I’m off on vacation with Ian and Chris and will be back later in August. There is the usual amount of last minute rushing around and I am exhausted!

 I doubt I’ll be posting anything during the vacation, but will be always on the lookout for good material for this blog.

I hope all of you are enjoying your summer. Stay healthy and well.

…Rossa

The NAMI Convention  is now well underway in Chicago. Holistic types seem thin on the ground. While a convention always has an impressive list of speakers and corporate goodwill, are people missing a very fundamental point here, that all the meds and all the institutional “help” can get in the way of cure. Most people I have corresponded with over the years about their mental health have told me that recovery happens off the drugs, and is a very personal story of coming to grips with yourself. My feeling is that a lot of people get lost in the bureaucracy of health care and that becomes the on-going story. Never enough money, the wrong medications, the side effects from the medications, trouble with the insurance company, problems with social housing. The professionals are in charge of the game and making a living from it. I might feel reassured by all the convention hoopla if statistics bore out that vast numbers of people are getting better using all those new drugs and hospital and recovery programs.  Success favors the individual who makes it his or her business to recover.

From the NAMI Convention agenda

1:30pm-5:00pm    Ask the Doctor Sessions and “ASK US”

(A chance to ask questions of top researchers and clinicians sharing work underway to treat and defeat mental illness. You’ll also have the chance to hear important perspectives from our consumer leaders.)

For the record, here is a PARTIAL LIST OF PAST EXHIBITORS AT NAMI NATIONAL CONVENTION (A – M only). The full list is found here.

3dASAP Promotional Solutions
Abbott
Abraham Low Self-help Systems
Allsup
American Psychiatric Nurses Association
American Psychiatric Association
American Psychological Association
Anne Sippi Clinic Adult Community Services
Astrazeneca Pharmaceuticals
Behavioral Tech, LLC
Borderline Personality Disorder Resource Center
bp Magazine and Esperanza
Bristol-Myers Squibb
California Association of Marriage & Family Therapists
Cenpatico
Centers for Medicare and Medicaid Services
Changing Options, Inc.
College of Psychiatric and Neurologic Pharmacists
Consortium on the Genetics of Schizophrenia (COGS)
CooperRiis: A Healing Community
Cyberonics, Inc.
Defense Centers of Excellence
Disability Rights Section, U.S. Department of Justice
Dominion Hospital
EmFinders
FDA Office of Women’s Health
Fred Friendly Seminars, Inc.
GlaxoSmithKline
Gould Farm
Hanbleceya Treatment Center
Harmony Behavioral Health
Harvard Brain Tissue Resource Center
Hazelden Publishing & Education Services
Hopewell
Institute of Living/Hartford Hospital
International Center for Clubhouse Development
Irwin Foundation
Janssen, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.
Johns Hopkins University
Keffer Software Products, Inc.
Lakewood Center
Lilly
Magellan Health Services
Maguire Publications
Maryland Psychiatric Research Center
McGraw Systems
McLean Hospital
McNeil Pediatrics
MedicAlert Foundation
Meehl Foundation
Menninger Clinic
Mennonite Media Productions
Mental Health Co-op
Merry Meadow Farm
Mytherapysession.com

and

Here is a list of NAMI donors and amounts for 1st Quarter 2011

Bristol-Myers Squibb Campaign for a Better Tomorrow $100,000

Bristol-Myers Squibb NAMI Family to Family Education Program $62,500

Bristol-Myers Squibb NAMI Corporate Supporter Membership $25,000

The George Cohee Foundation General Donation $6,034.00

The Susan Stein Shiva Foundation General Donation $5,000.00

Anonymous General Donation $200,000.00

Anonymous General Donation $200,000.00

Allsup, Inc. HelpLine $25,000.00

Pfizer Multicultural Action Center $10,000.00

Bristol-Myers Squibb Campaign for a Better Tomorrow $100,000

Bristol-Myers Squibb NAMI Family to Family Education Program $62,500

Pfizer Treatment Access Education and Outreach Project $25,000.00

Pamlab Corporate Supporter Membership $35,000.00

Ortho-McNeil-Janssen Pharmaceutica NAMI Beginnings $60,000.00

Shire Child & Adolescent Action Center $150,000.00

Pfizer Campaign for a Better Tomorrow $25,000.00

The Van Ameringen Foundation Parents & Teacher as Allies $45,000.00

$1,136,034

Major Foundation and Corporate Contributions Registry

TOTAL: $2,084,568

Chris is doing everything for us except donning the uniform and flicking lint off our shoulders with a brush. His agenda is blank now that the summer is here and his voice teacher is on vacation, choir and amateur opera rehearsals are in hiatus, and his part time employer is also away. Oh, yes, Dr. Stern is away for most of the summer, too.

So, here’s what he’s doing. Menu planning, grocery shopping, cooking, laundry, pick-up and delivery of Ian’s shirts, cleaning the apartment once a week, sorting the mail and accepting the delivery of packages. In his spare time (there’s still a lot of it), he has initiated the process for becoming a citizen in this fair country and is dealing with the bureaucracy involved.

Though he says he’s feeling overwhelmed (he’s a young man, after all, housework is stressful), he does this all so enthusiastically and well that it raises the question, why isn’t he in full time work or back at university or in vocational training? It’s been seven years now since his first hospitalization, and ten years since we began to suspect something was not right. His intellect is not impaired, he’s much better than he’s ever been, but he’s still hanging around the apartment with Ian and me, his parental units.

I do believe that people who have experienced what Chris has gone through tend to be too self-sacrificing for their parents and others, no thought for themselves. This is something to be worked through, but how? Being a valet to his parents surely isn’t helping, unless this is just something he has to do as part of the working it out process. Our situation is a bit complex in that we are not citizens of the country we are living in, and Ian and I do not intend to stay here after we retire. This means that if Chris wants to remain here with his brother Alex after we leave, he’ll need citizenship. What he would do here without a skill is beyond me, but that’s a long way off, in any case, and maybe by then he’ll have one.

I know Chris is thinking about possible directions, but this is still in the thinking stage. I will be overjoyed when he exercises more structure to his day in a field of his choosing.

Schizophrenia at the Schoolgate is a blog written by a married mother of four about her recent “coming out.”  Her Kindle eBook book, Surviving Schizophrenia: A Tale of Sound and Fury is available at the following location. It’s also available at amazon.co.uk and amazon europe. She’s got a great cover, a pastel portrait-like photograph of mother and child. Shades of my own deconstructed Paul Klee image, but pinker and prettier.

Here she writes about her second hospitalization, six years after her first, her entry into a day program, which is when, for the first time, she is told she has “schizophrenia.”

I, on the other hand, have nothing to do. Nothing. I am not smoking now, I have stopped in the hospital again. So I can’t even do that. After a couple of weeks of almost total inactivity I am visited by a community psychiatric nurse. She asks me what I want out of life now that I am out of hospital. I reply that I want something to do, and friends to spend time with. And so she refers me to a day hospital, Hanhemann House in Bournemouth town centre. Here I am to learn to build up my confidence and become a worthwhile member of society again.

At least the immediate worries of how to survive have receded. I am on Social Security benefits, and my rent is paid by the council. I am not smoking and can’t drink with the medication I am taking, and anyway, I am too embarrassed to meet up with my old friends. So I live cleanly, and cheaply. At the day hospital, I am given a hot meal each day.

I have been attending Hanhemann House for almost a month and I have hopes that things may improve. There is no pressure here. We patients are given a little education by the nursing staff on the nature of mental illness, and some half hearted attempts are made to motivate us into activity, but most of the time we are left alone. I feel safe, and relaxed.

But then, in one day, my life changes. The doctors call me in for a meeting. There are at least six people in the room – nurses and doctors of various descriptions. And they break the bombshell to me. I am suffering from schizophrenia. I am schizophrenic. This has been on my records, apparently, for six years already – I was diagnosed when I was just nineteen, at the time of my first breakdown, but at the time it had not been thought appropriate to inform me.  It is a lot to take on board. For the last six years, since my first breakdown, I have thought myself to be normal – nervous, OK very nervous, but essentially normal. During this time I have completed my degree, held down jobs, functioned in society. It has been a struggle, but by and large my life so far has been a success. Yet now I learn that all this time I have apparently had a disabling illness. These people knew about it all along. I have confirmed it by breaking down again.

I am very scared. I am a freak, a social outcast. I am an unknown quantity. A maniac. A schizophrenic. The ‘Team’ then tell me that the prognosis is bad. I ask what is a prognosis. They say I basically have no future. I will get worse as I grow older. I can never expect to be normal. I must accept this, I am told. I must face the fact that I have no future.

I lose all hope at that point. My only comfort is in the medication they prescribe, that induces in me a sort of stupor. The drugs affect my state of mind to such a degree that every action becomes an effort. I decide that it is just not worth making that effort. I switch off now, recede into an almost trance-like state and refuse to take any real part in life. And at Hanhemann House nobody seems to expect anything of me anyway. I can drift along, lounge half asleep on the various saggy and stained sofas provided for the purpose. Occasionally I attend one of the rehabilitative talks that are supposed to be my primary reason for being there, but even here nothing much is expected and I sit in my chair, eyes half open, closing, closing… I start smoking again, because everyone else at the hospital does so and it seems a not unreasonable sort of way to pass the time.

The nurses do try to educate us about mental illness. I learn that schizophrenia affects one per cent of the population. That schizophrenics are not aggressive, and that they are in fact far more likely to hurt themselves than other people. I am told these things, but nothing distracts from the fear that is contained within the word Schizophrenia, and the prognosis that I have been given. My life is effectively over.

There has been a tremendous outpouring of positive response from New York Times readers to the self-outing of Dr. Marsha Linehan. Dr. Linehan is the creator of DBT therapy, whose story of recovery from a diagnosis of schizophrenia appeared in yesterday’s paper.

Perhaps you can spot the problem in Mark’s take on mental illness. (Well, there are two actually.)

mark
Providence, RIJune 24th, 20119:41 am

Dr. Linehan has done a great service to all people who suffer from emotional and mental problems, and she deserves tremendous praise for having the courage to reveal her personal story. Her story gives hope to those who read it, but the story is more complicated than the Times reports.

Having practiced psychiatry, child psychiatry and primary care medicine for 20 years, I have been impressed that mental illness is a concept that is not as simple as it is often portrayed, and that by oversimplifying it, in tends to stigmatize many people. To begin with Borderline Personality is not a unitary concept, but an aggregate of behaviors and mental and emotional experiences that varies in its intensity and characteristics from one person to the next. There may be 20 or more variants of borderline personality. Many patients who do not meet the DSM criteria are diagnosed with “borderline traits”. Many diagnoses in the DSM are probably best not viewed as mental “illnesses” but rather problems that have complex social, cultural and economic contexts. Among these should probably be adjustment disorders, learning disabilities and substance abuse disorders. While I would agree that Schizophrenia and Bipolar Disorder are true mental illnesses, we must recognize that sometimes these terms have been used to describe borderline patients and other patients out of countertransference more than because the patient truly met the criteria, out of an expression of anger and frustration at the process of treating people with provocative behavior.
Personality disorders have a strange place in the pantheon of mental disorders (By the way, what is a disorder? Is it equivalent to an illness or something different). As Dr. John Oldham has written in his books on Personality Disorders, these conditions reflect a spectrum of personality traits that range from the normal to the pathological. The pathological is largely defined by the extent of the traits.

Recommend Recommended by 0 Readers Report as Inappropriate.

Expert on Mental Illness Reveals Her Own Fight. About Marsha M. Linehan, from the New York Times.

I say “we” because even though the references here are mainly U.S.-centric, psychiatry in developed countries has been heavily influenced by the pharmaceutical industry. Here is an excerpt from the second installment of Marcia Angell’s three part review of The Emperor’s New Drugs; Anatomy of an Epidemic; and Unhinged. Dr. Angell is the first woman to have served as editor-in-chief of The New England Journal of Medicine.

One of the leaders of modern psychiatry, Leon Eisenberg, a professor at Johns Hopkins and then Harvard Medical School, who was among the first to study the effects of stimulants on attention deficit disorder in children, wrote that American psychiatry in the late twentieth century moved from a state of “brainlessness” to one of “mindlessness.”2 By that he meant that before psychoactive drugs (drugs that affect the mental state) were introduced, the profession had little interest in neurotransmitters or any other aspect of the physical brain. Instead, it subscribed to the Freudian view that mental illness had its roots in unconscious conflicts, usually originating in childhood, that affected the mind as though it were separate from the brain.

But with the introduction of psychoactive drugs in the 1950s, and sharply accelerating in the 1980s, the focus shifted to the brain. Psychiatrists began to refer to themselves as psychopharmacologists, and they had less and less interest in exploring the life stories of their patients. Their main concern was to eliminate or reduce symptoms by treating sufferers with drugs that would alter brain function. An early advocate of this biological model of mental illness, Eisenberg in his later years became an outspoken critic of what he saw as the indiscriminate use of psychoactive drugs, driven largely by the machinations of the pharmaceutical industry.
………

In addition to the money spent on the psychiatric profession directly, drug companies heavily support many related patient advocacy groups and educational organizations. Whitaker writes that in the first quarter of 2009 alone,

Eli Lilly gave $551,000 to NAMI [National Alliance on Mental Illness] and its local chapters, $465,000 to the National Mental Health Association, $130,000 to CHADD (an ADHD [attention deficit/hyperactivity disorder] patient-advocacy group), and $69,250 to the American Foundation for Suicide Prevention.
 And that’s just one company in three months; one can imagine what the yearly total would be from all companies that make psychoactive drugs. These groups ostensibly exist to raise public awareness of psychiatric disorders, but they also have the effect of promoting the use of psychoactive drugs and influencing insurers to cover them. Whitaker summarizes the growth of industry influence after the publication of the DSM-III as follows:

In short, a powerful quartet of voices came together during the 1980’s eager to inform the public that mental disorders were brain diseases. Pharmaceutical companies provided the financial muscle. The APA and psychiatrists at top medical schools conferred intellectual legitimacy upon the enterprise. The NIMH [National Institute of Mental Health] put the government’s stamp of approval on the story. NAMI provided a moral authority.

……………
Growing numbers of for-profit firms specialize in helping poor families apply for SSI benefits. But to qualify nearly always requires that applicants, including children, be taking psychoactive drugs. According to a New York Times story, a Rutgers University study found that children from low-income families are four times as likely as privately insured children to receive antipsychotic medicines.

Read the NYR article here.

It never ceases to amaze me that we still fail to recognize and treat trauma in the “mentally ill” human.

“Buck“

The story of Buck Brannaman and, by extension, the documentary is on the surface that of a man who turned hurt into grace operating from a reservoir of patience and profound love of horses. It’s also, as his quiet stories and those of friends who also pay witness to his cruel history make vividly, at times mistily clear, a look at the lines connecting parent to child, man to beast. Mr. Brannaman’s childhood was a horror, and while the movie includes chilling reminiscences, the most revealing moment comes in an old film clip that Ms. Meehl smartly tucks in and that shows the older Mr. Brannaman leading his small, blindfolded boys toward the front of a stage, his grip digging so hard into Buck’s shoulder that you may wince.

Here’s a telling quote (and audience reaction) from the APA 2009 convention.

William T. Carpenter, Jr., MD, from the University of Maryland in Baltimore and head of the psychotic-disorders work group, which includes schizophrenia, outlined several main changes being considered in this area that might be controversial.

One of these questions is whether to retain schizoaffective disorder as a diagnostic entity. “We had hoped to get rid of schizoaffective as a diagnostic category because we don’t think it’s valid and we don’t think it’s reliable,” he said. “On the other hand, we think it’s absolutely indispensable to clinical practice,” he added wryly, drawing a laugh from the audience.

________________
REPORTED IN MEDSCAPE.COM

“The lack of insight in modern psychiatry is more extreme than the lack of insight in patients.”

Lawrence Albert “Al” Siebert, (January 21, 1934 – June 25, 2009)

What I like about Al Siebert is that he is on “your side.” He will agree that you’re all right, which, to my way of thinking encourages patients to “become all right.” I don’t get the same feeling from most psychiatrists.