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Mental Patients Awaken--to Rip van Winkle World : Health: New drug can arrest schizophrenia. But some people discover whole chapters of their lives are missing.

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TIMES STAFF WRITER

Imagine losing a decade or more of life, not attending the high school senior prom or college, never holding a job or dating. Think of missing movies, picnics, baseball games, parties and vacations--almost everything most people take for granted.

Try to imagine being a prisoner in the Skid Row of the mind.

Victims locked in this terrifying, lonely world are flooded with bizarre thoughts, such as that their ribs are melting or the CIA is signaling them or every person who approaches them on the street is a potential assassin.

Then imagine after a decade or more of agony, waking up in the real world again, a world dramatically changed.

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Psychiatrists call it the Rip van Winkle syndrome. Many patients call it a miracle.

Like Washington Irving’s good-natured Hudson River hero, who fell asleep for 20 years on a verdant mountain knoll and awoke to find everything different in his village, increasing numbers of once treatment-resistant schizophrenics are returning to reality.

“It is an amazing accomplishment for people who were given up as hopeless,” said Dr. Herbert Y. Meltzer, director of the Biological Psychiatry Laboratory at Cleveland’s Case Western Reserve University. “To have these people function at close to a normal level is something we did not think we would see in psychiatry in my lifetime.”

“People do get better and it’s damn exciting,” said Dr. Alan I. Green, assistant professor of psychiatry at the Harvard Medical School and administrative director of the Commonwealth Research Center at the Massachusetts Mental Health Center in Boston.

Psychiatrists point to a cross-section of successful cases, all of whom are taking clozapine, an antipsychotic drug with novel action approved by the federal government in 1989.

A music student who was forced to drop out has returned to Oberlin College. A housewife who is no longer plagued by hallucinations is taking up cooking again and has started to drive. A man who suffered a severe speech impediment--a side effect of other medications--has improved and is thinking of contacting a computer dating service.

The journey back for patients often mixes hope with anxiety, joy with regret.

“I just assumed I would be in the hospital all the time,” said Ann, 39, who has resumed life after being hospitalized 37 times in nine years. Now, she said, “I don’t have the expectation I will ever go there again. It’s the way mentally normal people feel.”

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As for functioning in society, “I am about 16 or 17 years old,” she said. “My friends years ago are in a whole different world than I am. They have rent, degrees, children, jobs, cars, credit cards, all kinds of things. I just kind of stood still in time. The idea that there is a stable kind of future is a very new thing for me.”

The drama of such cases rivals the temporary revival of some patients portrayed in the recent movie “Awakenings.” But unlike those patients with Parkinson’s disease, who were given the drug L-dopa by Dr. Oliver Sacks in the 1960s and ‘70s, many clozapine patients appear to improve steadily--even a year after treatment begins.

“The striking difference is these people are not going back to sleep again,” said Meltzer.

About 2 million Americans suffer from schizophrenia. A variety of antipsychotic medications have proved effective to one degree or another in alleviating symptoms in about two-thirds of schizophrenic patients. But for the remaining third, psychiatry has offered little for the delusions and hallucinations that mark the disease.

The parent of a schizophrenic son described the resulting agony: “Most mothers blunder along--exhausted, frightened, devoted, praying for miracles, near tears, every day of their lives.”

Studies show that clozapine can help members of this most seriously ill group, who often are on the brink of homelessness or are the chronic cases in the wards of state hospitals.

Results vary, but some clinical trials report that 60% of these patients show improvement, with about 10% experiencing Rip van Winkle awakening.

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“It’s the most useful new drug in many, many years,” said Dr. David W. Brook, associate professor of psychiatry at the New York Medical College. “It is on a different level of operation.”

Clozapine can cause serious side effects, including agranulocytosis, a potentially fatal blood disease. Careful medical monitoring must take place, which substantially increases the cost of treatment. All patients receive weekly blood tests.

Physicians liken the benefits of clozapine treatment to giving insulin to diabetics.

“If these people stop the medication, they relapse in two to four weeks,” said Meltzer. “But using optimal treatment and social support, they respond again. The illness is just arrested. It is not eradicated.”

When they start to recover, some patients remain frozen in the attitudes, dress, music and mores of the past and are not prepared for life in the ‘90s.

One man went to the library and presented his library card. The librarian explained that it expired a decade ago. An ardent angler drove to his favorite fishing spot, eagerly anticipating casting lures. An apartment house covered the fishing hole. Disappointed, he just ate lunch in his car.

Another patient decided impulsively to travel to Detroit to resume dating his high school sweetheart. Gently, his therapist reminded him that it was 15 years later. His girlfriend probably was married and her husband might not appreciate his visit.

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Still another patient, a promising pitcher in high school, wanted to try out for the major leagues. His therapist suggested that because of his age, coaching a Little League team might be more appropriate.

“I struck out 18 batters in one game once,” recalled Kevin, who first became ill in high school. “I did not throw one fastball in that game. It was all curves. When the wind was blowing on the mound, that would mean the ball would break more. The catcher kept giving curve signs. And you just kept throwing curve balls.”

Kevin’s voice trailed off, his baseball promise relegated to his field of dreams.

Because schizophrenia commonly strikes in late adolescence or in the early 20s, psychiatrists often find that many recovering patients need extensive reassurance and coaching in the skills of living that they have missed.

Virtually everything--from how to talk on the phone or make friends in school to how to dress appropriately or how to use an automatic teller machine--may have to be learned.

One person returning to reality was afraid to ride a city bus and looked with envy at children for whom taking the bus was second nature. Another panicked when it was time for him to go on a plane trip.

“The idea of driving a car just boggles my mind,” said Ann. “Everybody does that. My nephew, 16 years old, has his own car. I wouldn’t know what to do with it.”

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“They have missed years of their lives. People they used to know in junior high school and high school have normal lives and children,” said Dr. Steven J. Kingsbury, a psychiatrist on the staff of the Massachusetts Mental Health Center in Boston.

This spring, both as therapy and a testimony to youth erased by mental illness, University Hospitals of Cleveland are planning a high school senior prom for recovering patients who missed their senior proms. The guests, many in their 30s and 40s, will come in formal dress. The women will receive corsages.

“One issue is how to work through grief at the loss of the eight or 10 years that they will never get back,” said Dr. Miles F. Shore, the Massachusetts Mental Health Center’s director. “A second issue is learning to be, say, 29 years old rather than 19 years old.” A common regret for women is the realization their illness has shortened, if not robbed them of, their child-bearing years.

After years of paranoia marked by disfiguring mannerisms caused by side effects of other psychiatric drugs, an attractive woman who dropped out of college was able to return to St. John’s University in New York City after she responded to clozapine. She is receiving A’s and B’s in her classes. Her high grades cannot erase her regrets.

“She looks back and sees how the illness robbed her life,” said Dr. Philip R. Muskin, her psychiatrist. “Had the drug been available 10 years ago, she would have not lost any of her life. She would have met and married someone.

“She is generally only unhappy about one thing. She is 40 and she is not married. But she no longer converses with the devil. The devil no longer pays her home visits. She no longer sees lights coming out of peoples’ eyes. She has normal goals.”

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Alice, 38, got sick in high school and was forced to drop out of Smith College. The ‘80s were a nightmare--a schizophrenic decade spent in and out of the hospital. The ‘90s show much more promise, thanks to clozapine. She has her own apartment and works for a florist after completing a six-month course in floral design. She enjoys a warm relationship with her family and recently went on vacation with her mother and younger sister. She is saving to attend a family reunion in Italy.

But she cannot help being sad at times about the decade she missed.

“I sometimes think what would have happened had I gone to Smith. I probably would have been doing something different,” she said. “I also miss potentially having a family and children. The biological clock is ticking away. My sister is coming up on her 25th or something high school reunion. What if I went back to my high school reunion? What is it that I would share with the people, my friends in high school?”

Psychiatrists say a key part of Rip van Winkle therapy is getting patients to mourn their lost years, to express anger and sadness over what they have missed.

Since schizophrenia commonly strikes in late adolescence, many patients still need mothering and extensive help in learning job and social skills.

At University Hospitals in Cleveland, where the typical clozapine case is 35 years old and has been ill for 15 years, a comprehensive program stresses both individual and family adjustment.

Many families have been forced into the role of care givers for decades; some find it difficult to change.

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One father withdrew his son from therapy, saying he was fine after taking clozapine. His son wanted to drive again, and the father consented--allowing him to drive a few feet in front of the house and up the driveway. The father did not want him to improve any further.

“It is a growing up process,” said Sarah Burnett, a therapist and unit manager in the psychobiology program at the hospitals. “We have to sometimes go with them to the bus, help them with the cooking so that they get comfortable with it. Our clinic is often known as the eating clinic because many of our patients will bake their first batch of cookies. They bring the recipe and they do the shopping and share with the rest of the group. It really is giving them the training that was arrested.”

The pace of progress can vary widely, and new challenges can bring crises. One patient was doing well learning work skills and was supposed to visit his parents for the summer. When he failed to get off the plane, family members grew anxious and phoned Burnett. Social workers spent a whole day searching for the patient. Finally, when they entered his apartment, they found him lying in bed and refusing to answer the phone. The strain of a long family visit was still too great.

“There is a big phase of normal social development that hasn’t happened,” explained Dr. Ellen Rosenblatt, a psychiatrist in the psychobiology program at University Hospitals. “What we do is focus and are aware of every little phase that hasn’t occurred that people go through. It can be people getting first apartments. Dating is a big thing, even being able to go to a dance.

“It is very poignant to see people in their 30s who are just coming out of a period of life where they were very withdrawn and may have been delusional about sexual matters. They may have never dated because of their awkwardness in high school.”

Two clinic patients began a relationship as they began to recover. As they drew closer, they went on a picnic. But the woman suddenly was overwhelmed by feelings of potential intimacy. Panicked, she told her new friend she never wanted to see him again. Stricken, he stopped taking clozapine and relapsed. He had to be hospitalized so the medication could be resumed. The woman required crisis therapy.

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After several months apart, they are together again. They can be found sitting side by side on the hospital’s steps before clinic sessions.

Many patients who became ill decades ago have to learn manners and mores of the ‘90s. They are told it can be appropriate for a woman to phone a man to suggest a date. To learn how to dress currently, patients make collages from pictures cut from clothing catalogues or newspaper advertisements. They go on field trips to malls and shopping centers. Patients bring joke books to the clinic to learn current humor.

For patients whose musical tastes are frozen in the decade schizophrenia began, a trip to a record store can be an ear-opening experience.

Recently a group of patients gathered in a third-floor meeting room at University Hospitals to discuss how clozapine had changed their lives. The fact people who were so ill in the past could chat about change was testimony to the success of their treatment.

“My days are really busy, and when I lay down to sleep at night, I look forward to getting up the next day,” said Kevin, the former high school baseball player who holds a steady job and has re-established a relationship with his family. He would like to return to school and possibly study art or writing.

“I have the confidence to say, ‘Look what I can do.’ Before clozapine, I had side effects from just about everything they gave me. With clozapine, there are no side effects. It has opened my mind. It has given me an opportunity to get somewhere in the world,” the music student who returned to Oberlin College said.

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“Every day, it seems something remarkable happens,” said Dr. Rosenblatt. “It makes a big difference to be able to work with people who are getting better.”

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