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.

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Dear Lawrence

This is my response to the “Dear Diagnosis” Blogathon

December 27th, 2008

Dear Lawrence,

SPOILERS!

If you haven’t read the letter from Manhattan Medical Associates, read that first.

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.

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Hopefully this letter has arrived on the indicated date, however been having trouble with the timing circuit after I tried to graft a serfboard into the chameleon circuit in hopes of at least getting the old familiar shape, causing an overload which re-engaged the randomizer into navigation.

So congratulations, you might be thinking, now that you’ve received the letter that you’ve been waiting for an agonizing almost 4 weeks, since your PSG on December 1st, 2008. (you’ll later find that insurance paid the claims for the sleep study the day before. Not that the PSG summary [printed on Dec 3rd, 2008] took over 3 weeks for the results to travel through the mail vortex to make the 3 block journey.)

You’ve done little research on sleep disorders, despite your suspicions with the sleep study turning into a split when the sleep tech woke you to shove a mask on to your face. But, you’ve read enough to think that this should finally fix all your problems, even if a sleep problem was the last thing you thought you ever had.

Plus you will get a new toy to play with….for at least few years until you get bored of looking at your sleep data.

Be warned, that this will be one of those rare times somebody will be annoyed with you for passing a test. And, you’ll hold back saying that your actually jumping for joy on the inside that they finally found something wrong with you that can be managed, and potentially with great success.

But, be careful, and be informed, because in the near future you will run into a lot of expenses. Which will burn through all your savings and start running up those cards again…. Also all that clothing that you mysteriously out grew in a couple of months that precipitated the suggestion of getting a sleep study, that you may decide some new year’s day to toss out, thinking you’ll never be down at that size again. DON’T DO IT. Because you will. Even after the other mysterious surges in weight.

More SPOILERS, read ahead if you dare. (which I know you will ;)

What’s going to put the damper on your joy, is that once you repay the sleep debt from sleep apnea, you problem of insomnia/sleep fragmentation will come back, and don’t worry…lucid dreaming will come back as well, along with those hallucinations you used to hate. And, you’ll still hate them, especially when it causes sleep paralysis.

While the journey ahead will be rough, including insensitive doctors with their “Good news, your test results are negative….[we still don’t know what’s wrong with you.]” Or they only care about the single word in the MSLT summary of “normal", and refuse to discuss it any further…to the point where the doctor will tell you that he’s ignoring you until you move off of the subject. He’ll even tell other doctors that you’re crazy and you somehow got the idea that you have Narcolepsy (when it was your doctors that had first mentioned it to you, that led you to research it and finally fess up that you do experience sleep paralysis and hallucinations, both while falling to sleep or waking, and the occasional hypnic jerk when your falling asleep.)

While you will soon find that there’ll be no more talking to your mother, and you’ll feel physically isolated from anybody that can truly relate. You will meet a lot of wonderful people in the virtual world, and while one of them will plant the idea of meeting them in person at a conference and then back out at the last moment. There will be some people there that have been told to watch out for you…particularly someone named Sharon. Or someone (named Sean) that will spot you wearing a “First Timer” ribbon sitting alone, and stop you from doing that ever again…

And, there will be other amazing/inspiring people in your life, such as an Ann or a Julie, even a Bailey.

While this may on occasion interfere with your pursuit of being with your other family that pursues that blue box that travels through time and space. You will have another new family that you place more importance on. And, sometimes you’ll wonder if you’ve seen somebody at one that you had seen before at the other…. But, you’ll have, at least, two families that get the things in your life that your first family doesn’t get about you.

And, perhaps someday you’ll get to starting up a local support group, or work up to considering one more move to somewhere with one.

Your almost 5 years in the future self…

…stumbling around in the time vortex, in search of pants he used to wear before things started getting weird near 30 or worse near 40….

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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Narcolepsy Network Conference 2013 in parts ... 2

Saturday

So, I got up a bit before 6am, leisurely got ready since breakfast wasn’t until 7:30am. But, I was pretty much ready to go down at 6:30am, as I hadn’t gotten out my computer and resisted the need to use it. I did neglect some of the things I need to do regularly, like my voluntary role as moderator for a couple of mailing lists. But, when I finally returned to the real world, it was clear that somebody else had taken care of it. It has always felt like there was another person moderating as well, though usually the spam just piles up until I get rid of it. But, everything was clear this time. So, I guess no worries when I got on future vacations.

Anyways…I went down and wandered back and forth watching people set up for the day, along with the various other people that had also come down early to wait for breakfast. A little after 7am, I found myself back at the breakfast area and there were other people already getting food and finding tables to occupy. So, I got breakfast too. I picked an empty table by the door, which gradually filled up during breakfast and I met people from past conferences, as well as first timers. Eventually, I got up for seconds, and came back to find that my spot had been cleared…so I had to get another set of utensils.

Breakfast was kind of interesting in setup and layout….the tables were empty and you had to pickup your own napkin/utensil set outside, as well as all drinks. Which was okay, but what was odd was that the space was split across the hall. So, it would make it difficult if you were looking to connect with specific friends during breakfast, etc. Then I made my way to the room where the opening speakers would be. Things started late. Since there was to be a Welcome and announcements bit at 8:45am, before the two main opening speakers at 9:00am and 10:00am. But, the Welcome/announcements were rushed through a little after 9am. Probably having breakfast scheduled to 9am was a factor, though there were also some technical issues.

Keynote Speaker

This was a “Narcolepsy Update” by Dr. Michael Thorpy. Which I recall touched on the recent developments in Narcolepsy in the last few years, including that most of the understanding and work has been in the last few decades, despite it being first described in the 1800’s. He made a note to mention other speakers at the conference that would be speaking more in depth on some of the areas he touched on.

Following this, was Dr. Jerry Siegel, who spoke of “A New Development in Our Understanding of Human Narcolepsy". Which like all speakers start with a summary of what is Narcolepsy, and then a review of hypocretin cell loss associated with Narcolepy. And, then got into the new development. A major increase in Histamine cells in Narcolepsy, yet a low concentration of histamine in CSF.

Not sure what the development means for Narcolepsy though…. since Histamine is wake promoting (which is why anti-histamines make you drowsy), would they be looking to increase Histamine levels as wake to increase wakefulness. Where an obvious downside is that it might make you more allergic or have strong allergic responses to allergens. Or, is it because this is the first time they’ve seen an increase of a certain type of brain cell in people. Where the general understanding has been you are born with a certain amount, which would otherwise stay constant throughout your lifetime if you didn’t have events, conditions, or such that result in the loss of brain cells. And, such losses are irreversible.

After this, was the first breakout session.

I went to “Narcolepsy: Is there an environmental trigger?” by Dr. Todd Swick. After a few minutes, it dawned on me that the answer is definitely yes. Given that its considered an autoimmune disease, where large portions of the population have the HLA(s) that have been linked to Narcolepsy, but not everybody develops Narcolepsy. Including a note that if there is Narcolepsy with an identical twin, the other doesn’t develop it. Even though they obviously have the same genes, and had mostly the same exposures in early development.

But, while the big focus seems to have moved from streptoccocus to H1N1 as the trigger, he talked about other things that have been associated with the onset of Narcolepsy. Like pneumonia (which I do know I had when I was a child), or heavy metal exposure (where I know I’ve had exposure to mercury….)

This session was followed by Lunch, which included the Membership meeting…where things got quite heated. And, eventually adjourned to sometime on Sunday, so that the rest of the conference can try to keep to its tight schedule.

That was probably another weird thing with the Hotel this year, we didn’t have any space that was ours for the entire weekend, not even most of the day. It was we had to end at 5pm, because they needed to reset the space for another group/event in the space.

Anyways…the first session I caught after lunch was “Narcolepsy Advocacy Update on the FDA Patient Focused Initiative” by Dr. Mark Patterson and Julie Flygare, JD…hmm, just noticed they have her name as “July Flygare” in the schedule :DD

Seemed it was to go back and forth between Mark and Julie, though Julie soon found that she was doing most of the talking. Which was fine with me &#59;D Didn’t really learn a whole lot that I didn’t know, having heard about it early on during the dinner cruise last year which led to lots of attention to get involvement following last year’s conference, and continued attention up to the meeting on September 24, 2013. Though it was interesting to hear a bit more in depth of the panelists, and connecting that someone I had met on Friday was one of the panelists, etc.

This was then followed by a “Narcolepsy and Hypersomnia Research Update” by Dr. Lynn Marie Trotti, which I was really interested in hear, since I had caught her presentation during my first NN Conference in DC and had found it interesting, despite not know what I was going into. And, I had wondered about things over the years. Her update was more interesting in that during the presentation she asked how she was doing for time, and learning that there might not be enough time to cover everything. She started talking faster. But, I could still follow along, and in fact it seemed to make it easier to maintain my focus. And, she would still respond to questions, etc.

There wasn’t much of a break, and I then made my way to the “How to Cope in the Work Place Professional Panel"….which turned out to not really be what I had thought it would be, but it was still kind of interesting. And, it was certain interesting to find out some of the things a person with narcolepsy does for work. Namely Mee who is a trader on wall street. Generally, the main theme was that we work in something that we are interested and/or passionate about. With the exception of Sara K., who is working in something really boring and survives by doing Narcolepsy Network business to break up the monotony of her work.

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