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Surviving Schizophrenia: A Manual for Families, Consumers and Providers

E. Fuller Torrey

An Interview with Dr. Torrey

An interview with E. Fuller Torrey, M.D., author of Surviving Schizophrenia: A Manual for Families, Consumers and Providers, Third Edition.

How is your new edition of Surviving Schizophrenia different from the previous ones?

The third edition of Surviving Schizophrenia is as different from the second edition as its green cover is different from the orange cover on the older edition. Even the subtitle of the book has been changed from "A Family Manual" to "A Manual for Families, Consumers and Providers."

I have especially reorganized the practical aspects of the book so that readers can more readily pick out what they are looking for. For example, Chapter 9 is entitled "Six Major Problems" and has sections on 1) Cigarettes and Coffee; 2) Alcohol and Street Drugs; 3) Sex, Pregnancy, and AIDS; 4) Medication Noncompliance; 5) Assaultive and Violent Behavior; and 6) Suicide.

Chapter 10 is "Questions Asked by Consumers and Families," and it has sections such as "Should People with Schizophrenia Drive Motor Vehicles?" "How Can Relapses Be Reduced?" and "How Do Religious Issues Affect People with Schizophrenia?"

I have also included more practical information on resources. There is a six-page listing of the most useful videotapes, compiled by Mrs. Katie Petray, as well as a listing of available courses forgetting education on schizophrenia.

My favorite section continues to be the annotated "Readings on Schizophrenia," which has been expanded to include "The 15 Best and the 15 Worst." Some old favorites and unfavorites are joined by new nominees, including some outstanding books and also some that are truly dreadful.

What are some of the positive changes that have taken place in the last 12 years in how we view and treat this disease?

The two most exciting changes that have taken place in the past 12 years have been advances in research and a decrease in stigma. We know much more about schizophrenia as a brain disease, as I summarize in Chapter 6, "What Causes Schizophrenia?"

Increased research funds from NIMH, NARSAD, the Theodore and Vada Stanley Foundation, and the Scottish Rite have merged with rapidly improving technology for studying the brain to produce a veritable stream of research developments, and this stream is accelerating. It is really an exciting time from a research point of view.

The decrease in stigma has come largely through public education.. NAMI members at the local level (for example, teaching a class at a local school) and at the national level are largely responsible for this decrease in stigma.

However, the single largest factor in decreasing stigma has been the willingness of individuals who have been affected with schizophrenia to go public and talk about their experiences in newspaper interviews, books, radio, television, and videotapes. We owe a great debt to these individuals, such as Fred Frese, Lori Schiller, Esso Leete, Carol North, Brandon Fitch, and the others.

Is anything surrounding this disease or its treatment actually worse now than it was a decade ago?

There is no question that public services, overall, are worse than a decade ago. More individuals with schizophrenia are living in public shelters and on the streets; more of them are in jails (usually on misdemeanor charges); more of them are living in very marginal group homes; and more of them are living in questionable nursing homes.

For many reasons, which I detail in Chapter 1, "Dimensions of the Disaster," deinstitutionalization has been carried out very poorly and is the largest single failed social experiment in twentieth-century America. We are so used to the mediocre services that we forget how bad they are.

For that reason I included a new section in the book on "Examples of Good Services" and listed (with an accompanying map) the best clubhouses, the best continuous treatment teams, and the best community mental health centers and comprehensive treatment programs.

The other troublesome question that has recently arisen--and which I discuss in the book--is whether the incidence of schizophrenia is increasing in the United States. There is recent data suggesting that it may be. If this is indeed true, then our problems with services are going to get even larger.

How will consumers and families be helped by your book? Overall, what does it offer them that they have trouble obtaining otherwise?

Surviving Schizophrenia offers families, consumers, and providers one-stop shopping. In a single book an answer can be found to almost any question that may arise, from the history of schizophrenia to a list of the best journals to read to keep up on the research developments.

My model for the book is Dr. Benjamin Spock's Baby and Child Care, which is so widely used because it tells mothers everything they need to know in a single volume. The third edition of Surviving Schizophrenia has a markedly expanded table of contents (five pages) and index (17 pages) so that readers can quickly find whatever they need.

In that sense, Surviving Schizophrenia is the type of book that you keep around and pick up to read specific sections. It's not a book that you read once through then put on the shelf.

What is the most often asked question about schizophrenia from someone such as a family member who has just learned that a loved one has the disorder. What is your answer? The most often asked question is the obvious one: What can be done? And my response to it is to emphasize the importance of finding a competent psychiatrist and the importance of starting antipsychotic medication as quickly as possible. I detail this in Chapter 7, "The Treatment of Schizophrenia."

The next most often asked question is frequently asked indirectly: "Did I cause my relative to become sick?" Those of us who are familiar with research on schizophrenia sometimes forget how many people are not familiar with it.

Family members often assume that they played some role in causing their relative's disease. I explain that they played no more role in causing the schizophrenia than they would if their relative had developed Parkinson's disease or multiple sclerosis--in other words, no role whatsoever.

If the family of a person with schizophrenia remembers just one major point made in your book--holds onto just one message--what would you like it to be? If the consumer remembers just one point, what would you like it to be?

For the family, I would ask them to read Chapter 2, "The Inner World of Madness," and realize how difficult life is for individuals with schizophrenia. People with schizophrenia are often heroic in their efforts to control their voices and delusional thinking and to lead normal lives.

For the consumer, I would ask him or her to read Chapter 11, "How to Be an Advocate," and parts of Chapter 10, such as "How Can Consumers Survive Schizophrenia?" If they remember just one point, I would like it to be the increasing role that consumers themselves are playing in advocacy efforts and in delivering services to other individuals who are affected with this disease.

Perhaps the best examples are the consumer provider (also called consumer case manager) training programs listed in Appendix C. Consumers are playing an increasing role in services, and this is exciting progress.