Category: "NN Conference"

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....

Saturday at the 27th Narcolepsy Network Conference

Woke up earlier than I had intended, due to sleeping to the end of my first dose of Xyrem and then triggering a the release of rain out. Force me to get up. I then killed the rest of the morning journaling and facebooking until it was close to time for breakfast.

Breakfast was good, and I was able to pop back up to the room before introductions for a bit. And, then it was introductions and Keynote by Dr. Mignot...which was pretty interesting stuff about the further developments and research into the autoimmunity and genetics of Narcolepsy, the H1N1 connections and the special cases on increased Narcolepsy cases. The basics was that version of the H1N1 vaccine was that it was a weaked H1N1 live virus plus a agent to boost immunity....which likely lead to a boosted auto immunity action. But, that there was also a spike in Narcolepsy cases in other parts of the world, suggesting that the H1N1 itself also caused. And, then some more stuff about the Hypocretin, which included points about the low cut off...which he touched on briefly in the Keynote, but expanded on a bit more in the Q&A session later.

There maybe be hope yet....

But, before the Q&A session with Dr. Mignot, I caught the Update On Nuvigil session. Which wasn't as great as the Nuvigil presentation that was done in DC, but interesting on other fronts and its Q&A. Largely because it was given by the medical director of the division of TEVA that now has Nuvigil through TEVA's acquisition of Cephalon. But, he did go into the fact that its mechanism of action isn't understood, and the extent of the testing that Cephalon had done on Nuvigil...which explains why it doesn't necessarily work as well as Provigil in others, etc. Basically that no head-to-head trial was performed, just mainly to testing to show that its plasma concentration translates to being longer lasting.

So, then I listened in on the Q&A session with Dr. Mignot, and then it was time for Lunch and Membership meeting. Which was kind of small, and not that special....and more into its presentation....though dessert was nice, though they wouldn't bring out dessert for the people that had to leave early, like entree was barely on the table when the support group sessions were starting... Plus I'm sure other's would've just liked to have had the extras anyways...since they were probably paid for whether they were brought out or not.

But, staying the end covered the important detail.....next year's Narcolepsy Network Conference will be in Atlanta, GA. Already thinking about what I should do to start saving for it. Plus, I'm starting to think that maybe my first year experience on conference committee hasn't been as bad as its been. Though that just be the Xyrem helping the EDS. It was pretty painful being on the calls before Xyrem, I'd be wanting to be in bed before the conference call and likely being in bed if it weren't for the call.

There was then a Nap Opportunity after lunch, I had intended to do by popping back up to my hotel room, except when I got up there, housekeeping was working my end of the floor. So, I ended up just brushing my teeth and taking another stim. Which pretty much got me through all the way to the end of the day. Though I also did take a load off for bit. Which also helped.

In the afternoon, I caught The Over and Under Diagnosis of Narcolepsy, which was interesting, especially on some of the cases that were presented. Though I got to wondering, what if while I was living in Dublin, Ohio....I had gotten referred to him for evaluation....would things be same/different/better. And, why such a thing never came up.

I thought about asking that after the session, but I wanted to catch the Xyrem Q&A session after his. So, I went back to find a new seat and listen in. And, I think I learned a lot from the questions raised by other people, and the session continued out into the hallway afterwards...where I got my chance to ask my questions and get answers....in the end I think I learned some useful facts on how Xyrem works and things I can do to help improve the balancing of side effects and efficacy, as well as something thing to consider on the management of my other problems.

This of course, meant that I missed the final session...which would've been the Dietary & Environmental Strategies for Managing Narcolepsy Symptoms. So, I got in some socializing, and getting ready for the Dinner Cruise on the Nautica Queen.

Where I was kind of questioning why I had gone with the Dinner Cruise, given its length and such....but it turned out to be a good time with food and good conversations.

But, now its time for bed...and tonight I will try to get in two doses before breakfast at 7:45 am -ish.

Friday at 27th Annual Narcolepsy Network Conference

...I am fried.

I woke up at 6:30am to take my second dose, but suddenly I was sneezing like crazy and all sorts of drainage. That I decided to not take the second dose right away, and ended up drifting into some additional sleep and while HH where I dreamt that somebody had secretly reprogrammed my machine through a extra hidden control code in the DEVICE control card. To induce all the sneezing that was happening.

Probably more like my allergies run wild here in Ohio. I had forgotten that when I used to live here, I would often get hit with really bad allergies into late October. Mali commented the air is really dry here, and that is contributing to things to....suppose I should try cranking my humidifier on CPAP tonight. Though if my nose doesn't stop running and unstuff, it might be an obstacle to trying.

So, I end up getting up at about 8am, or giving up. I'm feeling relative wide awake, so I decided to go seek out breakfast. Which included some of the most glorious bacon.

And, then I wander around looking to see what kind of volunteer work I can get into...still not sure if I will or won't make the Rock and Roll Hall of Fame tour that I had signed up for. Eventually, I decided that I need to find a drugstore, and try to knock down my allergy a bit. On the way out to the drugstore, I pass Ming and Shawn...who want to try tweaking the formatting of the schedule, which I haven't gotten one of yet.

I eventually get drawn into helping with signage and later the work on producing the folders. But, I do get to drop down to Table 45 for some sushi, a tempura shrimp roll and a spicy tuna roll with Tamara.

I briefly go past registration which is setting up, around 2pm...and at least I get my badge....because after that I disappear into the behind the scenes chaos and not participate or interact with friends, etc. as I had hoped. And, end up missing the Friday night dinner groups, as well as dinner...except for a few bits of scavenged food and cake. And, some poor decaf coffee, followed by an herbal tea. Guess a disappointment for such a nice hotel. The decaf coffee at the Vegas conference was way better, probably one of the best decaf coffees I had ever had.....maybe not the best cup of real coffee, but pretty darn good compared to a lot of regular coffees I've had over the years.

Though, I guess, Vegas was the last time I had coffee....though I've been tempted now and then to break out the coffee maker at home, either to end the avoid caffeine life I've been on. Or, to change up my morning hot beverage routine.

Anyways, I at least see a few familiar faces, and say the occasional hello here and there, and make significant headway on having folders for the morning, until my back is hurting so bad that neither sitting and working on folders nor standing and working on folders is bearable. Plus the sneezing is getting bad again.

So, its off to Au Bon Pain, because the hospitality suite is closed for the day....to get more bottled water, so I can have my meds for the night and morning.

Might just do a single dosing tonight, since breakfast is less than 7 hours away (which is less than the minimum 8)

The folders drama seemed a lot bigger than my perspective, guess it was good that my flight in on Thursday was so delayed.... Though I hope to engage more into the sessions and activities of the next two days.

Getting settled in Cleveland - Narcolepsy Network Conference

Well, sitting around in the airport terminal was dull, though I then remembered I had my Kindle to catch up some reading.

Soon, I was getting notifications that the 5:05pm flight to DFW was going to be delayed as well. But, 5:35pm seemed to stay....in fact, while waiting in security it was upgraded to 5:30pm. And, the wind seemed to cut 15 minutes off of our flight time. So, there was ample time to make my connection for Cleveland.

During the flight from MHK and DFW....I took a 30 minute take off nap, and then was awake for the rest of the flight, reading and re-reading the inflight magazine and skymall catalog.

Looked like that would be an on-time, until we were informed that there were two passengers still making their way through the terminals that we were waiting for. So ended up leaving 15 minutes late.

But, we went....on the flight I got a gingerale and a bag of spiced nuts. Guess that'll be it for today. I arrive at the airport, and after what seemed like an eternity....my bag appeared. And, then it was where's my transportation. I wander back and forth a few times, check information, told I probably have to call them....though they might be hard to get a hold of at this time. But, I had called ahead about the time change....and it was only about 20 minutes later than I had said. Well, the touchscreen doesn't have them, person says guess they got removed. Maybe there's a brochure somewhere. Same number...still no answer. Well, I guess I'll have to find my own way to the hotel.

Could hire a towncar, $40...cash only. Or taxi $35, will take credit card. So I go for taxi. Except that the cab starter sets me up with a taxi driver that isn't an airport taxi and therefor doesn't take credit cards. So, I did up some cash...and pay the $35 even.

Then to get settled in the room....there's a lot of work....and there's no vending machines in this hotel. Just the mini bar...can't tell what they want for cheap old bottled water. Its all wired, so if I pulled the wrong thing...I'd get charged. Looks like just fancy waters...starting at $4 a bottle and up. Check at the front desk....there's vending machines at the ER, or there is an Au Bon Pain up and over by skyway that's closer and open 24/7. So, I get a $1.75 bottle of water....

I mix it up with a Crystal Lite To Go packet (Appletini....and mix up my Xyrem) Though I end up drinking the rest of it after washing down my pills for the night. Guess I'm a little bit thirsty. Guess I'll be needing more later.

Was shooting to get to bed by 2am...but looks like it'll be more like 2:30...so that means my day won't start until 10:30? Oh well. Such is life. Thought I had packed more charging cables....and thought I had packed a full fountain pen, though doesn't look like it leaked. Guess we'll see when I update my sleep journal in the morning.

But now to shower and sleep.....

Ogden Weather Advisory....

Ogden, KS Weather Advisories, Watches & Warnings

WIND ADVISORY

in effect until Thursday, Oct 18, 7:00pm.

...WIND ADVISORY REMAINS IN EFFECT UNTIL 7 PM CDT THIS EVENING...

A WIND ADVISORY REMAINS IN EFFECT UNTIL 7 PM CDT THIS EVENING.

* TIMING...THE STRONG WINDS WILL CONTINUE THROUGH THE EARLY EVENING...WITH THE PEAK OF THE SPEEDS EXPECTED TO OCCUR THROUGH 5 PM.

* WINDS...NORTHWEST WINDS WITH SUSTAINED SPEEDS OF 25 TO 35 MPH AND GUSTS TO 45 MPH.

* IMPACTS...DRIVERS OF VANS...CAMPERS...TRAILERS...OR OTHER HIGH- PROFILE VEHICLES SHOULD BE ALERT TO THE DANGERS OF THESE WINDS...PARTICULARLY ON NORTH TO SOUTH ORIENTED ROADS.

PRECAUTIONARY/PREPAREDNESS ACTIONS...

TAKE ACTION TO SECURE TRASH CANS...LAWN FURNITURE...AND OTHER LOOSE OR LIGHTWEIGHT OUTDOOR OBJECTS.

Now I'm starting to worry more about whether my 5:05pm from MHK is still going to happen, etc.