Comments on: The power of Narcolepsy http://www.stephenjburke.com/2009/10/the-power-of-narcolepsy/ the exploits of a secret change agent Tue, 08 Feb 2011 02:32:48 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Melissa C. http://www.stephenjburke.com/2009/10/the-power-of-narcolepsy/comment-page-1/#comment-312 Melissa C. Thu, 30 Sep 2010 06:03:53 +0000 http://www.stephenjburke.com/?p=470#comment-312 Wonder(narcoleptic)twins power, activate! You've pretty just described me and my narcolepsy to a 'T'. For most of my life I was was accused of being lazy, which, as we narcoleptic folks know is not the case. On the job I'd always put in 5 times more effort than everyone else, because I didn't want to get fired (which happened a couple times). Same thing in college. I've yet to complete more than a semester here and there. The funny thing about all of this, I was actually in the Army. Jo ined right after high school. Lord only knows how I managed -barely- and it's still a huge mystery to me. I was constantly in trouble for falling asleep/passing out. Now, at 35, I receive social security disability because of the severity of my narcolepsy. Like you, I reach REM sleep really fast (2 minutes). My friends think its crazy, but for me it seems normal, it's the way it's always been. When I had my overnight sleep study, screening for obstructive sleep apnea, that's when they discovered I have narcolepsy. I do have a CPAP machine, but it isn't the least bit effective due to breathing difficulties. I decided to see an ENT about it. As it turns out, not only are my tonsils too large, I also have nasal collapse, which means when I inhale, the sides of my nose 'cave' in, not allowing for proper oxygen intake. So come October 11th, I'll be having a surgical procedure: removing tonsil and uvula, nasal surgery, and having my tongue pulled forward (something involving the lower jaw and a titanium screw. I'm not looking forward to it, but if it helps me, it'll be worth it. Wonder(narcoleptic)twins power, activate! You’ve pretty just described me and my narcolepsy to a ‘T’. For most of my life I was was accused of being lazy, which, as we narcoleptic folks know is not the case. On the job I’d always put in 5 times more effort than everyone else, because I didn’t want to get fired (which happened a couple times). Same thing in college. I’ve yet to complete more than a semester here and there. The funny thing about all of this, I was actually in the Army. Jo ined right after high school. Lord only knows how I managed -barely- and it’s still a huge mystery to me. I was constantly in trouble for falling asleep/passing out.

Now, at 35, I receive social security disability because of the severity of my narcolepsy. Like you, I reach REM sleep really fast (2 minutes). My friends think its crazy, but for me it seems normal, it’s the way it’s always been.

When I had my overnight sleep study, screening for obstructive sleep apnea, that’s when they discovered I have narcolepsy. I do have a CPAP machine, but it isn’t the least bit effective due to breathing difficulties. I decided to see an ENT about it. As it turns out, not only are my tonsils too large, I also have nasal collapse, which means when I inhale, the sides of my nose ‘cave’ in, not allowing for proper oxygen intake.

So come October 11th, I’ll be having a surgical procedure: removing tonsil and uvula, nasal surgery, and having my tongue pulled forward (something involving the lower jaw and a titanium screw. I’m not looking forward to it, but if it helps me, it’ll be worth it.

]]> By: Rae http://www.stephenjburke.com/2009/10/the-power-of-narcolepsy/comment-page-1/#comment-293 Rae Sun, 08 Aug 2010 02:09:08 +0000 http://www.stephenjburke.com/?p=470#comment-293 Ack! This is me to a T! I was just diagnosed yesterday, after 16+ years of feeling like a lazy schmuck! I also had the struggles in corporate america, the cataplexy, the frequent, strong, transient urges to sleep. Keep in touch, we have much to learn! I have been ruminating on the fact that it is indeed a power, not a disease, if managed and viewed positively. Being able to move so fluidly in and out of REM sleep really gives me an edge with my artwork! Ack! This is me to a T! I was just diagnosed yesterday, after 16+ years of feeling like a lazy schmuck! I also had the struggles in corporate america, the cataplexy, the frequent, strong, transient urges to sleep. Keep in touch, we have much to learn! I have been ruminating on the fact that it is indeed a power, not a disease, if managed and viewed positively. Being able to move so fluidly in and out of REM sleep really gives me an edge with my artwork!

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