Wednesday, June 18, 2008

Doing the Collapse

Nicole Jeray has narcolepsy and cataplexy, but she's still a professional golfer:

"I never thought that I had a problem until I started falling to the ground," Jeray said. "Whenever I had emotion, I would get paralyzed and fall to the ground. I mean, I was falling asleep for years before that, and I went to doctors, but nobody ever found anything wrong with me, so I just kept going on."
Fershizzle. Narcolepsy is pretty far down the list of diagnoses that doctors consider probable enough to test for. Common misdiagnoses include schizophrenia, epilepsy, depression, laziness, lack of character, and bad attitude -- not to say any of these is necessarily mutually exclusive of narcolepsy, but still.
Physicians and patients need to be more aware of narcolepsy, Jeray said.

"If every person in the world knew what narcolepsy was, it would be so easily diagnosed," she said. "But the problem is nobody knows. You watch the movie, and you think it's this girl falling asleep in her bowl of soup."
Movie? What movie? Sounds funny! It's funny until you're the one choking in the soup, unable to pull yourself out, reflecting on the absurdity of living this long only to die by drowning in a couple of inches of soup.

Cataplexy has never made me collapse into soup, but that's mostly because so little of my life has been spent hovering above soup in emotionally fraught circumstances. It's a combination of luck and skill, like so many things.


Laura said...

I find this fascinating. Is it so rare that doctors aren't able to diagnose it? What is the onset age usually? Does one feel it coming on? Am I asking too many questions?

Dale said...

Laura, no, you're not asking too many questions. It is rare and the symptoms for narcolepsy itself could indicate a number of other conditions, many more serious.

The onset age is usually the late teens. So it was for me. But it is not always that -- I've read of cases of people in their pre-teens with it.

Narcolepsy just feels like being perpetually sleepy. Cataplexy happens pretty quickly and there's little warning -- you get a strong emotional stimulus (usually, for me, when something is very frightening or very funny) and you lose the ability to control large groups of muscles. They just go limp, usually from the head/neck down.

My cataplexy instances aren't as severe as many I've read about. For some people, the entire body goes limp and may remain in that state for as long as a few minutes. Scary. And as I understand it, the severity also tracks closely with the degree of emotional stimulus it requires -- so that someone who loses most of his/her body in the attack probably also falls into that state with a less severe stimulus. Which truly sucks.

You're completely aware while this is happening, and the affected areas can still feel, you just can't "use" them.

For me, it is almost always limited to the head, neck, and shoulders (including the face). They just go limp and I have to hope I'm somewhere comfortable, because I'm going to sink wherever it is like a rag doll until I regain control. I don't think it's ever gone longer than about half a minute for me.

Laura said...

Jeez Dale, half a minute is a helluva long time for something like that to happen! Has it ever happened when you're running or driving? Does narcolepsy (or cataplexy [speaking of cats, how's Columbus? We haven't seen any updated pictures and I know he must be getting big.] ever appear in the animal kingdom?

Ok, I'll stop plying you with anymore questions. Thanks.

Dale said...

Laura, again, you're not bothering me. I do like to think I can do some small bit of promoting awareness about narcolepsy, even though it's one of numberless medical conditions that medical science can diagnose with great precision but not fix. I don't post about it very often because I prefer whining about other things, but it is a constant, everyday sort of pain-in-the-ass, I assure you of that.

That said, you might have noticed that narcolepsy is one of the labels on this precious, precious blog:

all my narcolepsy posts

As for narcolepsy in the animal kingdom, I've seen (hilarious) footage of dogs and goats collapsing from apparent narcolepsy. That's findable on youtube, and this
cataplexy video will probably lead you to more videos.

I don't know if the animals actually get narcolepsy, or if that's something else.

Other posts:

reflection a

reflection b

Running is a way I deal with narcolepsy -- it basically overpowers the constant pull of sleepiness, so that I actually feel awake while I'm running (and for not long thereafter).

I have come close to cataplexic fits while running, but never anything too interesting. I hope it's captured on youtube if it ever does happen because I'm sure it will be priceless watching me take that pratfall.

Suffice to say I have to be very careful about driving -- the dozing off is not good. The losing upper-body control is also not good. I drive as little as possible, and I'd happily drive less if I could avoid it. (I was against driving long before insane gas prices made it cool.)

Laura said...

Although I have noticed your newer narcolepsy posts (I started reading your blog back in February), I was so busy trying to keep up with your daily posts I took for granted it was something that rarely affects you. I'm trying to imagine how one sits through college lectures (and I know you couldn't sleep through Reed), or even how to read textbooks, which can be especially dry and poorly written, without dozing off. I can imagine it presented you with quite a challenge.

Thanks for enlightening me on the subject and for being so gracious and patient in answering my questions.

Also, next time you're driving around in the Northeastern part of the country, please give me a heads up. jk ;-)

Dale said...

De nada, Laura. Thanks for giving a crap about narcolepsy -- we atheistic narcoleptics with tragically short legs and bad hair have a tough time in this life.

Sitting through lectures and reading was indeed a challenge in college. Both continue to be a challenge. I compensate by doing a lot of walking around and other sorts of fidgeting, both physical and mental. It's a pain in the butt I wouldn't and don't wish on anyone.

I don't get to the NE very often -- in fact, once is my lifetime total so far -- but thanks!