Speaking about Narcolepsy at Sleep Symposium

by julie on April 23, 2017

IMG_2160On Saturday, March 25, I was honored to give my narcolepsy presentation at Hoag Health’s Sleep Symposium in Irvine, CA. Because I work full-time with a long commute, I got home fairly late on Friday night and started counting backward from when I was supposed to be in Irvine on Saturday at 9:00 a.m.

  • The drive to Irvine = 1 hour, so I needed to leave my house by 8:00 a.m.
  • Packing my Project Sleep items and getting dressed = 1 hour, so I needed to get up at 7:00 a.m.
  • 2 doses of my nighttime medication = 8 hours, so I needed to be in bed by 11:00 p.m.

Oh no! It was almost 9:00 p.m. , so I hurried to eat dinner quickly in order to give my stomach 2 hours rest before my first dose of medication at 11:00 p.m.

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The next morning, I miraculously made it to Irvine on time. It was great to see some local sleep community friends and meet many new folks. The free event was open to the public and I honestly wasn’t sure what to expect, but there was a packed house!

I enjoyed the other speakers’ presentations on sleep apnea and insomnia. No matter how many sleep events I attend, I always learn new stuff. In addition, I was impressed with how the speakers answered attendees’ questions with honest and thoughtful responses. I’d say about half of the audience members were people struggling with sleep issues (diagnosed or undiagnosed).

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Right before I was about to go on stage, I realized I better run to the restroom quickly, which is where I met a mother of a young woman living with narcolepsy with cataplexy. Turns out, this mother had been following my blog for many years, as her daughter was diagnosed within a year of my diagnosis back in 2007.

IMG_2151The mother was here to hear my speech, after reading on my blog that I’d be speaking here – within walking distance from her house! We talked about how her daughter was doing with some recent medication changes. She shared how much my book had meant to her family.

How odd, to have this meaningful conversation in the fluorescent glare of a hospital ladies room. Life is funny, isn’t it? I cherished this moment so much and would’ve talked longer but had to hurry back to the auditorium to give my presentation!

As always, I was a bit nervous to go on stage, but once I got going, it was smooth sailing. I read the passage from my narcolepsy memoir about my dad at the Narcolepsy Network conference, as always.

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Afterward, I gave out Project Sleep awareness items at the expo and signed a few books. The drive home was a long one, taking about 2 hours with wonderful SoCal traffic and a stop off for a nap along the way.

It was a wonderful day and I was proud to represent narcolepsy, Project Sleep and a voice of a person living with a sleep condition at this event. Special thanks to Alanna for inviting me to share my story here after meeting at the California Sleep Society Symposium last fall!

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