Nearly 60 years ago, mental-health treatment began its move from massive warehouses like the old Massillon State Hospital to community-based care. But the path to effective treatment continues to face challenges: from old stereotypes to new medications. In the third installment of our series, “Navigating the Path to Mental Health,” WKSU’s M.L. Schultze explores the evolution among providers, advocates and patients.
Diane Mang and her mother, Peggy, are preparing the cheesecake brownies for regular bingo crowd at the Knights of Columbus hall in Massillon.
“You’re going to put cherries on top?" Diane asks, with a hint of doubt in her voice.
"Yeah, that’s what it called for," her mother responds.
The relationship is easy and open -- built on the love since the Mangs adopted their baby girl in 1972. But Diane acknowledges it wasn’t always that way.
“I thought I was going to die," she recalls. "They put me in five-point straps -- both feet, both wrists and your forehead were strapped to the bed."
That was 1992. Diane was 19 and had been studying aerospace engineering in college. When things were good, she zoomed through classes and activities. When things were bad, she couldn’t get out of bed. And when they were really bad, she attempted suicide.
Her parents had brought Diane home -- and to a psychiatrist. From there, they went to the psych ward at Mercy Medical Center. For a tour, Diane thought. For a solution, her mother hoped.
"I wanted to get her help and I knew she needed it, and I was so happy we could get her someplace.” Peggy recalls.
Instead, she says, it was “horrific.”
When bipolar was new
Diane was committed and put on high-dose anti-depressant, which accelerates mania in bipolar disorder. She tore her room apart, trying to escape Satan, and gouged her wrists with a broken cassette cartridge.
It took two years, nearly a dozen hospitalizations and an overheard conversation to find a doctor who specialized in bipolar disorder. He enrolled Diane in a national study, put her on a mood stabilizer, and made a connection with the right therapist. She graduated from Kent State in 2001.
The hospitalizations weren’t over. But her mom, Peggy, says she knew the “mean disease” hadn’t won. “I loved her so much from Day 1 and I would never, ever let anything happen to her.”
Progress with caveats
On a bigger scale, there also are signs of progress – with big caveats. The Affordable Care Act expanded behavioral-health care, though public dollars are limited. There are new medications.
And while there’s an acute shortage of psychiatrists, primary-care doctors are getting more mental-health training. Nurse practitioners coordinate primary and behavioral care. Community pharmacists – when not squeezed out by insurance requirements for lower-cost mail-order – monitor patients. And peer groups and even apps provide support.
Medications transform and cost
Sara Dugan, a mental-health pharmacist at the Northeast Ohio Medical University, says psychotropic medications remain a crucial first-line tool that transforms lives. But they can be costly, have serious side effects and stop working – all of which providers need to discuss with their patients.
“If we find a great medicine that works but they’re going to be unwilling to take it because of the side effects they get, then we’re still at square one.”
She says best practice now for people experiencing their first psychotic episode is – whatever the medication -- low dosages.
“Lowering the dose of these medicines in some patients may actually help them reach functional recovery where they’re able to be engaged in those activities that they want to be engaged in their everyday life.”
Patients as partners
But perhaps the biggest change in the mental-health field is not limited to mental-health. It’s called motivational interviewing: doctors trained to ask questions in a nonjudgmental way, valuing the responses, and starting a conversation, not a lecture.
Russell Spieth works on mental-health issues with people ranging from chronically homeless to college students. He’s running through a short version of motivational interviewing with Venkat Tondapu, a first-year NEOMED medical student.
“That’s a nice way to engage you as opposed to ... using a bias and moving in one direction."
Spieth acknowledges time is tight in medicine these days, but demonstrates how the technique can make the most of what time there is.
“‘OK, we were talking about antidepressants for the past five minutes. What do you think you’re going to do when you leave here?’
"The question allows the patient to have the opportunity to talk themselves into change. ‘Yeah, you know what, I’m going to go to CVS and fill the prescription and start taking it.’ There’s research to suggest just stating something like that makes it more likely you’re going to do it.’
As importantly, he says, the message behind the question is empowering.
“You’re my partner, you’re a fully functioning person with autonomy, you get to decide what happens.”
Spieth says clinical studies show the technique is 75 percent more effective than traditional doctor’s visits.
Often, success is measured by getting patients to adhere to their medication. But Spieth says it also can help find a better fit with other therapies or even help taper someone off medication they believe they no longer need.
Ultimately, he says, it can turn the key only the patient holds. He remembers a homeless man with schizophrenia who rejected that diagnosis … and medication. But he did talk about sleep problems which led to music, which led to performing which led to taking schizophrenia medication for “nerves.”
“He still never endorsed the diagnosis of schizophrenia. He referred to it as nerves. I don’t care. Nerves is fine.”
Another part of the evolving continuum of mental-health care is NAMI.
Forty years ago, a couple of mothers whose sons were diagnosed with schizophrenia formed what has become the National Alliance on Mental Illness. Today, its 1,100 affiliates work on education, advocacy and support, including peer-to-peer and family meetings. The core value is unconditional acceptance.
In Stark County, a half-dozen NAMI alum still get together on Friday nights. They include people working in mental health, business people, parents; those with a history of mental illness in their families and those with none. The diagnoses include bipolar, panic-anxiety, schizoaffective, depression.
The talk ranges from mindfulness to meds, isolation to inclusion.
"I wasn’t going to tell anybody ‘cause I was afraid they were going to lock me up. … I’ve been over a hundred different medication changes and it doesn’t make you feel great. … I wanted to be a good parent, but I was also struggling with mental illness. … We take care of each other, it’s a big thing. … And that takes you out of the anxiety about the future, and the depression in the past, you’re just in this place of pure possibility.”
For Diane Mang, NAMI was a key piece in the transition from disabling mental illness. She hasn’t been hospitalized since 2006, and works with NAMI now, trying to help people learn how to navigate and advocate for their own care – and to resist seeing themselves as “less than.”
“I guess I don’t think of it as a defect anymore. If I didn’t have what I have, I wouldn’t be who I am. And I kind of like myself.”
Meanwhile, she and her mother Peggy prepare the bingo dinner each Monday, celebrate recovery each moment and even share a favorite song whenever they hear it: "Hey Soul Sister."
For more on the evolution of mental-health treatment:
Click here for more from NAMI on mental-health conditions.
The WKSU series: “Navigating the Path to Mental Health"
Part I (May 29): Achieving Acceptance: Overcoming Stigma on the Path to Mental Health. One out of five Americans, this year, will experience a mental health disorder. Yet, for all its prevalence, many people dealing with mental health crises still face stigma and shame.