Tags: mhk

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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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!

Home Brrr Home

Well, I'm home from another trip from the freezing north. Its a tad cold in my home too, good thing my flight from DFW to MHK was delayed, otherwise it would probably be colder.

When did I schedule the vacation hold on my thermostat? I was sure I had done it just before 8pm the night before I left....setting a 5 day hold, so that it would expire well before I got home. But, evidently it had gotten super cold in my home so it took a long time to recover. It was 62 when I got home, and it is try to get to 68......based on how much its gone up in about 45 minutes...I guess it has been working since around 8pm to get up from 50 (where I had set the hold at, I'll probably need to rethink the vacation hold bottom.)

Meanwhile, I found my missing smartphone. I didn't leave it plugged in...in the hallway like I thought I had. But, I had remembered to pick it up from there, but I had set it down when I had stopped to unplug my hot water pot....and forgot it there.

As for how the flight home went...leaving Calgary for DFW was uneventful. Going through customs was somewhat easier thanks to Global Entry, though I'm not sure why I don't also have Nexus....wonder what's involved in getting that added. Though the trip into Canada was relatively painless this time. Though I did get picked for secondary screening before security.... And, seems they subject ultrathin computers to secondary screening as well. The picked on the thin macbook product of a person ahead of me...and my chromebook, but they didn't test my thicker Lenovo laptop or other beasts that I recall for people around me. Though was kind of annoyed that Chromebook always turns on when you open it...a complete shutdown really should leave it off. It didn't seem happy about starting to turn itself back on from the complete shutdown, and then getting closed. But, airport security just wanted to swab the keyboard.

Full story »

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.....

Flying to 27th Annual Narcolepsy Network Conference...maybe

Well, I was hoping to get in with time to get some supper and a good night's rest before the conference.

But, seems everything is going wrong today.

The wake up and get ready for ride to airport wasn't too bad....in fact I was ready to go before 9am, though I had delayed the scheduled pick up to 9:30am...because they estimated time is a lot shorter than I'm used to, and they hit it quite well when I rode on October 2nd.

Finally about 9:20, I went out...remembering that they're more than punctual on pickup, they are there a bit before hand. And, sure enough a Black Car was waiting already.

But, it took a little longer than estimated to get to the airport, though still reasonable. The delay was due to different K-18 construction blocking the entrance to the airport, requiring a detour to get there.

Checking my bag and getting my boarding passes wasn't too bad, though going through security was a different. When I first started flying with CPAP, it was take it out for them to x-ray and swab. Then a couple years ago, they didn't care anymore. And, I didn't need to take it out. But, now they want it out and checked again.

Though no problems with Xyrem. That first time through.

After getting settled to wait for boarding, the PA came on to say that our plane got diverted to Tulsa, OK due to high winds...an advisory which is in affect until 7pm, i found out later. They don't know when the plane will make it in, so everybody needs to leave the security area, and check on their connections, etc.

After a lot of standing, I find that my DFW to CLE flight has been rebooked to 7:45pm...arriving 11:15pm in CLE....so I'll be lucky if I hit the hotel by midnight, etc. Guess I'm going to sleep in on Friday morning and for go the Rock & Roll Hall Fame tour....

Guess second time through security should go smoother :)

And, I guess I can get use of the Admiral's Club to pass the time in DFW.

Darn....now they've officially cancelled my flight to DFW. Well, the agent said he would hold me a spot on the next flight, so hopefully he'll make that happen.

So maybe no Admiral's Club now....but still hopefully make it into Cleveland tonight.