SCHIZOAFFECTIVE DISORDER
Broadcast starting week of December 15, 2004

Hundreds of thousands of Americans have schizoaffective disorder, an overlap of schizophrenia and manic depression. The illness can cause them to have both mood swings and cognitive symptoms including mania, depression and visual or aural hallucinations, and can be at grave risk of suicide.

This week on The Infinite Mind, we explore schizoaffective disorder, what it's like to have the illness, how people have persevered in spite of it, and why it leaves so many doctors confused.

This week's host, Dr. Fred Goodwin's guests include Dr. Nassir Ghaemi, assistant professor of psychiatry at Harvard Medical School, Dr. Eden Evins, of the Massachusetts General Hospital Schizophrenia Program, and Dr. Corinne Cather, a cognitive behavioral therapist and clinical fellow at Massachusetts General Hospital.

We'll also hear a gripping account of what it's like to live with schizoaffective disorder and hear a musical performance of Philippe Gaubert's "Nocturne et Allegro Scherzando" from Tracy Harris, a professional flutist living with the disorder, and a remarkable recreation of what it's like to hear aural hallucinations as recreated by a leading Broadway sound designer, based on the descriptions of a young woman who is living with the illness. John and Katie Cadigan discuss their new documentary film, "People Say I'm Crazy," which chronicles John's diagnosis with schizoaffective disorder. And John Hockenberry looks at the steep rise in the number of suicides on military bases, and what the resulting government response can teach the rest of us about the need for access to mental health care.

Dr. Fred Goodwin begins the show with an essay about the confusion of schizoaffective disorder. When he began his career, over 35 years ago, schizoaffective disorder wasn't yet a recognized disorder. Patients were thought to either have manic depression or schizophrenia. But people who have schizophrenia, which is a thought disorder, often also have the mood symptoms of manic depression. How do we distinguish those cases from people with what we now call schizoaffective disorder? The answer is that we look at the course of the illness to see how long the psychotic state lasts. For example, if a person with bipolar disorder continues to have delusions or hallucinations after a manic or depressive episode has subsided, we may be looking at a person with schizoaffective disorder. This is why it's important for the family to be involved; so the doctor can get an accurate picture of how long the symptoms persist.

Then, we look at what its like to live with the illness. We asked musician Tracy Harris about her experience living with schizoaffective disorder. She describes her manic state, her depressed state -- that it hurt to breathe sometimes -- and then she talks about her psychotic state. "Why can't it just be one?" she asks "Why can't my mind just pick one [illness]?"

She says the psychotic state was the worst for her. She'd have an auditory hallucinations of a woman screaming. When she'd play in concert, she'd hear the "scream" a whole step above the note she was playing. So if she played a "C" note, she'd hear a "D" and a "C" together. She'd also hallucinate that she'd see giant spiders all over her room. She would try to hit them with a tennis racket and slam the door, but still she'd see their black legs poking through. She decided she had to get better. And now she is better thanks to getting the proper treatment.

She then performs one of her favorite selections of classical music. It's a piece she wasn't able to play when she was sick. When she plays it now, she says she thinks, "I'm back!"

You can read more about Tracy Harris in her book The Music of Madness, published by Writers Club Press.

Next, Dr. Goodwin speaks with Dr. Nassir Ghaemi, assistant professor of psychiatry at Harvard Medical School and author of "Mood Disorders: A Practical Guide." Dr. Ghami explains why there isn't a clear consensus on how to define schizoaffective disorder. Some believe it's its own valid diagnosis, while other believe it's part of a spectrum of Schizophrenia, or a subtype of bipolar disorder or schizophrenia. Dr. Ghaemi says that doctors sometimes aren't sure if a patient is bipolar or schizophrenic, so they’ll just call it schizoaffective disorder. "It's a little bit of diagnostic laziness," he says. Dr. Ghaemi says he believes only a small number or people have "true schizoaffective disorder."

Dr. Goodwin then takes phone calls. One woman wants to know if her seven year old son could have schizoaffective disorder. Dr. Ghaemi says that we don't have established criteria for how to diagnose the disorder in children and that the onset for the disorder is in late adolescence. "What will it take for the psychiatric community to take schizoaffective disorder more seriously and really research it?," Dr. Goodwin asks. Dr. Ghaemi says we need to first come to a consensus on how to classify the disorder, and only then will major corporations begin to fund scientific research into schizoaffective disorder.

To reach Dr. Nassir Ghaemi, you can write to: Dr. Nassir Ghaemi, The Cambridge Hospital, 1493 Cambridge Street, Cambridge, MA 02139. To purchase Dr. Ghaemi's book "Mood disorders: A Practical Guide," click here.

Next, we wondered what it would sound like to hear auditory hallucinations. So we asked a leading Broadway sound designer Sten Severon to speak with a college student who has schizoaffective disorder and who hears voices. She asked us not to use her name because she didn't want her fellow students to know about her illness. She describes for Sten the voices in detail, saying that she hears a sound like a chorus of 30 or 40 people in her head and that it sounds neither male nor female. The voices tell her what she's doing and what she should do. Sten then produces an audio clip based on what she's described and he plays it for her.

Curious about how the voices sound? Click here on the Real Audio link so you can hear it.

Next up, Dr. Goodwin speaks with Dr. Eden Evins, staff psychiatrist at the Massachusetts General Hospital Schizophrenia Program, and Dr. Corinne Cather, cognitive behavioral therapist and clinical fellow at Massachusetts General Hospital. Dr. Evins first talks about what medications work with schizoaffective disorder, but she cautions that we need more research into the disorder. Most researchers lump schizoaffective disorder either with Bipolar disorder or schizophrenia. Dr. Evins is doing a study now on schizophrenia that includes schizoaffective disorder. We find that many people with schizophrenia smoke and when doctors help them quit smoking their cognitive abilities get worse. Dr. Evins explains that we need to understand how nicotine affects the brain so that we can help people with schizophrenia stop smoking but also give them some form of nicotine that seems to help. People with the disorder have too little dopamine, a neurotransmitter, in one part of the brain, and too much dopamine in another part of the brain. Nicotine seems to help balance out the dopamine levels with in turn assist in cognitive thinking.

Dr. Cather then talks about her work as a cognitive behavioral therapist. When she trained for this kind of therapy, she was told she would not work with people who have Schizophrenia, but now that's most of her patient population. She works with people to find ways to change their behavior. Here's an example: If a patient believes he or she is hearing voices, Dr. Cather will have the patient tape record those moments when they hear voices. Then Dr. Cather will listen to it and show the patient that nothing was recorded on tape, and that the voices aren't real.

To contact Dr. Evins or Dr. Cather, you can write to, Massachusetts General Hospital, 55 Fruit Street, Boston, MA 02114. Or you can visit the hospital's website by clicking here.

After a short break, we look at how schizoaffective disorder affects siblings. We hear from three people who each have a brother who has schizoaffective disorder. Alice tell us that before her brother got sick he always took care of her and looked out for her. She says one way the disorder has changed the way she sees things is because even though she knows she's too old to get the disorder, she's always afraid she might get it too. Then Suneel tell us about his brother who has schizoaffective disorder. He says that he's afraid of him and he feels guilty for having avoided him and for not helping his parents deal with the situation. Then we hear from Ann, whose brother also has schizoaffective disorder. She's still close with him and they often go out together for sushi. She says the disorder has taught her not to take her brain for granted. She calls it a gift that she's thankful and aware of that now.

Then we hear from siblings John and Katie Cadigan. John has schizoaffective disorder and directed a film about his experience called "People Say I'm Crazy." The film is slated to run on Cinemax in the fall. Katie, along with academy award winner Ira Wohl, produced it. John says he began taping himself primarily because he wanted to understand his illness. Katie says that not only did John get to understand his illness, but that that seeing the film helped her family better understand his disorder. Then John talks about his paranoid thoughts which he has a daily basis. We hear a clip from the film in which he starts having paranoid thought about Katie. "She's evil," John says, "and she doesn't care about me." Then we hear him struggle with trying not to believe these thoughts. He repeats over and over to himself "It's not true, it's not true, it's not true." John says it's hard to listen to film clips like that because he truly does struggle with paranoid thoughts, and Katie says it makes her sad that he thinks she doesn't love him. She deals with it though and says it's good when he tells her about his paranoid thoughts about her. It's like a pressure cooker boiling over, and she can be the release valve and help him work it through. John often does "reality checks" like these in which he confronts the person he's having paranoid thoughts about and asks if his thoughts are true. John says this technique has helped him a lot.

To find out more about John or Katie Cadigan, or to find out more about the film "People Say I'm Crazy," visit www.peoplesayimcrazy.org.

Finally, we hear commentary from John Hockenberry. There is a steep increase in the number of suicides among U.S. military personnel and John tells us that the U.S. military has an aggressive campaign to deal with mental health. In fact, the military makes sure each soldier has access to a mental health care professionals or chaplain. Given that the suicide rate in the U.S. is double the murder rate, he says the military has a lot to teach us civilians.

--Devorah Klahr

 

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