November 2010 - Rossa Forbes

NAMI 2011 Convention

Blockbuster Line Up Of Convention Symposia

NAMI is pleased to announce an exciting line up of symposia for our 2011 Convention.

Health Care Reform.

Part I will offer a Washington,D.C., focus on how the health care reform bill is likely to be handled by the new Congress.

Part II will offer “take aways,” or what to do with this information when you return home.

Veterans. How NAMI is working to help veterans, the National Guard and reservists in need of mental health and readjustment services post-deployment.

Employment. Why, after all the work to develop supported employment, are 80 percent of adults living with mental illness unemployed? What can local NAMI State Organizations and Affiliates do?

Disciplinary Confinement. Isolation and confinement exacerbate psychiatric symptoms. Efforts underway to respond–including legislation, litigation and voluntary initiatives–will be examined.

Disparities and Cultural Competence. These issues will be addressed in the context of health care reform, supports and treatment availability and strategies for input and action.

Faith, Spirituality and Mental Illness. Dr. Nancy Kehoe returns to further explore the impact of religious and spiritual beliefs on recovery.

Emerging Creativity in Diagnosis and Treatment. Cutting-edge ideas to push the boundaries of our understanding of mental illness and further the effectiveness of diagnosis and treatment.

Federal Special Education Laws. Understanding IDEA, knowing your child’s rights and getting effective services.

In the car on the week-end, listening to the same radio show. This time the interview was with a management somebody, who was making the same point as the sports psychologist. He said that people are sent on management courses all the time, yet they usually come back to the same dysfunctional office environment that they left. Very quickly they slide back into the same way of thinking and acting.

Here we go again. The same is true with mental health. The patient is released from the hospital (not necessarily improved, just patched over, I may point out) back into the same environment. It could be the family, it could be social housing, it could be living alone. Often, the person regresses because the environment has not changed. It needs to in order to begin or sustain recovery.

I have yet to have a psychiatrist tell me this simple truth or suggest books to me that would help me see how this works because it goes against the disease model of mental illness. Honesty is needed here, even if it means suggesting things people have trouble accepting.

Athletes and mental health sufferers unite!

I was listening in the car this morning to a radio interview with a sports psychologist. He was discussing the case of an internationally competitive skier who had suffered extensive head trauma. The psychologist mentioned that after major accidents like these there is often Post Traumatic Stress Disorder (PTSD) as well as the actual physical trauma.

The sports psychologist treats his athletes using visualizations and other psychological techniques. It occurred to me while he was talking that with professional athletes, the focus is always on getting them back to their former level of fitness and ability to compete. It seems to be universally expected. Athletes are considered society’s “winners.” All kinds of “right thinking” behavior is credited to them, from being exceptionally focused and mature, to being “intrinsically better” than the next guy, who is roundly criticized for quitting athletics early despite obvious talent.

You probably can tell that I have limited tolerance for putting jocks on Mount Olympus. What irks me is that positive expectations are lavished on jocks and the same cannot be said for those suffering from mental illness. Where are the sports psychologists for our relatives? Our relatives, too, have to get back in the game.

The radio interview discussed the long term prognosis for returning to the sport for the worst kinds of injuries, and the psychologist said that it can be done. He made it sound like it wasn’t even such a big deal. In several cases he cited, athletes even managed to surpass their previous records. The psychologist mentioned that PTSD and subsequent recovery can be delayed by people around the athlete, who, in their worried state, actually make the athlete doubt his ability to get back in the game. (That would be the high expressed emotion that I have referred to elsewhere on this blog.)

The sports psychologist discussed the importance of allowing time to heal, and not rushing back too soon because, thinking you are well before you actually are is not a good strategy. I have heard that, too, from psychiatrists, but the difference is that they were coming from a place of pessimism, not positivism. They believe schizophrenia is chronic and, of course, the medications treat everybody as if they were chronic.

So, the psychiatric patient is not getting the kind of treatment that star athletes get. The typical psychiatric patient gets lowered expectations, no hope of full recovery and ability to surpass the previous self. Nobody clues in the family that being worried hinders the individual’s recovery.

What’s so special about athletes that we can’t apply the same treatment to those suffering from mental health problems?

NAMI loves consumers

A festive newsletter from NAMI, exhorting the consumer mentality. You don’t even have to get dressed up and go out.

This year, as you recover from your “turkey hangover,” start your holiday shopping from the comfort of your own computer by shopping at Amazon.com.

The best part? By shopping Amazon.com NAMI will receive a portion of the proceeds generated by the sale.

Those dollars will go directly to improving the lives of individuals and families affected by mental illness.

Time to practice what I preach

The teenage son of a colleague of mine has just been committed to a psychiatric hospital. He’s fourteen years old. He’s been receiving psychiatric help for years, but the situation was taking a new turn and becoming dangerous. His father feels all the psychiatry his son has had to date hasn’t prevented what is happening now.

Here’s an excellent opportunity for me to rush in and give my friend the benefit of all my experience, and yet, I don’t. At least, I don’t very much.

My advice wouldn’t be understood because it’s too soon for most people in crisis mode to absorb its simple and, at the same time, complicated message. Mental illness is so personal that it seems that nobody else can possibly have the answers for your own relative. And, of course that’s true to some extent. It seems all of us are fated to learn about how to get over mental illness the hard way.

It shouldn’t have to be this hard, but it is, because, unfortunately, most psychiatrists aren’t willing to embrace alternatives. Right now my friend’s son is in isolation, so early empathetic intervention à la Soteria or Open Dialogue isn’t being considered. Even if it’s not Soteria, doctors should get in there early and tell the parents it’s their job to be non-judgmental, low expressed emotion and unafraid. They should but they don’t. As long as the parents are scared stiff and worried, doctors can count on being in control.

In our own case, Chris’s psychiatrists have, at various times, rejected vitamins, second opinions, sound therapy, and ideas coming from us. Had Chris’s psychiatrist known about the Assemblage Point shift, well, I never even proposed it because I knew it would be rejected. Most psychiatrists, even the ones I think have been helpful for Chris, don’t appreciate hearing about add-on therapies. I can understand that to a point. But it often looks more like they want to control the entire process, even if it means that recovery will never happen or be delayed.

So, what did I say to my colleague? Not much, but I tried to interject optimism and a positive attitude about his son’s future. I suggested that psychiatrists don’t have most of the answers and a healthy amount of skepticism is needed. I mentioned that the Internet is full of different views about mental health. It’s far too early to confide in him that one of the best therapies for Chris was for his parents to decide to change the family dynamics by changing ourselves, rather than our thinking that Chris was the problem in need of changing.

It’s too bad that psychiatry doesn’t share these insights with the family. If it did, recovery would be quicker than it actually is.

The Chandra Levy verdict

I am probably stretching it, but here goes.

You may ask what’s the recent verdict in the Chandra Levy case got to do with a diagnosis of schizophrenia?

Chandra Levy was an intern in Washington, D.C. who went out for a run one day in 2001 and never returned. Her body was discovered about a year later in a forested area off a jogging path.

On Monday Ingmar Guandique was convicted of her murder. Astonishingly, he was convicted despite the fact that there was no forensic evidence linking him to the crime, no murder weapon, no knowledge of what actually killed Chandra, no witnesses, and no confession on his part. Other lawyers declined the case because they felt it would be impossible to convict.
There was, however, testimony from a cell mate who claimed that Guandique “confessed” to the crime and from two female joggers who were molested by Guandique around the time that Chandra went missing.

It is astonishing that a conviction could be obtained based on lack of evidence and speculation. It looks like the jury based its verdict on what they would like to believe about the accused, and in doing so blithely overturned centuries of the common law principle of reasonable doubt. Other prosecution lawyers declined the case because they felt it was unwinnable.
A diagnosis of schizophrenia or other mental illness is arrived at through similar leaps of faith. There is no scientific evidence that schizophrenia is a pathological disease, many people will not confess to being “sick,” and yet they will be “convicted” anyway, based on their appearance and of acting outside of social norms.

Is it so astonishing that the Chandra Levy verdict is being heavily criticized for its lack of scientific evidence when those of us in the trenches see lack of scientific evidence guiding most of the legal and policy decisions governing mental health treatment?

What’s it like for other people?

It is well-known that no two people labelled “schizophrenic” are alike. One of the hardest things for me at the beginning of this crisis was comparing how Chris was stacking up against “the competition.” The competition were the people who were doing better than Chris at the moment or the people who were much older and fully recovered. I was frightened that Chris would be part of the group that wouldn’t make it.

Well, I shouldn’t have been so worried (and neither should you be about your own relative) because Chris is making it and far surpassing the expectations of the psychiatrists who labelled him in the first place. Even though Chris is not like your son or daughter in the way the crisis unfolded in him it doesn’t mean that the remedies are different.

The point I’m trying to make is that when I report progress with Chris, it may not at all ressemble anything that you are experiencing. When I write that I am pleased that Chris seems utterly bored these days, it may bear absolutely no relation to what’s happening with your relative. Yet, I wonder if boredom (or some other under-exercised emotion) is a significant sign of progress that can be applied to anybody in this situation, especially if your relative is the type who never expressed much discontent one way or the other. To be discontented means that something will eventually change. A light may go on. The trick here for me is not to leap in with all kinds of ideas to alleviate boredom. He needs to take sustained action himself.

Let him be bored.

Ablechild

I often get long e-mails from someone or something called ben.merhav@gmail.com which I would normally ignore because the source of his messages refer back to blogs with multicolored font on the perennial black background, ABUNDANT USE OF CAPITAL LETTERS, large bold font and cut and paste as the rantings of CONSPIRACY NUTS. They are pushing their luck with me. This is the print equivalent to me of the rantings of Herbert W. (dubblya) Armstrong, founder of the World Wide Church of God. Herbert, through the evangelical radio show that he hosted, was always “just back from speaking with WORLD GOVERNMENTS!” I assume Herbert was a little more focused in his younger days.

Problem is, sometimes these messages are just too interesting to ignore.

So it is with today’s message from Ben (is it a person?), who gets most of his material from a blog entitled THE 18TH BLOG FOR THE OUTLAW OF PSYCHIATRY NOW ! This blog appears to be written by Evelyn Pringle, who I had banished to my spam box, only because while I liked her investigative journalism re pharmaceutical interests, I ended up getting her opinion pieces on just about anything, No, I don’t want to hear from her about Obama, the war in Afganistan, or gun control, and I certainly don’t want to read colored type on a black background. My interests are quite narrow, really.

Today’s message is about Ablechild

Ablechild (Parents for A Label and Drug-Free Education), is a national non-profit founded in 2001, by these two mothers who each had personal experiences with being coerced by the public school system to label and drug their children for ADHD. Patty and Sheila went from being victims to become national advocates for the fundamental rights of all parents and children in the US.

Here’s the link to the original blog. It’s definitely worth a read. I wrote a post about my own experiences with my youngest son Taylor, when the school psychologist, in cahoots with the middle school principal, took on the role of diagnosing psychiatrists. ADD, ADHD, Schizophrenia – where’s the medical evidence?

Books on my wish list

Here is a list of just some of the books I want to read, beginning with the most recently published. I plucked the reviews by readers from amazon.co.uk.

Doctoring the Mind: Why psychiatric treatments fail
Author: Richard P. Bentall
Published: June 2010

Richard Bentall pieces together evidence from an impressive array of sources to provide a critical yet accessible evaluation of the current state of psychiatry. This book is not a scathing anti-psychiatry rant. Bentall lucidly examines the mental health literature, before concluding that a) mental health practitioners often fail their patients – he is self-critical and modest about his own treatment successes and failures and b) this failure is often borne out of rigid adherence to the neo-kraeplinian, biomedical school of psychopathology; an approach which is underpinned by pharmaceutical companies and their marketing strategies. Psychiatric diagnosis is a difficult process, the author – who favours a symptom-focused model – believes these difficulites arise from the inefficiencies, limitations and unsuitability of the disorder-based, biomedical paradigm of mental health. The efficacy of both pharmacological and psychosocial treatments is also comprehensively challenged – alongside the chapters on psychiatric diagnosis, these topics form large sections of the book.

Collision
Author: John Donoghue
Published Dec. 2008

A well plotted tale, intriguing and atmospheric, beautifully written by a fine story teller.

A vivid picture which keeps the pages turning, explores the currents of possession and mental illness with a backdrop of a sizzling romance, hospital life and Catholicism. Notably, the parallel descriptions of exorcism and the clinical situation are spine-tingling.

A very enjoyable, thought -provoking read; a must for anyone interested in mental health issues.

The Drama of the Gifted Child: The Search for the True Self
Author: Alice Miller
First published 1979

Miller’s book is concise and straightforward, asserting that parental expectations for children–however benign or well-meaning–inevitably suppress the child’s real self, leading to the ongoing “dramatic” performance of an identity throughout the child’s life that is not driven by his/her own feelings. The lists of common behaviors that might be signs of this drama are helpful, and provoke moments of self-recognition that can be both painful and illuminating. My one reservation about Miller’s argument is that this suppression of children’s true selves is often demonstrated using examples of truly abusive parents, including several accounts of incest and violence. This undermines her overall understanding of the drama tendency as an almost universal property of family life.

See also This week’s obituaries

Heroic GSK debunks own medication for a non-existent market

Omega-3 fish oil has been debunked as helpful for atrial fibrillation by a study sponsored by GlaxoSmithKline. Oddly, GSK sells the prescription omega-3 medication that was tested in the study. Lovaza is the only FDA approved medication made from omega-3 fish oil that is effective in lowering very high triglycerides.

The study’s leader, Dr. Peter Kowey, cardiology chief at Main Line Health Hospital System near Philadelphia, said many people take supplements and vitamins that have not been well tested.
“People are spending an enormous amount of money on stuff that doesn’t work,” he said.

Results were reported Monday at an American Heart Association conference in Chicago and published online by the Journal of the American Medical Association. . . . . The capsules used in the study are sold as Lovaza in the United States and as Zodin in Europe by GlaxoSmithKline PLC, which paid for the research.

You might well puzzle over this one. Why would GSK pay for a study that shows its own product to be not helpful for a certain condition? Well, one possibility is that GSK hopes that by doing this it will demonstrate to its critics that it is open and transparent. They will begin to see GSK as not just another company that buries data found unfavorable to it.

There’s always more to the story, especially when it involves those dastardly profit seekers.

Here’s my thinking on it. Atrial fibrillation, as far as I know, since I’ve got it myself, has no known cause and is not considered life-threatening. I have never heard that it is associated with high triglycerides and the associated risk of stroke, for which this medication has FDA approval. I’ll admit I haven’t spent any time researching this one, and so this is the first time I have read about the horrible fate that awaits. (Hint: GSK is planting the idea by this study that atrial fibrillation is damn serious and something ought to be done about it.)

If people are taking omega-3 for atrial fibrillation, they are using it off-label. GSK knows that it is an elusive market. Plenty of smart people can by-pass the doctor’s office in favor of the health food store to stock up on their non-prescription omega-3s to cure whatever it is that they think needs curing. Waste of money? Only to doctors who would prefer that you get your prescriptions through them.

(GlaxoSmithKlein (Mighty Mouse) willing to take the hit)

This is one GSK market can afford to lose, because it’s not its market in the first place. By cleverly allowing this one to escape, it’s building the new idea that atrial fibrillation is life-threatening. The market it wants from this study is me, and millions more like me, who once happily went about their lives unconcerned with the occasional flutter, and soon will be breaking down the doors of the doctor’s office to get whatever GSK has in its pipeline for atrial fibrillation.

And the moral of today’s story? “Beware a wolf in sheep’s clothing.”