Tags: remembering

Narcolepsy Network Conference 2013 in parts ... 3

Sunday

So, breakfast was a 7:30am…this time I went with all the bacon I wanted right away, instead of going back for seconds. I wish there was an easy way to have bacon like this at home, as well as finding a way to be more consistent of at least having breakfast in the morning. With the importance of it being protein focused (and less carbs…which my breakfasts tend to be when I’m at home.)

Breakfast was followed by breakout sessions.

The first session I went to was “Narcolepsy and Disability Law", which was something a lot of people were interested in, though it wasn’t as interesting once it started. Perhaps because it largely focused on driving.

Where I had on my own given up driving in large due to my problems in staying sufficiently awake while driving, and since I had applied the ethical responsibilities of being a professional to my life well before I earned my designation of “Professional Engineer". And, consider myself a “Professional System Administrator", even though there’s a lot of debate on whether its where our profession wants to become or what it really means. Even though we belong to an organization called LOPSA (League of Professional System Administrators)….

Anyways, at one point the discussion touched on the idea that if you’re trying to find out if you have Narcolepsy, could you be cleared to drive by your doctor but later get into an accident that leads to diagnosis and then sue that the doctor failed to diagnose you sooner and had cleared you to drive on the basis of his failure to diagnose you, etc.

Though I didn’t hear the answer on it, though there was mention that there have been cases where of such suits being filed….but no mention of outcomes. Which was interesting, because in the years prior to finally getting my diagnosis, I had considered getting a license and a car, and pay for some really expensive gas….and see if it results in me having another accident that finally get’s me diagnosed, and maybe get a lot of money from a malpractice suit.

Though I decided that it would be too expensive, and too risky, to try that experiment. Plus I still consider myself a “Professional” in all aspects of my life, even if nobody else does.

Not sure what else was all covered anymore. Kind of wonder now if I shouldn’t have caught one of the other sessions at that time instead.

Next, I went to “Integrative Mental Health: A New Approach to Depression and Anxiety” by Dr. Rubin Naiman. He’s someone I find interesting, especially since having supper with him before any of his sessions at the NN Conference in Las Vegas. And, conversations that continued afterwards. Plus I found some of the things he had talked about in past sessions interesting, some of which I wouldn’t have considered attending otherwise.

Again there was some interesting stuff in this session, even if I can’t recall any of it at this particular moment. I did hear from others during the conference that the weird memory problems that I’ve been having a lot lately aren’t uncommon. Just as I had never heard of the term “Brain Fog” until the FDA meeting, and it came up often during this conference and it certain describes what I’ve been experiencing more and more now.

I had heard people mention that they used to have excellent recall in specific areas when they were younger, but now are frustrated with the trouble they have now…. I used to have a thing with dates when I was younger, now it is starting to become a real problem. Especially the kind where I get my days wrong. Like I started Thursday, knowing that it was October 31st and that it was Thursday (as my Xyrem shipment was to appear later that morning)…but when I got out of the shower, my mind had switched the day to Friday.

So, I dressed like it was a Friday….nothing registered that it wasn’t when FedEx and later UPS showed up…and I removed the entries from Delivery Status (which I include the Day/Date of expected delivery as part of the entry name). And, I went through the whole morning thinking that….almost brought it up on IRC, wondering where Friday lunch was going to be, when it finally clicked that it was Thursday. (though the mess the migration to office365 made to my master calendar at work, didn’t help…since I got the reminder of my Thursday Xyrem delivery on Wednesday morning….and notification that Friday, Nov 1st was a University holiday (instead of the fact that Black Friday is a University Holiday…) Also its annoying that everything has a reminder by default now, not just the meetings that I had set a reminder for.

Turns out OWA is incapable of having a default reminder setting of none. >:XX

I forget if I wanted to request the information that Dr. Naiman had said we could email him for during his session.

Next was the “Medications Panel"….which was a bit better as panels go, though can’t say that I learned anything new that I needed to learn. Though wasn’t sure which other session I would’ve gone to at this time slot. If I had to pick one of the others….I suppose I would’ve gone with “Survey Results on How Women with Narcoelpsy Perceive Pregnancy"…. Perhaps because, I sometimes think that if I were to break my singleness, that it would be through finding someone that get’s me because she’s also a PWN, etc. Though I don’t seem to be getting any younger…so the finally starting a family now that I’ve been diagnosed seems to be less and less likely now.

Now its time for lunch, where I can’t help wonder when they are going to bring up the rest of the membership meeting. But, instead they do all of the drawings for the raffle, and then have Dr. Thomas Scammell give his talk on the “Neuroscience of Narcolepsy". Which covered got more in depth about the two systems associated with sleep/wake in the brain…including some that Hypocretin is the master switch for the wake promoting systems in the brain, and the closest system it affects, also in the hypothalamus, is the Histamine cells, and another look at this area of research. Evidently like Orexin/Hypocretin which independent groups discovered in parallel…there were separate researches that had similar discoveries in Histamines. There was also a plug for a new site that Harvard University was going to be putting up about Sleep Medicine in November, though he wasn’t able to play a sample video. It had worked on his computer earlier that day, but wouldn’t work during…and rebooting didn’t help.

After this was done, there was a quick mention that the rest of the membership meeting was going to be in Windsor C. The result was like 72% (where 66% - 2/3’s majority needed to pass bylaw amendments) passing both bylaw amendments. Plus ~91% for all 3 people running for board to get in.

Which while controversial, the outcome wasn’t unexpected. Hopefully, things are back to what’s important….though there’s some rumors that there’ll be more to come next year….

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