Before Stage Four: Confronting Early Psychosis

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[Announcer] Funding for this program was made possible by The Staunton Farm Foundation. Thank you. [Oberon] I was hearing voices that were saying disturbing things. [Lizzie] I was wandering the streets in the wee hours of the night. [Oberon] It feels as though there's someone else inside my mind. [Lizzie] You're just so lost. - The voices tell me that if you slit your wrist, everything will fix itself. [Narrator] Psychosis can strike hard, and almost always, it strikes people in the prime of their young lives. - On top of all the pressures of adolescence and high school that everybody deals with, you're also asking yourself, did I just hear that? Was that guy following me all this time? Are those voices really coming from the wall? - I was just terrified. I had no idea what to do. [Narrator] And all too often, young people with psychosis leave school, or work, only to begin an unfortunate, life-long journey. - My son has been trapped in the revolving door of occasional hospitalization, frequent incarceration, and chronic homelessness which has trapped so many people with psychosis. And we need to change that. [Narrator] That change is happening now, with a new focus on what's called "First Episode Psychosis." [Irene] It's a program for adolescents and young adults who are experiencing their first symptoms of a psychotic episode. - And it's not something that could be better for you. [Narrator] In "first-episode" programs, families and medical teams work together when the troubling signs "first" appear. Keeping loved ones "in" school, "at" work, making sure promising lives are not derailed. [Irene] The proper treatment has everything to do with quality of life going forward. [Narrator] There's new hope here, too, in this Pittsburgh lab where researchers explore young brains. [Dean] Ready to go? We're trying to develop tests that will tell us who is going to be psychotic. [Narrator] Uncovering, and confronting, the mysteries of early psychosis. [Dean] So that we can find out ways to eradicate the disorder before psychosis emerges. We have to act before stage 4. - People end up reaching a crisis point. - We need to act on mental illnesses the same way we act on every other chronic disease in America. That's before stage four. [police siren wails] [Narrator] Somewhere on the streets of San Francisco, a young man named Tim walks among the homeless. While in this boardroom, overlooking our nation's capital... his father watches the horizon, and wonders. [Paul] I'd walk those streets looking at homeless people. I'd walk those parks. I'd walked along that beach where I knew he hung out and I'd never been able to find him there. And there have been stretches as long as nine months or so, when I've not heard from him, and we're not quite sure whether he's alive. [Narrator] The Gionfriddos adopted Tim, as an infant, in 1985. - [indistinct] [Paul] Tim was a great kid. Everybody loved him. [Narrator] He was soon a big brother. [Woman] I caught you! [Paul] He was cuddly. [Narrator] Four kids, all adopted, with Tim, the center of attention, full of spark. [Paul] He was energetic. He really was just a joy. [Narrator] Tim's father, Paul, served in the Connecticut State Legislature, and later, as mayor of his hometown. It was a comfortable life. But Paul remembers when Tim first showed warning signs, at an age many people can't imagine. - He developed symptoms of schizophrenia when he was five years old. [Narrator] Tim withdrew, had trouble sleeping and making friends. It got worse. - Well, the day when he was six years old and went out and laid down in the middle of the road just to see if a car would run him over. [Narrator] And so, Tim's parents entered that frustrating cycle... Pediatricians... Neurologists... School psychologists... Testing for ADHD... Special Ed... Therapy... Very few answers... - I don't like school, okay? [Narrator] Almost no progress. - Tim had already had suicidal ideation at that point. Tim had already reported hearing voices so we knew we were dealing with a serious mental illness. [Mom] Tim on his first day in fourth grade. Give us a smile, Tim. [Narrator] The teenage years brought bigger challenges. Like many students with psychosis, Tim couldn't follow the rules, and that meant suspensions, expulsions, hospitals, and jails. [Paul] After Tim was in jail six times in the first couple of years, you begin to just accept this is the pattern. [cheers and applause] [Narrator] Looking back on his years as a legislator, Paul is reminded of decisions he and colleagues made including a few that would eventually hurt his own family, and others. Like not creating intervention programs to keep young people with psychosis out of prison. And closing state hospitals without adequate community centers as safety nets. [Paul] We didn't just close one kind of institution with locked wards called the state hospital. We re-opened those institutions. We just called them something different, county jails and state prisons and we're still paying the price for having made that mistake today. We're picking up the slack of what the systems failed to do. [Narrator] Paul would eventually become president and CEO of Mental Health America. It's one of the nation's leading non-profits that support people living with mental illness. - About half of mental illnesses in this country emerge by the age of 14, half of them, and yet, 10 years frequently pass before we diagnose and treat properly. [Narrator] That's one of the reasons Paul's team created a program called "Before Stage Four", encouraging early treatment, before the illness gets to an advanced stage. There's also this online screening. It's a short series of questions for people concerned that they, or a family member might have symptoms of a mental health disorder. Like depression, anxiety, bipolar disorder, PTSD, Psychosis. [Paul] Have you felt that you were not in control of your own ideas or thoughts? Definitely. [Narrator] So far, two million people have taken the screening, three thousand a day. More than two-thirds have shown positive symptoms for a mental illness, mostly from age 11 to 24. - We don't do screening for mental health for children the same way we screen for vision problems and hearing problems. We should. [Narrator] That kind of screening did not exist when Tim Gionfriddo was a little boy. His official diagnosis of schizophrenia didn't come until he was 16. By then, Tim was nearly lost in his illness, and just two years away from homelessness. [Paul] So at 17, they're treated as children. Their parents are in on all the decisions. At 18, they're adults. How ready can they be to manage their diseases? [Narrator] And despite many efforts to "find" him a home or "bring" him home Tim is often on the street. - For too long in America, we have waited until people become a danger to themselves or others as a trigger to treatment. This has made mental health concerns and conditions, the only chronic diseases in America that we wait until stage 4 to treat. [Narrator] Lizzie Morris knows all too well about the critical stage of psychosis. [Lizzie] If my illness had been recognized early on, I feel like it would have prevented a lot of heartache. I wouldn't have felt so alone. [Narrator] Lizzie spends a lot of time in this tiny chapel, at Saint Vincent College in Latrobe, Pennsylvania. But there was a time when she couldn't think straight enough to say a prayer. [Lizzie] I couldn't remember how to say Hail Mary because the voices were so strong in my head. [Narrator] Fifteen years ago, Lizzie was too sick to know she was sick. Her family watched her personality change, not understanding why. - [indistinct] [Lizzie] My mom noticed that I was starting to feel depressed. They did say that I had severe depression with psychotic features. It was a scary time. When I would look into the mirror, it was like I hated the person that I was. Please, I'm going to ride on the train, all by myself. [Narrator] She'd been a very different person before, acting in high school, outgoing, talkative, friendly, inquisitive. [Lizzie] Had fun running around with my brothers. [Narrator] There were no symptoms, until she was 25, teaching school in Maryland. - Awesome! What were they saying about all the things that were in Jim's cabin? A relationship ended, my grandmother passed away, my brother went into the Marines. And it was a lot of upheaval for me. So here the English major, you would think she would know what this is. I didn't really understand the illness. [Narrator] Like so many others during the first signs of psychosis, she tried to medicate the depression away with alcohol. - I would drink until I couldn't drink anymore or would pass out. [Narrator] Lizzie saw a psychiatrist, got medication, but felt sedated. The drinking continued. - As a coping mechanism, like well, I don't what I'm gonna do about these voices, so I'm just gonna keep drinking. [laughs] [Narrator] The illness was still overwhelming. [Lizzie] It was a very uphill battle for me because I wanted to be getting married, and doing the things my friends were doing. And here I was trying to manage this illness. [Narrator] And she wasn't managing well. Late at night, Lizzie started walking the streets of her neighborhood, confused, sitting on the porches of strangers. [Lizzie] I thought there were people out in the street that would be people I knew and that I could talk to them, but I could never find them. I thought I was bugged, or someone was following me, or that there were cameras. At one point, I decided I was going to singe my wrist with a car lighter, that's how much I hated myself. [Narrator] Today, Lizzie reflects on her hospital stays. Three times... Times of pain... Time she'd like to have back. [Lizzie] I wish I had known the warning signs earlier. [Narrator] It took eight years, but the right combination of therapy, medicine, and family support turned the tide. - Hey, David! How are you? [Narrator] Lizzie found work as a certified peer specialist, visiting, and mentoring other people coping with mental illness. [Lizzie] I wanted to work something that I actually felt like I had meaning doing. - [indistinct]. - Nice. That's part of your vocational goal. I'm just glad I can help people that are struggling like myself, to help them have better lives. [Narrator] Her clients might not know it, but when Lizzie is here, she always says a prayer for them. She's found peace here again. And when she's inside this chapel, her illness no longer follows. - I love that little chapel. I believe many miracles happen just from those candles that are lit there. I have hope again, and I love my life. [Oberon] I know they're hallucinations because they appear and disappear. The olanzapine was making me tired. [Narrator] This isn't your typical therapy session... but it's not unusual for Dr. Irene Hurford or Oberon Wackwitz, who's dealing with early psychosis. Their casual chats on the Penn campus are just one part of Dr. Hurford's "First Episode Psychosis" program, in Philadelphia. [Irene] Getting people out of my office really opens people up, and it's so much less clinical, and they're able to tell me things that they didn't tell me when we were sitting face-to-face in my office. [Oberon] I haven't really been hearing any voices or anything. When I'm walking with Dr. Hurford, you know, I feel at peace; that's the best I can describe it. [Narrator] The program is far more than a walk in the park. It's getting attention from the mental health community. And it's based on groundbreaking data from the National Institute of Mental Health. Four hundred people with early psychosis took part in a national study. Some got standard care. The rest entered a specialized program focused on four areas of treatment: Individual therapy, personalizing their medication, educating their families, supporting them at school and work. Those "in" the program did much better staying in treatment longer, showing improvement in their psychosis, doing better at school and work, enjoying a better quality of life. Dr. Hurford uses a similar model in her program called "PEACE." [Irene] And that's what PEACE does. It really treats psychosis as an obstacle and not an illness. As something to be overcome, and not something to redefine their lives. Just taking that hopeful, optimistic and non-stigmatizing approach probably makes the biggest difference. And I think that this is sort of what the group is about. Strengthening family dynamics. [Narrator] On this day, a family session. The young people in this room have felt depressed, anxious, paranoid, heard voices. Oberon is here. So is his mother. - Oberon, what's going on for you? - Studying for the test. [Shona] His attitude and his outlook on life, he used to really not wanna be here. He hated it. He hated life. I didn't know how to make that go away. [Narrator] Even as a child growing up in Philadelphia's inner city, Oberon remembers hearing voices, and feeling depressed. [Oberon] From, you know, a very early age, I had very paranoid voices that I would hear in my head. - And at first, I was just like, "Oh, it's a phase, he'll grow out of it." - And you start to believe some of the things that you're hearing. [Irene] More than Oberon's psychotic symptoms, his biggest obstacle has been poverty. [Narrator] Poverty "is" a big challenge for young people dealing with mental health issues. Poor schools are rarely equipped to recognize early signs of a student's psychosis. And there's poor access to treatment, in general. [Irene] PEACE really does have an opportunity to step in and provide the support that is missing from their lives. So sometimes, I think that PEACE is almost less about psychiatry and more about social justice. [Narrator] By the time Oberon enrolled in Philadelphia's University of the Sciences, the depression deepened. The voices were more demanding. [Oberon] When you're hearing these aggressive voices, these abusive voices all the time that are making you feel like you're worthless or that your time is useless or that life is pointless and that you should kill yourself, you know, and you're fighting back against that, you don't want to believe those things, but it becomes very difficult. [Narrator] Oberon was cutting himself, and had thoughts of suicide. He signed himself into a hospital psychiatric ward. - It was very scary. And so, I went into survival mode. [Irene] If I've been hospitalized on an inpatient psychiatric unit, well, I, for the rest of my life been a psych patient, and in adolescence, particularly where we're building that sense of identity, avoiding hospitalization is so critical. [Teacher] Oh, that's so neat. [Narrator] Oberon was referred to Dr. Hurford, and her PEACE program. - I only get to finish it, but it's close enough. - Beautiful. [Narrator] With its art, music and writing sessions, medication is monitored, one-on-one consultations are either in the PEACE building, or wherever it works best. Oberon, and many others, noticed a remarkable change. [Irene] We work very hard to help them to go back to work to go back to school, or even better, to stay at work, and to stay in school. [Oberon] Today in the lab, I am working on preparing a sample of graphite. [Narrator] Oberon is now closing in on a physics degree, and working on campus, as a lab assistant. - Without the PEACE program, I would probably be on academic probation, struggling with voices. And at the very worst, maybe dead because of suicide. [Irene] Oberon is a really amazing spokesman for what it can be like to experience real and profound psychotic symptoms and still go on to have an incredibly productive life. [Shona] I think he can see the light at the end of the tunnel now whereas before, there was no light. [Oberon] The PEACE program has really changed my life, and saved my life. I'm still fighting my psychosis, but I'm very close to winning this battle. [radio announcer] Blue skies and sun, but it's cold today in Pittsburgh. [Irene] Well, the good news is it's already changing. I feel like I don't need to beat my drum quite as loudly as I used to because all over the country, these "First Episode Psychosis" programs are starting up. [Narrator] And Irene Hurford's been asked to help. Today, she's driving to Pittsburgh. - And I think young people love mindfulness. [Narrator] Where Marci Sturgeon-Rusiewiecz is starting a "First Episode" program at Family Services of Western Pennsylvania. One location, the town of Tarentum. - So this is an old steel town. It used to be sort of a thriving place, and it is now vacant to some degree, and so, access to behavioral health supports is very limited. I'm excited to show her this place that we are and how far we've come. This is our group room... - Did you put the beam in? - We did. [Irene] I'm really impressed with this space that I'm in right now, this group room is really lovely. [Narrator] Dr. Hurford meets some of Marci's team, listens to concerns, and shares advice. - If I can impart one thing, it's to approach care with hopefulness and energy and optimism, from every member of the team. The staff, they were incredibly committed already. And they just seemed really excited about starting, and that was the best part. [Narrator] Through federal funding, Pennsylvania is adding several Early Psychosis programs across the state. The new one serving Allegheny County is called "ENGAGE", and Marci's team plans to do just that. - We really want to do a great job at educating universities, high schools, boys and girls clubs. We know there's young people out there that need our help, and we have new tools in our tool box to be able to... to provide that help. [Scientist] We're going to apply electrodes above and below your eyes. How does that feel? Is that too tight? I'll have you wear these goggles that have a sensor on the side. [machine beeping] There you go. So this is what you'll be using to respond. [Dean] We do research into psychiatric disorders in particular psychosis. Even at the very first episode of psychosis, about 70 percent will report auditory verbal hallucinations. Let's see if we can find a good average. So even very early in the disease course, we know that the auditory system has abnormalities in it. [Narrator] Someday, thousands of people might stand a better chance against psychosis and schizophrenia because of what's happening in this lab. [Dean] Muscle activity looks good. This testing is at the cutting edge of brain imaging. Looks like a healthy, large response. [Narrator] Here, dozens of young adults, teens and adolescents are taking part in brain studies at the University of Pittsburgh Medical Center. [Scientist] Could we have you look left to right with just your eyes? [Narrator] Dean Salisbury's team is watching for malfunctions in the brain, and they're not looking for what's "causing" psychosis, but rather, signs of who's likely to get it. [Dean] Someone who's hearing voices would have a much smaller response. [Narrator] The researchers are sending sounds to the brain, to see how it reacts. - Each time the tone's played, we get a very specific kind of activity that's related just to the processing of that sound in the brain as it goes from the ear into the auditory cortex. [Narrator] The team studied the brains of people with, and without, early signs of schizophrenia. The healthy brains responded "actively" to sounds, but not the brains of people experiencing early psychosis. - We see widespread activity in the healthy brain and auditory cortex and frontal lobe, and much less activity in the brain of someone who had a first episode of psychosis. It persists for a long time in temporal and frontal lobes in the healthy brain but not in the brain of someone who has had a first episode of schizophrenia. [Narrator] That means the sensory part of the brain, controlling the perception of sound, has a disconnect with the frontal lobe of the brain, which controls behavior. This could indicate a person who is easily distracted, unable to focus. Someday, a test like this could be used to screen children. Kids whose brains show that smaller response to sound, could be watched more closely as they grow up. [Dean] And they will get the early interventions and new kinds of treatments to try and prevent that psychosis from emerging. [Narrator] The team is also studying the loss of gray matter. People with early psychosis show signs of just that. Losing gray matter causes malfunctions, which bring on psychosis. [Dean] The longer that the disease goes untreated, the worse it is for the brain, and the more gray matter they lose. [Narrator] Spotting these abnormalities "early" in the brains of "young" people could predict who's vulnerable to psychosis, later in life. [Dean] We're working very hard to come up with new treatments and the outlook is brighter than it has ever been. [bell ringing] [Narrator] Back in the 1950s, the call went out for shackles and handcuffs that once restrained people at state asylums. They were melted down and forged into a giant bell of hope... [bell ringing] which still rings out at the National Headquarters of Mental Health America. [Paul] That bell is needed today as much as it was back in 1953. It's not uncommon for us to take kids out of schools in handcuffs when they've got a mental health crisis, and we need to change that. [Narrator] That's one of the reasons Paul Gionfriddo wrote "Losing Tim." It's the story of his child, the one who is not in this picture. The little boy who became a casualty to a system that wasn't always ready to confront and treat early psychosis. [Paul] By most objective standards, people would say, well, he's failed. He's a mess. No, society failed him. The system's a mess. But Tim is remarkably intact in spite of it. [Narrator] And so, Paul Gionfriddo and his wife make one more trip to San Francisco. And with the help of Tim's case manager, Paul is about to have a reunion with the 31-year-old son he hasn't seen in four years. [Paul] When I saw him the first time, I had exactly, exactly the same feeling that I had the very first time I saw him. And I was thinking, you know, my boy looks good. He's smiling. His eyes are bright. And then I looked around and I thought... But look at where we are, you know, look at what we've done to him, and gotten him to this place where he lives in abject poverty and there's no way of not noticing that. - Can I try? - Sure, it smells though. - It looks better on Tim. - It looks better on Tim? - Yeah, I think so. - Oh, gosh! Did you see that? - I didn't see that. - Where do you hang out if you're not here? - Sixth and Minna. - Sixth and...? - Minna. - What's there? - Alley. It's just an alley I hang out in. - An alley? Okay. [Narrator] For now, Tim was off the street, and in housing. - It's a lot better because when I was on the streets, you know, I couldn't really always eat all the time. Usually it's hard concrete with a blanket. [Paul] It was one little room. It was filthy. [Tim] There's mice that live and go right through there. And that's kind of hard because they scratch at the floor at night. - But it was a great reunion. We spent most of the day together. - I'm really happy to see them, I haven't seen them in so long. I'm, uh, I really am happy that we get to hang out today. - It's hard to leave. Pam and I both had tears in our eyes. You know, we don't know if we're going to see him again. [Narrator] Two weeks later, Tim was kicked out of the apartment, homeless again. Paul Gionfriddo has accepted that pattern in his son's life, but he, and a growing number of others, will not accept a mental health system that doesn't recognize the importance of early diagnosis, and treatment of psychosis. [Paul] What we can do for Tim is what we could have done for Tim way back when he was five years old. Recognize it early. [Irene] Proper treatment of the first episode of psychosis paves the way for positive outcomes down the road. - Things will get better. [Oberon] Someday, I hope to be living my life to the fullest, and not being hindered by this illness and not letting it define me. - We will make a difference in the lives of people like Tim and so many other people like him. [music fades out]

Info

Channel: WQED Pittsburgh

Views: 54,349

Rating: undefined out of 5

Keywords: wqed, mental illness, mental health ameraica, before stage four, psychosis

Id: R9TNdERDbf8

Channel Id: undefined

Length: 28min 46sec (1726 seconds)

Published: Fri Mar 31 2017