Category: "Awareness"

Narcolepsy Awareness Week is December 1 - 7

Narcolepsy Awareness Week is sponsored by the American Sleep Association. From December 1 - 7, the ASA and its affiliates will be increasing awareness about narcolepsy.

The primary objective of this campaign is to improve the nation's knowledge about the signs, symptoms, complications, diagnosis, and treatment options of narcolepsy.

SYMPTOMS of NARCOLEPSY

  • Excessive daytime sleepiness
  • Hallucinations when going to sleep or waking up
  • Feeling paralyzed when going to sleep or waking up
  • Muscle weakness associated with intense emotions


COMPLICATIONS of NARCOLEPSY

  • Increased Risk of Motor Vehicle Accidents
  • Difficulty achieving life goals secondary to daytime sleepiness
  • Decreased Mental Performance
  • Find Out More About Narcolepsy

Another "Swinging for Sleep" campaign has ended....

Link: http://www.nicolejeray.com/swinging-for-sleep/

I was sure I had blogged somewhere that I had made my pledge this year....about how I had only pledged $0.50 per birdie last year....so for the 90 birdies, my donation was $45 to Narcolepsy Network. And, that I joked that I should go with $1 per birdie...though she had said at the conference that she's planning to 'break 100' next year....

Yeah...I don't think I could 'break 100' in golf....

Anyways...when the campaign started up, I jumped in with a pledge of $1 per birdie this year....of course that was before, things all started going bad health wise this year...and to where I ran up a lot of medical bills in a short amount of time (before I would have HSA money to cover, I could claim now...but since the max I could put it was $3100, I want it for next year when my deductible will be $2500. Where it may just be that I hit it with the single fill of Xyrem in the new year....)

At least it led me to getting a diagnosis of Narcolepsy w/Cataplexy.

Which makes it good to support the two causes "Wake Up Narcolepsy" and The "Narcolepsy Network"...which as Nicole says:

Wake Up Narcolepsy is committed to finding a cure for Narcolepsy and The Narcolepsy Network helped me get my life on track after years of struggling with Narcolepsy.

Wouldn't say my life is back on track yet...but its coming around. So, I guess I'm more of a "Narcolepsy Network" supporter....hadn't heard of "Wake Up Narcolepsy" until around the conference last year....

So, this year it looks like the money is going to Wake Up Narcolepsy...so I went and made my donation of $121. It'll slot in with a smattering of charges that are Black Friday/Cyber Monday &#59;D

Oh yeah...I was going to see about ordering some more cpap stuff....wonder which sites are having the good Black Friday/Cyber Monday deals on the cpap supplies I need? :hmm:

Sleep Apnea Awareness Week - October 1-7

Link: http://www.sleepassociation.org/index.php?p=sleepapneaawareness

Sleep Apnea Awareness Week is sponsored by the American Sleep Association. From October 1 - October 7, the ASA and its affiliates will be increasing awareness about the dangers of untreated sleep apnea.

The primary objective of this campaign is to improve the nation's knowledge about the symptoms, complications, diagnosis, and treatments of sleep apnea.

SYMPTOMS of SLEEP APNEA

  • Snoring
  • Daytime Sleepiness
  • Nighttime Gasping, Choking Sensation
  • Morning Headaches
  • Morning Sore throat
  • Behavioral Problems in Children

COMPLICATIONS of SLEEP APNEA

  • Increased Risk of Motor Vehicle Accidents
  • Increased Risk of Heart Attack
  • Increased Risk of Stroke
  • Decreased Physical Performance
  • Decreased Mental Performance
  • Increased Risk of Deadly Heart Rhythms
  • Increased Difficulty Managing Diabetes
  • Increased Difficulty Managing Blood Pressure

Find out more about Sleep Apnea

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 &#59;D

Full story »

Restless Leg Syndrome Awareness Week

Link: http://www.sleepassociation.org/index.php?p=rlsawarenessweek

According to the American Sleep Association, this week February 1-7 is Restless Leg Syndrome Awareness week. Or, Willis-Ekbom Disease...which is the corrected name of the condition.

OTOH, according to the RLS Foundation...the awareness week is September 16-22?

Anyways....I've probably had Willis-Ekbom for years....I remember the weird something crawling under my skin sensations back into childhood, and I recall being told that I was a kicker in bed. I used to tuck the sheets in extra tight all around me, in an effort to control things....these days I don't do that anymore, but I need to have the weight of my comforter on top of me to sleep.

I also had a peculiar problem where the area around my feet would wear out faster on my sheets than anywhere else. One year, I put off checking for a long time, and eventually wore through the heated mattress pad underneath. That was a cold winter, with no working mattress pad.

Was annoying, because it is one of the few mattress pads out there that doesn't have the cord connection on the top surface of the pad...where my constant moving feet are going to keep bumping into it all night.

Then last year, I saw a new doctor, and before I said anything, he asked if I was on anything for my RLS. Now I'm on Ropinirole (Requip). I'm using a heated mattress pad that has the cord connection point on the surface, but it doesn't bother me as much and I things seem better. Though sometimes things still do shift. Also, the dose is mainly to treat the condition at night, I still have the sensations in the day time....