Charting a path to recovery
By Taylor Sisk
This is the second in a three-part series on the onset of psychosis in young adults, its treatment and UNC’s Outreach and Support Intervention Services program.
[OASIS series main page]
When David Binanay was diagnosed with schizophrenia in 2006, a year out of college, he was very fortunate in a couple of fundamental ways.
First, he had the support of his family.
“My family went through psychosis as much as I did, particularly my mom and dad,” Binanay says.
Obviously, the experience is a traumatic one, your loved one present, but from afar.
“Imagine your son coming from here,” Binanay says, his hand reaching for the ceiling. “And now where did he go?
“My family went through a lot,” and stood by him each step of the way.
Binanay was also lucky to be diagnosed soon after the onset of his illness, and to be referred to the Outreach and Support Intervention Services (OASIS) program – administered by UNC’s Center for Excellence in Community Mental Health – in Carrboro’s Carr Mill Mall.
Binanay needed direction; he needed acknowledgement of his perception that what was going on was as much in his heart as his head. It was a profound spiritual experience.
The staff at OASIS was willing to accept that. The importance of mapping an exit strategy of the client’s own design is a cornerstone of the OASIS philosophy. The conviction that there’s hope is another.
Diana Perkins, OASIS’ medical director, describes a recent meeting she had with the parents of an 18-year-old boy in rural North Carolina who had been diagnosed with schizophrenia. They had taken him to a local hospital, and were told by a psychiatrist that their son would never recover – no hope; get used to it.
“And it was just devastating,” Perkins says. “Here they had this 18-year-old boy, off in college, and now they’re being given this message. This was a psychiatric hospital; this was a trained psychiatrist.”
The problem, Perkins says, is that psychiatrists often don’t see schizophrenia patients until their illness is advanced.
“Clinicians have this bias,” Perkins says, “and they really need to understand that this is not inevitably a chronic, disabling illness, that people can learn to manage it.
“They need to understand that there’s tremendous hope.”
UNC’s OASIS program was launched in September 2005. Its objectives are to engage young people in treatment of the onset of psychosis and assist them in regaining social and occupational functioning, toward, ultimately, preventing disability from a psychotic disorder.
From experience, Perkins and her colleagues have come to see that the needs of this young population are very different from those with chronic psychosis. They’ve realized that early intervention can prevent the illness from becoming chronic.
“There is symptom recovery and functional recovery,” OASIS program director Sylvia Saade explains.
The strategy is to control symptoms with low doses of antipsychotic medication and then focus on functional recovery, which means the return to school or work, to lives in progress. Some patients, but not all, must adjust their expectations.
Though there’s no cure for schizophrenia, Perkins says, “We have treatments that can effectively control symptoms and prevent disability in most patients.”
While it’s known that the frontal cortical and temporal lobe regions of the brain are affected by schizophrenia, the disease’s causes are unknown. There are many theories about causation. One theory relates to mitochondrial function, the energy producers in our cells. There’s also evidence that the way the brain responds to stress may contribute to schizophrenia risk.
“At different levels, we have lots of different theories that are driving our understanding of what might be contributing to risk,” Perkins says. “But it’s probably not the same thing for every person.”
Schizophrenia is diagnosed on the basis of psychosis. One of the senses will start making mistakes. For example, you may start having hallucinations.
Or you may have delusions, believing that people are talking about or laughing at you. You may think people on TV are making special reference to you. You observe connections between things that most people don’t see, or you may think, “That person just said exactly what I was thinking.”
“When your brain’s not working right,” Perkins says, “all these things you depend on your brain to do – to interpret visual stimuli, what you see and what you hear to make sense of the world – start to break down.”
It’s not necessarily the first sign, but it’s the defining sign of the illness.
“The whole point is that there is a disorder in perception and interpretation. Those are the main things our cortex does; it perceives and interprets the world, and that breaks down.”
It’s a bit like what happens in dreams, Perkins says. “You know how while you’re dreaming, it all kind of makes sense to you? And then you wake up and try to tell someone your dream, and you realize you can’t tell it.”
A ‘severe course’
David Binanay believed he had a special purpose. He had known great success in his life: singing with the Raleigh Boychoir in Carnegie Hall, school president, top of his class, a talented violinist.
He’d also survived four open-heart surgeries. “My mission was to survive,” he says.
As schizophrenia set in, Binanay began to perceive synchronicities and coincidences: “I would walk outside expecting to see my mom, and my mom would drive up,” he says. “That’s really cool, when that gets firing on all cylinders.
“For me, it was like purpose. I’ve always been about purpose.”
He can still feel the passion that imbued him, the passion to figure out what it was all about.
“I started reading a lot of religious texts, the Bible. I would drive, searching for places just to hear the word, to hear people speak. I would meet interesting people. I was living the dream.”
He talked with his priest, but it was at the height of his psychosis, and, “It didn’t go well. It did not go well.”
OASIS was his refuge: “They knew everything I was going through.”
But a commitment to the meds was part of the plan, and that involved a tradeoff – the euphoria for a shot at stability – he wasn’t quite ready to make.
“His illness took a severe course,” Saade says of Binanay’s struggle with recovery.
“I think David had a hard time coming to terms with the role that medication would play in his life,” Perkins says, “what he needed to do to maintain a sustained recovery, how he was going to manage.”
It’s a two-way commitment.
“Every person who comes in is unique, and we have to work with them to find the strategies that work best for them,” Perkins says.
“People have to figure out how to believe that they’re effective in the world, that they’re a good person, that they can contribute, that they’re valuable,” and, yes, that they’re living with schizophrenia.
Some three in four people with schizophrenia will have ongoing disability with relapses. OASIS is aiming to reduce that number.
When a person experiences his or her first psychotic episode, often it’s gone within a few weeks, and the person is back to normal.
“It feels to the patient, and sometimes to the physician treating them, that the patient is cured,” Perkins says, “or that it could be just a one-off thing that happened.”
Unfortunately, that’s not usually the case.
Seventy to 80 percent of those who recover from a first episode of psychosis will experience a relapse within a year, Perkins says, and virtually all will relapse within three years.
With each relapse, it generally takes longer to respond to medication and the response is less complete. There is often a loss of cortical gray and cortical white matter: The brain, with each recurrent episode, shrinks.
But is it inevitable that people with schizophrenia will experience that downward spiral? Is it inevitable that at least three in four will live with chronic illness and disability?
“The answer is no,” Perkins says, “it’s not inevitable” – and that’s the premise upon which OASIS is founded.
OASIS strives to maintain long-term recovery through low-dose antipsychotic medication and psychotherapeutic intervention, with the help, if possible, of a client’s family. The most crucial element is the client’s own commitment to recovery.
And: “It’s critical that it’s caught early,” Perkins emphasizes. “The earlier it’s caught, the greater the likelihood of a good outcome, the greater the response to medication, the greater likelihood of functional recovery, the greater resilience against relapse if it occurs.”
Next week: The road to recovery