Narcolepsy Book: Contents

Contents and Excerpts:

From the Introduction:

When I say narcolepsy is a funny disorder, I don’t mean that it is humorous. I mean it is a strange, odd, weird disorder. But to deny that its symptoms can sometimes result in hysterically laughable situations is akin to an ostrich sticking its head in the sand to keep from being seen. Since that trick obviously does not work, people with narcolepsy usually try to find more subtle ways to avoid the public eye.

From the Chapter on
Excessive Daytime Sleepiness :

Lack of mental alertness, short attention span and poor concentration are characteristics of a sleepy mind. The mind longs to submit to sleep but begrudgingly labors to continue functioning. Efficiency, including accuracy and speed, is lost in the compromise. Learning and retention are affected. A person who continues to function in this condition is vulnerable to making mistakes and causing accidents. But poor performance has nothing to do with innate intellectual ability, personal responsibility, ambition, interest or motivation.
It has to do with narcolepsy.

Expectation of Society: Most people who suffer from excessive daytime sleepiness are probably riddled with guilt. They feel guilt from within and guilt from without. They feel guilty if they can’t stay awake and often they are made to feel even more guilty when they nap.

From the Chapter on
My Experiences With Cataplexy

Then, there was the time we went to visit Cousin Barbara soon after she moved to Dallas. Even as a child I always looked forward to visiting with my cousins, and I felt some of the old excitement. We didn’t have long to wait as she answered our knock almost immediately. What to my wandering eyes should appear but Barbara in bright fuchsia booties standing on bright orange-colored shag carpet! Back in the days of yore, you just didn’t mix those two colors, and the sight of that unlikely color scheme struck me as being ridiculously funny. Before I could even say hello, I knew I was in for a big cataplectic! My husband, who was getting used to playing catcher, caught me from behind, dragged me into the living room, and stretched me out on the floor.
This was the first time Barbara and her sons had seen such an exhibition, and everyone crowded around for a better look. Lying there—fully conscious but unable to speak—I found myself staring eyeball to foot at her fuchsia booties on the orange carpet. The harder I laughed, the more incapacitated I became. I knew I had to get “this thing” under control, but it took all the effort I could muster to regain my composure. As soon as I could talk, I tried to explain what happened, but that only sent me into more gales of laughter and another attack. Later we all had a good laugh. Thereafter, whenever we visited Cousin Barbara in the apartment with the orange carpet, I always had a cataplectic attack—whether or not she was wearing her fuchsia booties! (This effect is called conditioned cataplexy.)

From the Chapter on
Consequences:

The symptoms and consequences of narcolepsy work together to form a blueprint for failure and subsequent lower self esteem if permitted to take its course. A comprehensive management program provides the best line of defense against these problems.

From the Chapter on
Management of Symptoms :

Too much sleep during the day is usually less of a problem than the amount of time usurped by sleepiness. Hours each day may be wasted in trying to fight off sleep. When the fog of sleepiness begins to roll in, the tendency is to struggle against it, stretching the sleep episode out over a much longer period of time.

Therapeutic Naps: Sleep specialists are now recommending that people with narcolepsy schedule naps just prior to their sleepy time(s) of day. Therapeutic napping should be as acceptable for narcoleptics as insulin is for diabetics.

Counseling: Narcolepsy is a physical, neurological disorder. It is not a mental illness. However, its symptoms sometimes produce psychological and emotional problems that require counseling. Psychosocial Support :Nothing has a more profound effect on a person with narcolepsy than the support provided by significant others such as family, close friends and co-workers. Whether this effect is positive or negative depends upon the understanding, acceptance and cooperation of these people.

From the Chapter on
Coping:

Narcolepsy is incurable. However, it is not hopeless. Drug treatment is helpful to a degree, but overall it can be rated as only moderately effective. Therefore, we narcoleptics must learn to live as best we can with this monster that threatens to gobble up our most productive waking hours. In large part, our success or failure depends on us. Coping skills for us equate to survival tactics under wartime conditions! Considering this fact, we must prepare ourselves with the best weapons at our disposal --- starting with knowledge.

	Contents and Excerpts:

	From the Introduction: When I say narcolepsy is a funny disorder, I don’t mean that it is humorous. I mean it is a strange, odd, weird disorder. But to deny that its symptoms can sometimes result in hysterically laughable situations is akin to an ostrich sticking its head in the sand to keep from being seen. Since that trick obviously does not work, people with narcolepsy usually try to find more subtle ways to avoid the public eye.
	From the Chapter on Excessive Daytime Sleepiness : Lack of mental alertness, short attention span and poor concentration are characteristics of a sleepy mind. The mind longs to submit to sleep but begrudgingly labors to continue functioning. Efficiency, including accuracy and speed, is lost in the compromise. Learning and retention are affected. A person who continues to function in this condition is vulnerable to making mistakes and causing accidents. But poor performance has nothing to do with innate intellectual ability, personal responsibility, ambition, interest or motivation. It has to do with narcolepsy. Expectation of Society: Most people who suffer from excessive daytime sleepiness are probably riddled with guilt. They feel guilt from within and guilt from without. They feel guilty if they can’t stay awake and often they are made to feel even more guilty when they nap.
	From the Chapter on My Experiences With Cataplexy Then, there was the time we went to visit Cousin Barbara soon after she moved to Dallas. Even as a child I always looked forward to visiting with my cousins, and I felt some of the old excitement. We didn’t have long to wait as she answered our knock almost immediately. What to my wandering eyes should appear but Barbara in bright fuchsia booties standing on bright orange-colored shag carpet! Back in the days of yore, you just didn’t mix those two colors, and the sight of that unlikely color scheme struck me as being ridiculously funny. Before I could even say hello, I knew I was in for a big cataplectic! My husband, who was getting used to playing catcher, caught me from behind, dragged me into the living room, and stretched me out on the floor. This was the first time Barbara and her sons had seen such an exhibition, and everyone crowded around for a better look. Lying there—fully conscious but unable to speak—I found myself staring eyeball to foot at her fuchsia booties on the orange carpet. The harder I laughed, the more incapacitated I became. I knew I had to get “this thing” under control, but it took all the effort I could muster to regain my composure. As soon as I could talk, I tried to explain what happened, but that only sent me into more gales of laughter and another attack. Later we all had a good laugh. Thereafter, whenever we visited Cousin Barbara in the apartment with the orange carpet, I always had a cataplectic attack—whether or not she was wearing her fuchsia booties! (This effect is called conditioned cataplexy.)
	From the Chapter on Consequences: The symptoms and consequences of narcolepsy work together to form a blueprint for failure and subsequent lower self esteem if permitted to take its course. A comprehensive management program provides the best line of defense against these problems.
	From the Chapter on Management of Symptoms : Too much sleep during the day is usually less of a problem than the amount of time usurped by sleepiness. Hours each day may be wasted in trying to fight off sleep. When the fog of sleepiness begins to roll in, the tendency is to struggle against it, stretching the sleep episode out over a much longer period of time. Therapeutic Naps: Sleep specialists are now recommending that people with narcolepsy schedule naps just prior to their sleepy time(s) of day. Therapeutic napping should be as acceptable for narcoleptics as insulin is for diabetics. Counseling: Narcolepsy is a physical, neurological disorder. It is not a mental illness. However, its symptoms sometimes produce psychological and emotional problems that require counseling. Psychosocial Support :Nothing has a more profound effect on a person with narcolepsy than the support provided by significant others such as family, close friends and co-workers. Whether this effect is positive or negative depends upon the understanding, acceptance and cooperation of these people.
	From the Chapter on Coping: Narcolepsy is incurable. However, it is not hopeless. Drug treatment is helpful to a degree, but overall it can be rated as only moderately effective. Therefore, we narcoleptics must learn to live as best we can with this monster that threatens to gobble up our most productive waking hours. In large part, our success or failure depends on us. Coping skills for us equate to survival tactics under wartime conditions! Considering this fact, we must prepare ourselves with the best weapons at our disposal --- starting with knowledge.

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