Tags: understanding

apnarcoplexic is born

Recently, godaddy suffered an out that disrupted numerous websites, including most of my sites. As an apology they offered a discount on renewals and purchasing of new services from them.

I contemplated extending a number of my domains, a few of which set to expire in the coming year. Though some of which I had intended to eventually have go away to make way for the replacement sites that I have been working on, or plan to work on. apnarcoplexic.com is one of those sites I've been thinking of working on.

Having figured out multidomain setup of b2evolution, with the construction of TheChens.WS
Having mastered multidomain setup of b2evolution, I decided that it would be easier to some day consolidate my multiple instances of b2evolution into this single instance. The other instance being one for Sleep Apnea and another for Narcolepsy. I found myself typing strange mashes of "sleep apnea narcolepsy cataplexy" trying to come up with a suitable domain name. I had initially thought of getting Narcoplexy, but realized that was too close to Narcaplexy, a blog that gave me the idea for what I might call this new blog. And, I didn't feel that narcoplexic was different enough. After numerous iterations, that were getting to be too long or too short, I settled on apnarcoplexic...since apnarcoplexy would still be too close to what I had started with. And, the previous apnearcoplexy idea, I felt put too much on apnea and not enough on narcolepsy/cataplexy.

So, the idea for building this site is born....the question then becomes on whether I'll launch the site before the upcoming Narcolepsy Network conference or after. So many projects to try to deal with now that I'm awake more.

"AWAKEN" Survey Findings

Link: http://investor.jazzpharma.com/phoenix.zhtml?c=210227&p=irol-newsArticle&ID=1704297

"AWAKEN" Survey Finds Only 50 Percent of Americans Understand Significant Health Impact of Narcolepsy, and Many Physicians Not Comfortable Diagnosing the Sleep Disorder

Despite serious nature of narcolepsy, Americans also misperceive its severity compared to other diseases of similar health concern or prevalence

Specific findings from the AWAKEN Survey reveal:

  • Seventy percent (70%) of adults have heard of narcolepsy – the lowest percentage among a range of diseases, including diabetes, sleep apnea, Alzheimer's, Parkinson's, multiple sclerosis, schizophrenia, restless leg syndrome and cystic fibrosis.
  • Of those adults who have heard of narcolepsy, only 7% consider themselves "very or extremely knowledgeable" about the disorder.
    Similarly, only a quarter (24%) of PCPs and nearly two-thirds (62%) of sleep specialists consider themselves "very or extremely knowledgeable" about narcolepsy compared to the other diseases.
  • Even sleep specialists may not fully recognize the symptoms of narcolepsy, with only a fifth (22%) identifying all five symptoms of the disease – excessive daytime sleepiness, cataplexy (sudden loss of muscle tone), sleep paralysis, hypnagogic hallucinations and disruptive nocturnal sleep.
  • Additionally, 22% of sleep specialists report they are "not very or not at all comfortable" diagnosing narcolepsy.
  • Among PCPs and sleep specialists who see three or more narcolepsy patients a month, narcolepsy is still one of the least discussed topics compared to other sleep-related disorders – higher only than sleep paralysis. Other sleep-related conditions surveyed include insomnia, obstructive sleep apnea, excessive daytime sleepiness, restless leg syndrome/periodic limb movement disorders and hypersomnia.

I went to a Narcolepsy Network Conference in Las Vegas

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"... :`( )

Pages: 1· 2· 3· 4· 5· 6· 7