Narcolepsy Network Conference

Heyyo, fair warning if you come here for the horse stuff – there are zero mentions of equines in this post. They’ll be back though! :)

The first weekend in October I went down to Indianapolis for the annual Narcolepsy Network Conference. Narcolepsy Network is this cool nonprofit organization founded in 1986 that educates, connects, and advocates for people with this shared sleep disorder (and the people who support them). Every year they hold a two day conference around the country where there are multiple short sessions happening concurrently throughout the day on topics ranging from research to clinical trials to job accommodations, applying for disability, resources for family and friends, and various panels.  Oh and there’s a nap room with cots in it, which I think is wonderful and should be included in wayy more places.

20181005_160354
amazing banana bread provided by one of my best friends/host for the weekend

This was my first time attending, although I’ve been to something similar before (albeit on a smaller scale and put on by a different organization). I was amazingly fortunate to have one of my closest friends offer me her apartment, just a few blocks from the hotel, for the weekend while she was babysitting. When I arrived Friday afternoon she had also made up some banana bread batter and all I had to do was pop it in the oven after she left (see above).  Unfortunately the awesome banana bread is one of the very few pictures I took from the weekend, because I was mostly just trying to keep up with the whirlwind I’d thrown myself in.

20181005_201650
I was directly under a light… hence my ghost face matching my sweater.

Friday evening I got to finally meet and have dinner with some amazing women; the founder of Project Sleep and then others who had taken part in her advocacy education program this summer. For anyone who has a chronic illness, I can’t overstate how nice it is to hash over shared medication quirks, funny symptom stories, and complain about misinformed doctors. More than that, we had a great discussion around the lack of recognition and respect for non-pharmacological interventions when treating narcolepsy (on a larger scale, chronic illness in general). We all have such varied backgrounds that everyone’s input put a different lens on the topic, and while it was a bit of an energy hit, I LOVE those kinds of discussions! From there we went back to the hotel where they had a mixer and I got to meet and a number of other people, before I finally relented and realized I needed to get back so I could take my night medicine at a decent time.

20181006_204130
soccer game Saturday night!

Saturday was soo veryy long (but good!). It started with me missing breakfast and the keynote address – firstly because I woke up later than I wanted to after my night medicine, secondly because I had to shower and needed to rest after said shower, and then I still had to drive down to the hotel. BUT ANYWAYS, I made it just as the first sessions were starting and got to hear some great speakers in the morning. Post lunch was more of a struggle; even taking a nap couldn’t counteract the fact that most of the rooms the sessions were being held in were waaay too warm. While the afternoon was a bit of a bust, I was one of a handful of local people who had volunteered to host a dinner reservation at a downtown restaurant. I took my group to a Mexican restaurant I really like, and thoroughly enjoyed comparing experiences to two young women who had been diagnosed while in high school (I wasn’t diagnosed until almost the end of college), one of whom has a support dog that has clearly made a big difference in her life. Just wished I could have talked to more of them!

After dinner I probably could have used a nap… but instead I went with some of the people from my dinner group, and a few new ones, to a soccer game for Indy’s professional team (see picture above). I hadn’t been to one before, plus it was also within pretty easy walking distance and the tickets had been donated to the conference, so how could I say no? It was a really fun experience, and I even ended up getting to bed a bit earlier than the night before!


Sunday I actually made it in time for breakfast, though that was questionable as I circled several blocks willing an open meter spot – which are free on Sundays – to magically appear for me. Someone had also checked the thermostats, so I ended up making a few more of the sessions (and could take more away from them!). The best part of Sunday though was catching up with a few people I’d met earlier and getting to talk with them more or get contact info for after the conference. Once all was said and done and I went back to my friend’s apartment and took a good long nap, and once my friend got back ended up chatting with her for another hour before I finally got started on my hourish drive home. All in all, I’m so glad I decided to do this trip for myself and had the resources to make it happen! I learned a lot and it gave me multiple directions to wander down as I consider my current/future employment situation and relationship to narcolepsy overall.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s