The Voices Of Narcolepsy

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From The New York Times newspaper

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Today’s Patient Voices featurefocuses on narcolepsy, a neurological disorder that can lead to sudden“sleep attacks” during any type of activity at any time of the day.

But as you’ll learn listening to the stories in Patient Voices: Narcolepsy,created by Web producer Karen Barrow and contributor Sarah Arnquist,having the disorder isn’t just about nodding off occasionally.

“I’ve never really known what it’s like to be well rested or have agood night’s sleep,” says Shauna Laurel Jones, 29, of Alexandria, Va.“Waking up in the morning is extremely difficult for me. During thetimes I’ve held a 9 to 5 job, it was just hell waking up in themorning…. The hardest thing about the condition for me is not havingenough energy to be motivated all the time to do the things I want todo.”

Heather Smith, 34, of Seattle says she’s had a variety of responses when people find out she has narcolepsy.

“It’s not like it is in the movies — I’ve never fallen asleep in abowl of soup,” she says. “I’ve had people react in all sorts ofdifferent ways. Some people don’t think it’s a big deal. Oneperson…asked if he found me asleep if he could poke me with a stick.I’ve had people respond, ‘That’s really cool!’ or ‘That’s a freakshow!’ ”

Paul Beals, 62, of Ester, Ala., said the disorder can affect how he interacts with people.

“It can be quite excruciating,” he says. “The need to sleep is sogreat, it takes a tremendous amount of will to overcome it…. In statesof high emotion, sometimes I will have an attack where I become verysleepy. In the heat of discussion, I’ll sometimes start yawninguncontrollably, my memory starts to fail me. I’ve learned to withdrawand come back when I’m fresher.”

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I thought they were really good, as well. Everything they said sounded like it could have been coming from me. Amazing, really. For twenty years I thought I was alone in this.

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