Wednesday, June 27, 2012

National Empowerment Center press release

June 26, 2012, 2:16 p.m. EDT
National Empowerment Center Celebrates 20th Anniversary, Launches Visionary Community Dialogue Project

LAWRENCE, Mass., June 26, 2012 /PRNewswire via COMTEX/ -- Celebration to include a performance of Sick by acclaimed actress Elizabeth Kenny
On Thursday, July 12, 2012, the National Empowerment Center (NEC) www.power2u.org will celebrate its 20th anniversary of work on recovery, peer-run services, and holistic alternatives for individuals who have emotional distress and mental health issues. The event will be held from 5 p.m. to 9 p.m. at the Boston University Photonics Center, 8 St. Mary's Street, Room 206, Boston, MA.
"Twenty years later, there is much to celebrate," says Daniel B. Fisher, MD, PhD, executive director of NEC and a psychiatrist who himself recovered from schizophrenia. "Recovery from mental health issues is no longer a fringe notion. NEC, working with many people and organizations that share our vision and values, has been instrumental in promoting supports and services provided by people with lived experience of mental health issues."

EC is proud to launch a visionary plan for the future, the "Community Dialogues for Recovery and Wellness" project, in close collaboration with the Foundation for Excellence in Mental Health Care. Virgil Stucker, Board Chairman of the Foundation, states: "We are deeply honored by Dr. Fisher's desire to work with us on this emerging mission and have established a Fund to help raise needed resources. We seek to attract the attention of private philanthropists who wish to join Dr. Fisher and by providing tax-deductible donations to this endeavor so that its success can be assured. Please email me at Virgil@MentalHealthExcellence.org if you are willing to help."

In this project, the principles of dialogue will be applied to strengthening relationships between individuals, improving outcomes, fostering collaboration between all health systems, and building more inclusive and wellness-oriented communities.

"The dialogue process has never been applied to mental health on a community-wide scale," says Oryx Cohen, director of NEC's Technical Assistance Center. "NEC has been piloting community dialogues within the mental health system for several years, but now wants to apply them to society at large."

The 20th anniversary celebration will feature a performance of Sick, a one-woman show performed by critically acclaimed actress Elizabeth Kenny. Often hilarious, often heartbreaking, Sick chronicles Kenny's real-life journey through a broken mental health system and the eventual recovery of her life and hope. For complete information, visit www.power2u.org/events.html.

Contact information: info4@power2u.org; Event Coordinator Judene Shelley, 978-685-1494.

SOURCE National Empowerment Center
Copyright (C) 2012 PR Newswire. All rights reserved

About “Sick”:

Elizabeth Kenny was a healthy thirty-two year-old woman who went to the doctor for a common ailment. A year and a half later, she was being escorted by hospital orderlies to a coffee shop along with the rest of the level 5 patients from the psych ward. “Sick” explores a patient’s two-year odyssey inside the most advanced healthcare system in the world — an odyssey that almost killed her. It investigates how treatment by well-meaning practitioners for a common gynecological issue plunged her into a downward spiral through the complex medical and mental health establishments.

Yet another crisis averted

What happened is this. A few weeks ago Chris and his younger brother Taylor went to see our family doctor for a check-up. I don't like this particular doctor, and the reason I don't like him is because he believes in something called "schizophrenia," and he believes that someone with schizophrenia should be on life-long meds. I don't want this guy treating Chris like the lifelong patient the doctor feels he is, but out of general laziness I haven't got around to finding another doctor for Chris. I no longer see this particular doctor myself, preferring to take my chances with kooky alternative healers and my company's annual medical. So, Chris went to the appointment and the doctor asks Chris if he's still on his meds, Chris says "no," and the doctor asks, does your psychiatrist know? and Chris waffles and is evasive, and the doctor urges Chris to tell Dr. Stern about his "non-compliance."

On Monday, my husband went to see our family doctor to pick up a prescription, and our family doctor squeals (yes, "squeals") to him about Chris and throws Ian into a panic. I am 99% sure that the doctor painted a picture of Chris as one of those schizophrenics off his meds. Ian red flag messages Dr. Stern, copies me and Chris, and all hell breaks lose. There are some things that Ian either doesn't know about or hasn't bothered to ask about, and that's one of them. Ian and I don't agree on the necessity of medication, or, putting it another way, Ian is less skeptical than I am about antipyschotic medication. Being a loyal husband, he has come a long way in the direction of my opinion, but he's not fully on board.

Thankfully, calmer heads prevailed, and one of them was Dr. Stern's. She, of course, is fully aware that Chris has been off his medication for a number of months, and she's fine with that. Here's what she wrote back (in part):

In truth, I've had some doubt about the value of the medication for a while, because I find Chris to be more authentic, with deeper insight and progressing faster while off it, but at the same time also more anxious and insecure. This is why I told him two weeks ago to take up again this very small amount of medication, just during this actual period of fluctuating anxiety......My attitude has been until now - and probably will remain like this - to let Chris judge on his own, answer questions if he asks me, and intervene more actively only when my medical experience makes me believe that the situation becomes a bit risky. Just right now, I think that it would be preferable to take 1 mg of Abilfy for a little while, but I do not sense a big danger in case Chris doesn't take it.

We could have avoided this latest drama if Chris had been more forthright with the family doctor and also told his father when asked exactly he was doing and making no apologies for it. But, Chris isn't direct. He waffles, he assumes he's guilty of something - in short, he's a perfect victim. Hiding from himself like he does only leads to more complications. Chris is still is trying to establish a self, so I guess I shouldn't be too hard on him. He's getting there, slowly.

Thursday, June 21, 2012

Almost empty nesters

Alone at last, well, for a few days at least. Taylor and Chris have been overnighting at a religous retreat/community in the mountains since Tuesday and they have one night to go! They pay a ridiculously small amount for the room and board, and they get to use the library, walk the grounds, interact with fellow travellers from all over the world, and attend the occasional lecture. Everybody chips in to prepare the food and clean up, from what I have gathered.

It's a great bonding experience for the "boys" and a rare occasion for Ian and me to have nobody underfoot. Well, almost nobody. There's Alex, our middle son. Alex has a job that is keeping him late at his office, and so it's almost like we are empty nesters. Alex is planning to move out soon. (How soon is not yet clear.) Even Chris and Dr. Stern are talking about Chris eventually moving out - possibly to rent a room in the house of one of her patients.

Dr. Stern and Chris's occupational therapist, both of whom Ian and I met with on Tuesday night, are cautiously optimistic that Chris is at a turning point, and hopefully his progress will begin to accelerate. According to the scalar energy shaman who I am seeing tomorrow, Chris is in an orange crisis zone. I know he's in a crisis zone and Dr. Stern knows he's in a crisis zone and needs skillful handling, but it's interesting that scalar energy picks up that he's in a crisis zone, too.

More about scalar energy and what the shaman had to say when I figure out what the heck scalar energy is and what it can do for us. Right now I haven't a clue.

Friday, June 15, 2012

My op-ed piece at Mad In America

I am pleased to introduce the op-ed piece that I wrote for the Mad in America webzine. Anyone who already follows my blog won't learn anything new - it's my standard schtick - but I would appreciate it if you can circulate the message about the effect of a schizophrenia diagnosis far and wide. My post happily dovetails with the MindFreedom I Got Better campaign which was launched yesterday. Once I examined the diagnosis and rejected it, I found to my delight that my son got better. And, as he got better, I got better. And vice versa.

Holistic Recovery From Schizophrenia: A Mother and Son Journey

Holistic Recovery From Schizophrenia

By Rossa Forbes

June 15, 2012

I am a mother of a son who was given a diagnosis of schizophrenia in December 2003, a son who is doing well today perhaps due to my refusing to buy into the medical model of the so-called “illness.” I wasted a couple of precious years at first because I bought, albeit without much enthusiasm, the costly medical model. I spent the years until now struggling against this model.

Read the rest here.

New MindFreedom's I Got Better campaign


Below is a press release from MindFreedom and an invitation to take the new "Survey on Hope in Mental Health." Please, please, please contribute your experiences to the "I Got Better" campaign to promote knowledge of resilience in mental well being. You don't have to be the person "who got better" to complete the survey, although I'm guessing that if your relative got better, so did you. You are feeling much better now because you know from experience that recovery from "schizophrenia" or "bipolar" is not all all hopeless - which you were originally told it would be.

Others need to hear your message of hope! The survey takes less than five minutes to compete.

MindFreedom International News - 14 June 2012

New MindFreedom Campaign Defies Hopelessness

Today, MindFreedom International launches the I Got Better campaign with an invitation for you to participate in this Survey on Hope in Mental Health: http://surveymonkey.com/s/mfi-igb-intro

This brief, confidential introductory questionnaire takes less than five (5) minutes to complete.

I Got Better is an ongoing project defying the all-too-common message that recovery from mental and emotional distress is impossible. The I Got Better campaign will make stories of recovery and hope in mental health widely available through a variety of media.

Your Participation Could Save a Life

Any and everybody with a stake in mental health in our society is welcome to participate, including people who have used mental health services, psychiatric survivors, as well as their friends, family members, colleagues, and mental health workers. Please share the survey link -https://www.surveymonkey.com/s/mfi-igb-intro - freely via email, facebook, twitter, blogs, etc.

Respondents to the survey wishing to share additional knowledge will be invited to take an optional follow-up survey about impressions of hope and hopelessness in mental health care, and successful strategies for recovery. Some survey respondents will be asked to share their story on video.

David Oaks, Director of MindFreedom International, said, "When I was in psychiatric care in college, I was told it was forever. Your experience of hope and hopelessness in mental health care could help youth and young adults receiving a psychiatric diagnosis for the first time. Hope could save a life."

The Story Behind I Got Better

The title of the I Got Better campaign is inspired by the successful It Gets Better viral media effort led by columnist Dan Savage that "shows LGBT youth the levels of happiness their lives will reach." While the I Got Better and It Gets Better campaigns are independent, Dan Savage has enthusiastically endorsed I Got Better.

The I Got Better campaign is funded by a grant from the Foundation for Excellence in Mental Health Care to MindFreedom International. MFI is an independent nonprofit coalition founded in 1986 to win human rights and alternatives in mental health. For more information contact news@mindfreedom.org, or call the MFI office at 541-345-9106.

To take the brief, confidential introductory I Got Better survey, which will be active through 15 October 2012, click here now 



Thursday, June 14, 2012

Russell Brand testifies to Parliament about addiction



This is a long, but very entertaining and thoughtful testimony given by comedian Russell Brand and Mr. Chip Somers to the Parliamentary Committee on Addiction. Their testimony complements much of what Dr. Gabor Maté has to say about how to treat addiction.

Interview with Dr. Gabor Maté

Thanks, Gianna at Beyond Meds, for highlighting excerpts from Dr. Gabor Maté's new book about addiction, In The Realm of Hungry Ghosts. I moseyed over to Amazon and found an interview with the author:

Question: Your book ends on a positive note, with the idea that brains do have the ability to change and grow in adult life and even to heal themselves. Does this undermine your previous assertion that you don’t expect most of your severely addicted patients to get clean?

Gabor Maté: No, there is no contradiction here. The human brain is exquisitely capable of development, a capacity known as neuroplasticity. But, as with all development, the conditions have to be right. My pessimism about my clients’ future is based not on any limitation of their innate potential, but on their dire social, economic and legal situation and on the essential indifference of policy makers--and of society--to their plight. In short, the resources that could go into rehabilitating people are now sunk, instead, into persecuting them and keeping them marginalized. It’s a failure of insight and of compassion. We are simply not living up to our possibilities as a society.


A letter from Gabor Maté to Amazon readers:

I've written In The Realm of Hungry Ghosts because I see addiction as one of the most misunderstood phenomena in our society. People--including many people who should know better, such as doctors and policy makers--believe it to be a matter of individual choice or, at best, a medical disease. It is both simpler and more complex than that.


Addiction, or the capacity to become addicted, is very close to the core of the human experience. That is why almost anything can become addictive, from seemingly healthy activities such as eating or exercising to abusing drugs intended for healing. The issue is not the external target but our internal relationship to it. Addictions, for the most part, develop in a compulsive attempt to ease one’s pain or distress in the world. Given the amount of pain and dissatisfaction that human life engenders, many of us are driven to find solace in external things. The more we suffer, and the earlier in life we suffer, the more we are prone to become addicted.


The inner city drug addicts I work with are amongst the most abused and rejected people amongst us, but instead of compassion our society treats them with contempt. Instead of understanding and acceptance, we give them punishment and moral disapproval. In doing so, we fail to recognize our own deeply rooted problems and thereby forego an opportunity for healing not only for them, the extreme addicts, but also for ourselves as individuals and as a culture.


My book, in short, is an attempt to bring light to core issues shrouded in darkness. The many positive responses I’ve received encourage me to believe that I’ve succeeded in making a contribution toward that goal.

Best wishes,

Gabor Maté

Tonight

Tonight, Ian, Chris and I have an Family Constellation scheduled with Dr. Stern, focusing on my side of the family. This is the second time we have explored my side, so I'm getting the hint that there is still an emotional blockage to be resolved in order for Chris to move forward.

I'm bracing myself. These sessions are intense.

Wednesday, June 13, 2012

A second opinion

Is getting a second opinion (or a third or a fourth) when handed a diagnosis of schizophrenia an idea whose time has come?

There are now many more doctors who consider themselves holistic practitioners, and some of them, I hope, are doctors who don't agree with the label of schizophrenia. If they truly are holistic, they should distrust the rush to label someone and should be willing to disagree with that practice. There are registries of such doctors on the Internet under the labels "holistic" and "alternative."

This will only work if you find yourself a doctor who is "schizopositive," meaning a doctor who subscribes to the idea that schizophrenia is not a disease, it can be the beginning of a spiritual journey. Schizophrenia is still the line where even supposedly open-minded doctors often have minds that swing shut when the "S" word is mentioned. This plan may work best if you are not already on meds. The presence of meds usually scares physicians into agreeing with their peers.

People seek second opinions in every other area of medicine. Why not a second opinion in mental health?

Tuesday, June 5, 2012

Can you spot the stigma in this interview with Glenn Close?



I'm not at all a fan of Glenn Close's campaign to reduce stigma for the "mentally ill." I especially hated the tee shirts (see above) that she and her sister wore for the Bring Change 2 Mind campaign.  Putting that aside, the Ottawa Citizen has an interview today with Glenn and her sister Jessie Close, which is cringeworthy.

Perhaps you can spot what I'm talking about.  Hint: I'm really only referring to one sentence out of the whole interview. The basis of my objection concerns the study that Sheila Mehta conducted in 1997 at Auburn University. To quote from the New York Times article on The Americanization of Mental Illness:

The results of the current study suggest that we may actually treat people more harshly when their problem is described in disease terms,” Mehta wrote. “We say we are being kind, but our actions suggest otherwise.”
 
Can anyone spot the harsh treatment in the Ottawa Citizen?

No prizes will be awarded for the right answer.

Yoga as therapy

I have cut and pasted below an introduction from the results of a study published April 2012 in Acta Neuropsychiatrica. I'm posting this as sort of a placeholder on my blog, so that I can refer back to it for a good description of what yoga does to improve cognition. (Thanks to MIA for alerting me to this study.)

Adjunctive cognitive remediation for schizophrenia using yoga: an open, non-randomised trial
Bhatia, T., Agarwal, A., Shah, G., Wood, J., Richard, J., Gur, R. E., Gur, R. C., Nimgaonkar, V. L., Mazumdar, S. and Deshpande, S. N. (2012), Adjunctive cognitive remediation for schizophrenia using yoga: an open, non-randomised trial. Acta Neuropsychiatrica, 24: 91–100. doi: 10.1111/j.1601-5215.2011.00587.x

Introduction
Cognitive impairment represents a prominent feature of several psychiatric illnesses, including schizophrenia (SZ), major depressive disorder (MDD) and bipolar disorder (1–3). Deficits in long-term memory, working verbal memory, executive functioning and vigilance have been consistently associated with poor functional outcome in persons with SZ (4–8). As pharmacological treatment is not routinely efficacious (9), there is ongoing interest in adjunctive non-pharmacological interventions for ameliorating cognitive deficits (10–12).

In comparison with conventional therapies, yoga represents a different approach. It is a set of mental and physical practices that have been evolving in India for several millennia. Yoga is viewed by many practitioners as a systematic process designed to purify the body and the mind from toxins accumulated due to improper lifestyle choices and negative thinking patterns. Yoga includes components centred on meditation, breathing and activity or postures designed to balance the body's ‘energy centres' (13). Intensive yoga exercises may improve the cognitive function among psychiatrically ill and healthy adults (14–20). There are several mechanisms by which the practice of yoga may improve the cognitive function. Yoga emphasises body awareness and involves focusing one's attention on breathing or specific muscles or parts of body, so yoga may improve more general as well as focused attention. Yoga practice also influences perception by increasing perceptual sensitivity, by selectively ‘shutting out' undesirable stimuli and by changing distorted perception. Practising yoga improved auditory and visual perception, by increasing sensitivity to various characteristics of the stimuli (e.g. intensity and frequency) (21). A recent study (20) observed that memory functions of male volunteers improved after yoga. In an open trial of yoga (n = 21) versus physical therapy (n = 20) among patients with SZ in India, greater improvement in psychopathology BP1 was reported with yoga therapy (YT) compared with physical therapy. Improvement in clinical severity was noted following 3 weeks of YT, but cognitive function was not evaluated (22). In another study (23), yoga was found to improve facial emotion recognition deficits. The precise physiological basis for the beneficial effects of yoga is unknown and continues to be investigated. Selvamurthy et al. (24) have found that yoga helps achieve a stable autonomic balance. Others have reported that the practice of yoga reduces autonomic arousal (25,26). Because increased physical activity reduces autonomic reactivity to mental stressors (27), it is possible that some of the beneficial effects of yoga are related to stabilisation/normalisation of autonomic function.

The studies reviewed above were conducted by highly trained therapists or clinicians in structured academic centres. Their utility in routine clinical practice is uncertain. Moreover, YT has typically not been used as a cognitive remediation strategy for individuals with impaired cognition. In the present pilot study, we evaluated the impact of YT among individuals with severe psychiatric illnesses. Cognitive domains known to be impaired in these disorders were assessed.

Friday, June 1, 2012

Psychiatry's poker hand

A few weeks ago Chris stopped by a display in a hotel lobby and purchased a copy of the following DVD entitled "Un Documentaire: Manuel Diagnostique et Statistique. Le coup de poker le plus funeste de la psychiatrie." (The Diagnostic and Statistical Manual: Psychiatry's biggest gamble).

You may have seen clips of this DVD posted on YouTube. As it happens, the Citizen's Commission on Human Rights (CCHR) owns the video rights. The English title of the DVD is The Diagnostic and Statistical Manual: Psychiatry's Deadliest Scam. The CCHR was founded in 1969 by the Church of Scientology and Dr. Thomas Szasz. The extent of the financial relationship now between Scientology and CCHR is unclear from the CCHR website.

I don't really care about the relationship between these two organizations. Whatever CCHR is, it one one of only about two organizations critical of psychiatry and pharma (the other being the Church of Scientology) that has deep enough pockets to get the message out to the greatest number of people. Disclaimer: I am not a member of, nor have I ever been a member of, or contributor to, the Church of Scientology or CCHR, nor do I intend to be.

Here's the take home message from the DVD, as you would expect
  • mental illness has no diagnostic test
  • psychiatry can't agree on what defines mental illness
  • DSM needs a diagnosis in order to bill insurance
There are some clever illustrations of how there is little agreement on what mental illness is. In one scene, a fictitious group of psychiatrists are the celebrity guests in an updated version of the 1950s television game show, "What's My Line?"  The psychiatrists try to guess what diagnosis the contestants were previously given, and they all get it wrong, all the time.  In another, patients brought hidden cameras into their therapy sessions and tried to get the psychiatrists to explain what their diagnosis really meant. The wobbly and convoluted answers were hilarious.

There is an expensive French language voice-over that adds a bit of unnecessary, but comic Gallic emphasis  to what is already explained. "Non, c'est ridicule!" says a male voice in response to something the female French voice is explaining. He also responds with "C'est tellement incroyable!" (That's truly unbelievable!)

A problem with the DVD is that it hardly mentions schizophrenia. I 'm pretty sure I understand why. It's because the public still believes that there is this horrible mental illness called schizophrenia that is a "true" mental illness. Schizophrenia still persists in being the one diagnosis where psychiatry and pharma hasn't inflated the numbers by widening the catchment area, as it has done with bipolar, ADD, autism, and depression. There has been no Joe Biederman popularizing the schizophrenic child - the bipolar child is as close as psychiatry has gone so far.  Let's assume CCHR, in the DVD at least, doesn't mention that schizophrenia is manageable without drugs and not a real illness to begin with, because if it did, the public wouldn't buy the rest of what it is saying. CCHR would prefer to work with the diagnoses that are becoming heavily criticized as being over-diagnosed. A rising tide lifts all boats, so any challenging of the the current treatment paradigm for depression and bipolar, with carry schizophrenia with it. There is a slight problem with my logic of a happy ending for all, and that is that psychiatry won't give up schizophrenia without a fight.

Splitting, not cracking up

Dear Rossa and Ian,

Just to let you know that Chris and I have had four lessons in May and will then have 3 in June. I will then be away for a few weeks and back in mid-July. I have been very worried about him for the past few weeks. He seems to be drifting again, and in lessons I'm not able to get through to him and to communicate in the way we were able at the start of the year.

To me it feels very like the last time his condition deteriorated, and I'm concerned that he might not be taking his medication or that the balance isn't right.

I'm sure you are aware of this as well, but I wanted to pass on my concerns. Please don't hesitate to ring.

Yours sincerely,

Chris's voice teacher
 
......
This well-meaning message that I received yesterday is a prime example of a good reason not to divulge your relative's diagnosis to other people almost EVER, and a reminder of how the public has internalized pharma's message. I think I know what's going on, and I'm doubtful that it's relapse (although, once again, it has all the hallmarks), but I certainly can see where his teacher is coming from. I phoned her immediately and explained the way I see it. Chris is tired of voice lessons, doesn't feel like he's progressing, and has found musical theatre and a small job to be a welcome change of pace. But Chris doesn't yet have a firm foundation of self, and allows his conflicted self to act like he's splitting apart. "Normal" people expect a person to show a consistent face across different spheres of activity. Chris hasn't mastered this technique.

In March, he took a month off from voice lessons and I encouraged him not to go back for a while because, from what he was telling me, he needed a break Apparently, he resumed his lessons in May, probably out of some misguided sense of selflessness and fear of disappointing his teacher. CHRIS - THIS DOESN'T WORK! You are either there and fully participating or you are physcially not there. But take a stand! Don't be there but be mentally vacant! Stop being all over the map!

(N.B. Chris's psychiatrist tells me she's pleased with his recent progress. Go figure.)

One person's opinion of the lasting effect of maternal deprivation

Today's New York Times Opiniator was written by a man who suffered extensive maternal deprivation at a very early age. Read the entire piece here.

May 31, 2012, 12:00 pm


Fortunate Son

By EMILLIO MESA


But after I was attacked, when she fought for me in the emergency room and then nursed me back to health in her home, that finally changed. Psychologists typically believed that the most important bond between a mother and child occurred during the first three years of life. If a child suffered maternal deprivation, he would be emotionally damaged for life. I don’t think that’s true. Getting mugged was a blessing in disguise. It let my mom and me make up for the time we’d lost. It took 14 months of living with her, but I’d finally come home.