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Mindstorm: Virtual hallucination aims to create empathy for schizophrenic patients

This article first appeared in the St. Louis Beacon, June 4, 2009 - Your hand reaches out for a mug of coffee. It looks fresh. Steam rises from the dark liquid. But a voice warns you not to drink. The coffee has been poisoned. A putrid stench invades your nostrils as the liquid bubbles. You place the mug back on the counter.

But the voices won't quit: You're worthless. Lazy. They're talking about you.

Experiences like these are part of the daily lives for people with schizophrenia. Until recently, it was possible for others only to guess what that was like. But now through virtual technology, health-care workers, law-enforcement professionals, family members and friends can get a better sense of what those psychotic episodes feel like -- and even smell like -- mental health professionals say.

Staff members at Independence Center in the Central West End got a chance last week to experience the computer-generated hallucination with the coffee cup and other scary stimuli. Janssen Pharmaceuticals created the six-minute program, called MINDSTORM. (Click here to see a MINDSTORM video.)

Janssen, based in Titusville, N.J., makes antipsychotic medications and is aiming to create understanding and empathy for people with schizophrenia. During the MINDSTORM experience, participants sit in a dark room and hold a lightweight polarized viewer in front of a large case with a laptop computer inside. A fan is also used to help simulate a sense of smell to go along with the sound and video.

Audrey Pearson, a staff member at the Independence Center, said the experience felt authentic to her. And it was useful. "I'm always communicating with members, asking 'what is it like' so I can have an understanding and be open-minded and empathetic toward what they are dealing with day-by-day," she said.

Pearson is a placement manager and helps Independence Center members with job training. The center, at 4245 Forest Park Ave., is a nonprofit agency that provides programs and services for adults with serious and persistent mental illnesses in the St. Louis area. The center works primarily with people who have schizophrenia, schizophrenic effective disorder, bipolar disorder and severe clinical depression.

Steven Name, who lived in Indiana and Kansas before moving to St. Louis, joined the Independence Center in 2007. He said his schizophrenia worsened after his step-father died in 2005 and his sister died in 2006.

He said he began "seeing things that aren't there, hearing voices.

"It took me a couple months to really get motivated because I just was afraid to do anything," Name said. "Voices were saying, 'You don't have to do anything. You'll be all right'. That's not the case."

About 70 percent of people with schizophrenia hear voices or experience auditory hallucinations, and 25 percent experience visual hallucinations or distortions, said Dr. Collins Lewis, a board member of Independence Center and a psychiatrist.

Lewis said pharmaceutical manufacturers have made advances in creating drugs with fewer side effects like dizziness, grogginess, dry mouth and muscle stiffness. That makes it easier for people with schizophrenia to stay on their medications.

Another path to empathy is to listen to people like Name who can describe the hallucinations and how it makes their struggle to cope so difficult.

"When people say 'hearing voices', people are thinking, 'well, I always talk to myself', but when you have schizophrenia, it's totally different," Name said. "You're hearing the voices, but you're not in control. You're taking those voices, and you're doing what those voices say. And a lot of time, people have died because their voice would say 'hey, jump off the bridge' or 'jump off a parking garage'. So, it's really difficult to struggle with."

Along with a day hospital and clinic, Independence Center hosts a clubhouse in the Central West End. The clubhouse is a place where members can dine at a cafe, work in the center's resale and flower shop and visit with other members.

More than 1,200 adults receive services from the center each year.

Alysha Love is an intern with WeissWrite LLC and Sarah Scully is an intern with the Beacon.