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News and information for Friday, August 20, 2004

  Closing the medicine cabinet door
The debate over drugs to treat mental illness
 BY KATHLEEN MELLEN

Gordon Daniels
Oryx Cohen of Worcester is a co-founder of Freedom Center, which is based in Northampton. Cohen hopes to help those like himself who have been diagnosed with a mental illness live a productive life without medication.



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[ Originally published on: Friday, August 20, 2004 ]

Oryx Cohen has been hurtled many times to the depths of depression but, undaunted, has always climbed back out again.

Cohen, 30, who works for a Holyoke agency as an advocate for people with disabilities, is a contemplative man, tall and slender, with a tentative yet beguiling smile.

He is astute, educated, well-spoken and attentive ' and he has been diagnosed with bipolar disorder. He has had stretches of deep depression, periods of paranoia and days when he was convinced he could control the thoughts of his peers.

He nearly killed himself once by driving into the back of a truck, thinking he could teleport his car through the vehicle.

Yet Cohen refuses to take psychiatric medications his doctors have prescribed, saying they leave him dazed and unable to function.

''I'm a stubborn person,'' said Cohen, who also rejects the claim of many in the medical profession that mental illness is caused by a chemical imbalance in the brain.

Instead Cohen, who lives in Worcester, has adopted a regimen of eating healthy foods and exercising regularly that he says helps control his symptoms. And he has joined with like-minded people in forming the Freedom Center in Northampton to provide alternatives for others diagnosed with mental illness.

Through talk therapy and support groups and relaxation techniques such as yoga, Reiki and writing, the Freedom Center helps members keep their mental balance, says Cohen.

Cohen, along with Will Hall of Northampton, who was diagnosed over a decade ago with schizophrenia, founded the Freedom Center in 2001, part of a nationwide effort to challenge the theory that mental illness is caused by hereditary or biological traits. Furthermore, they say they are opposed to the use of psychotropic medications as the primary treatment for mental illness.

Even before his own diagnosis with bipolar disorder, which is often called manic depression, and his subsequent encounters with the mental health establishment, Cohen was skeptical of its claims, he said.

''Psychiatric training in medical schools is brainwashing,'' said Cohen, who as a psychology major in college studied the traditional theories about the causes of mental illnesses. ''I didn't buy it at all.''

The Freedom Center, which runs its programs in various locations in downtown Northampton, is a non-profit organization funded primarily through private donations. Last year students at the Smith College School for Social Work donated $1,500 to the center, the first time in over two decades the annual class gift was not given to Smith. The organization also received a one-year $10,000 grant in 2003 from the state Department of Mental Health and smaller sums from state and federal sources. It is run by volunteers who, like Cohen and Hall, have themselves been labeled mentally ill. Most of them have tried medication ' by choice, coercion or force ' and have decided to pursue a medication-free life.

VIKKI GILBERT OF AMHERST is one of them. Gilbert has been hospitalized in psychiatric wards five times, and over the years has taken 19 psychotropic medications ' often up to six at a time.

The combination, she says, left her a mess.

Over the years doctors diagnosed a number of conditions: major depression, personality disorder, bipolar disorder and, most recently, schizoaffective disorder.

She said she took the medications prescribed ' antipsychotics, mood stabilizers, antidepressants, tranquilizers ' because her doctors convinced her she would never get well without them.

''I believed the crap I was told,'' Gilbert said.

In the process, Gilbert, who is a poet, said she lost her ability to write poetry.

''The side effects from the medication were so terrible that it was sometimes impossible to function,'' said Gilbert. ''I was energetic and intense but the medications almost made me lose my personality.''

Finally, unwilling to accept the changes in her personality, she decided to wean herself from the drugs, a process which she says must be done slowly and carefully to allow the body to adjust.

Now, 38, and medication-free for nearly two years, Gilbert has joined forces with the Freedom Center. ''I perform and write poetry, talk with people who I find supportive, use peer support and practice yoga, meditation and Reiki,'' often under the supportive eye of other Freedom Center members, Gilbert said. She also utilizes the Wellness Recovery Action Plan, a self-help guide recommended by the center and devised by mental health recovery educator and author, Mary Ellen Copeland, of West Dummerston, Vt. The plan, among other things, requires Gilbert to keep a journal identifying circumstances that may produce symptoms as well as early warning signs of trouble. It also provides suggestions for steps to take when she feels she may be losing control, such as listening to music, talking to a friend or health care professional, exercising or using guided imagery, that is, conjuring up soothing sights, sounds, tastes or smells in her mind.

''People need caring, listening people ' not to be treated as objects,'' said Freedom Center co-founder Hall, who says his group has been successful in helping people avoid hospitalization.

THE FREEDOM CENTER models itself on work done by Dr. Loren Mosher, former chief of the Center for Studies of Schizophrenia at the National Institutes of Mental Health in Bethesda, Md., who was a pioneer in establishing programs for psychosocial community care.

Mosher, who died July 10 of cancer, spoke recently at Mount Holyoke College in South Hadley, about Soteria House, a residential program he founded in the 1970s in San Jose, Calif.

The program followed what Mosher called a humanistic approach to treatment of people with mental illness in offering an alternative to hospitalization. Soteria House provided a homelike setting and trained but non-professional staff, with a focus on interpersonal therapy. Little or no medication was used.

In a study done between 1971 and 1983, and published in 2003 in the Journal of Nervous and Mental Disease, Mosher compared results of Soteria House's treatment methods for newly diagnosed schizophrenics with the results for similar patients in traditional hospital settings. Participants were evaluated in areas such as social functioning, improvement in their mental states, the ability to work, live alone or with peers, and the rate of readmission to mental health programs.

Data showed Soteria House was as effective as hospitals in quickly ''reducing levels of acute positive symptoms of mental illness'' in 85 percent to 90 percent of the people surveyed, according to Mosher's report.

And while he maintained that his program was at least as effective as hospitalization, and more economical, he told his audience that it was eventually shut down largely due to lack of funding and opposition from pharmaceutical companies opposed to his non-pharmaceutical treatment approach.

Mosher, a Harvard-trained psychiatrist, said he had been against the automatic use of antipsychotic medication in treating mental illnesses such as schizophrenia since the beginning of his career. He told his Mount Holyoke College audience, ''Our program was recovery-oriented ... We used the principals of choice, informed consent and volunteerism to achieve our goals. We demystified the experience of psychosis,'' he said.

THE SCIENTIFIC and medical worlds have struggled for centuries to pinpoint the causes of mental illness and the ways to treat the afflicted.

In his book ''Mad in America,'' Cambridge journalist Robert Whitaker outlines medicine's ever-changing treatment methods ' from warehousing the ''insane,'' performing lobotomies and using hydrotherapy and shock treatments, to the current use of psychopharmacology.

At each juncture, Whitaker says, the medical community has poorly gauged the causes of, and therefore the appropriate treatments for, mental illnesses.

At the heart of the modern-day disagreement is the now widely accepted theory that mental illnesses are caused largely by brain malfunctions which produce chemical imbalances, Whitaker said in a recent interview.

Researchers at the American Psychiatric Association say there is evidence that the brain chemistry of the mentally ill is different from that of other people and that medication is required to correct it.

''Just like a diabetic patient who needs insulin or a heart patient nitroglycerin, a patient suffering from a severe mental illness may need a specific type of psychiatric medication,'' the APA Web site says.

But Whitaker, a former health reporter for The Boston Globe who was nominated for a Pulitzer Prize for his work there, said the most convincing theories he found while researching his book, suggest those illnesses are caused by life trauma, combined with factors such as inadequate diet, poor exercise and ongoing stress.

He is not alone in that belief.

For example, the U.S. Surgeon General's 1999 report on mental illness states, ''Few lesions or physiologic abnormalities define the mental disorders, and for the most part their causes remain unknown.''

Researchers in England recently reported that an increase in diagnosed mental illness in that country may well be the result of changes in farming and food consumption over the past 20 years, resulting in a deficiency in the British diet of essential omega-3 fatty acids. A study earlier this year by the Royal College of Psychiatrists revealed a link between a lack of omega-3 fatty acids in the diet and schizophrenia, worldwide. It concluded that people who eat high levels of sugar and dairy products, and not enough oily fish, are more likely to develop severe mental illness.

But, Whitaker said, such studies have been largely ignored by the medical establishment, and as a result, he says, treatment rates for the mentally ill haven't improved in 100 years.

Dr. Edward Ballis, psychiatric medical director at Noble Hospital in Westfield who uses both drugs and psychotherapy in his treatment plans, said he generally accepts the current medical thinking that biology is at the root of mental illness.

''There is most likely a constitutional predisposition'' to mental illness, which, under the right environmental circumstances, will surface, he said. For some, he added, the trait will be so prominent that it will show up regardless of life experiences, while, for others, problems may surface only in the event of significant influences, such as sexual abuse.

Ballis, however, cautions that drugs are not always the only, or the best, treatment. He said that although psychiatrists strive for a balance when prescribing medications, often adjusting types and doses repeatedly, medications are relied upon too heavily in treating mental illness. As a result, he said, doctors often ignore other options.

In fact, for some patients, he said, certain medications are ineffective, while for others the side effects, may be unbearable.

In spite of that, Freedom Center members point out, the number of patients receiving psychiatric medications continues to climb, especially since the introduction in 1986 by Lilly Pharmaceutical Co. of the antidepressant Prozac.

That medication alone has been prescribed for some 40 million patients worldwide, according to the manufacturer's Web site, despite the fact that in 2003, the U.S. Food and Drug issued a public health advisory reporting a link between suicide and the use of some antidepressants, including Prozac.

AMONG THOSE WHO'VE tried Prozac is Freedom Center co-founder Will Hall. Over a decade ago, he said, his doctors told him to take it to relieve his depression.

''At first it was like the best cup of coffee I had ever had,'' he recently told an audience at a seminar at Smith College. ''I was being very productive at work, getting up early, and really feeling better than well.''

But then, he said, he had a manic reaction which he attributed to the pills.

''I was suddenly acting very differently at work, wearing weird clothes and getting into big arguments with my co-workers.''

He said he was ''terrified'' by the experience.

''No doctor warned me, and nobody got me off the Prozac when the manic reaction started,'' Hall told his audience. ''I ended up losing a long-term job as a result of this drug side effect.''

Two years later he ended up in a locked psychiatric ward in a San Francisco hospital, where he was diagnosed with schizophrenia. He was put in restraints and isolation and forced to take Navane, a far more powerful drug.

''I lost who I was,'' said Hall. ''It changed my personality to be on medications ... It's a form of torture.''

Today, Hall, who stopped taking medication 11 years ago and has not been hospitalized since, uses holistic healing methods to maintain his mental well-being.

Oryx Cohen said people like Hall and himself are often duped into thinking those medications are their only hope for effective treatment ' a notion he says is supported by an establishment of physicians, mental health workers, law enforcement officials and the courts.

Cohen grew up in Eugene, Ore., where he had a happy childhood and successful college years, he said. But his first job, working with inner-city children in a black neighborhood in Portland, left him confused and depressed. ''It was culture shock ... I couldn't process it,'' he said. He quit that job and took what he thought would be a less stressful position in a golf course restaurant, busing tables and bartending. That decision, however, left him feeling overqualified for his work and frustrated.

''I had been depressed before ' I think everybody gets depressed ' but this was different,'' Cohen said. ''This was major.''

Cohen said he felt constantly tired. ''I had no energy to do anything, I was getting no enjoyment out of things I used to enjoy. I started to have paranoid thoughts ' to think that people were talking about me, and maybe they were,'' he said.

Having a basic distrust of the medical profession, he said, he was reluctant to visit a doctor. And so he began to research his symptoms on the Internet.

What he found, he said, further disturbed and disheartened him.

He discovered no shortage of information, but very little that challenged current accepted medical theories.

''Everywhere I turned on the Internet said depression was a biological disorder ' that you need to take drugs to treat this and that it will never go away ' that you'll have it for your life. I wasn't comfortable with that ... I didn't want to be sick, and I didn't want to have a condition.''

Cohen said he viewed the cause of his own depression as situational, and decided it wasn't medication he needed, but a change of environment.

He enrolled in the master's degree program in public administration at the University of Massachusetts at Amherst and decided he would fight to get better on his own terms. He forced himself into a routine of eating healthy food and doing lots of exercise.

''When you're in a situation like that it's not easy, dealing with the inertia. You're in a black hole and it's hard to get out of it,'' Cohen said of his debilitating depression.

''Initially it takes more energy to figure out what keeps you well ' there's a learning curve.''

Soon after his arrival at UMass, Cohen said, he began to have feelings of paranoia again.

Distressed by a disagreement at school in which he felt vulnerable and outnumbered, he said, he entered another manic phase. He began to go for days without eating and sleeping, stopped going to classes, and spent hours each day dreaming up ways to ''free the minds'' of his rivals.

''I felt like I was going through some real big enlightenment. I felt better than I had in my whole life,'' Cohen said. ''You get infatuated with that feeling ' it's the seduction of madness.''

Cohen said his friends became increasingly concerned about him and encouraged him to seek medical help, which he did not do. Their concerns, it turned out, were well-founded.

Soon after, Cohen drove into the back end of a truck, thinking he could ''teleport'' his car through the other vehicle. He nearly killed himself. ''Fortunately, no one else was hurt,'' Cohen said.

When he had recovered enough from his injuries, the hospital which was treating him transferred him to its psychiatric ward, where he was diagnosed with bipolar disorder.

''They put me on medication, even though I was terrified of what [the drugs] would do,'' said Cohen. But, he said, his family encouraged him to take the medications. ''If I didn't, I knew I would be forced to.''

After he was discharged he continued to take the pills (up to 2,000 mg daily of Depakote) but the side effects were intolerable, he said. He became severely tired, sleeping up to 16 hours a day, and gained 40 pounds in two months. He vomited frequently and his hands shook uncontrollably.

Upon his return to UMass, Cohen saw several psychiatrists before settling on one who helped him reduce his medication.

''The minute I walked into his door, [the doctor] could tell I was overmedicated, dazed, shaky, exhausted,'' Cohen said. ''He immediately lowered my dosage of both Risperdal and Depakote. Then he worked with me to taper off the meds slowly.''

But even this doctor didn't recommend that Cohen go completely off the medications ' so, he said, ''I went off them on my own.''

''I found what works for me ' true alternatives that keep me healthy,'' Cohen said. ''I don't think they are much different than anybody else ' so-called normal people'': getting enough sleep and exercise, having a loving relationship and supportive family and friends, keeping a diet low in sugar and caffeine, having meaningful work to do during the day, enjoying the outdoors and literature.

With this lifestyle, Cohen said, he was able to complete his master's degree. He now works as a career initiatives coordinator at the Western Massachusetts Training Consortium in Holyoke, advocating for others with mental illness. He also recently got married.

''I'm a lot more in touch with myself now,'' Cohen said. ''If I feel myself getting stressed out over work or a family issue, I know to step away from the situation until I am in a better frame of mind.'' He said since he began his new regimen, there have been no relapses of his bipolar symptoms.

While Cohen apparently has been successful in avoiding medication, psychologist Michael Sherry said it is difficult to do what he has done. ''It takes a lot of self-awareness... a strength of character. That would take a fair amount of ego strength,'' said Sherry, who works at the Behavioral Health Network in Springfield, a community mental health agency that provides services for psychiatric-related problems.

But with support, Cohen believes, others can have similar success. Buoyed by an increasing body of research supporting that claim, and a nationwide network of like-minded people, Cohen says that is what he and Hall hope Freedom Center provides with its various support and relaxation groups, and resources such as an informational Web site and online chat room.

THE CENTER IS ALSO working to influence the policies of agencies in the area that work with the mentally ill. Since the center was formed, members have cajoled, prodded, coerced and even infuriated leaders of the local mental health establishment with their insistence that the agencies allow more treatment alternatives for their clients.

In the process, they say, they have butted heads more than once with officials at ServiceNet, a social service agency in Hampshire and Franklin counties and in the North Quabbin area that provides mental health services.

Freedom Center advocates have charged that ServiceNet forcibly medicates some clients. Specifically at issue in the Freedom Center claim are ServiceNet patients who are under a court order, known as a Rogers order, to take antipsychotic medication.

In a recent interview, Susan L. Stubbs, the CEO of ServiceNet, said clients who refuse to take psychiatric medication are not forced to do so. She said the Rogers order has no real ''teeth'' once a patient is discharged from a hospital setting, and that the order is not enforced by ServiceNet.

Stubbs said that while she agrees that medication is not always the answer for every mentally ill client, there are times when it is ''absolutely appropriate.''

''The goal is to be drug-free, whether it's cigarettes, psychotropic drugs or even aspirin,'' Stubbs said. ''But there are some for whom medications have given them a life ... yes, they have some side effects, but so do cancer medications. That doesn't mean you shouldn't take them if they'll save your life.''

''This is not a black and white issue, a right or wrong issue,'' Stubbs said. ''It's a tough issue.''

NOT ALL SERVICENET clients take medications for their illnesses. Two who do, however, spoke to the Gazette recently, in a meeting arranged and attended by Stubbs and other ServiceNet workers.

One of them, Marilyn Abbott, said the drug Clozaril has helped her control the confusion and delusions caused by her schizophrenia. Before she began taking the drug 14 years ago, she said, she had a compulsion to kill, an urge she believes she would have followed if not for the care and services she has received from ServiceNet ' and the antipsychotic medications.

''I committed arson ... I poisoned animals,'' said Abbott, 54, who lives in Amherst House, a residential treatment program run by ServiceNet.

Abbott said she even had a plan to poison people: ''I was going to take [tainted] cookies to church and put the cookies on the table with other people's desserts.''

Her road to mental illness, she said, was fraught with trauma ' including sexual abuse.

In college, she says, she was an outwardly successful student who played tennis, ran track and played piano and organ. But, she said, she was dogged by murderous thoughts. By 1990, those thoughts and her behavior had become more alarming, she said, and she was hospitalized at Cooley Dickinson Hospital in Northampton. There she was diagnosed as schizophrenic, a condition often marked by delusional thinking accompanied by voices and visions that do not exist. Committed to the former Northampton State Hospital, she remained there until 1992, when she moved into the ServiceNet house in Amherst.

Abbott said the Clozaril she takes to reduce her symptoms makes her drool at night, but she said the benefits ' clearer thinking and less confusion ' outweigh the costs. She said her life is placid now. Though she no longer plays the piano, she said she enjoys occasional trips to Tanglewood with ServiceNet staff.

''I have turned around 180 degrees,'' Abbott said. ''They have eliminated my frustration level. They helped with many things that were mountains to me, and reduced them to molehills.''

Likewise, ServiceNet client Becky Cehura said she wanted nothing more than to quiet the voices in her head ' and she credits her medications with helping her to do that.

Cehura said she was 18 years old and living in a boardinghouse in Easthampton when she was first diagnosed as psychotic.

''I was delusional,'' said Cehura, now 30. ''When I was upset, I would have a little conversation with the voices in my head that I thought were real.''

As her neighbors became increasingly concerned, reporting her to the police, Cehura was developing full-blown schizophrenia. Her troubles culminated one day in downtown Easthampton, she said, when she thought she was an undercover police officer, disguised as a prostitute.

''I took my clothes off in an Easthampton park,'' said Cehura. She ended up in the psychiatric ward of a hospital, where she was diagnosed as schizophrenic.

After spending time in ''lots of psych wards,'' Cehura said, she finally connected with ServiceNet programs, where doctors prescribed Clozaril.

''It cleared my head,'' Cehura said. ''I stopped having delusions. I stopped talking to the voices in my head.'' Cehura has also been diagnosed with obsessive-compulsive disorder, for which she takes Zoloft.

With ServiceNet's help, said Cehura, she has gradually gotten back on her feet.

''ServiceNet got me on the proper medication,'' Cehura said. ''From then I took baby steps to grow.'' It took awhile to find the right combination of medications, she said. ''Meds are trial and error ... Some think you can stop your meds and do daily things. That's not realistic,'' Cehura said. ''I can't go off my meds. I will go backward and I don't want to go backward.''

While Cehura said the Clozaril she takes sedates her, she is willing to tolerate the side effect. ''I live a normal life because of my meds,'' she said. ''It takes a lot of personal strength. I still have a long way to go ... [but] I'm not doing weird things anymore.''

WHILE CEHURA PREFERS her life as it is, David Burns, 57, who, like other Freedom Center members, calls himself ''a psychiatric survivor,'' said some of ''those weird things'' people do tend to frighten the public. But, he maintains, in most cases that fear is unfounded.

''What many call ´┐¬biochemically defective' is really an ordinary human experience,'' said Burns. When that is coupled with times of crisis or extreme stress, behaviors may become unusual, he said. But unless the behavior that results becomes threatening, he believes, it should be considered a normal part of living.

Taking a page from the work of R.D. Laing, a Scottish therapist and author of the book ''The Divided Self,'' who challenged the accepted definition of schizophrenia, Burns said people should be ''free to explore'' those extreme states.

But, Burns said, ''The community responds to that idea with fear.'' It is society's inability to understand and support those extreme states that further aggravates the problem.

While Freedom Center advocates acknowledge there are times when the behavior of the mentally ill can be violent or threatening, they stress that violence is found in all populations. The public's expectation that the mentally ill will automatically be violent ' or that hospitalization and medication is the only solution if they are ' is unfounded, said Burns.

Northampton psychologist Michael Sherry said that in this culture, a great premium is placed on conformity.

In the United States, treatment of those afflicted with mental illness, particularly schizophrenia, tends to be aggressive, Sherry said, largely because there is no place for anyone whose behavior significantly differs from the mainstream. He said schizophrenia, which initially strikes primarily in the teenage or early adult years, knocks the afflicted out of the social and economic running.

''Once you fall from your social niche ' the economic marketplace ' there is very little place left in our society to become something,'' he said. ''You can't be different.''

But even with the use of the antipsychotic medications, those with schizophrenia ''rarely return to their niche in this culture,'' said Sherry.

A study done recently at Mount Sinai School of Medicine in New York City showed that fewer than 10 percent of schizophrenia patients ever get a regular job or live independently.

While the mainstream medical community continues to view medication as an integral part of effective treatment of psychiatric diseases, Freedom Center advocates say they hope to open a residential program in Hampshire County, based on Loren Mosher's Soteria House.

Before his death, Mosher was a mentor to those at Freedom Center, encouraging them to continue his work.

''Those labeled mentally ill are made into surplus people then thrown in the wastebasket,'' Mosher said. ''That's not the way a civilized society ought to behave.''

Freedom Center co-founder Hall said, although many who participate in the center's programs continue to take psychotropic medications, a Soteria-style home here would provide a place for people to try other ways to handle mental health problems.

In the meantime, he said, he and others at Freedom Center, will continue to speak out about the need for alternative treatments for mental illness.

''Our motto is ´┐¬Nothing about us, without us,' '' said Hall. ''We are going to get our voices heard.''

Kathleen Mellen can be reached at kmellen@gazettenet.com.



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