Tags: winking lizard

Sunday at 27th Narcolepsy Network Conference

Darn, I'm having trouble with balance today...but it always seems to take a couple of days to get my land legs back after any stretch of time on a ship. Though being some what tired might be adding to things.

Anyways...after getting up somewhere just after 7am, I quickly try to get out of my hotel room so I can make it down for 7:45am breakfast. A little late, but not a problem...there is only just a trickle of people at the start of the first line.

It was an adequate breakfast....probably shouldn't have had the eggs, not really a fan of the scrambled eggs, but just got a scoop out of routine. And, afterwards, I zipped up to the room to brush teeth and grab a few items I remembered that I was missing on the way down. The came down to catch the session of "Understanding Attention and Vigilance Issues in Narcolepsy". An interesting session, which now has me wondering about the strangeness in the field of vision test of my last eye exam. I can see things in the upper left quadrant just fine, but according to the test, I missed most of the targets in that quadrant during the test.

Though I wonder more about my perfect hearing test...I'm sure there's hearing loss, because I don't here everything (though maybe that's something else that's related)....but I was sure there were times where I made commission error responses. Its hard after a point telling which beeps are real or and which are ones my mind says happened. Though I'm sure I do it lots of times in other tests as well....especially if I'm really sleepy.

Next up was "Living Well with Narcolepsy", which I was interesting, though I'm having trouble remembering what it was that I found particularly useful at the time.

Then came the "I'm a Person with Narcolepsy and I'm Proud!" session by Julie Flygare...who finally had her moment to thank me in person for helping making it possible for her to run up Mt. Washington. And, then it was time for lunch....which was mostly wraps....which were mostly wrap, which really made a mess of my teeth, so I went back up to my room to floss and brush, but not before getting pulled into a group photo. As I was leaving I noticed people had desserts, wondered where that was....which I found later when I came back down. Wandered around a bit....and then went to the "Narcolepsy and Sleep Apnea" session. Which was interesting, though not very....it was more about the Narcolepsy followed by Sleep Apnea....though who knows maybe that's how the conditions developed in me...but I was diagnosed the other way around, which made for the journey being what it was. But, then again, nobody seemed particularly concerned about the sleepiness all the time, or the weakness events, or the sleep attacks. And, I guess the insomnia went away when the apnea got bad enough that I had a huge sleep debt.

Where later the insomnia came back after sleep debt was repaid on CPAP....but it didn't really solve the daytime issues. Though the key triggering factor was reaching Hypertension Stage 1. Which the CPAP did help with.

Anyways...after that I wandered off wondering what the "Open Space Technology" session was about, but none of the topics really interested me...."Narcolepsy and Aging", "Narcolepsy and Migraines" and "Narcolepsy and OCD" were basically the topics, so I went off to catch up on socializing....until the final session of "Strategies & Techniques to help the Doctor help you"....which may not be help the doctor, but rather a how to work the system to get what you need out of your doctor, or how the doctor works so how to most efficiently work around that....

And, then closing ceremony this year, which was move to the Amphitheater to watch the finished Narc-umentary. Unfortunately the music track and the voice track were inverted, so couldn't hear the dialog except when it was loud or the music was quiet. Hopefully the finished version will appear in some form somewhere, it seemed really interesting. Noticed that there seemed to be quite the transformation in some of the people between when they first showed up at the start of the conference to seeing them in the video or at the end of the conference. Of course, I was a different person between the beginning and the end of my first conference.

And, then fell into a group and got supper at the Winking Lizard and then went to the "secret" room for conversation until it was sufficient late (but not really) and broke off to go to sleep. I could probably have continued on later, at least I felt like I could...but as I was walking down the hall to my room, I could feel that I might have got a little further than I should've. Or waited until the second wind....

Wonder what I'll get into on my extra day before flying home....