they understood. They knew this story all too well — in their hearts, in their bodies, in their past, and in their present. Our circumstances may vary greatly, our native languages different, but many of the feelings and challenges we face are very similar. The sense of togetherness was very raw, real and special.
After my presentation, we took a group Narcolepsy: Not Alone photo! Over the weekend, I got to speak one-on-one and in small groups with the attendees. I cherish these quieter moments of connection and reflection. Also, I was blown away by the maturity and grace of these individuals. I’ll never forget this time we spent together.
A Gigantic Thank You
First and foremost, a HUGE thank you to the Olsson family for their amazing generosity. The Olsson family welcomed me into their home for this trip and made this speaking engagement possible. I’ve been in contact with this extraordinary family for five years now and I’m forever grateful for their kindness, support and their willingness to eat lots of vegetarian food and gummy candy with me!
Special thanks to Narkolepsi Föreningen‘s incredible leadership and membership who welcomed me into their community so warmly. This organization is a powerhouse – providing support services to their membership while also conducting critical advocacy and awareness work. Check out their beautiful new website featuring real faces of people with narcolepsy.
Returning home from Sweden, I’m re-energized and inspired to continue working hard. There’s a lot to accomplish, but our incredible international narcolepsy community gives me hope that a brighter future is within reach.
What inspired me? How could I answer this “nicely” when this is what came to mind:
I see myself screaming with rage in my car driving down Soldiers Field Road in Boston.
I hear myself muffling my sobs in the law school library bathroom after a hypnagogic hallucination.
I feel the knot in my stomach when “old friends” crack joke after joke about narcolepsy at my 5-year college reunion.
I tried to be honest: “You could say, a low point in my life inspired me to start giving.”
So I’m curious, what inspired YOU to start giving back to YOUR community? Share below in the comments!
In addition, I offer some advice for others who are looking to start giving back. Read the article here. Thank you to Giving Tuesday for this incredible honor to be included among such inspiring women. Special thanks to Project Sleep board member, Ed Sweet for nominating me for this amazing opportunity to continue spreading the word about Project Sleep’s work!
About Giving Tuesday
Giving Tuesday is a global giving movement that harnesses the potential of social media and the generosity of people around the world to bring about real change in their communities; it provides a platform for them to encourage the donation of time, resources and talents to address local challenges. It also brings together the collective power of a unique blend of partners— nonprofits, civic organizations, businesses and corporations, as well as families and individuals—to encourage and amplify small acts of kindness. Learn more and get involved: www.givingtuesday.org
On Monday, April 9, 2018 from 5:30 PM to 7:30 PM (MDT), please join me at Children’s Hospital Colorado in Aurora, CO to hear my inspiring personal journey with narcolepsy presentation. People with sleep disorders, parents, siblings, spouses, friends, healthcare providers, educators, are ALL WELCOME, but please RSVP:
“There are two ways we can increase the public’s understanding of narcolepsy — we can push information out or we can pull them in with our stories.”
-Rising Voices of Narcolepsy Workbook
People ask me: “How do I get started sharing my story?” Project Sleep’s Rising Voices of Narcolepsyprogram is my answer, it is leadership training designed to help people with narcolepsy discover their core story, weave in key facts, and share this with the world via writing or speaking.
Today, Project Sleep announced the 2018 training schedule and launched the application for people with narcolepsy to apply. Please spread the word to help us find the those interested in this exciting opportunity.
Speaking Session: a one-month online course focused on sharing your story via public speaking that will run from June 15th to July 15th 2018. This training will take about 3-4 hours each week on your own schedule to complete (a total of 12-16 hours). Outcome: Course graduates will be prepared to deliver an educational and uplifting 15-20 minute presentation sharing their experience with narcolepsy, interwoven with key facts and figures.
Writing Session: a one-month online course focused on sharing your story via writing that will run from July 15th to August 15th 2018. This training will take about 3-4 hours each week on your own schedule to complete (a total of 12-16 hours). Outcome: Course graduates will have a publishable and timely essay (500 – 800 words) sharing their experience with narcolepsy, interwoven with key facts and figures.
See details and start your application today – application deadline is April 15th, 2018. We will inform applicants of our decisions in May 2018. This program is SO close to my heart and gives me hope for a brighter future. Thank you to all our participants and applicants!
Last month, I had the honor of giving two presentations to allied health care professionals including physicians, nurse practitioners, respiratory therapists, social work experts, and sleep technologists at the Sweet Dreams & Nightmares Sleep Symposium presented by Tallahassee Memorial Healthcare and the Florida Medical Association.
With the west coast to east coast time change, the conference start time felt really early to me, but I’m fairly used to this with my travels and I like to believe that my nighttime medication regime somewhat helps me adjust to time changes. Plus, I was mentally prepared for this and got myself going with some good tunes in the morning. Approaching the Tallahassee Memorial Hospital on our way to the symposium, the sunrise was really pretty!
For my first presentation, I shared my personal journey with narcolepsy to educate the audience on narcolepsy symptom development from a firsthand patient perspective, adjusting to treatments and life-style changes, the psychological effects of living with an invisible chronic condition, and finding psychological and social support to succeed with narcolepsy.
As always, this was a very moving experience, and for whatever reason, I was a little more emotional than usual, but I believe it was well received. There were two really special moments right after this presentation:
One audience member approached me to explain that she was actually the grandmother of a woman with narcolepsy. She had been following my blog for years and had seen a flyer for the symposium which listed me as a speaker and so she’d came to hear me speak! This was SO extremely special.
Also, while in the lobby signing books, the conference videographer approached me and said: “I’ve been involved in interviewing people for leadership positions and leadership development for over 30 years, and I’ve found that earlier in people’s careers, they are looking for success. And as people get older, they start looking for significance…. What you are doing is significant and you must keep doing it.”
His eyes had that light glaze of tears and quickly mine did too. How incredibly lucky I am to do something that I love AND that makes a meaningful impact for others.
After a short break, I gave my second presentation “Succeeding in School and in the Workplace with Narcolepsy” sharing the basic legal framework for considering narcolepsy and other sleep disorders as disabilities under the ADA, the school and work accommodations processes and how clinicians can best support people with narcolepsy going through these processes.
One of the best parts of this conference was getting to hear two totally fascinating presentations by Carlos Schenck, M.D. – a world-leading expert on REM Sleep Behavior Disorder (RBD) and parasomnias. Dr. Schenck was an incredible presenter for a few reasons, I learned so much from his presentations, he was so informative, engaging and clearly working himself on the cutting-edge of our understanding of RBD and parasomnias.
But perhaps what struck me most about Dr. Schenck’s presentations was his humanity. I’ve seen many clinicians and scientists present on RBD and parasomnias and so when I heard that these were Dr. Schenck’s topics, I braced myself. Previously, I’ve found presentations on these topics to be physically uncomfortable to sit through – as I’ve felt like that these topics can become somewhat of a circus freak show with audience members gasping and laughing out loud at the videos of people acting out their dreams or at stories of individuals doing really scary inappropriate things in their sleep.
Sure, I understand there is something “entertaining” about all this, perhaps in the same way that we all turn to look at car crashes… It’s human nature. But, I’ve often felt like the presenter can help set a tone for how an audience interprets – and Dr. Schenck’s presentation was different from the rest. He was engaging and excited in presenting the incredible scientific development, but when it came to watching the videos and sharing some of the intense case studies, I never felt like Dr. Schenck or the audience lost sight of the fact that these were real people we were talking about.
In addition, I really enjoyed Joyce Dwyer, ARNP‘s presentation on dreams. Did you know that the eyes of most birds (unlike in humans) send information to only one side of the brain. Unihemispheric slow-wave sleep allows birds to slide one hemisphere of their brain into a deep sleep while leaving the other hemisphere awake and alert. Birds can turn their one-sided deep sleep on and off depending on how safe their roost is: For example, when a large flock of ducks is roosting on an open lake, the birds in the safety of the center of the flock may shut down completely, while the more vulnerable birds at the edge of the flock may enter one-sided deep sleep to stay alert. FASCINATING, RIGHT?!
Another amazing part of this weekend was getting to spend time with the conference organizers Joanne Hebding and Dr. David Huang and the other presenters. The group of us came together for dinner both on Friday and Saturday night, which made for two really wonderful evenings of getting to know my fellow sleep advocates and quickly feeling like family.
Thank you so much to Joanne and Dr. Huang for inviting me to participate in this unforgettable event. I’m forever grateful! By Saturday night after dinner, I was majorly out of spoons. When I finally laid down, I thought back through the day and the videorapher’s words came back to me. I shared on Instagram: “The intense joy and gratitude I feel sometimes overwhelms me and I cry… Today was one of those days.” Then I closed my eyes and slept for a good 11 hours.
On Sunday morning, I set off to visit my mom in Sarasota, FL. While it was just over 300 miles from Tallahassee to Sarasota, much to my dismay, there were NO cheap direct flights between the two cities. To fly, I would’ve had to pay over $500 and transfer twice… TWICE!! So, I did something I rarely do, I decided to rent a car and drive the 5 hours myself. That’s a lot of driving in one day for me, but I timed my wakefulness, meds, eating, etc. to maximize my wakefulness. I paid close attention to how I was feeling and stopped off to nap once in a shopping plaza parking lot.
Arriving in good time to Sarasota, I was so excited to hand-deliver a belated Valentine’s bouquet to my mom. While I still worked every day during my time in Sarasota (helping advocates secure their Representatives’ signatures on an important letter to NIH regarding narcolepsy research!), my mom and I did go to a super fun spring training game (two red sox fans at an Baltimore versus Detroit game) and ate lots of key lime pie! It was a wonderful trip.
Over the winter holidays, I was thrilled to visit Taiwan and meet with a leading Taiwanese narcolepsy researcher and clinician, Dr. Yu-Shu Huang. I was in Taiwan for an amazing ten-day vacation with my brother, sister-in-law and niece.
After a long sleepless journey to Taiwan, I was so glad that we arrived in Taipei at their nighttime, so I could easily take my nighttime meds and go right to bed upon arriving at our hotel. The next morning, I had fairly good energy. My sister-in-law and her parents kindly help me translate Narcolepsy: Not Alone over breakfast.
That afternoon, we traveled to the busy Chang Gung Memorial Hospital in Taipei to meet up with Dr. Huang. My eyes widened walking past the pharmacy section and toward the elevators. Seeing inside a hospital gave me a more realistic glimpse into everyday life in Taiwan and I imagined visiting as a person with narcolepsy for treatment and care here.
Dr. Huang’s practice was busy, but she was so extremely kind to meet with me and spend a good amount of time chatting during her packed day. I enjoyed hearing about her recent research findings and about how she tracks many of these patients from childhood to adulthood. She shared that a Taiwanese patient group had recently started too! At the same time, it was unsettling to learn that people in Taiwan don’t have access to the same treatment options we have in the U.S.
I gave Dr. Huang signed copies of my book, postcards, stickers, bracelets, pens, etc. She thought her patients will like these! And of course, we took a Narcolepsy: Not Alone photo! See more campaign photos from around the world at: www.narcolepsynotalone.com.
All in all, it was truly an unforgettable trip to Taiwan. The vegetarian food was AMAZING, the desserts were creamy, the temples and shorelines we visited took my breath away. Also, getting to spend 10 days with my family was simply the best!
Guest Contributors: Emily Barker, Ph.D. and Katherine Sharkey, M.D., Ph.D.
New research published in the journal Sleep Medicine suggests that lactating women who take Xyrem (sodium oxybate) to treat narcolepsy with cataplexy can time their breastfeeding to avoid exposing nursing infants to elevated levels of the drug in milk (Barker et al., 2017).
Data from 2 patients and 3 pregnancies demonstrated that gamma-hydroxybutyrate (GHB, the active form of sodium oxybate) is still present in milk of patients 4 hours after administration of sodium oxybate. Six or more hours after administration, GHB levels had returned to baseline values. The data from this small, preliminary study implies that women medicated with sodium oxybate who desire to breastfeed might consider delaying feeding infants their own milk until at least 6 hours after their most recent dose. This may mean discarding night time and morning milk prior to resuming regular feedings.
Child bearing women with narcolepsy and cataplexy often face the difficult decision of either refraining from medications in order to offer to baby and mom the tremendous benefits of breastfeeding, or to continue medications and formula-feed to avoid exposing infants to unsafe levels of medications through milk. For women whose narcolepsy symptoms are well managed with sodium oxybate, they may be able to avoid this dilemma. It is a potential solution during a time when narcolepsy and cataplexy symptoms are often worsened due to sleep deprivation and emotions surrounding new motherhood.
Another research group has published similar findings in an additional patient with narcolepsy and cataplexy, demonstrating that sodium oxybate was cleared from the patient’s milk 5 hours following administration (Busardo et al., 2016). Additional studies will be necessary to determine conclusively that sodium oxybate can be safely used during breastfeeding, but the researchers of this study hope that these findings can assist patients and doctors in discussions surrounding medication regimens during the post-partum period.
Hi friends! I’m so excited to share an amazing opportunity to support critical narcolepsy research THIS WEEK!
My Representative, Congressman Schiff of California, is preparing to send a letter to NIH inquiring on the current size, scope, and direction of the narcolepsy portfolio (See Letters). This letter will encourage NIH to support the full spectrum of narcolepsy research and in responding, NIH will provide Congress and community advocates with a clear overview of recent advancements and emerging opportunities. Congress Schiff has circulated a Dear Colleague letter (See Letters) and is encouraging his fellow House Representatives to join the sign on letter to NIH.
Your House Representative will sign the letter, but only if asked to do so by you (their constituent) and the deadline for signatures is Friday, March 2nd.
Take Action Today
To take action, it is important to contact your House Representative’s Health Legislative Assistant directly (it’s an extra step over using a general contact form, but an important step given quick timeframe to ensure rapid response.)
FIRST, FIND YOUR REP’S HEALTH LEGISLATIVE ASSISTANT:
Go to house.gov and enter your zip code in the upper right corner to find your Representative’s DC office (202) number. Call the office and request the email or voicemail for the Health Legislative Assistant.
Alternatively, if you would like assistance, please contact the Sleep Research Society’s Washington Representative, Peter Herzog, at 202-544-7499 or firstname.lastname@example.org he will assist you with e-mailing the Health Legislative Assistant directly.
NEXT, MAKE CONTACT:
Use the draft message below to email or leave a voicemail for the Health Legislative Assistant.
My name is _________ and I am a constituent from [your city, state]. I’m contacting you today in regards to a congressional sign on letter that Congressman Schiff plans to send to NIH recognizing recent advancements in sleep research and requesting an update on the narcolepsy research portfolio. Please sign on to this letter by contacting Anthony Theissen at Anthony.Theissen@mail.house.gov or 5-4176 before Friday, March 2nd. This letter is important to the community and I would appreciate your assistance with this request.
[Optional: Share your personal story or interest in this issue in 2-3 sentences.]
Thank you for your time and your consideration of my request. I look forward to hearing from you in this regard.