Category: "NN Conference"

Possible treatment for Alzheimer's from the world of #narcolepsy?

While, I was passing the time on the journey home, I was catching up on #nnden14 tweets. One of which was this one:

To which I first wrote this as as response….

But, discovered that my second response never left my phone….which was:

@kimberlyratliff Or better yet, I wonder if the people working on the Orexin Antagonist for Insomnia, might lead to it being a treatment for Alzheimer’s dementia patients?

NN Conference 2014 ... part 0 #nnden14

Traveling to this year’s conference seemed to be more challenging that previous years. Not sure if it has been the steady increase of entropy and the proliferation of piles. Or the added joys of my Ataxia.

So, way back in May, when I was trying to decide on what nights to book at hotel….I was looking at what kind of flight itineraries there were available….since it affects whether I would want to fly in the day of the conference (or more likely the day before the conference…to at least start it off with one good night of sleep :zzz: ) And, whether I would be looking to fly out the day after or stay an extra day of nothing. Had done the latter for the 2012 Conference. It was kind of boring that extra day, though it was nice than when I had exceeded my sleep debt and had slept through my alarm after the 2013 Conference (meaning no hotel breakfast before trip home :..( )

What I found was that flying out Wednesday was substantially cheaper than Thursday….more than enough to justify the extra night at hotel, etc. I should probably have taken Monday off….I should also probably have started packing at least during the weekend before. Instead I left it to Tuesday…and didn’t really start until after 6pm. (with a 2 hour break to whip up supper and sleep, after a little too much time playing “Doctor Who: Legacy"…)

The mistake I made on Monday was starting a new project and feeling compelled to see if it worked Tuesday morning, and spending too much of it figure out why it didn’t. Its actually a small sub-project where the larger project isn’t yet fully working….and has been going on for months already. So progress or not, its still going to be there when I get home. There was also an extra accumulation of trash that I needed to clear out before I could start packing. Like the giant box my new suitcase had come in…back in July, which I was just opening now. Took a while to figure out how to open/close it, etc. Turns out that its not really practical for the kind of packer/traveler that I am. Though probably will just put up with it for a year or so.

Also, I knew that I needed to do one load of laundry for the trip, which didn’t get started until about 5pm. Ended up cramming lots of other items, especially after I discovered that my NNA shirt at the bottom of my hamper pile (I have hamper, but there’s a pile next to it too now.)

Anyways….I had found this great itinerary… Leave home at 10am…. have 3 hours between flights in Dallas, so that I can spend some time at the Centurion Lounge….like grab a quick bite, pop some pills, and maybe even get in a massage. But, then in late august I get a notification that the airline has changed my plans….its down to a 2 hour gap between flights….I had booked Supershuttle way back when I had done Hotel and Airplane…. so debated whether I needed to adjust my reservation.

The plan for returning, would have me leaving the hotel at 10am and getting home while the sun is still shining.

Then a couple weeks later I got another notification of changes to my schedule. They moved up when I needed to leave my #NNFamily…. who I wish I never had too. Much earlier….now I’d have to leave the hotel at 7:30am. Which is bad because for some reason after Labor day…I had stopped only managing to get 5.5-6 hours of sleep each night….so getting 8-9 hours a night. So, I was back to 7:30am being my normalish wake up time. Because of this change, I had contacted Supershuttle to revise my entire reservation which resulted in a 7:30am pickup time. (a bit longer time window than the original, but suspected traffic might be a more of a problem at that time…) It didn’t seem to really affect airport to hotel scheduling….its still when I’m done at baggage claim visit their counter, etc.

In fact, Monday night I had overslept my first dose by 2.5 hours, so opted to not take my second dose and just sleep for about another hour. Perhaps the problem, was that I had been putting off replacing the nasal pillows on my mask ’til after the conference and had finally caved to replacing that night…. Though delaying making a new mouthpiece, since I just had a dental cleaning on Monday, and my bite tends to be off for a few days afterwards….

During #nchat, I mentioned how annoying it was of the airline to have done this to me. Which led to chatting with the airline via Twitter, and they offered (and I accepted) a change to my return flight. Now I don’t have to leave on Monday until 12:30pm…..while I get home at night, its not the last flight of the day (so less worry that the building closes and they kick me out of the building before a taxi materializes…happened to me coming home from Galifrey last February.) It would have me coming back via Chicago….and give me about 35 minutes to make my connection.

I guess I can live with that. Though probably won’t try to see if I can schedule my next Xyrem shipment for the next morning (Oct 21st…last shipment was on Sep 24th.) Speaking of Xyrem…for some reason they been starting to call me around the 14th to try to schedule it…wonder if they’re going to try calling me during my conference window to schedule it.

I was able to get a reservation this year for Black Car to transport me to and from airport. So much nicer coming come from a trip, especially last at night when you have argue the taxi driver that really do want him to come out the airport to pick you up. And, that he’s not coming out there for nothing. Well, if an hour goes by and you still don’t show up and its below freezing and they’ve closed the airport and kicked out into the cold 45 minutes ago….then its because I called a different cab company who eventually came and got me about 30 minutes after that. Instead, Black Car is waiting for you at the airport (sometimes even with a sign.)

Eventually, at about 11pm, I decided I’ve had enough with packing….either I have it or I don’t. And, there’s still a little bit more that I’ll need to do the next morning anyways, when I pack up my CPAP bag. Though as I get ready for bed, I check out Facebook quickly, and end up printing off boarding passes, etc, and retrieve other items from my printer that I had printed for the trip. And, later on as I’m getting ready for bed, I dig out some newsletters/magazines that I had set aside to have something to read should I find some free time during travel or before conference… Stack those on suitcase as I’m not sure if there’s any room left.

Not sure if there’s a raffle this year, but most of what I had set aside for that this year…ended up not making it.

Wednesday, October 15th….9:58am….I’m moving bags out the door, so I can make a quick escape after arming my security system….when the phone rings, though it was just one of my daily telemarketing/charity calls (not sure which, but Google voice has flagged them as spam so they get shunted to voicemail…and no message is ever left….except an occasional one of some background typing….) Though later when I’m in Dallas, I see that among my missed calls was SDS. But, first I have to get to Dallas.

IIRC, there had been a slight tweak to the flight from MHK to DFW….But, Black Car has been so wonderful that there’s no worries about getting there by the cutoff for check-ins. Have had cab reservations, where the driver has to stop and get gas along the way…. (though partly because they lost my reservation…and I had called them, forcing them to find rush somebody over who wasn’t told that I wanted to go to the airport….or something.)

So, I’m sitting at the waiting area waiting for security to open…flight was scheduled for 11:30, and boarding time was to be 11am. There was guy across from me that was already sleeping when I sat down. He wakes around 11am, wondering why security hasn’t opened yet. I’m it a bit of a fog, but I’m pretty sure I hadn’t dozed off….but how can I really tell…. Occurs to me that I get flight notifications to my other phone (since I had switched it after forgetting my usual phone one trip.) Find there are 3 unread texts. The first is the flight is on time and details. Second its been delayed about 20 minutes. Third its been delayed another 20 minutes.

12:10pm maybe.

Security opens shortly afterwards…probably sensing that we’re getting restless now, though the guy across from me had just laid back down for more sleep. I rush, because I have feeling like they’re going to be a hassle to clear, even though I’m TSApref. At this airport it just means that I can keep my belt and shoes on, and optionally a light jacket….if I hadn’t crammed the pockets full for all the stuff from my pockets.

No belt this trip…had opted to go casual.

They’re running my bag through xray…hear that they want to run it again the other way. Overhear person at xray machine saying I think that looks like a camera…. the other guy (after getting permission) starts going through my bag….pulls out my Tamrac 5682 camera bag….guess that wasn’t enough of a give away….opens that and takes out camera….yup, its a camera. Then gives it to me to put everything back in its place….restore the spot where I stuff the Ziploc with my Xyrem bottle.

And, then we wait for the our plane to arrive, and for boarding to start. At least they still did some groups….they start with the usual diamond, platinum, priority access, people with children, uniformed military, but then include group one to board first. That’s me.

I always get group 1, because its an Embraer…and I need to find a spot in the limited overhead space for my CPAP bag.

And, then apparently some delay in take off….while I manage to stay awake for it, and go through the American Way magazine…then start into the Skymall catalog, but after a couple of pages, sleep wins and I wake a bit before plane begins descent.

Hmmm, boarding time to my next flight is about 30 minutes away….we’re to be at B2 and I need to get to C10….will I make it? But, we arrive and the pilot announces we’re going to be at B1, except there’s a plane in it and we’re waiting for it. Though neighboring gates are empty??? Eventually we get there….I down to just 10 minutes to get to next flight. Somebody behind me is grumbling that she only has 5 minutes.

I start in hunt of escalator to skytrain, when I pass walkway to terminal C. Decided that the time to go up and down and wait, etc. Might be faster to walk it….well, it might have been if all the moving sidewalks were working. Only the first 2 of 5(?) were… End, up arriving at gate just a little after the start….still doing priority lane, so not much longer before Group 1 is called and I can see about finding my seat.

That flight goes pretty smoothly…I stay awake to finish off the Skymall catalog, and then dig out something to read…a “Generations” newsletter (my first issue since joining NAF, following my recent new diagnosis…) And, its a special one…. Learn that the latest new problem that has been bugging me, might be part of my Ataxia progression…and is mentioned as something that leads to increased risk of falls later on, as it impairs our ability to compensate as well as we have been.

Also came across a research summary of “Modifying Machado-Joseph Disease Progression by Caffeine Blockage of Adenosine A2A Receptors". It starts with “MJD was originally described in people of Portuguese descent and it presently considered the most common dominantly-inherited cerebellar ataxia world-wide. Where apparently “chronic consumption of caffeine…alleviated neuropathological modifications and motor behaviour impairments.”

Hmm, wonder if that’s why my symptoms got worse….following the constant consumption of caffeine. Had at one point largely been completely caffeine free, except for chocolate. I had eventually gone back to enjoying a cup of coffee in the morning, or having a Dr. Pepper or Mountain Dew with Lunch….though still way less than I was before I had decided to try eliminating it.

Being Caffeine free did seem to help when I was on Ritalin as my daytime stimulant….but as I built tolerance the doc only wanted to increase the same dose times, not change timing to try to smooth things out….I switched to Nuvigil (was on Provigil before Ritalin, and had wanted Nuvigil then because paying 65% of its cost is about half of paying 35% for Provigil….this was before Provigil went generic, and Nuvigil got reclassified as a specialty drug…capped to $75/month.)

Not sure if I can train myself to drink more coffee though….sometimes I don’t finish the one cup I make in the morning….or notice until the next day.

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Swing for Sleep 2013 is over...

In 2011, I pledged $0.50 per birdie, resulting in $45 to Narcolepsy Network. I was surprised it added to me standing out at the conference that year. Though I heard some people say that I’m becoming someone that is an easily recognized regular associated with the conference…. So, I might wonder if I’m in the right place when I’m looking for the conference area, but others will think they are if they spot me? :hmm:

During the conference Nicole, had said she’s planning to break 100 next year.

I decided to take that dare, and pledge $1 per birdie in 2012.

That resulted in $121 to Wake Up Narcolepsy.

For whatever reason, I decided to stick with $1 per birdie pledge in 2013.

So, today…as I was coming home from work, I felt really thirsty…so first thing at home is to down a bottle of water.

One of the problems with having fewer co-workers now, is there’s no reminder to take a break around 3pm. And, by the time I realize its passed, I don’t feel like doing anything about it so close to quiting time, plus I’m usually in the zone to get that one last thing done before I call it a day.

Guess it was right to find the dreaded letter from Nicole Jeray…. this year its for me to donate $129 to Narcolepsy Network.

Full story »

Narcolepsy Network Conference 2013 in parts ... 4 (last)

Post Conference

This was different this year, probably because Ann was heading home right after the conference and that there was no hospitality suite (consuite) this year… I wandered the lobby for a while, and eventually met up with friends planning to go to Maggino’s for supper. Nothing wrong with doing it twice in a row, I guess….

Afterwards we continued chatting in the lobby. At one point we got to discussing SP, don’t think I’ve ever had the discussion about the what leads to SP with other people before. But, our experiences were similar.

I stayed up even later….though still considered early given that it should’ve been “dead dog” time.

As I was prepping for sleep, and how much pre-packing would be possible. I decided that I might try to keep a similar wake up time of around 6:30am, even though it was after 11pm. This way I could get in hotel breakfast before I need to make my way to the airport for a 1pm flight. Where I hadn’t made any arrangements, but was probably going to go with trying MARTA to the airport….

Unfortunately, I slept through my second alarm…and woke to sunlight streaming through the curtain. it was after 8am. Panic. Which was unnecessary….

But, I rush around packing everything up…and make my way down, and eventually check out instead of doing breakfast.

Instead I sat around in the lobby for 2 hours, hoping to see anyone else from the conference also taking the MARTA to the airport.

Actually, I kept stalling and stalling, eventually I left at about 11:20am, and barely caught the 11:34. Took a while to figure out that there was no avoiding the extra $1 charge.

What I was really worried about was what if I dozed off on the MARTA? Well, iI did doze off…but it didn’t matter since Airport is end of the line. Could’ve been interesting had I tried MARTA coming from the airport….

Not much else happened on the way home….except that I ended up sleeping pretty much the whole flight from ATL to DFW…where we heard that they had turned the airport around at DFW…. And, leaving DFW was also challenging….the airplane was late, and then there was a mechanical problem and then it took a while to finally take off…as I fell asleep as the plane finally pulled away from the gate, but woke before it finally took off.

I stayed awake the rest of the flight. Where the plane took a loop around north before landing….at least it wasn’t one of those days where the wind is so bad that nothing can land or take off from MHK.

And, then …. I started wondering when can I lock down plans for a weekend next October in Denver, CO!

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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