FORSYTH - If there were an ideal sport for someone with narcolepsy, it would be golf, said LPGA golfer Nicole Jeray. The sandy-haired 37-year-old from Berwyn, who played in the recent Michelob Ultra Duramed Futures Players Championship at Hickory Point Golf Club, was diagnosed with the sleep disorder in 1996.
"If I played tennis, or volleyball or even fishing, I couldn't have done it," she said.
Jeray learned to harness the focus and emotional control involved in her sport to deal with the cataplexy, periods of muscle weakness and paralysis, associated with her narcolepsy. Because their bodies are unable to control sleeping and waking cycles, narcoleptics experience periods of sleepiness during the day and sometimes cataplexy, vivid hallucinations at night and paralysis during sleep, according to the National Institute of Neurological Disorders and Stroke.
Jeray first attributed her sleepiness to a busy lifestyle and the demands of her athletic schedule.
"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."
Jeray started playing golf at the age of 11, turned professional right out of college in 1993 and got her LPGA Tour card in 1994.
"I fell asleep all through college," Jeray said. "I fell asleep driving to golf tournaments, I remember, and I thought it was the exhaust system on the car."
She fell asleep everywhere - driving, in movie theaters. Jeray had a multitude of tests, but no one could diagnose her.
"I was lucky to find a doctor that actually cared about me, and I think it was because I was an LPGA Tour player that he did some research and called me the next day and said, 'You know, are you really sleepy?'-;"
Jeray had not heard of narcolepsy before her diagnosis. Initially, she wanted to treat the part of her disorder she believed to be the most incapacitating - the cataplexy that caused her to fall to the floor, have double vision and drop whatever she was holding.
"I was just worried about being able to hit a golf ball without falling over from the cataplexy," Jeray said.
For three years, she treated only that facet of her condition. In the meantime, Jeray was trying all kinds of tricks to stay awake.
"I would like walk backward to try to stay awake or jog a little bit on the golf course to try to stay awake," she said. "And it was so hard. My caddy used to put ice cubes down my back or pinch me. I mean sometimes you're just so tired and nothing works."
Jeray said she doesn't know how she functioned during that time.
"I won this tournament here in 1998, and I mean it's just a big blur because I was so sleepy," Jeray said. "I was awake on the course, but I mean, it was a huge effort to get me to be able to play as good as I did."
Jeray also won the tournament at Hickory Point in 2000.
In 1999, her life changed completely when she attended a Narcolepsy Network conference and met other people with narcolepsy. Now she makes a point of going to the conferences every year to network and learn about new and different treatments and medications.
Although she still deals with sleepiness and cataplexy, Jeray said she's found a good balance of medications to treat her symptoms.
For the past year and a half, Jeray has been taking a medication that treats her nighttime sleep rather than treating daytime sleepiness with stimulants. She also focuses on habits that reduce her sleepiness such as staying hydrated, avoiding carbohydrates and eating small meals throughout the day.
Now she can play with her nieces and nephews, drive long distances, sit through movies and focus on being the best golfer she can be. She still experiences some cataplexy but has years of experience handling it.
"You learn to fall gracefully and in the right positions," Jeray said. "After you fall so many times, you know how to fall."
And her boyfriend, Jody Keepers, is good at recognizing when she's about to fall, Jeray said.
"I usually stand here like this and pray someone comes to me," she said, balancing with her arms at her sides.
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."
Jeray has met many narcoleptics who've been misdiagnosed with schizophrenia, epilepsy and depression. She encouraged people to take ownership of their own health care and often fields e-mails from people who want to know more about narcolepsy and related sleep disorders through her Web site, www.nicolejeray.net.
"It's taken me years, and, you know, I just don't go to one doctor and do what he says," Jeray said. "I'm active in taking care of myself, and I want to get better. And I recommend that for other narcoleptics."
Annie Getsinger can be reached at agetsinger@herald-review.com or 421-6968.
Posted in Lifestyles on Wednesday, June 18, 2008 12:00 am Updated: 2:26 pm. | Tags: Futures
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