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Drug Abuse: Antipsychotics in Nursing HomesBy Jan Goodwin, AARP Bulletin, 
These dangerous medications are prescribed at an alarming rate without the patient’s consent
When Patricia Thomas, 79, went into a Ventura, Calif.,nursing home with a broken pelvis, the only prescriptions she used were for blood pressure and cholesterol, and an inhaler for her pulmonary disease. By the time she was discharged 18 days later, she “wasn’t my mother anymore,” says Kathi Levine, 57, of Carpinteria, Calif. “She was withdrawn, slumped in a wheelchair with her head down, chewing on her hand, her speech garbled.” Within weeks, she was dead.
Thomas, a former executive assistant, had been given so many heavy-duty medications, including illegally administered antipsychotics, by the Ventura Convalescent Hospital in November of 2010 that she could no longer function. If one drug caused sleeplessness and anxiety, she was given a different medication to counteract those side effects. If yet another drug induced agitation or the urge to constantly move, she was medicated again for that.
"Yes, my mom had Alzheimer’s, but she wasn’t out of it when she went into the nursing home. She could dress and feed herself, walk on her own. You could have a conversation with her,” says Levine. “My mother went into Ventura for physical therapy. Instead, she was drugged up to make her submissive. I believe that my mother died because profit and greed were more important than people.”
A Ventura County Superior Court judge agreed that Levine had a legitimate complaint against the nursing home. In May, attorneys from the law firm Johnson Moore in Thousand Oaks, Calif., joined by lawyers from AARP Foundation, agreed to a settlement in an unprecedented class-action suit against the facility for using powerful and dangerous drugs without the informed consent of residents or family members. “It is the first case of its kind in the country, and hopefully we can replicate this nationwide,” says attorney Kelly Bagby, senior counsel for AARP Foundation Litigation.
A national problem
Tragically, what happened to Patricia Thomas is not an isolated incident. According to Charlene Harrington, professor of nursing and sociology at the University of California, San Francisco, as many as 1 in 5 patients in the nation’s 15,500 nursing homes are given antipsychotic drugs that are not only unnecessary, but also extremely dangerous for older patients. The problem, experts say, stems from inadequate training and chronic understaffing, as well as an aggressive push by pharmaceutical companies to market their products.
"The misuse of antipsychotic drugs as chemical restraints is one of the most common and long-standing, but preventable, practices causing serious harm to nursing home residents today," says Toby Edelman, an attorney at the Center for Medicare Advocacy in Washington, D.C. "When nursing facilities divert funds from the care of residents to corporate overhead and profits, the human toll is enormous."
Kickbacks to doctors
Last November, in what the U.S. Department of Justice called “one of the largest health care fraud settlements in U.S. history,” Johnson & Johnson and its subsidiaries were fined more than $2.2 billion to resolve criminal and civil charges because of their aggressive marketing of drugs, including antipsychotics, to nursing homes, when they knew the drugs had not been approved by the U.S. Food and Drug Administration (FDA) as safe and effective for a general elderly population. The corporation also allegedly paid kickbacks to physicians, as well as to Omnicare, the nation’s largest long-term-care pharmacy provider. Omnicare pharmacists were recommending Johnson & Johnson’s drugs, including the antipsychotic Risperdal, for use by nursing home residents.
Back in 2009, Eli Lilly did the same thing with its antipsychotic Zyprexa, marketing to older people in nursing homes and assisted living facilities, federal prosecutors charged. In a settlement, the company agreed to pay $1.4 billion. “This case should serve as still another warning to all those who break the law in order to improve their profits,” Patrick Doyle, special agent in charge of the Office of Inspector General for the U.S. Department of Health and Human Services in Philadelphia, said at the time.A report released in March by the inspector general of Health and Human Services charged that one-third of Medicare patients in nursing homes suffered harm, much of which was preventable. “Too many nursing homes fail to comply with federal regulations designed to prevent overmedication, giving patients antipsychotic drugs in ways that violate federal standards for unnecessary drug use,” Inspector General Daniel Levinson said. “Government, taxpayers, nursing home residents, as well as their families and caregivers, should be outraged — and seek solutions.”Antipsychotic drugs are intended for people with severe mental illness, such as patients with schizophrenia or bipolar disorder. As such, they carry the FDA’s black-box warning that they are not intended for frail older people or patients with Alzheimer’s or dementia. In those populations, these drugs can trigger agitation, anxiety, confusion, disorientation and even death. “They can dull a patient’s memory, sap their personalities and crush their spirits,” according to a report from the California Advocates for Nursing Home Reform.
Kept in the dark
What’s more, the law requires “informed consent” by a patient or, if that is no longer possible, by his or her family before such drugs are administered. Yet advocates say that, all too frequently, this doesn’t happen. Levine, for example, says she didn’t know about all her mother’s medications until she transferred her mom to another facility. “When I saw the list of what she’d been given, I freaked out. I was upset and angry, in tears,” she recalls.
How can such things happen? One explanation is that many facilities don’t have enough properly trained staff: Most of the patient care in nursing homes falls to certified nursing assistants (CNAs) who need as little as 75 hours of on-the-job training to get certified. “Yet if you want a license to be a hairdresser, you need 1,500 hours of training,” Harrington points out.What’s more, CNAs are paid low wages so many of them work long hours. “They are totally exhausted, with extremely heavy workloads,” she says. That leads to high employee turnover and caregivers who don’t know their patients well enough to recognize their needs.Compounding the problem, many nursing home patients require a high level of care. Some are incontinent, and an estimated 60 to 70 percent have some form of dementia. There should be one CNA for every seven patients, but in some cases, the ratio is 1 to 15 — or even more, Harrington says. There also tend to be too few physicians actually present in nursing homes. “These facilities are highly medicalized, but doctors are rarely there,” says Tony Chicotel, staff attorney for California Advocates for Nursing Home Reform. He says that because of their low rate of reimbursement from Medicare, nursing homes are too often seen as a place where few top doctors practice.The result of all this can be so-called behavior problems among patients — which is the explanation nursing homes cite for giving patients unnecessary antipsychotic drugs, according to the U.S. Centers for Medicare and Medicaid Services (CMS). And pharmaceutical companies have been aggressively marketing their products as an easy and effective way to control these issues.
"There was a push by drug manufacturers, claiming these medications work for seniors when they knew, in fact, that it doubled their risk of death," Chicotel says.
CMS, which oversees the nursing homes that receive funding from federal programs, says it has been working to correct deficiencies in nursing facilities, including the inappropriate use of medications. The agency achieved the goal of reducing the inappropriate use of antipsychotic drugs by 15 percent over a recent two-year period, and hopes to get to a 30 percent reduction in the next few years, according to spokesman Thomas Hamilton. But Edelman points out that initial goal was reached more than a year late, and some 300,000 patients are still receiving the drugs inappropriately. Hamilton acknowledges that more needs to be done, but lack of funding from Congress is making even the most preliminary work difficult.
A better way
Fortunately, a growing number of nursing homes have begun to look for more effective — and more humane — ways to care for patients. Better training for caregivers is key: According to Cheryl Phillips, M.D., a geriatrician at LeadingAge, an organization representing nonprofit services for older people, nursing home staff can be trained to deal with behavior issues thoughtfully and creatively, without resorting to drugs.
She cites an example of a male patient who was spending his days in a noisy nursing home activity room. One day, he grew more and more agitated and tripped an aide with his cane. To calm him down, the staff took him to his private quarters. Over the following days, his behavior in the activity room became increasingly aggressive; he began randomly hitting caregivers and fellow patients. Each time, he was taken away to spend time in his room.
"The staff initially thought he had become violent and needed an antipsychotic," Phillips recalls. "But they ultimately realized that the cacophony in the activity room was stressing him out. Caregivers inadvertently rewarded him by giving him quiet time in his room, which is what he wanted. When they did it repetitively, they reinforced his aggressive behavior." Once the staff discussed the problem and began finding peaceful activities for the patient, the problem was solved — no drugs needed.
Putting patients first
Another success story is the Beatitudes facility in Phoenix, which dramatically changed its way of handling patients with dementia based on Tom Kitwood’s book Dementia Care Reconsidered: The Person Comes First. “What happens here is not for our systems, our convenience, but for the people we care for,” says Tena Alonzo, the director of education and research at Beatitudes. “People with dementia have disturbances in their sleep/wake cycle, so we let them be comfortable and decide when they want to sleep or eat, or not. Or how they want to spend their time,” she says. As a result, patients stop resisting care, and the facility runs more smoothly.
The Beatitudes’ philosophy is now being taught to a growing number of nursing homes around the country. “We’ve created a softer, gentler approach, acknowledging that we are not in charge of a person’s life — they are. In allowing them to retain their dignity, and adopt a comfort level of care, we’ve had better outcomes,” says Alonzo. That paradigm shift has not increased operating expenses, or required a higher staff-to-resident ratio. “We discovered that better care was better business,” Alonzo says.
For Kathi Levine and her mother, these encouraging developments are coming too late. “I want our lawsuits to impact nursing homes all over the country,” Levine says. “We need to protect our family members. They don’t have a voice, they can’t speak for themselves. So we need to speak out for them and help other people know what to look for. I want to make sure that what happened to my family doesn’t happen to anyone else.”
Jan Goodwin is an award-winning author and investigative journalist for national publications.
For more mental health resources, Click Here to access the Serious Mental Illness Blog.
Click Here to access original SMI Blog content

Drug Abuse: Antipsychotics in Nursing Homes
By Jan Goodwin, AARP Bulletin

These dangerous medications are prescribed at an alarming rate without the patient’s consent

When Patricia Thomas, 79, went into a Ventura, Calif.,nursing home with a broken pelvis, the only prescriptions she used were for blood pressure and cholesterol, and an inhaler for her pulmonary disease. By the time she was discharged 18 days later, she “wasn’t my mother anymore,” says Kathi Levine, 57, of Carpinteria, Calif. “She was withdrawn, slumped in a wheelchair with her head down, chewing on her hand, her speech garbled.” Within weeks, she was dead.

Thomas, a former executive assistant, had been given so many heavy-duty medications, including illegally administered antipsychotics, by the Ventura Convalescent Hospital in November of 2010 that she could no longer function. If one drug caused sleeplessness and anxiety, she was given a different medication to counteract those side effects. If yet another drug induced agitation or the urge to constantly move, she was medicated again for that.

"Yes, my mom had Alzheimer’s, but she wasn’t out of it when she went into the nursing home. She could dress and feed herself, walk on her own. You could have a conversation with her,” says Levine. “My mother went into Ventura for physical therapy. Instead, she was drugged up to make her submissive. I believe that my mother died because profit and greed were more important than people.”

A Ventura County Superior Court judge agreed that Levine had a legitimate complaint against the nursing home. In May, attorneys from the law firm Johnson Moore in Thousand Oaks, Calif., joined by lawyers from AARP Foundation, agreed to a settlement in an unprecedented class-action suit against the facility for using powerful and dangerous drugs without the informed consent of residents or family members. “It is the first case of its kind in the country, and hopefully we can replicate this nationwide,” says attorney Kelly Bagby, senior counsel for AARP Foundation Litigation.

A national problem

Tragically, what happened to Patricia Thomas is not an isolated incident. According to Charlene Harrington, professor of nursing and sociology at the University of California, San Francisco, as many as 1 in 5 patients in the nation’s 15,500 nursing homes are given antipsychotic drugs that are not only unnecessary, but also extremely dangerous for older patients. The problem, experts say, stems from inadequate training and chronic understaffing, as well as an aggressive push by pharmaceutical companies to market their products.

"The misuse of antipsychotic drugs as chemical restraints is one of the most common and long-standing, but preventable, practices causing serious harm to nursing home residents today," says Toby Edelman, an attorney at the Center for Medicare Advocacy in Washington, D.C. "When nursing facilities divert funds from the care of residents to corporate overhead and profits, the human toll is enormous."

Kickbacks to doctors

Last November, in what the U.S. Department of Justice called “one of the largest health care fraud settlements in U.S. history,” Johnson & Johnson and its subsidiaries were fined more than $2.2 billion to resolve criminal and civil charges because of their aggressive marketing of drugs, including antipsychotics, to nursing homes, when they knew the drugs had not been approved by the U.S. Food and Drug Administration (FDA) as safe and effective for a general elderly population. The corporation also allegedly paid kickbacks to physicians, as well as to Omnicare, the nation’s largest long-term-care pharmacy provider. Omnicare pharmacists were recommending Johnson & Johnson’s drugs, including the antipsychotic Risperdal, for use by nursing home residents.

Back in 2009, Eli Lilly did the same thing with its antipsychotic Zyprexa, marketing to older people in nursing homes and assisted living facilities, federal prosecutors charged. In a settlement, the company agreed to pay $1.4 billion. “This case should serve as still another warning to all those who break the law in order to improve their profits,” Patrick Doyle, special agent in charge of the Office of Inspector General for the U.S. Department of Health and Human Services in Philadelphia, said at the time.A report released in March by the inspector general of Health and Human Services charged that one-third of Medicare patients in nursing homes suffered harm, much of which was preventable. “Too many nursing homes fail to comply with federal regulations designed to prevent overmedication, giving patients antipsychotic drugs in ways that violate federal standards for unnecessary drug use,” Inspector General Daniel Levinson said. “Government, taxpayers, nursing home residents, as well as their families and caregivers, should be outraged — and seek solutions.”Antipsychotic drugs are intended for people with severe mental illness, such as patients with schizophrenia or bipolar disorder. As such, they carry the FDA’s black-box warning that they are not intended for frail older people or patients with Alzheimer’s or dementia. In those populations, these drugs can trigger agitation, anxiety, confusion, disorientation and even death. “They can dull a patient’s memory, sap their personalities and crush their spirits,” according to a report from the California Advocates for Nursing Home Reform.

Kept in the dark

What’s more, the law requires “informed consent” by a patient or, if that is no longer possible, by his or her family before such drugs are administered. Yet advocates say that, all too frequently, this doesn’t happen. Levine, for example, says she didn’t know about all her mother’s medications until she transferred her mom to another facility. “When I saw the list of what she’d been given, I freaked out. I was upset and angry, in tears,” she recalls.

How can such things happen? One explanation is that many facilities don’t have enough properly trained staff: Most of the patient care in nursing homes falls to certified nursing assistants (CNAs) who need as little as 75 hours of on-the-job training to get certified. “Yet if you want a license to be a hairdresser, you need 1,500 hours of training,” Harrington points out.What’s more, CNAs are paid low wages so many of them work long hours. “They are totally exhausted, with extremely heavy workloads,” she says. That leads to high employee turnover and caregivers who don’t know their patients well enough to recognize their needs.Compounding the problem, many nursing home patients require a high level of care. Some are incontinent, and an estimated 60 to 70 percent have some form of dementia. There should be one CNA for every seven patients, but in some cases, the ratio is 1 to 15 — or even more, Harrington says. There also tend to be too few physicians actually present in nursing homes. “These facilities are highly medicalized, but doctors are rarely there,” says Tony Chicotel, staff attorney for California Advocates for Nursing Home Reform. He says that because of their low rate of reimbursement from Medicare, nursing homes are too often seen as a place where few top doctors practice.The result of all this can be so-called behavior problems among patients — which is the explanation nursing homes cite for giving patients unnecessary antipsychotic drugs, according to the U.S. Centers for Medicare and Medicaid Services (CMS). And pharmaceutical companies have been aggressively marketing their products as an easy and effective way to control these issues.

"There was a push by drug manufacturers, claiming these medications work for seniors when they knew, in fact, that it doubled their risk of death," Chicotel says.

CMS, which oversees the nursing homes that receive funding from federal programs, says it has been working to correct deficiencies in nursing facilities, including the inappropriate use of medications. The agency achieved the goal of reducing the inappropriate use of antipsychotic drugs by 15 percent over a recent two-year period, and hopes to get to a 30 percent reduction in the next few years, according to spokesman Thomas Hamilton. But Edelman points out that initial goal was reached more than a year late, and some 300,000 patients are still receiving the drugs inappropriately. Hamilton acknowledges that more needs to be done, but lack of funding from Congress is making even the most preliminary work difficult.

A better way

Fortunately, a growing number of nursing homes have begun to look for more effective — and more humane — ways to care for patients. Better training for caregivers is key: According to Cheryl Phillips, M.D., a geriatrician at LeadingAge, an organization representing nonprofit services for older people, nursing home staff can be trained to deal with behavior issues thoughtfully and creatively, without resorting to drugs.

She cites an example of a male patient who was spending his days in a noisy nursing home activity room. One day, he grew more and more agitated and tripped an aide with his cane. To calm him down, the staff took him to his private quarters. Over the following days, his behavior in the activity room became increasingly aggressive; he began randomly hitting caregivers and fellow patients. Each time, he was taken away to spend time in his room.

"The staff initially thought he had become violent and needed an antipsychotic," Phillips recalls. "But they ultimately realized that the cacophony in the activity room was stressing him out. Caregivers inadvertently rewarded him by giving him quiet time in his room, which is what he wanted. When they did it repetitively, they reinforced his aggressive behavior." Once the staff discussed the problem and began finding peaceful activities for the patient, the problem was solved — no drugs needed.

Putting patients first

Another success story is the Beatitudes facility in Phoenix, which dramatically changed its way of handling patients with dementia based on Tom Kitwood’s book Dementia Care Reconsidered: The Person Comes First. “What happens here is not for our systems, our convenience, but for the people we care for,” says Tena Alonzo, the director of education and research at Beatitudes. “People with dementia have disturbances in their sleep/wake cycle, so we let them be comfortable and decide when they want to sleep or eat, or not. Or how they want to spend their time,” she says. As a result, patients stop resisting care, and the facility runs more smoothly.

The Beatitudes’ philosophy is now being taught to a growing number of nursing homes around the country. “We’ve created a softer, gentler approach, acknowledging that we are not in charge of a person’s life — they are. In allowing them to retain their dignity, and adopt a comfort level of care, we’ve had better outcomes,” says Alonzo. That paradigm shift has not increased operating expenses, or required a higher staff-to-resident ratio. “We discovered that better care was better business,” Alonzo says.

For Kathi Levine and her mother, these encouraging developments are coming too late. “I want our lawsuits to impact nursing homes all over the country,” Levine says. “We need to protect our family members. They don’t have a voice, they can’t speak for themselves. So we need to speak out for them and help other people know what to look for. I want to make sure that what happened to my family doesn’t happen to anyone else.”

Jan Goodwin is an award-winning author and investigative journalist for national publications.

For more mental health resources, Click Here to access the Serious Mental Illness Blog.

Filed under drug drugs med meds medication medications antipsychotic psychosis psychotic schizophrenia schizophrenic abilify psychiatry psychology counseling social work mental health mental illness mental health illness recovery healthy wellness mind body brain treat treatment therapy

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Two Icelandic Stories: Recovery from Schizophrenia/Depression without Medication in Iceland
By Daniel Mackler

Author’s description: Here are the stories of two people, Rósa and Hrannar, who were in the Icelandic mental health system. Both found alternative ways of finding health, getting out of psychiatry, and getting and staying off psychiatric medication. I filmed them on a beach an hour from the capital, Reykjavik, while I was visiting Iceland — on the Solstice, June 21, a day in which it stays light out for 24 hours a day. What better day to make a film of hope!

(P.S. The “plumes of smoke” in the background at certain points in the film — such as at 4:08 and 5:39 — are actually steam vents from natural hot springs which occur all over Iceland.)

Here are links to two Icelandic organizations the struggle for the rights of people in the mental health system:
http://www.gedhjalp.is/
http://www.hugarafl.is/

Author’s website: http://www.wildtruth.net

For more mental health resources, Click Here to access the Serious Mental Illness Blog.

Filed under recovery hope recover treatment schizophrenia schizophrenic depression depressed sad sadness mood emotion emotions feeling feelings thought thoughts mental health healthy health mind body brain wellness daniel mackler story stories film documentary video

37 notes

It Gets Better!By Bertel Rüdinger, Mad in America
A little more than 10 years ago, when I was 29 and 2 weeks away from turning 30, I was a patient in the psychiatric system here in Copenhagen. I am a pharmacist and I specialized in neurochemistry and psychotropics throughout my studies.
While I was working in the labs at The Royal Danish School of Pharmacy I was intent on getting a job as a medicinal chemist at Lundbeck – the Danish pharmaceutical company behind Celexa and Lexapro and in their own words the only company specializing solely in developing drugs for the treatment of neurological and psychiatric disorders.
At the university we were taught that psychiatric disorders were diseases just like diabetes and hypotension. We were told all the ‘truths’ that the psychiatrists now admit were myths about the so-called chemical imbalances in the brain and the clear genetic component of schizophrenia and other psychiatric disorders.
I have been hearing voices since I was 14 and I always knew that if I told anybody about them there was a significant risk that I would be labeled schizophrenic. I had kept that part of my life hidden for many years. I was so skilled at disregarding the fact that I heard voices that I could joke with my friends about “not ending up in there” when we passed the local psychiatric ward.
Life is not without a sense of irony. I never got to the point where I could contribute to Lundbeck’s prosperity in any other way than as a customer at my local pharmacy and I did end up in that local psychiatric ward. The first time I ‘visited’ that ward I stayed for 8 long months.
In June 2004 I had just moved back to Copenhagen and was living with my mother after an 11 month stint at various psychiatric wards across Denmark. In those days I rarely wrote anything and I have very little memory of writing this letter to myself. Yet somehow throughout the years I managed to keep safe the envelope that I had carefully labeled, “To be opened June 19th 2014”.
I don’t remember writing the letter. That process is bogged down in a neuroleptic mist and benzodiazepine-induced haze but somehow I had both the strength and the insight to write this letter to my future self.
I remember seeing the envelope when I moved to a supported living facility in 2006 and again in 2009 when I moved into my own apartment and lastly when I bought my current home and moved there in 2011.
In 2006 and in 2009 I was still heavily medicated so I quickly forgot about the envelope and in 2011 I had finally come off the meds and life was so full of new impressions, colors and conquests that I almost forgot about the letter.
Wednesday June 18th 2014 I opened the letter. It was a poorly phrased note telling myself that if I was still a patient in the psychiatric system and on disability there was really no reason to have my 40th birthday. I would then have spent more than 12 years as a psychiatric patient and if they hadn’t found the right combination of meds by then I was going to write a goodbye letter to my family and take the necessary overdose.
In 2004 my medication was a crazy mix of Risperdal, Zeldox, Nortriptyline, Mirtazapine, Chlorpromazine, Clonazepam and Movane and yet despite being so heavily drugged, I was clear enough in my head to know that never waking up again would be easy.
Earlier in June 2004 my family and I had had the first of many talks with the psychiatrist who emphasized that I was chronically ill, that I would never work again, that I would always need psychiatric care and the necessary psychiatric drugs and that I had to accept that life would be very different from what I had dreamt of.
I remember my mum telling me afterwards not to listen to the psychiatrists. “Doctors say so many things and no one knows what the future brings.”
I listened to my mother’s advice but had made a decision that if ten years hadn’t brought sufficient improvement then I had earned the right to end this misery.
Even though psychiatrists are more skilled at predicting the future than they are at discovering the cause of ‘schizophrenia,’ the dismal future the psychiatrist predicted in that small office in 2004 was not to be.
In 2007 my mum needed a homepage and even though I could not do programing my mum asked me to design it. When I presented the design to the woman who eventually programmed it, I can remember thinking that coding a web page can’t be so difficult if she can do it.
She might not have been a computer genius but she excelled at billing and her invoices showed me a promising way to earn some extra money. In November and December 2007 I started taking all the e-learning courses about web programming I could get and in February 2008 I attended an evening class on advanced HTML programming. In May 2008 I started the first of five six-week-courses on web design and DTP and that changed my future. In January 2009 I moved out of the supported living facility where I had stayed for almost 3 years.
On the 15th of March I started working as a webmaster at a psychiatric residential home where I learned about recovery and heard about a completely different approach to mental distress. The fact that severe mental distress and traumatic experiences were linked resonated deeply within me. When I became part of the Hearing Voices Network in Denmark I learned of their approach in dealing with the voices. I created a homepage for the Hearing Voices Network in Denmark and in October 2009 I attended the first International Hearing  Voices Conference in Maastricht. I suddenly realized just how emotionally numb the drugs had made me as I heard Jacqui Dillon telling her story and saw how it affected the people around me, while I was more focused on getting my next shot of caffeine.
When I got back from Maastricht I started the process of tapering off my medication. I also came back with a clear understanding that as a pharmacist with personal experience of about 40% of the psychiatric medications used in Denmark, I could play a valuable role in helping people who felt handicapped by their psychiatric medication.
I spoke with Jørn Eriksen, the head of the facility where I work, about changing my job from webmaster to becoming the first clinical pharmacist working with users in social psychiatry in Europe.
For the last four and a half years I have been fighting for the rights of the mentally distressed to get off their medication and have helped many people find a new life without psychotropics. I have seen how people change and thrive as they come off their medication and have supported them in their consultations with psychiatrists throughout the country.
Dan Savage launched the ‘It gets better’ campaign after three LGBT teens committed suicide all within three months. The campaign focuses on bringing the message of hope to gay teens and helping them understand that life might be hard right now but if they make it through the hell of high school, then what seems like a troubled life will change and they will have a chance to fulfill their dreams of a good life.
The campaign features videos of individual LGBTs and LGBT celebrities and allies telling their personal stories as well as corporations promising gay rights by ensuring a fair and inclusive work environment for LGBT people and politicians promoting their views on how to improve civil rights for the LGBT community.
For a long time now I have wanted to launch a similar campaign for people undergoing psychiatric treatment. Having experienced the process of coming out as a gay man and the stigma associated with having a psychiatric label, my experience is that coming out as gay is easy compared to fighting the stigma associated with one or more psychiatric diagnoses.
Mad In America is abundant with stories of hope and recovery and it becomes clear that for those who want to recover from mental distress they must stop the chemical treatment and their beliefs in a biological cause.
For those who read this post and are still on medication – trust me, IT GETS BETTER – even if right now it seems impossible. Even if the all-knowing men and women in white tell you differently. Even if your family tells you you’re chemically imbalanced. Even if staying awake more than 6 hours a day seems impossible or writing messages to your future selves takes more energy than you have − IT GETS BETTER!
It gets better the day you leave the psychiatric system and find your own way – not back to who you were but to the beautiful person you are without the drugs!
Photo credit: ivoh.org
For more mental health resources, Click Here to access the Serious Mental Illness Blog.
Click Here to access original SMI Blog content

It Gets Better!
By Bertel Rüdinger, Mad in America

A little more than 10 years ago, when I was 29 and 2 weeks away from turning 30, I was a patient in the psychiatric system here in Copenhagen. I am a pharmacist and I specialized in neurochemistry and psychotropics throughout my studies.

While I was working in the labs at The Royal Danish School of Pharmacy I was intent on getting a job as a medicinal chemist at Lundbeck – the Danish pharmaceutical company behind Celexa and Lexapro and in their own words the only company specializing solely in developing drugs for the treatment of neurological and psychiatric disorders.

At the university we were taught that psychiatric disorders were diseases just like diabetes and hypotension. We were told all the ‘truths’ that the psychiatrists now admit were myths about the so-called chemical imbalances in the brain and the clear genetic component of schizophrenia and other psychiatric disorders.

I have been hearing voices since I was 14 and I always knew that if I told anybody about them there was a significant risk that I would be labeled schizophrenic. I had kept that part of my life hidden for many years. I was so skilled at disregarding the fact that I heard voices that I could joke with my friends about “not ending up in there” when we passed the local psychiatric ward.

Life is not without a sense of irony. I never got to the point where I could contribute to Lundbeck’s prosperity in any other way than as a customer at my local pharmacy and I did end up in that local psychiatric ward. The first time I ‘visited’ that ward I stayed for 8 long months.

In June 2004 I had just moved back to Copenhagen and was living with my mother after an 11 month stint at various psychiatric wards across Denmark. In those days I rarely wrote anything and I have very little memory of writing this letter to myself. Yet somehow throughout the years I managed to keep safe the envelope that I had carefully labeled, “To be opened June 19th 2014”.

I don’t remember writing the letter. That process is bogged down in a neuroleptic mist and benzodiazepine-induced haze but somehow I had both the strength and the insight to write this letter to my future self.

I remember seeing the envelope when I moved to a supported living facility in 2006 and again in 2009 when I moved into my own apartment and lastly when I bought my current home and moved there in 2011.

In 2006 and in 2009 I was still heavily medicated so I quickly forgot about the envelope and in 2011 I had finally come off the meds and life was so full of new impressions, colors and conquests that I almost forgot about the letter.

Wednesday June 18th 2014 I opened the letter. It was a poorly phrased note telling myself that if I was still a patient in the psychiatric system and on disability there was really no reason to have my 40th birthday. I would then have spent more than 12 years as a psychiatric patient and if they hadn’t found the right combination of meds by then I was going to write a goodbye letter to my family and take the necessary overdose.

In 2004 my medication was a crazy mix of Risperdal, Zeldox, Nortriptyline, Mirtazapine, Chlorpromazine, Clonazepam and Movane and yet despite being so heavily drugged, I was clear enough in my head to know that never waking up again would be easy.

Earlier in June 2004 my family and I had had the first of many talks with the psychiatrist who emphasized that I was chronically ill, that I would never work again, that I would always need psychiatric care and the necessary psychiatric drugs and that I had to accept that life would be very different from what I had dreamt of.

I remember my mum telling me afterwards not to listen to the psychiatrists. “Doctors say so many things and no one knows what the future brings.”

I listened to my mother’s advice but had made a decision that if ten years hadn’t brought sufficient improvement then I had earned the right to end this misery.

Even though psychiatrists are more skilled at predicting the future than they are at discovering the cause of ‘schizophrenia,’ the dismal future the psychiatrist predicted in that small office in 2004 was not to be.

In 2007 my mum needed a homepage and even though I could not do programing my mum asked me to design it. When I presented the design to the woman who eventually programmed it, I can remember thinking that coding a web page can’t be so difficult if she can do it.

She might not have been a computer genius but she excelled at billing and her invoices showed me a promising way to earn some extra money. In November and December 2007 I started taking all the e-learning courses about web programming I could get and in February 2008 I attended an evening class on advanced HTML programming. In May 2008 I started the first of five six-week-courses on web design and DTP and that changed my future. In January 2009 I moved out of the supported living facility where I had stayed for almost 3 years.

On the 15th of March I started working as a webmaster at a psychiatric residential home where I learned about recovery and heard about a completely different approach to mental distress. The fact that severe mental distress and traumatic experiences were linked resonated deeply within me. When I became part of the Hearing Voices Network in Denmark I learned of their approach in dealing with the voices. I created a homepage for the Hearing Voices Network in Denmark and in October 2009 I attended the first International Hearing  Voices Conference in Maastricht. I suddenly realized just how emotionally numb the drugs had made me as I heard Jacqui Dillon telling her story and saw how it affected the people around me, while I was more focused on getting my next shot of caffeine.

When I got back from Maastricht I started the process of tapering off my medication. I also came back with a clear understanding that as a pharmacist with personal experience of about 40% of the psychiatric medications used in Denmark, I could play a valuable role in helping people who felt handicapped by their psychiatric medication.

I spoke with Jørn Eriksen, the head of the facility where I work, about changing my job from webmaster to becoming the first clinical pharmacist working with users in social psychiatry in Europe.

For the last four and a half years I have been fighting for the rights of the mentally distressed to get off their medication and have helped many people find a new life without psychotropics. I have seen how people change and thrive as they come off their medication and have supported them in their consultations with psychiatrists throughout the country.

Dan Savage launched the ‘It gets better’ campaign after three LGBT teens committed suicide all within three months. The campaign focuses on bringing the message of hope to gay teens and helping them understand that life might be hard right now but if they make it through the hell of high school, then what seems like a troubled life will change and they will have a chance to fulfill their dreams of a good life.

The campaign features videos of individual LGBTs and LGBT celebrities and allies telling their personal stories as well as corporations promising gay rights by ensuring a fair and inclusive work environment for LGBT people and politicians promoting their views on how to improve civil rights for the LGBT community.

For a long time now I have wanted to launch a similar campaign for people undergoing psychiatric treatment. Having experienced the process of coming out as a gay man and the stigma associated with having a psychiatric label, my experience is that coming out as gay is easy compared to fighting the stigma associated with one or more psychiatric diagnoses.

Mad In America is abundant with stories of hope and recovery and it becomes clear that for those who want to recover from mental distress they must stop the chemical treatment and their beliefs in a biological cause.

For those who read this post and are still on medication – trust me, IT GETS BETTER – even if right now it seems impossible. Even if the all-knowing men and women in white tell you differently. Even if your family tells you you’re chemically imbalanced. Even if staying awake more than 6 hours a day seems impossible or writing messages to your future selves takes more energy than you have − IT GETS BETTER!

It gets better the day you leave the psychiatric system and find your own way – not back to who you were but to the beautiful person you are without the drugs!

Photo credit: ivoh.org

For more mental health resources, Click Here to access the Serious Mental Illness Blog.

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Novel ‘Avatar Therapy’ May Silence Voices in SchizophreniaBy Deborah Brauser, Medscape Medical News
A novel treatment may help patients with schizophrenia confront and even silence the internal persecutory voices they hear, new research suggests.
Avatar therapy allows patients to choose a digital face (or “avatar”) that best resembles what they picture their phantom voice to look like. Then, after discussing ahead of time the things the voice often says to the patient, a therapist sits in a separate room and “talks” through the animated avatar shown on a computer monitor in a disguised and filtered voice as it interacts with the patient.
In addition, the therapist can also talk by microphone in a normal voice to coach the patient throughout each session.
In a pilot study of 26 patients with treatment-resistant psychosis who reported auditory hallucinations, those who received 6 half-hour sessions of avatar therapy reported a significant reduction in the frequency and volume of the internal voices ― and 3 reported that the voices had disappeared altogether.
"Opening up a dialogue between a patient and the voice they’ve been hearing is powerful. This is a way to talk to it instead of only hearing 1-way conversations," lead author and creator of the therapy program Julian Leff, MD, FRCPsych, emeritus professor at the Institute of Psychiatry in London, told meeting attendees.
"As the therapist, I’m sharing the patient’s experience and can actually hear what the patient hears. But it’s important to remind them that this is something that they created and that they are in a safe space," Dr. Leff told Medscape Medical News after his presentation.
Two presentations were given here at the International Congress of the Royal College of Psychiatrists (RCPsych) 2014 the day after the study results were released in the print edition of Psychosis.
Regaining Control
According to the investigators, 1 in 4 people who hear phantom voices fail to respond to antipsychotic medication.
Dr. Leff explained that this program started a little more than 3 years ago, after he had retired “and could start thinking clearly again.” He had been interested in the phenomenon of phantom voices for more than 40 years.
"Our mind craves meaningful input. That’s its nourishment. And if it’s deprived of nourishment, it pushes out something into the outside world," he said. "The aim of our therapy is to give the patient’s ego back its mastery over lost provinces of his mental life."
The researchers used the “off-shelf programs” Facegen for the creation of the avatar faces and Annosoft LIP-SYNC for animating the lips and mouth. They also used a novel real-time voice-morphing program for the voice matching and to let the voice of a therapist to be changed.
In fact, Dr. Leff reported that one option the program provided changed his voice into that of a woman.
After a patient chose a face/avatar from among several options, the investigators could change that face. For example, 1 patient spoke of hearing an angel talk to him but also talked about wanting to live in a world of angels. So the researchers made the avatar very stern and grim so that the patient would be more willing to confront it.
Another patient chose a “red devil” avatar and a low, booming voice to represent the aggressiveness that he had been hearing for 16 years.
For the study, 26 participants between the ages of 14 and 74 years (mean age, 37.7 years; 63% men) were selected and randomly assigned to receive either avatar therapy or treatment as usual with antipsychotic medication.
The length of time for hearing voices ranged from 3.5 years to more than 30 years, and all of the patients had very low self-esteem. Those who heard more than 1 voice were told to choose the one that was most dominant.
Pocket Therapist
During the sessions, the therapist sat in a separate room and played dual roles. He coached the participants on how to confront and talk with the avatars in his own voice, and he also voiced the avatars. All of the sessions were recorded and given to the participants on an MP3 recorder to play back if needed, to remind the patients how to confront and talk to the auditory hallucination if it reappeared.
"We told them: It’s like having a therapist in your pocket. Use it," said Dr. Leff.
All of the avatars started out appearing very stern; they talked loudly and said horrible things to match what the patients had been reportedly experiencing. But after patients learned to talk back to the faces in more confident tones, the avatars began to “soften up” and discuss issues rationally and even offer advice.
Most of the participants who received avatar therapy went on after the study to be able to start new jobs. In addition, most reported that the voices went down to whispers, and 3 patients reported that the voices stopped completely.
The patient who confronted the red devil avatar reported that the voice had disappeared after 2 sessions. At the 3-month follow-up, he reported that the voice had returned, although at night only; he was told to go to bed earlier (to fight possible fatigue) and to use the MP3 player immediately beforehand. On all subsequent follow-ups, he reported that the voice was completely gone, and he has since gone on to work abroad.
Another patient who reported past experiences of abuse asked that his avatar be created wearing sunglasses because he could not bear to look at its eyes. During his sessions, Dr. Leff told him through the avatar that what had happened to the patient was not his fault. And at the end of 5 sessions, the phantom voice disappeared altogether.
Although 1 female patient reported that her phantom voice had not gone away, it had gotten much quieter. “When we asked her why, she said, ‘The voice now knows that if it talks to me, I’ll talk back,’ ” said Dr. Leff.
"These people are giving a face to an incredibly destructive force in their mind. Giving them control to create the avatar lets them control the situation and even make friends with it," he added.
"The moment that a patient says something and the avatar responds differently than before, everything changes."
In addition, there was a significant reduction in depression scores on the Calgary Depression Scale for Schizophrenia and in suicidal ideation for the avatar participants at the 3-month follow-up assessment.
A bigger study with a proposed sample size of 140 is currently under way and is “about a quarter of the way complete,” Dr. Leff reports. Of these patients, 70 will receive avatar therapy, and 70 will receive supportive counseling.
"In order for others to master this therapy, it is necessary to construct a treatment manual and this has now been completed, in preparation for the replication study," write the investigators.
"One of its main aims is to determine whether clinicians working in a standard setting can be trained to achieve results comparable to those that emerged from the pilot study," they add.
"Fascinating" New Therapy
"I think this is really exciting. It’s a fascinating, new form of therapy," session moderator Sridevi Kalidindi, FRCPsych, consultant psychiatrist and clinical lead in rehabilitation at South London and Maudsley NHS Foundation Trust in the United Kingdom, told Medscape Medical News.
"I think it is a novel way of approaching these very challenging symptoms that people have. From the early results that have been presented, it provides hope for people that they may actually be able to improve from all of these symptoms. And we may be able to reduce their distress in quite a different way from anything we’ve ever done before."
Dr. Kalidindi, who is also chair of the Rehabilitation Faculty for the Royal College of Psychiatrists, was not involved with this research.
She added that she will be watching this ongoing program “with great interest.”
"I was very enthused to learn that more research is going on with this particularly complex group," said Dr. Kalidindi.
"This could be something for people who have perhaps not benefitted from other types of intervention. Overall, it’s fantastic."
International Congress of the Royal College of Psychiatrists (RCPsych) 2014. Presented in 2 oral sessions on June 26, 2014.
Psychosis. 2014;6:166-176. Full text
For more mental health resources, Click Here to access the Serious Mental Illness Blog.

Click Here to access original SMI Blog content

Novel ‘Avatar Therapy’ May Silence Voices in Schizophrenia
By Deborah Brauser, Medscape Medical News

A novel treatment may help patients with schizophrenia confront and even silence the internal persecutory voices they hear, new research suggests.

Avatar therapy allows patients to choose a digital face (or “avatar”) that best resembles what they picture their phantom voice to look like. Then, after discussing ahead of time the things the voice often says to the patient, a therapist sits in a separate room and “talks” through the animated avatar shown on a computer monitor in a disguised and filtered voice as it interacts with the patient.

In addition, the therapist can also talk by microphone in a normal voice to coach the patient throughout each session.

In a pilot study of 26 patients with treatment-resistant psychosis who reported auditory hallucinations, those who received 6 half-hour sessions of avatar therapy reported a significant reduction in the frequency and volume of the internal voices ― and 3 reported that the voices had disappeared altogether.

"Opening up a dialogue between a patient and the voice they’ve been hearing is powerful. This is a way to talk to it instead of only hearing 1-way conversations," lead author and creator of the therapy program Julian Leff, MD, FRCPsych, emeritus professor at the Institute of Psychiatry in London, told meeting attendees.

"As the therapist, I’m sharing the patient’s experience and can actually hear what the patient hears. But it’s important to remind them that this is something that they created and that they are in a safe space," Dr. Leff told Medscape Medical News after his presentation.

Two presentations were given here at the International Congress of the Royal College of Psychiatrists (RCPsych) 2014 the day after the study results were released in the print edition of Psychosis.

Regaining Control

According to the investigators, 1 in 4 people who hear phantom voices fail to respond to antipsychotic medication.

Dr. Leff explained that this program started a little more than 3 years ago, after he had retired “and could start thinking clearly again.” He had been interested in the phenomenon of phantom voices for more than 40 years.

"Our mind craves meaningful input. That’s its nourishment. And if it’s deprived of nourishment, it pushes out something into the outside world," he said. "The aim of our therapy is to give the patient’s ego back its mastery over lost provinces of his mental life."

The researchers used the “off-shelf programs” Facegen for the creation of the avatar faces and Annosoft LIP-SYNC for animating the lips and mouth. They also used a novel real-time voice-morphing program for the voice matching and to let the voice of a therapist to be changed.

In fact, Dr. Leff reported that one option the program provided changed his voice into that of a woman.

After a patient chose a face/avatar from among several options, the investigators could change that face. For example, 1 patient spoke of hearing an angel talk to him but also talked about wanting to live in a world of angels. So the researchers made the avatar very stern and grim so that the patient would be more willing to confront it.

Another patient chose a “red devil” avatar and a low, booming voice to represent the aggressiveness that he had been hearing for 16 years.

For the study, 26 participants between the ages of 14 and 74 years (mean age, 37.7 years; 63% men) were selected and randomly assigned to receive either avatar therapy or treatment as usual with antipsychotic medication.

The length of time for hearing voices ranged from 3.5 years to more than 30 years, and all of the patients had very low self-esteem. Those who heard more than 1 voice were told to choose the one that was most dominant.

Pocket Therapist

During the sessions, the therapist sat in a separate room and played dual roles. He coached the participants on how to confront and talk with the avatars in his own voice, and he also voiced the avatars. All of the sessions were recorded and given to the participants on an MP3 recorder to play back if needed, to remind the patients how to confront and talk to the auditory hallucination if it reappeared.

"We told them: It’s like having a therapist in your pocket. Use it," said Dr. Leff.

All of the avatars started out appearing very stern; they talked loudly and said horrible things to match what the patients had been reportedly experiencing. But after patients learned to talk back to the faces in more confident tones, the avatars began to “soften up” and discuss issues rationally and even offer advice.

Most of the participants who received avatar therapy went on after the study to be able to start new jobs. In addition, most reported that the voices went down to whispers, and 3 patients reported that the voices stopped completely.

The patient who confronted the red devil avatar reported that the voice had disappeared after 2 sessions. At the 3-month follow-up, he reported that the voice had returned, although at night only; he was told to go to bed earlier (to fight possible fatigue) and to use the MP3 player immediately beforehand. On all subsequent follow-ups, he reported that the voice was completely gone, and he has since gone on to work abroad.

Another patient who reported past experiences of abuse asked that his avatar be created wearing sunglasses because he could not bear to look at its eyes. During his sessions, Dr. Leff told him through the avatar that what had happened to the patient was not his fault. And at the end of 5 sessions, the phantom voice disappeared altogether.

Although 1 female patient reported that her phantom voice had not gone away, it had gotten much quieter. “When we asked her why, she said, ‘The voice now knows that if it talks to me, I’ll talk back,’ ” said Dr. Leff.

"These people are giving a face to an incredibly destructive force in their mind. Giving them control to create the avatar lets them control the situation and even make friends with it," he added.

"The moment that a patient says something and the avatar responds differently than before, everything changes."

In addition, there was a significant reduction in depression scores on the Calgary Depression Scale for Schizophrenia and in suicidal ideation for the avatar participants at the 3-month follow-up assessment.

A bigger study with a proposed sample size of 140 is currently under way and is “about a quarter of the way complete,” Dr. Leff reports. Of these patients, 70 will receive avatar therapy, and 70 will receive supportive counseling.

"In order for others to master this therapy, it is necessary to construct a treatment manual and this has now been completed, in preparation for the replication study," write the investigators.

"One of its main aims is to determine whether clinicians working in a standard setting can be trained to achieve results comparable to those that emerged from the pilot study," they add.

"Fascinating" New Therapy

"I think this is really exciting. It’s a fascinating, new form of therapy," session moderator Sridevi Kalidindi, FRCPsych, consultant psychiatrist and clinical lead in rehabilitation at South London and Maudsley NHS Foundation Trust in the United Kingdom, told Medscape Medical News.

"I think it is a novel way of approaching these very challenging symptoms that people have. From the early results that have been presented, it provides hope for people that they may actually be able to improve from all of these symptoms. And we may be able to reduce their distress in quite a different way from anything we’ve ever done before."

Dr. Kalidindi, who is also chair of the Rehabilitation Faculty for the Royal College of Psychiatrists, was not involved with this research.

She added that she will be watching this ongoing program “with great interest.”

"I was very enthused to learn that more research is going on with this particularly complex group," said Dr. Kalidindi.

"This could be something for people who have perhaps not benefitted from other types of intervention. Overall, it’s fantastic."

International Congress of the Royal College of Psychiatrists (RCPsych) 2014. Presented in 2 oral sessions on June 26, 2014.

Psychosis. 2014;6:166-176. Full text

For more mental health resources, Click Here to access the Serious Mental Illness Blog.

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Crusade for Better Mental Health: Damning report highlights schizophrenia issues in UKBy: Danny Buckland, express.co.uk
A damning report has highlighted the sub-standard care ­provided for schizophrenics.
Treatment delays, a lack of ­information, poor life expectancy and patchy GP support were condemned in research by mental health charity Sane.
It found that 63 per cent of schizophrenia patients needed five visits to doctors before getting a diagnosis and 58 per cent said they received no information about the illness and how to deal with it.
Marjorie Wallace, Sane’s chief executive, said: “It is still a condition that is feared by everyone from patients to professionals and it is a national shame that we have not improved treatment for people with schizophrenia.
“I feel very sad that I am still hearing the same stories from patients and families that made me set up Sane 25 years ago.” Schizophrenia affects about one in 100 and costs the UK £11.8 billion a year in care and lost production. Life expectancy is 15 to 20 years less than the general population.
The Living with Schizophrenia report, compiled from interviews, accepted that doctors often delayed diagnosis for fear of giving patients a stigma but it added that delays and confusion in treatment strat­egies caused mistrust among patients and heightened the risk of relapse with lengthy hospital stays.
“Inappropriate treatment has the potential to destabilize a person’s condition further,” the report said. “However, GPs and psychiatrists also have to be cautious when making a diagnosis of schizophrenia.
“Such a diagnosis can often be a very traumatic experience for many and has the potential to generate stigma as well as unwarranted pessimism.
“Our research suggests that more needs to be done to ensure appropriate services are available and people are being referred as early as possible.”
The report called for better and swifter access to psychological services to avoid hospital stays and more support for physical health to correct the life expectancy imbalance.
For more mental health resources, Click Here to access the Serious Mental Illness Blog.
Click Here to access original SMI Blog content

Crusade for Better Mental Health: Damning report highlights schizophrenia issues in UK
By: Danny Buckland, express.co.uk

A damning report has highlighted the sub-standard care ­provided for schizophrenics.

Treatment delays, a lack of ­information, poor life expectancy and patchy GP support were condemned in research by mental health charity Sane.

It found that 63 per cent of schizophrenia patients needed five visits to doctors before getting a diagnosis and 58 per cent said they received no information about the illness and how to deal with it.

Marjorie Wallace, Sane’s chief executive, said: “It is still a condition that is feared by everyone from patients to professionals and it is a national shame that we have not improved treatment for people with schizophrenia.

“I feel very sad that I am still hearing the same stories from patients and families that made me set up Sane 25 years ago.” Schizophrenia affects about one in 100 and costs the UK £11.8 billion a year in care and lost production. Life expectancy is 15 to 20 years less than the general population.

The Living with Schizophrenia report, compiled from interviews, accepted that doctors often delayed diagnosis for fear of giving patients a stigma but it added that delays and confusion in treatment strat­egies caused mistrust among patients and heightened the risk of relapse with lengthy hospital stays.

“Inappropriate treatment has the potential to destabilize a person’s condition further,” the report said. “However, GPs and psychiatrists also have to be cautious when making a diagnosis of schizophrenia.

“Such a diagnosis can often be a very traumatic experience for many and has the potential to generate stigma as well as unwarranted pessimism.

“Our research suggests that more needs to be done to ensure appropriate services are available and people are being referred as early as possible.”

The report called for better and swifter access to psychological services to avoid hospital stays and more support for physical health to correct the life expectancy imbalance.

For more mental health resources, Click Here to access the Serious Mental Illness Blog.

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