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Paula Zahn Now
Encore Presentation: Mysteries of the Mind
Aired June 09, 2006 - 20:00 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
PAULA ZAHN, CNN ANCHOR: Hi, everybody, glad to have you with us tonight. A very special hour for you on some of the most fascinating mysteries of the mind. But first, here's what's happening at this moment on this Friday night.
Outspoken Iraq war critic Congressman John Murtha says he will run for majority leader if the Democrats recapture the House in November. The decorated war vet says U.S. troop presence in Iraq is a magnet for terrorists.
The military says Abu Musab al-Zarqawi actually survived two 500- pound bombs that destroyed his safe house yesterday and actually tried to get off a stretch, but then died a short time later.
And the military wing of Hamas has ended a cease-fire with Israel after Israeli shells killed seven Palestinians at a Gaza beach, as well as five others in separate attacks.
(BEGIN VIDEOTAPE)
ZAHN (voice-over): Tonight, a journey deep inside the most fascinating "Mysteries of the Mind."
Young people living with Tourette's.
UNIDENTIFIED MALE: It is involuntary. We can't help it.
ZAHN: Locked in a battle with bodies they can't control.
Divided minds -- the amazing story of twin sisters. One hears voices.
PAMELA SPIRO WAGNER, SISTER: All logic is suspended. And when they say, burn, baby, burn, and then they start telling me that I have to kill myself.
ZAHN: Her sister is the exact opposite.
PAMELA SPIRO WAGNER, SISTER: I'm a psychiatrist. I'm her twin sister. And I can't stop her.
ZAHN: Separated by schizophrenia.
And under a spell -- what makes an otherwise normal teenager lapse into a deep sleep for weeks at a time?
UNIDENTIFIED MALE: Do you remember the last time you woke up? UNIDENTIFIED MALE: I just want to sleep.
LOERRY HALLER, MOTHER: He's going through so much agony right now. He has been sleeping for 10 days.
ZAHN: The mysterious disorder that makes victims sleep their lives away -- all that and more of the most puzzling "Mysteries of the Mind."
(END VIDEOTAPE)
ZAHN: The first mystery we're going to explore tonight focuses on some remarkable children. There are thousands like them in the U.S. And each one carries an astounding burden. They struggle with a disorder you might have heard of, Tourette's syndrome, which causes body symptoms they simply can't control. These kids are incredibly courageous.
And their story is the first of tonight's "Mysteries of the Mind."
(BEGIN VIDEOTAPE)
(BEGIN VIDEOTAPE)
PAULA ZAHN, CNN ANCHOR (voice-over): Uncontrollable grunts, bizarre outbursts, seemingly violent tics.
UNIDENTIFIED FEMALE: Mom!
ZAHN: Tens of thousands of kids across America suffer from them daily. The neurological disorder known as Tourette's syndrome, which you might have thought of as an adult's disease, can strike when kids are just toddlers.
UNIDENTIFIED MALE: They like come out all the time.
ZAHN: Colin (ph) has had Tourette's for as long as he can remember.
COLIN, SUFFERER OF TOURETTE'S SYNDROME: Actually, when I was born, I came out and I had my head shaking somehow. I don't know. That's what I was told, is that I was brought up, my whole life I was shaking my head.
ZAHN: Home video shows Colin shaking his head as he takes some of his first steps. Then at age 3, as he opens presents. By the time Colin is 6, he's shaking his head and coughing -- classic indicators of Tourette's, and tics he still has today at age 13, tics he's likely to have for the rest of his life.
Eleven-year-old William (ph) knows how Colin feels. He also has Tourette's. They both met with me to honestly talk about what it's like to grow up with this disorder.
(on camera): So, Colin, how old were you when you realized that your head was shaking like that?
COLIN: I guess I always realized it. It's just -- it was always just so natural for me that sometimes I can't even tell if I am or am not doing it, if I am at the most comfortable of comfortable situations.
ZAHN: You are pretty comfortable right now on a beanbag chair. Do you know that you are shaking your head?
COLIN: Yes.
ZAHN: Is it embarrassing at times?
COLIN: It's like, you know, those dreams where you have a dream where you are like walking into school and you notice, oh, my God, I'm in my underwear. When you are a new kid at school, it's almost exactly what it's like for most people with Tourette's syndrome.
ZAHN (voice-over): Tourette's generally appears in kids sometime between the ages of 2 and 15. Boys are three to four times more likely to have the disorder.
COLIN: It is involuntary. We can't help it.
ZAHN: That sudden urge to do or say certain things can be overwhelming.
COLIN: One of my big tics is like breathing through my nose, but like really quick and up my nose really quick. Or that kind of stuff. And I don't -- I don't know. And blinking. I blink pretty fast.
ZAHN: Dr. Barbara Coffey is the director of the Institute for the Study of Tourette's and Movement Disorders. She says tics can sometimes be partially controlled. But in the long run, it's uncomfortable for kids not to let them out.
DR. BARBARA COFFEY, DIRECTOR, INSTITUTE FOR THE STUDY OF TOURETTE'S AND MOVEMENT DISORDERS: If you think of it like a sneeze, when you have a sneeze, the feeling builds up before you sneeze and it goes away once you actually sneeze and release it. It's very similar to the tic, and many kids experience a very uncomfortable feeling of tension or pressure or discomfort inside of them before they have the tic.
ZAHN: In this video, you can actually see a young girl struggling with her Tourette's. After holding it in all day, she finally lets out her tics.
Tragically, there's no cure for Tourette's syndrome. Although as some kids get older, it does become easier to control.
COFFEY: In general, it's not necessarily a lifetime of the same degree of symptoms. In general, the symptoms improve in many, many children.
ZAHN: But adolescence, already a tough time for many, can be especially difficult for kids like Colin and William.
(on camera): Colin, what do you think is the hardest thing about having Tourette's?
COLIN: It would have to be school, substitutes, that whole area.
ZAHN: And how do they deal with you?
COLIN: Just people that don't know. There are some people that don't get dealt the card, hey, this kid has Tourette's syndrome. It's basically you are just sitting there and you're shaking your head, and eventually you're going to be ticking and coughing and coughing and ticking, and shaking your head and coughing, and she's just going to be like, what is this? You go outside. So, I usually do go outside and then...
ZAHN: So, no one has even bothered to explain to the substitute that you have Tourette's?
COLIN: No. No.
ZAHN (voice-over): It's that kind of ignorance and insensitivity test that these young teens want to end. That is why both William and Colin, along with 21 other kids, participated in the new HBO documentary, I have Tourette's, but Tourette's doesn't have me.
A film showing the daily struggles of thousands of kids dealing with this heartbreaking syndrome. Every minute of the day, fighting to control the uncontrollable.
WILLIAM, SUFFERER OF TOURETTE'S SYNDROME: I want everyone who hears me right now to understand that it is not contagious. It is not a mental disability. Everyone who has Tourette's is the same as you, or anyone really.
(END VIDEOTAPE)
ZAHN: What a wise young man.
The complete Tourette's film is a production of HBO Family Documentaries.
Coming up next, another baffling medical condition.
(BEGIN VIDEO CLIP)
MARIBEL RIVERA, SUFFERER OF PRADER-WILLI SYNDROME: No! Wait! Wait!
(END VIDEO CLIP)
ZAHN: So, what causes craving so strong, some people just can't stop eating in?
That and more, as our look at "Mysteries of the Mind" continues.
(COMMERCIAL BREAK)
ZAHN: Welcome back.
We continue now with our look at "Mysteries of the Mind."
Imagine spending every moment of your life feeling hungry and stuffing yourself, yet never, ever feeling full. Well, it sounds incredible, but there are thousands of people who suffer this way because of a baffling syndrome. You're about to meet two of them.
Elizabeth Cohen has their stories.
(BEGIN VIDEOTAPE)
MARIBEL RIVERA, SUFFERER OF PRADER-WILLI SYNDROME: No! Wait! Wait! Wait!
ELIZABETH COHEN, CNN MEDICAL CORRESPONDENT (voice-over): The sound of the local ice cream truck makes most children smile, but that sound is torture for Maribel Rivera. She's desperate for ice cream, or anything else to eat, tormented by a constant hunger that never, ever goes away.
And it's not all in her head. Scientists have discovered that people like Maribel are missing a piece of genetic material. They're mentally challenged, and they're always hungry.
Bronnie Maurer's son, Andy, has always lived with that non- stop hunger since he was a child.
BRONNIE MAURER, MOTHER OF ANDY MAURER: When you think I have to get something to eat, they're never without that feeling.
COHEN (on camera): What is it like being hungry all the time?
ANDY MAURER, SUFFERER OF PRADER-WILLI SYNDROME: It's terrible. I don't know anything else that's so embarrassing.
COHEN: Some people might think, why can't you just control yourself? If I see a donut, I just don't eat it. Why can't you do that?
A. MAURER: Can't, because it's -- it's there. It's (INAUDIBLE) the need, the urge to get the food.
COHEN (voice-over): After 46 years, he's finally begun to learn how to live with that urge.
A. MAURER: Most of the time, I can control it.
COHEN: But Maribel's long, difficult journey might never reach that point. Her mother, Mercedes Rivera, had two normal pregnancies, gave birth to two healthy children, but the third child was different. When Maribel was born, she didn't cry and she didn't nurse. Doctors struggled with what was wrong. UNIDENTIFIED FEMALE: And I said, well, what is wrong with my daughter? And they said, nobody has really said anything to me. He said, well, your daughter is retarded. And that's how she said it, like, just blunt like that.
COHEN: All signs pointed to a genetic disorder called Prader- Willi Syndrome, that affects one in 15,000 people.
Dr. Suzanne Cassidy is a medical geneticist and a professor of pediatrics at the University of California S an Francisco.
DR. SUZANNE CASSIDY, MEDICAL GENETICIST: Individuals with Prader-Willi Syndrome have a period of what we call failure to thrive. They tend to have very poor growth, first in weight and then in length, for a number of weeks or months in infancy. And some time between 1 and 6 years of age, it seems all of a sudden, one day, the child starts eating whatever they can get their hands on.
COHEN: Maribel was a classic case. She had a low I.Q. She was late to walk and even later to talk. She was shorter than average. And from the age of 5, Maribel gained weight fast.
UNIDENTIFIED FEMALE: She was eating more than usual, or asking for more, or she just probably had a meal and she wanted to eat again.
COHEN: The Riveras had to change the way they lived to keep Maribel from eating herself to death.
UNIDENTIFIED FEMALE: Sometimes, we even had to, like, rush ourselves to eat, because if we just kind of do it slow, she'll start looking at everybody's plate, to make sure that nobody was looking and she'll steal from other family members' plate.
COHEN: Food had to be locked up, and the Riveras had to put a fence around their house to keep Maribel from getting out and finding food on her own. But it didn't always work.
RIVERA: Will you buy me a hot dog, please?
COHEN: Maribel's older sister made a documentary about her 24- year struggle with Prader-Willi Syndrome. She caught this startling moment.
RIVERA: Will you buy me a one hot dog, please? I'm so hungry.
UNIDENTIFIED FEMALE: Where is your parents?
RIVERA: I don't have no parents. Please.
UNIDENTIFIED FEMALE: OK.
RIVERA: Please? Thank you. Thank you. I want ketchup.
COHEN: By the time Maribel was 23, she stood 4'10" and weighed 235 pounds. She had trouble breathing and was diagnosed with diabetes. Her parents checked her into a hospital. UNIDENTIFIED FEMALE: When she first was admitted into the hospital, she was stealing from patients. She was stealing from even the trash.
COHEN: In the hospital, she gained 20 pounds. Her parents brought her home and put her on a strict diet. That sparked a rage.
UNIDENTIFIED FEMALE: It was something that I couldn't even handle. And in fact, my husband had to actually take over, because of the strength and her tantrums and her -- became really strong and violent that I was not able to handle her. As she got older, it got worse.
COHEN: There's no cure for Prader-Willi Syndrome. The Riveras realized that the only place that could regulate Maribel's disorder was a group home, where she could be watched around the clock.
CASSIDY: When such individuals get put into a group home for adults, especially with Prader-Willi Syndrome, this is when I have seen the most amazing weight loss and increase in fitness.
The food is locked up. It's not available between meals and snacks. Everybody in the home is on a diet, not just that one person.
COHEN: It worked for Andy Maurer. He lost 80 pounds when he moved into this group home. He got a job at a recycling plant, spent a lot of time riding horses, and even started dating.
(on camera): I hear you have a girlfriend.
A. MAURER: Yes, I have maybe a couple. Only way I go on dates is if I give my mom my money so I won't go get -- so I won't go out and get food.
COHEN: Why couldn't you just keep Andy at home?
B. MAURER: Because who would care for him when we're gone? It was very difficult, but I knew it was the right thing to do.
COHEN: And how is that living with other people with Prader- Willi?
A. MAURER: I like it. Because I need people around me. Because I need the companionship. It's like -- it's like our house, it's -- we're a -- staff included, we're a family. (INAUDIBLE) have to keep busy so their minds won't be on food all the time.
COHEN: Tell me about what you've done that you're most proud of.
A. MAURER: I'm in horseback riding and I got -- won first places several times, which made me eligible to go to the International World Games in Dublin, Ireland.
COHEN (voice-over): Andy won a bronze medal at those Special Olympics. But, with all of his achievements, Andy still has a desperate urge for food 24 hours a day. (LAUGHTER)
COHEN: Maribel's family knows that living in a group home won't take away her hunger, but they also know it's the only way to control her behavior.
COHEN: The adjustment to this new place will be difficult, but the first signs are good.
RIVERA: I think I'm going to stay here.
COHEN: Leaving Maribel behind will be hard for her family, but they know that this decision could save her life.
Elizabeth Cohen, CNN, Columbia, South Carolina.
(END VIDEOTAPE)
ZAHN: And it's worth mentioning there is a lot of hope. Andy just recently won another gold medal in horseback riding at the South Carolina Special Olympics. And he now is at his goal weight of about 140 pounds. Maribel is doing well at the group home, we are told, in Wisconsin, where she's lost more than 30 pounds.
Coming up next, a truly amazing story of identical twins whose lives are complete opposites, yet they try very hard to connect. .
(BEGIN VIDEO CLIP)
SPIRO: She doesn't really understand what she means to me.
KYRA PHILLIPS, CNN CORRESPONDENT: Can you imagine life without your sister, Pam?
WAGNER: No.
(END VIDEO CLIP)
ZAHN: One is a psychiatrist. The other suffers from schizophrenia.
Stay with us for more "Mysteries of the Mind."
(COMMERCIAL BREAK)
ZAHN: And welcome back to our special on the "Mysteries of the Mind."
Now, I don't know anyone who is not fascinated by twins. To see two people who are just so alike is a pretty amazing thing. But they can also be vastly different. The twins you're about to meet were identical in every way, until one started to hear voices. It was a sign of schizophrenia, a severe disorder that affects more than two million Americans.
Here's Kyra Phillips. (BEGIN VIDEOTAPE)
PHILLIPS (voice-over): Two beautiful babies, twins, Carolyn and Pamela, so alike that it's almost impossible to tell them apart.
As the twins began to walk and talk, the comparisons began.
CAROLYN SPIRO, SISTER: I was seen as the fragile, second twin. Pammy was seen as the strong, smart twin, who didn't have problems.
PHILLIPS: And yet it was Pamela, who everyone called Pammy, the strong, smart twin, whose life began to unravel when the girls were in the sixth grade. She remembers the day she first heard the voices -- November 22, 1963, the day President John F. Kennedy was killed.
PAMELA SPIRO WAGNER, SISTER: It was the first time I heard voices.
PHILLIPS (on camera): What did the voices say to you? WAGNER:
They'd say things like kill him, kill her, kill him, kill her, kill him, kill her. Will you kill her? Will you kill her?
PHILLIPS: Did you tell anybody?
WAGNER: No, I didn't.
PHILLIPS: Carolyn, when did you realize...
SPIRO: That something was wrong?
PHILLIPS: ... that something was wrong?
SPIRO: Seventh grade. She didn't shower. She didn't know how to dress. She didn't do anything that all the other seventh grade kids seemed to know how to do.
PHILLIPS (voice-over): Pammy struggled for years to ignore the voices. No one knew that she was suffering from schizophrenia, and she continued to excel in high school.
She was accepted to Brown University, as was her twin, Carolyn. But this is where the twins' lives took dramatically different paths.
Carolyn went on to graduate from Harvard Medical School and became a psychiatrist. She got married and had two children.
But right away, things were very different for Pammy. She overdosed on sleeping pills during her freshman year at Brown, and began cutting and burning herself.
WAGNER: All logic is suspended, and when they say, burn, baby, burn, then they start telling me that I have to kill myself, I have to do it.
PHILLIPS: Although Pamela graduated from Brown, she's never been able to keep a job or hold on to a romantic relationship. She has spent years in and out of hospitals, fighting the demons in her head.
WAGNER: I would say it's a waking nightmare. It's hell.
PHILLIPS (on camera): Are there any alternative therapies?
(voice-over): Last year, the voices ordered her to light herself on fire, suicide attempts. A body covered in cigarette burns.
SPIRO: I can't stop her. I can't -- I'm a psychiatrist. I'm her twin sister, and I can't stop her.
PHILLIPS: Carolyn couldn't stop Pammy's pain, but she could help her express it. And here's where the twins, whose lives had taken such opposite paths, began to come together again.
WAGNER: I wake in a psychiatric ward, on a bare mattress on a floor of an empty room.
PHILLIPS: The sisters began a memoir called "Divided Minds."
SPIRO: I want to dare her to kill herself.
PHILLIPS: The book is a gripping tale of the tragedy of mental illness. It chronicles the tested but unbreakable bond of two sisters.
(on camera): Carolyn, you wrote in the book: "I can never really know the hell in which Pammy lives. When I hang up the phone, hell disappears, but she knows nothing else. Hell is her life. When I look back over the past decades, I weep for her."
Is that hard to listen to?
SPIRO: There have been times when I've thought about Pammy's life and thought about my life, and wondered how is this fair? I have had so much joy. I have had -- I have such an incredibly wonderful life. And she has all the suffering.
WAGNER: You know, I've never felt, one, envious of Lynny (ph), and I never felt like I deserved more. Not because I feel guilty or evil, but because I could have developed cancer at age 19 and died at age 20. So, there are fates that are worse.
PHILLIPS (voice-over): The last time Pamela was in the hospital was nearly a year ago.
Finding the right treatment has been difficult. Out of desperation, Pamela even resorted to electroshock therapy. Finally, her doctors found a combination of medicines that help. Still, a visiting nurse keeps the pills in a lock box, so Pamela only takes what she needs.
WAGNER: To look at me, I'm doing a million times better than I was just a year ago.
PHILLIPS: The voices are still there, but they don't control her the way they did for so long.
WAGNER: Hurtful, harmful voices don't come right now.
PHILLIPS: Yet, even today, evidence of her illness remains in her own home. She put tinfoil up on her bedroom walls to block out radio waves that she says contaminate her brain.
WAGNER: And I think that the radio waves contaminated my brain.
PHILLIPS: As babies, they were mirror images of each other. As adults, they mourn the part of their lives together that has been lost.
SPIRO: She doesn't really understand what she means to me.
PHILLIPS (on camera): Can you imagine life without your sister, Pam?
WAGNER: No.
SPIRO: No.
PHILLIPS: That's love.
WAGNER: Well, I -- I think it is love, I guess. I just don't know what it feels like.
SPIRO: How could I give up on her? I mean, she is part of me. But it's like -- it would be like stopping breathing myself.
(END VIDEOTAPE)
ZAHN: Kyra Phillips reporting.
Coming up next, teenagers and obsessive-compulsive disorder.
(BEGIN VIDEO CLIP)
ELIZABETH MCINGVALE, OCD AWARENESS CAMPAIGN SPOKESPERSON: Opened my shower curtain, start with my foot. And I would go like this, and I can lift it up until it starts. Turn it off.
It's OK to touch everything else with my feet and get them dirty, because they're already dirty.
(END VIDEO CLIP)
ZAHN: A bizarre disorder that turns every decision into a nightmare -- that mystery of the mind when we come back.
(COMMERCIAL BREAK)
ZAHN: We now have more of our look at the mysteries of the mind. We all know what anxiety is. But when it spirals out of control, it becomes something else completely. In one form, it's OCD, obsessive compulsive disorder. And a half of a million American teenagers suffer from it.
Our Ed Lavandera met one brave young woman struggling with OCD.
(BEGIN VIDEOTAPE)
ED LAVANDERA, CNN CORRESPONDENT (voice over): If you're expecting to understand what makes Elizabeth Mcingvale tick after these next few minutes, you should know even doctors struggle to understand her.
ELIZABETH MCINGVALE, OCD PATIENT: I open the door with my foot literally. I'm pretty good at it. Sometimes it can take 45 minutes just to pick out a shirt and pants.
LAVANDERA: Elizabeth suffers from a severe form of obsessive compulsive disorder or OCD, and it affects everything she does from the moment she wakes up. Getting dressed is a chore.
E. MCINGVALE: If I actually were to wear this shirt, it is going to pretty much ruin my whole day. My anxiety will be so high, I can't focus, I probably can't drive. I can't probably leave the house. I won't touch anything.
LAVANDERA: Elizabeth is convinced most things in her closet are dirty or contaminated, as she says, even though everything has been washed and hung up nicely.
E. MCINGVALE: You know, I had worn like this orange shirt on a vacation once. There is a pink shirt that one day when I was getting ready for work I touched with one of my work shoes, which all my shoes are pretty much contaminated just from being on the floor.
LAVANDERA: She can't really explain what has contaminated her clothing.
E. MCINGVALE: Every shirt in here is clean.
LAVANDERA (on-camera): I noticed you haven't touched anything.
E. MCINGVALE: Right, because everything is contaminated.
LAVANDERA (voice over): The compulsive behavior doesn't end there. There is a constant need to wash.
E. MCINGVALE: I open my shower curtain with my foot. And I go like this and I can lift it up until it starts, turn it off. It's OK to touch everything else with my feet and get them dirty because they're already dirty.
It doesn't make sense because it doesn't even make sense to us. You know, we know what we are doing is stupid and we shouldn't have to do it, but we still feel like we have to.
LAVANDERA: All of this does drive Elizabeth crazy at times. There is a hole in the bathroom wall to prove it. E. MCINGVALE: I'm up to 3 or 4 in the morning just washing my hands back and forth, washing my hair, washing my ears. You know, I get so frustrated. I know what I'm doing is stupid, it's irrational, I don't want to do it, and I take my anger out on my walls.
LAVANDERA: Nineteen-year-old Elizabeth Mcingvale has opened up her world to us because she is the face of OCD, the first spokesperson for the Obsessive Compulsive Disorder Foundation. Her family first noticed the symptoms at age 12. She started losing weight, secretly washing her hands and constantly asking for reassurance.
A year later, she was officially diagnosed with OCD. When most high school kids were having fun, she was in and out of hospitals for treatment. Doctors don't know what causes OCD, and no one in her immediate family suffers from it. There's no cure, so she's left to treat the symptoms.
Now she's a college student and going public to let other young people know they're not alone.
E. MCINGVALE: You have two choices. I can either wake up and hate my life, which I sometimes do and, you know, wish I didn't have OCD and regret everything and, you know, wish it wasn't me, or I can say, hey, I'm Liz, I have OCD. You know, I have to got to go on with my life and I am going to make the best of it.
LAVANDERA: For Elizabeth, it's a personal campaign to help others. She leads an OCD support group and invited us to go along. But getting there wasn't easy.
E. MCINGVALE: I get ready in my sister's room. I do my makeup in here because mine is pretty much contaminated in my room.
LAVANDERA: She starts and then has to stop to wash her hands.
E. MCINGVALE: Wash my hands.
LAVANDERA: She washes her hands twice in 10 minutes in the bathroom. And while talking to me in the kitchen, she washes again.
E. MCINGVALE: I wash my hands the exact same way every time. I literally, like, get it all over my hands, and then I'll clean under my nails. And then I'll wash every part of my hands for at least 20 seconds because that's just my rule.
LAVANDERA: Now that Elizabeth is clean, we make our way to the car, which I thought was this black SUV.
(on-camera): What's the story behind this car?
E. MCINGVALE: It's my old car.
LAVANDERA: Your old car? Why is it your old car?
E. MCINGVALE: It's contaminated. A lot of my stuff gets contaminated. LAVANDERA (voice over): The car is a year old and in perfect condition, but Elizabeth won't use it. So now she's driving a new car. But before we drive off, she must clean the seat.
E. MCINGVALE: I'm only using my left hand now I just realized, because I touched those sunglasses.
My name is Liz. I run the support group. And I have -- I've had everything on the spectrum of OCD except for two.
LAVANDERA: Elizabeth seems more at ease here, where others understand her better and they can openly share what they're going through.
UNIDENTIFIED FEMALE: I suffer from hoarding and checking, counting, washing my hands all the time.
UNIDENTIFIED MALE: I don't like walking on cracks, and I count my steps.
UNIDENTIFIED MALE: For me, I knew I had to get it symmetrical. If I pulled out two hairs from one side, I had to pull out two hairs from the other side.
LAVANDERA: Elizabeth's sister, Laura, is by her side at these meetings. The two sisters live together, but Laura admits it's not easy at times.
LAURA MCINGVALE, ELIZABETH'S SISTER: She's such a selfless person. I mean, she knows that she might not ever see a cure and she might not ever have a normal life her entire, you know, life, career, whatever she's doing. You know, she might never see a real light at the end of all this. But, you know, she hopes it will come for somebody else.
E. MCINGVALE: Although I wish sometimes I could still be a teenager and not do what I am, I know what I'm doing is going to make a difference. And there's nothing else I'd rather be doing.
LAVANDERA: On the surface, Elizabeth Mcingvale appears like a confident, beautiful teenager. But her compulsive behaviors are getting worse. She says it won't be long before the face of OCD checks herself back into the hospital for weeks of treatment.
Ed Lavandera, CNN, Houston.
(END VIDEOTAPE)
ZAHN: A brave young woman with a lot of challenges ahead. We wish her luck.
Right now, we're going to take a quick biz break. The stock market ended a bad week with another down day. With today's losses, the Dow Industrials are 751 points lower than just a month ago.
Delphi, the bankrupt auto parts supplier for General Motors, has a new buyout offer for its union employees. In order to shrink the payroll, workers will be offered $70,000 to quit. Employees with more than 10 years of service could get $140,000.
And Wendy's is getting rid of biggie fries and drinks. No, the sizes aren't changing; only the names. From now one, a biggie will be called a medium.
Coming up next, another "Mystery of the Mind."
(BEGIN VIDEO CLIP)
UNIDENTIFIED MALE: Our body clocks just don't -- they don't care what time zone you're in. Eventually, it will adjust to where you're still getting up early. That's the way I've experienced it.
(END VIDEO CLIP)
ZAHN: A father and daughter with permanent jet lag. More mysteries of the mind still ahead.
(COMMERCIAL BREAK)
ZAHN: We continue to look at some of the baffling mysteries of the mind in our special hour tonight.
Our next story involves sleep. Think of how frustrating your life would be if no matter how hard you try, you fall asleep just after sunset and wake up just before sunrise every single day.
Keith Oppenheim introduces us to a family struggling with that challenge.
(BEGIN VIDEOTAPE)
KEITH OPPENHEIM, CNN CORRESPONDENT (voice over): It's three o'clock in the afternoon in Liberty, Missouri. Bethany McQuerry is playing piano for her high school jazz band. At the same time, her father, Clay, is close to finishing up his day at a company that manages employee benefits.
CLAY MCQUERRY, SLEEP DISORDERS PATIENT: There may be another step in there for me to give him access to it.
OPPENHEIM: But 3:30, he's out the door just 15 minutes away from picking up his children. And by 4 in the afternoon, everyone's home, early enough that you might think there's plenty of time left in their day, not for these two.
Unlike Clay's wife, Janel, and his son, Casey, who sleep at conventional times, Clay and Bethany are on a different schedule. By 5 in the afternoon, they're running out of gas.
(on-camera): How are we feeling now with the light of day as it is at the moment?
BETHANY MCQUERRY, SLEEP DISORDERS PATIENT: Starting to get a little tired, yes. I'll be yawning every once in a while.
OPPENHEIM: Now?
B. MCQUERRY: Yes.
OPPENHEIM: What about you?
C. MCQUERRY: Yes, when the sun starts going down, I'll start yawning or start getting a little bit tired.
OPPENHEIM (voice over): Clay and Bethany McQuerry have what's known as advanced sleep disorder syndrome or ASPS. Doctors say it's like permanent jet lag, a genetic condition, where the body clocks are moved forward, in their case by about three hours.
Both of them say they've been like this since birth. As a baby, Bethany would get up really early...
JANEL MCQUERRY, WIFE, MOTHER: And she would get real, real fussy probably about 4 or 5 in the afternoon. And I didn't know why. You know, and she was real young.
OPPENHEIM: These days pretty much right after dinner at around 7:30, Clay and Bethany hit the hay. Then in the early morning...
B. MCQUERRY: I'll wake up around 3:30 to 4:30.
OPPENHEIM (on-camera): And you're up around the same time?
C. MCQUERRY: Yes, 4 usually for sure, by 4:00.
OPPENHEIM (voice over): It's a sleep pattern that seems to follow the sun.
(on-camera): The McQuerry's say they sleep more in winter, less in summer. And when the sun starts to go down, so do they. And as far as they can tell, living somewhere else wouldn't make much of a difference.
C. MCQUERRY: Our body clocks just don't -- they don't care what time zone you're in. Eventually, it will adjust to where you're still getting up early. That's the way I've experienced it.
OPPENHEIM: To see what they experience, we lent the family a video camera to capture the overnight routine. At 8, Clay and Bethany went to bed. At 4:16 A.M., Clay is awake. At 4:37, Bethany. And when they are up, they are up.
C. MCQUERRY: It's hardly even worth trying to go back to sleep, because you really can't. So that's why we just get up.
OPPENHEIM: First thing, Clay reads the Bible and writes sermons for a church where he does some pastoring. Bethany meditates and finishes homework.
OPPENHEIM: Clay gets a few minutes on the treadmill. By 5:05 A.M., dad is making pancake batter, daughter is putting away last night's dishes.
C. MCQUERRY: Most people that know us probably don't even know that we have a sleep disorder. The one thing that they may know is that they'll get e-mails from me at, you know, four o'clock in the morning.
OPPENHEIM: 5:45 A.M., Clay and Bethany are chipper as ever in the grocery store getting a few extras.
C. MCQUERRY: We normally come early like this. But this is our best time of the day.
OPPENHEIM: After a fast stop at the car wash, they head home. At 6:35 A.M., Clay goes to work, while Bethany, her mom and brother eat breakfast. By the time Bethany is playing the flute in first period band, she's already been up for three to four hours. It's a routine both of them actually like.
C. MCQUERRY: We basically, if you look at it, we've had two hours of quality time as a father and daughter every day for 16 years.
OPPENHEIM: But there are down sides. Clay has to take precautions so he doesn't fall asleep behind the wheel.
C. MCQUERRY: I would take a caffeine pill, No-Doz or something like that in order to...
OPPENHEIM (on-camera): Just drive home?
C. MCQUERRY: Just drive home and feel good or safe doing that.
OPPENHEIM (voice over): Bethany misses out on evening events.
B. MCQUERRY: I'd like to have a treatment, you know, to keep maybe postpone -- be able to stay up a little later.
OPPENHEIM: This summer Clay and Bethany will go to Chicago to Northwestern University's Sleep Disorder Center to take part in research.
(on-camera): What do you want to find out?
C. MCQUERRY: I'd like to find out if they really know the source of our sleep patterns and what's causing it to be different. You know, why we are different than other people.
OPPENHEIM (voice over): Doctors at Northwestern say they don't have all the answers. But with ASPS, they do know genetics, hormones, physical activity and the light of day play a role in changing sleep patterns.
DR. PHYLLIS ZEE, NORTHWESTERN UNIVERSITY: In this case where light in the evening, they're getting exposed to more light in the evening so that in the summertime, that's a signal for that clock to delay a little bit. And this is what they need. They need to delay a little bit, because they're too far ahead. They're a little too advanced.
OPPENHEIM: One way to change that is exposure to light in the evening in the form of light boxes or illuminated glasses.
(on-camera): This is just one of the tricks of the trade to give people more light perhaps at the end of the day, so that they might go to sleep a little bit later?
KATHRYN REID, NORTHWESTERN UNIVERSITY: A little bit later, correct. So they can sit and watch television with these on, read a book.
OPPENHEIM: Keep in mind Bethany and her father have adapted to ASPS so well, they often don't see their disorder as a disorder. They're unlike people with the more opposite more common position, delayed sleep disorder syndrome, which could be more disruptive because people who get to sleep late, they get to work late.
Still, these early birds want to have more control over when it's time to call it a night.
OPPENHEIM (on-camera): Right now, it is 7:07.
B. MCQUERRY: Yes.
OPPENHEIM: How are you feeling?
B. MCQUERRY: I'm very tired. Yes, you'll probably see me yawn a couple of times. My eyes are getting about a fourth of the way heavy.
OPPENHEIM: Like the doctors who want to study them, Clay and Bethany want to know more about their internal clocks and what's making them tick.
Keith Oppenheim, CNN, Liberty, Missouri.
(END VIDEOTAPE)
ZAHN: Absolutely fascinating.
Coming up next, another mystery of sleep. Think your teens sleep their lives away? Well, some simply can't help it. And it devastates families.
(BEGIN VIDEO CLIP)
UNIDENTIFIED FEMALE: He cries and asks mom when am I going to be better?
(END VIDEOTAPE)
ZAHN: He's asleep for 10 days at a time. More mysteries of the mind straight ahead.
(COMMERCIAL BREAK)
ZAHN: A couple of minutes ago, we met a family who is struggling with the bizarre effects of having permanent jet lag.
Now, I want you to meet a teenager whose life is a nonstop battle against sleep.
Here's Kareen Wynter.
(BEGIN VIDEOTAPE)
KAREEN WYNTER, CNN CORRESPONDENT (voice over): He's only 15 years old, but he's in a race against time. Eric Haller seizes every moment on the basketball court and at home with friends. Simple things other people take for granted are precious to Eric. He knows it's just a matter of time before he loses control.
ERIC HALLER, KLEINE-LEVIN SYNDROME PATIENT: I'm pretty freaked out about that.
WYNTER: Before, he has to sleep again.
E. HALLER: It's pretty stressful. Sometimes it's depressing.
WYNTER: This vibrant, outgoing teenager slips into an altered state in which he sleeps and sleeps and sleeps, sometimes for up to 20 hours at a time day after day buried beneath a blanket, getting up only to use the bathroom or for a quick bite.
Eric's biggest fear was getting sick and missing Christmas. It happened again just like the last two years.
UNIDENTIFIED MALE: Do you remember the last time you woke up?
E. HALLER: No. I just want to sleep.
WYNTER: Most medical researchers have never heard of this rare disorder. It's called Kleine Levin syndrome, and it's a mystery. No one yet has found the cause. It's marked by episodes of excessive sleep, combative and child-like behavior. Each episode can last for weeks, even months, with patients literally sleeping their lives away.
Eric has missed school, holidays, a large part of his childhood. Loerry Haller says her son usually falls into an episode twice a month. His sleeping spells can last a week or longer.
LOERRY HALLER, MOTHER: He's going through so much agony right now, and it's a little hell right now that he's in.
WYNTER: Loerry's life is also on hold.
L. HALLER: He cries and asks, mom, when am I going to be better? He has no control. And that's very frustrating, knowing that he's losing part of his life.
WYNTER: It's 8 at night day nine. Eric has slept 18 hours today. The next morning, he wakes up briefly to use the bathroom.
L. HALLER: This is day 10, so he has been sleeping for 10 days. WYNTER: But Eric goes right back to bed. A few hours go by, Loerry is concerned. Watch what happens when she tries to wake him up in the middle of the afternoon.
L. HALLER: Aren't you hungry now? You haven't eaten in a long time?
E. HALLER: No, get out.
L. HALLER: Eric, do you feel like maybe you're coming out of it?
E. HALLER: No, I just said get the [ bleep ] out.
WYNTER: It wasn't always like this. Loerry says her son began to get sick in the sixth grade. She took him to specialists and psychologists, who invariably told her Eric was either depressed or on drugs or even faking his condition.
It took two frustrating years until one doctor finally reached a diagnosis, Dr. David Palton. He stumbled on the answer in a 20-year- old textbook.
DAVID PALTON, PSYCHOLOGIST: It talked about a case of a 17-year- old young lady who would go to sleep for a couple of weeks at a time and talked about her regression in personality. And then, you know, I knew that was something close to what I was seeing in Eric.
WYNTER (on-camera): Kleine-Levin syndrome, finally the Hallers had a name for Eric's problem. There are only 500 documented cases worldwide. But this new knowledge was a mixed blessing.
PALTON: Both had a big sigh of relief. It was bittersweet. It was good and bad news, of course.
WYNTER (voice over): Dr. Palton says there has been almost no research into KLS. No one has come up with a cure. Each case is different. If they're awakened, some patients might try to stay up in a confused, foggy state. But they quickly go back to sleep.
DR. EMANNUEL MIGNOT, STANFORD UNIVERSITY: There are actually even a few cases where people have died of suffocating from eating and overeating during sleeping.
WYNTER: Dr. Emannuel Mignot is a researcher at Stanford University's Sleep Disorder Clinic.
MIGNOT: We're finding that there is probably a genetic factor that's important in predisposing to Kleine-Levin syndrome.
WYNTER: Dr. Mignot says researchers are still far from a cure. Until then, patients like Eric Haller will live as much of their lives as they can in those precious moments of reality before they have to sleep again.
Kareen Wynter, CNN, California.
(END VIDEOTAPE)
ZAHN: And that is it for all of us here tonight. Thanks so much for being with us. We'll be back, same time, same place, Monday night. Until then, have a great night. "LARRY KING LIVE" starts right now.
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