NARCOLEPSY

NARCOLEPSY
A FUNNY DISORDER THAT'S NO LAUGHING MATTER
Marguerite Jones Utley
Marguerite Jones Utley, Publisher, 1995
P.O. Box 1923, DeSoto TX 75123-1923
http://www.obdiv.com/narco/index.htm
166 pages, paperback, $12
ISBN 0-9643328-0-9

Reviewed by Lynne Lamberg

"When I say narcolepsy is a funny disorder, I don't mean that it is humorous," writes Marguerite Jones Utley. "I mean it is a strange, odd, weird disorder. But to deny that its symptoms can sometimes result in hysterically laughable situations," she continues, "is akin to an ostrich sticking its head in the sand to keep from being seen." Utley employs humor as a coping strategy, giving her, she says, strength to cope with an otherwise serious and often disabling illness. Readers with narcolepsy, as well as other chronic disorders, may profit from her unpretentious example.

Persons with narcolepsy often feel relentlessly sleepy, regardless of how much sleep they have had. Sleep may overwhelm them at inappropriate times, while they are in a conversation or driving, for example. "Whenever I get in the car as a passenger," Utley relates, "the first place I usually go is to sleep."

Persons with narcolepsy also experience bouts of sudden loss of muscle control, known as cataplexy. These usually strike during the expression of strong emotions, such as laughter, anger, or surprise. A joke might cause someone with narcolepsy to topple over. Her husband, Utley said, had to get used to "playing catcher."

Those with narcolepsy also may experience bizarre hallucinations in waking hours and a temporary muscle paralysis just as they are falling asleep or waking up. All of these symptoms represent the intrusion of the REM state of sleep into waking hours. Sleep specialists describe the problem as one of faulty control of sleep and wakefulness in which events normally restricted to sleep occur when the person is awake.

Narcolepsy affects an estimated 150,000-250,000 persons in the United States, Utley says. Most do not yet know they have it. Persons with narcolepsy typically report experiencing symptoms for a decade or longer and seeing five or more physicians before receiving a diagnosis.

The disorder, she points out, can limit education, causing those with narcolepsy to miss important information and teachers to view them as lazy or stupid. Sleeping on the job is a sure path to failure. Trying to protect oneself from cataplexy by blocking emotions hampers personal relationships. While narcolepsy cannot be cured, Utley notes, it often can be controlled with stimulants and other drugs, and coping strategies such as scheduled naps.

Utley includes checklists for the symptoms and consequences of narcolepsy, and guides readers through the diagnostic process. While she uses anecdotes from her own life to particularize each topic, she is careful to point out that others may have different experiences. A member of the Board of Trustees of the Narcolepsy Network, Inc., Utley makes a strong case for joining a support group and advocating for legislation to protect patient rights and provide funding for further research.

She includes sources of information and help, and a brief list of additional reading. An index would be a useful addition to the next edition of this warm and sympathetic book.