Tags: narcolepsy

04/04/12

  09:12:00 pm, by The Dreamer   , 376 words  
Categories: General, Travel, Healthcare

The Dreamer Claims A(nother?) Victim!

Link: http://remrunner.blogspot.com/2012/04/legs-on-fire-starting-my-training-for.html

What did Julie Flygare do to deserve this? I have no idea....

She ran the Boston Marathon in 2010 for Wake Up Narcolepsy....before I knew who she was and what Narcolepsy is. But, somebody had apparently told her to be on the look out for me at the Narcolepsy Network Conference in Crystal City, Arlington, VA.... but I didn't really learn much about her until I started following her blog and other online presence after that conference.

I learned a lot at the conference, and continued to learn after the conference...including lots of stuff about myself. I'm still a work in progress. (idiopathic hypersomnia, hypnagogia, hypnic jerk, sleep paralysis, automatic behavior, long sleep, etc.)

But, back to Julie.... because I was stalking her online.... about a week and half ago, this post from a few days earlier caught my eye:

In My Father's Footsteps: Trying to Find Registration for Mt Washington Road Race to run in my father's honor on Father's Day for charity

So, I did a little research of my own.... and then wrote this blog entry on my Tumblr site: REM Runner wants to run The Northeast Delta Dental Mount Washington Road Race 2012 -- In memory of her father and to raise money for Narcolepsy Awareness and Research.

I have my Tumblr site set to tweet my posts.

Using the APA Style

LawrenceChen. (2012, Mar 25). REM Runner wants to run The Northeast Delta Dental Mount Washington Road Race 2012 - In memory of her father... http://tmblr.co/ZmWZfwIYfD1N [Twitter post.] Retrieved from https://twitter.com/#!/LawrenceChen/status/183999798339313665

Which surprisingly lead to this tweet:

NortheastDelta. (2012, Mar 27). @LawrenceChen Tom Raffio the CEO of @NortheastDelta will be contacting soon. :) [Twitter post.] Retrieved from https://twitter.com/#!/NortheastDelta/status/184740188797419520

And

NortheastDelta. (2012, Mar 27). @LawrenceChen - for clarification - we are contacting Julie re the Mount Washington Road Race :) [Twitter post.] Retrieved from https://twitter.com/#!/NortheastDelta/status/184745755431550976

Concluding with

RemRunner. (2012, Mar 27). @NortheastDelta @LawrenceChen Thank you so much! REM Runnning up a mountain for my dad would be the honor of a lifetime! [Twitter post.] Retrieved from https://twitter.com/#!/RemRunner/status/184749224636850177

And, then it seemed like an eternity passed before I heard anything further...until I spotted her "Legs on Fire" post this morning.... Guess that means my next project is to get her published ;D

Full story »

11/10/11

  07:58:05 pm, by The Dreamer   , 3536 words  
Categories: Travel, Healthcare

I went to a Narcolepsy Network Conference in Las Vegas #NN2011

I was in Las Vegas, NV for the 26th Annual Patient Narcolepsy Network Conference from October 13-16, 2011 at the Stratosphere.

This is my second Narcolepsy Network conference. My first was the 25th Annual one in Arlington, VA (actually the Hyatt in Crystal City, VA)....

What led me to my first NN Conference was kind of strange. In early 2010, I first heard the N word raised in relation to my continuing EDS problem after successful/compliant management of my Sleep Apnea using CPAP (AHI was less than 1.0....closer to 0.0. In fact it was 0.0 in a PSG I had in December 2010, so sleep doc lowered my pressure so that its around 1.5 now.)

I honestly didn't really know a whole lot about Narcolepsy then, so I started researching it online. Since, I was a regular on the TalkAboutSleep message boards, and attended the Sleep Apnea chats regularly too....I started showing up to the Narcolepsy/Idiopathic Hypersomnia/Fibro chats as well.

From the chats, I feel like I've gotten to know Tracy and some of the other moderators. And, Tracy suggested a few times in chats that I check out Narcolepsy Network and its upcoming conference. With the implication that we would finally get to meet face to face if I went to the 25th one.

So, that's why I joined Narcolepsy Network and then went to the 25th Conference in 2010. Somewhere after I was committed to going, namely I had purchased my non-refundable coach airplane ticket. Tracy started saying she might not show up, and eventually it became a definite. But, she would be on for regular Thursday night N/IH/F chat....so I could do that the night before the conference from the hotel. During the chat I met Ann Austin....

At this point, I wasn't sure there was going to be any future NN Conferences for me. Since they seem to usually be second weekend in October...and doesn't line up too well with other conference/convention activities that I want to do this time of year (namely the Ohio Linux Fest...which is usually in mid-ish September, though the year I last went it was on the Columbus Day weekend....and some day I want to go again. And, Chicago TARDIS....Thanksgiving Day weekend. I actually wasn't planning to go this year [2011], but decided that I would when Alex Kingston was going to be there....she's not now, but Fifth Doctor Fest makes it still seem ok....though its missing one companion that I associate with 5, though Tony Lee kept saying at last year's Chicago TARDIS "Adric is dead"... :`( )

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05/06/11

  04:31:38 pm, by The Dreamer   , 3581 words  
Categories: General, Appliances, Healthcare

I had a Spinal Tap

...though I don't know why, but hope that I'm not in the 11.5%

This all started when I had a January 13, 2011 appointment following my PSG/MSLT of December 2&3, 2010. The finding of the MSLT was 'normal', and there was no room for discussion or questions on it with my sleep doctor. But, while I was waiting on the MSLT results, I got a letter dated December 14, 2010 from Stanford saying had the DQB1*0602 subtype.

After the appointment, I was to get a referral to somewhere like Stanford and maybe I should see a Neurologist because maybe I'm actually have seizures and not EDS + sleep attacks. When I asked what 'somewhere like Stanford' might be, the doc said Stanford is the only place he knows so that's where. So, why did he say 'somewhere like Stanford' if he doesn't know any such place.

But, the whole Stanford thing seemed to stall after I was told that I needed to call my insurance and tell them if it would be covered...and not just let me tell them there that it would be covered. Somehow leaving and then saying that I had called my insurance was better than just saying it? :??: Anyways, I called, and found out that it would they would be covered as an in-network provider (so even better than I had thought).... But, when I called back, the doc said that he had been thinking and probably wouldn't do the referral now.

The following week, I got a call from his office saying they had called the number of Stanford...and it was not in service, and wanted me to find out the correct number. I provided them with the number that was on their website, the URL being part of the letter that they had gotten the number they had called from. Though later it occurred to me, that Monday, January 17th was President's Day. Which was a University holiday for me, and likely was a University holiday for Stanford....and I found out that it was, and they were closed that day.

And, then I heard nothing..... I contacted Stanford a few times after this, and they average about 3 calls from medical professional each day but they don't recall having gotten any phone call from mime.

After a couple months, I decided to take it upon myself to do the second thing....and found a nearby neurologist that I wanted to see. I had first appointment with him, on March 28, 2011, during which he said he wanted to see the MSLT data for himself since it looked borderline and I finally got something for my RLS and he wanted to run a bunch of other tests, such as MRI and then he would see me in about a month and after he get's back from vacation.

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12/31/10

  03:05:38 pm, by The Dreamer   , 1078 words  
Categories: Hardware, Software, Computer, Momitsu V880N, Networking, TiVo HD / Premiere / Elite, Storage

December 31st Migration Update

Last night I was lazy....and then I was reminded of the Narcolepsy, Hypersomnia and Fibromyalgia online chat at talkaboutsleep.com.

Don't really remember what I did and didn't do install-wise, spent most of my time shopping online to see what options there were to adding more USB ports to the back of Zen. Other than the 6 ports on the back, there are 3 on the front. Two with the media card readers and one behind the door on the front. But, those don't count for regular device usage, because I want to leave the one behind the door free for when I need to plug something in (most likely a USB stick -- I recently got a Kingston DataTraveler 200 in 128GB :cool:) And, the other two will likely get small dongles 'permanently' installed in them in the future....when I get around to the purchase of those items. Hopefully the two items will be small enough to fit there together. One is a small flash drive for ReadyBoost use, and the other is a BlueTooth dongle. The latter is for plans to get back in to video chatting, and to pair one of the many bluetooth headsets I have around that I haven't used yet.

Right now there's only one free USB port on the back...and by the end of this post, it'll be gone. After this post, I'll plan to order some USB hubs... Meanwhile, looks like the StarTech PEXUSB7LP 7-Port USB PCIe adapter is in my wishlist....or rather in my Amazon cart for a future Amazon prime moment. It'll give me 6 more ports on the back of Zen.

Oh yeah...I started the copying of more stuff from my old computer. I got up to (but not including) "Documents and Settings" on the C drive, and I skipped by 'bin' folder since that'll take some sorting through to update, etc. Plus there's probably missing dependencies that I haven't gotten to yet. This morning I continued to copy over more stuff. I got through drives E, F, and H. I had like 17 long running streams going when I switched to look at other migration work. Plus I had copied some directories with the intent to go back and clean them out. Some of the dialogs were giving an estimate of 1 day. Though as other streams finished, things sped up...both for that stream and the transfer speed over my network. Guess ole TARDIS couldn't push data fast enough into many copy sessions to keep the network as busy as it could be. (was only seeing ~50Mbps rather than the possible ~250Mbps).

Eventually, they did finish, so I cleaned things up. The big item that I wanted to move was so that I could move Momitsu Media Center over to Zen. Though I don't actually use my Momitsu V880N that much these days to stream video files....since I've been playing with open source tools to convert video files to TiVo format and getting those files on to a TiVo for viewing. But, perhaps I'll get around to actually doing this...I haven't yet.

Oh yeah, I tried setting up Skype last night. I recalled seeing it among the preinstalled stuff, so I tried that. It was like version 4.1, and it wouldn't connect. I tried disabling the firewall (I have it on at the moment, though I trust my home network and I trust that my routers keep the outside out....but for the moment it hasn't gotten in my way....) that didn't help. I signed into the Skype site to make sure that they were there and that I had remembered my account info correctly. I knew it was the same ID as my eBay account, but a different password... I had it installed on my other computer (Gumby), which has a webcam, etc. But, it had crashed one morning and I hadn't done anything since. As it turns out later that day the news of widespread Skype outages came out, and now that I've read the details on The Register... it fits... Anyways, I uninstalled the pre-installed version and installed the latest from skype.com and then I was able to sign in (with firewall enabled.)

ASIDE: One annoyance with this HP computer, the keyboard has a compressed middle key area....and I use things like Home, End, Del, PgUp, PgDn more often than I would've thought...so the change in layout is annoying. Guess I might have to see about getting a new USB keyboard for my new HP. :**:

:!: Did find something interesting while setting up webcam. My monitor (the debranded one from Woot, attached by HDMI) shows up as a speaker option. I knew it had speakers, but I didn't connect the speaker audio cable to it. Well, it can get it digitally via HDMI. And, the sound is pretty good...in some ways better than the Sony 2.1 speakers I'm using. But, I'll leave the Sony 2.1 speakers as my primary. Not sure what I'll use the discovered monitor sound for. :hmm:

So, when the copying finished. It was time to finish the configuration of GoodSync to synchronize or backup the various document directories on Zen to the other places. And, then I decided that I should get to configuring my new webcam... one of the items I picked up from staples.com to pad to free shipping....not really sure I needed a new webcam, though I probably wasn't going to move the HP webcam on Gumby...though another one wouldn't have been bad. I also have a collection of past webcams, though not likely to have Windows 7 drivers for them....even though a couple of them were really nice webcams....at least back in the day. But, the new webcams make the old ones pale in comparison now. I especially like with both, the HP one on Gumby and the Microsoft Lifecam HD5000 that I got for Zen, webcams have autofocus. The only thing neither offered is the ability to reduce depth of field or blur out my background. I forget what I did in the old days....perhaps it didn't matter because the apartment I was in was poorly lit (rooms either had no light fixture, just a switched outlet...or a very cheap low wattage bulb in the available fixture.)...so I had spot lighting from halogen torchieres. And, probably just went by CRT glow when I was online. Oh wait...the Microsoft Lifecam's software does have a background blur option....guess I'm saved. :wave:

Guess the thing to finish things off, so I can eat and do some online shopping is setup Messenger.....

08/05/10

  08:55:15 am, by The Dreamer   , 77 words  
Categories: General, Healthcare

Pepsi Refresh Update for Narcolepsy Research

Link: http://www.narcolepsynetwork.org/2010/08/pepsi-refresh-update/

If doing the same thing over and over again doesn't get you a different result, its time to try something different.

Stanford’s Center for Narcolepsy plans to submit a new grant application for narcolepsy research in the $50,000 category. In order to do so, the current proposal must finish in August with a rank of 103 or below so that it does not roll over to September. Therefore, please do not vote for the Narcolepsy ImmunoChip Project during August.

Now instead of subjecting some poor random forum to a long rambling thought, I will try to consolidate those things into this blog where they can be more easily ignored profess to be collected thoughts from my mind.

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