Wednesday, September 30, 2009

Talking dirty - let's discuss cure

Why is "cure" such a dirty word in mental health circles? A cure simply means that someone with an illness has become healthy again or it can be the solution to a problem. To believe in "cure" in the context of schizophrenia is to embarrass oneself publically. I hereby stand embarrassed.

Yes, it is true there is no "medical cure" for schizophrenia, meaning that no drug has been invented that will take away your symptoms, but somehow the concept of cure has been corrupted to mean only that. We have all read that "schizophrenia is the most serious and devastating of the mental illnesses, there is no cure for it but there are effective treatments (blah, blah, blah)" People who dutifully take statements like that at face value become patients for life. Personally, I wouldn't want the state of my mental health to hinge on taking lifelong drugs for something where supposedly there is no cure and while many people manage without them.

Dean Radin, in his blog Entangled Minds, has this to say about an article criticizing the small amounts of funding that the National Institutes of Health (NIH) has directed to alternative treatments.

"In the meantime, are there alternative methods that might also be useful, and that often have little to no side effects, and that are usually quite inexpensive? Yes, and fortunately the NIH is providing piddling grants to study them (compared to conventional medicine CAM studies are receiving chump change). But this article seems to want us to drop all such studies: "Taxpayers are bankrolling studies of whether pressing various spots on your head can help with weight loss, whether brain waves emitted from a special "master" can help break cocaine addiction, and whether wearing magnets can help the painful wrist problem, carpal tunnel syndrome."

"Are such things actually impossible? What if they actually do work? Isn't that worth finding out? The alternative is that we don't find out and useless treatments continue to be provided, or that expensive drug and surgical methods continue to be provided, many of which don't work either!"

"Personally I'd much rather spend my tax dollars looking for simple, effective, cheap methods that work, regardless of what existing theories are comfortable with. Go back just 20 years and large swatches of what used to be taken for granted in science and medicine have radically changed. So how can anyone today possibly believe that now we finally understand everything?" http://deanradin.blogspot.com/2009/06/25-billion-spent-no-alternative-cures.html

What always astounds me is how willing many people are to believe that everything is known, and they are prepared put their life or the life of their relative on hold until "science" comes up with another stab at getting it wrong. Recently, a blogger took me to task for using the word "cure" in the context of schizophrenia. According to this blogger, everybody knows there's no cure, there is only management for this "chronic illness." She has bought the official line, and more's the pity. I can deal with that way of thinking, although I don't agree with it. She, obviously cannot deal with my way of thinking because she refused to print my comment about "cure." She doesn't agree with it so she doesn't print it. She is saving her readers from what, exactly?

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http://deanradin.blogspot.com/2009_06_01_archive.html

Tuesday, September 29, 2009

More Br. J. Med. Psychol.

The 1971 edition of the British Journal of Medical Psychology (BJMP) was also interesting. A quick review by me turned up still no mention of medications to treat schizophrenia. True, it a psychology journal, but, as psychiatrists contribute many of the articles, the lack of reference to medication is noted in passing. There are fewer articles about schizophrenia than in the 1961 edition and there is an article about cigarette smoking as a dependence disorder. Shades of the proliferation of medical diagnoses for human habits are beginning to creep in.

What the 1971 BJMP continues to do is to look at the environmental underpinnings of schizophrenia, including the pre-birth environment. This is commendable, and seems to have become a lost art, if my experience with psychiatrists and institutions is any indicator. When Chris was first diagnosed, I expressed my concerns to the doctors about Chris's gestation period, his not being responsive to touch as an infant, and other things that I thought were possibly relevant to his present state. The doctors discounted my questions as irrelevant. It is a brain disease and has to be treated with medications, was the response.

Not so with the BJMP. In an article entitled "Aspects of the object relationship and developing skills of a 'mechanical boy' the authors relate the story of a mentally ill young boy and follow him through several years of therapy to emerge at 19 as a social success. The boy's pre-birth environment was considered, his confusion at having multiple mothers (grandmother, aunt and mother) until the age of ten, and his seeing himself as a machine. His movements were robot-like and he was fascinated by machinery, even drawing complex machines that uncannily ressembled the functioning of the human brain. The authors see his problems not in terms of genetics or brain dysfunctions, but as a human coping mechanism, a child trying to make sense of his environment: "Apparently, at age 19 he is a sociable young man . . . far different from the mechanistic boring youth he had been before." No longer clumsy and uncoordinated, he had both a job and a girlfriend.*

The 1992 BJMP is less focused on case studies of schizophrenia than the 1961 and 1971 journal. A small reference to medication appears in an article entitled "Mysticism: The fate of Ben Zoma." The authors note that hallucinations persisted after receiving low doses of neuroleptic medication, and they wonder "if increased medication would make the hallucinations disappear."

The March 2003 edition presents research on past-life experiences of young children. Children reporting past life experiences tend to have both high intelligence quotients and verbal skills. It notes that the behavior problems (agression, traumatizing fears and hallucinations, etc.) seen in some of the research subjects increased if the past-life experience centered around a violent death. It also puzzled over how birthmarks are sometimes seen to be in the exact place where an ancestor or person associated with the past-life had suffered a trauma.

Interesting that the results of this kind of research find their way into respected journals of psychology but seem to have no place in today's hospital setting.

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* Br. J. Med. Psychology, 44-45, 1972-72

Monday, September 28, 2009

The mother, as seen by the Br. J. Med. Psychol.

In the interests of scholarly research for my book, I paid a visit Friday evening to the local university psychology library to track down the 1961 edition of the British Journal of Medical Psychology (BJMP). It was well worth the trip. Almost the entire journal that year was devoted to the subject of schizophrenia, reminding me once again that schizophrenia used to be the exciting and perplexing main focus of psychiatric research. Coincidentally, 1961 was also the year that Carl Jung died, and there was a nice tribute to him in the Journal that singled out his interest in schizophrenia

In one study, mothers of schizophrenics were subjected to a battery of Rorschach tests, word association tests and were interviewed by a psychiatrist. He reports: "The speech of most of the group was so rapid and spontaneous as to be irrelevant and incomprehensible. In these cases the subjects moved from one topic to another with bewildering rapidity, their replies invariably being irrelevant to the questions asked."

Elsewhere in the article she is described as controlling, manipulative, sexually frigid, and unable to remember exactly when her child began and ended toilet training.

Flipping through the 1961 edition, the peculiarities of the mother are a running theme. The descriptions of her are stereotypical of women at that time and the British woman in particular. These days with reality television and Essex girls, one has the distinct impression that all British women are sexually available and flaunting it. Not so back then. Post-war Britain was a fairly grim, repressed place. The BJMP bequeaths such nuggets as the mothers confiding to the interviewer that they couldn't stand their husbands "pawing and slobbering" over them for sex. Several mothers tried to ingratiate themselves with the interviewer by asking him personal questions and bringing him restorative "tonics" over the course of several meetings. One mother confided that her husband was such a non-entity that she almost dusted him, too, when she hoovered and cleaned the house.

The BJMP is a telling snapshot of the prevailing attitudes to women at the time perpetuated by a male psychiatrist, a British psychiatrist at that. It is also possible that the findings tell us more about the psychiatrist than the mothers. What background did he come from? Was he a product of the British public school system, removed from his mother and sent to an all male boarding school at the age of six or eight, thereafter forever frightened of women? Were his own parents talkative or was the only sound heard at dinner the clanking of eating utensils on the plate?

The study findings can also be viewed as a commendable attempt to understand the problems of schizophrenia by interviewing someone (the mother) who is a major influence on the child's early development. Nowhere in the 1961 Journal did I read anything about medication. The efforts were to link the family situation to the deep personal problems of the patients. There was an interesting anecdote of a woman who had been confined for years to a mental institution. It was only when she had to change institutions and came under the influence of the lively, warm woman who ran the nursing home where she found herself, that three months later she just up and left, beginning a active new life of volunteer work and complete recovery.

The prevailing negative attitude towards the mother (and fathers, too) lasted until the first generation of antipsychotics allowed patients to leave the institutions in greater numbers in the 1960s and 1970s. As this occurred, it became no longer acceptable to link the parents to the problems of the child. There are several reasons for this. One reason is that psychiatrists no longer had easy access to a pool of research subjects. Two, as a parent, I might prefer to believe that my child's problems were biochemical in origin, as the drug companies maintained, rather than worry that I had ruined my child through improper toilet training or being sexually frigid or being myself a diluted schizophrenic. Third, the woman's movement challenged just about everything that had been written and said about women.

I am not so sure that psychiatrist's attitudes changed about the parents, and the mother in particular. Scratch beneath the surface of psychiatrists' beliefs, and I think this is where you will find that the attitude to the mother hasn't changed. After all, once they come into regular contact with the relatives of their patients, they are going to judge them. Like most mothers of mentally ill children, I no doubt come across to a doctor as protective, worried and manipulative. I am not there to win a popularity contest with them, and they will judge me accordingly. Institutional psychiatrists may be less judgmental as they are preoccupied with titrating the medications and barely have time for the patients, let alone studying their families. The research money is in studying the medications, so the spotlight has shifted away from the family environment as an indicator of schizophrenia.

For comparison with the 1961 BJMP, I will look into the more recent editions to see where its scholarly research is now focused. I am sure it will not make for such entertaining reading.
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Andrew McGhie, A comparative study of the mother-child relationship in schizophrenia I. The interview, pp 201 Br. J. Med. Psychol. (1961), 34, 195

Friday, September 25, 2009

Dr. Leon Eisenberg and ADD

Dr. Leon Eisenberg's obituary appeared yesterday in the New York Times. A pioneer in the study of autism and ADD, according to the obituary Dr. Eisenberg's concern in later life was that the ADD diagnosis “has morphed from a relative uncommon condition 40 years ago to one whose current prevalence is 8 percent. . . Correspondingly, the prescription of stimulant drugs has gone up enormously. The reasons are not self-evident.”*

Many years ago when Taylor, my youngest son, was in fourth grade, he almost ended up on Ritalin, were it not for the fact that Ian and I couldn't believe that Taylor was in any way ADD. Taylor was a fifth grade slacker, who was not interested in much at school except for art. He otherwise zoned out. One day the teacher called us in for a meeting with the school psychologist, who strongly suggested Ritalin. The school psychologist hadn't even observed Taylor in the classroom. "Taylor - ADD?" I gasped with amazement. "Why, he's our bright light!" The kid seemed very bright and he focused on stuff he found interesting, which didn't happen to be most fourth grade subjects apparently.

None-the-less, I felt it incumbent on me to do a little research. I ordered a book from Amazon on ADD. Nothing I could find in the check-list applied to Taylor. So, Ian and I said to the principal and the psychologist at our next meeting that the diagnosis didn't fit. This was embarrassing for the psychologist, as it was embarrassing for us to have to tell her this. The principal was a bit stiff with us and warned us that there were long term consequences for not intervening. "Taylor could continue for years underperforming and never reach his potential," she said sadly.

For many years afterwards, I was afraid she was right as Taylor slacked his way through middle school and high school. University for him was looking like a pipe dream. After the problems surfaced with Chris, I got Taylor a hair test, figuring that his artistic temperament was also somehow related to Chris. The hair test said he was off the charts in copper, which would make him dreamy and creative or, "unfocused," if you will. To make a long story short: Three months of supplements and he got focused, just in time for his final year of high school. As I have said repeatedly in my blog, there can be many reasons for a single outcome. Was it the supplements? Was it that boys don't normally focus until their later teen years? Or, was it that Taylor got scared about what he saw happening to Chris?

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http://www.nytimes.com/2009/09/24/health/research/24eisenberg.html?_r=1&ref=obituaries

Thursday, September 24, 2009

Once you label me you negate me*

Chris and Alex both went to our family doctor yesterday, Alex for a general check-up and Chris for that ECG that I questioned in my previous blog. Both sons haven't seen the doctor for years, well before Chris got "diagnosed." Their appointments were back to back, with Alex taking the first one.

Here is why I intend to find another family doctor. According to Alex, Dr. L. chatted to him about Chris, asking how Alex was handling the situation and gave him some general suggestions about keeping Chris engaged. Okay, fine, I'm with him so far. However, he impressed on Alex that Chris was going to need a psychiatrist and medication all his life. You can be sure that Dr. L was sad and regretful when he said this.

I don't want a family doctor who doesn't believe in total health and full recovery. I certainly don't want this doctor around Chris. This is why I have kept Chris away from him all these years. I know his view. It depresses me. What does it do for Chris?

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*Kierkegaard

Tuesday, September 22, 2009

The English patient

When am I going to get to stop being patient? Chris isn't the only patient here, unfortunately. I am thinking about this a lot recently. Interestingly, the French word for waiting is "patienter." To wait and wait and wait.

The chances of Chris not being a psychiatric patient while still on medications are nil. The obvious explanation to many is that if you are a psychiatric patient, by implication you are mentally ill. The less obvious explanation is that taking an antipsychotic guarantees you are a psychiatric patient because psychiatrists are the only ones who can write the prescription. So, in my darker moments, I can see Chris being a psychiatric patient for years and having to rearrange his life to suit the office hours of his psychiatrist. Why would a psychiatrist kill the goose that lays the golden egg? Because psychiatrists are involved in the arcane area of your mind, it is difficult to point to anything and proclaim victory, unlike, say, with a course of antibiotics. This can work to their advantage. What's the rush, after all?

Today Chris trotted off to the family doctor for an ECG. An ECG? Whatever for? This time it is harder for me to find out what's going on because now, in addition to his psychiatrist, we have added a doctor I have never met who oversees the meds. She has recommended an ECG for Chris. Once you go down the slippery slope of meds, one thing leads to another, and the next thing you know, you're having to gets tests to check on the meds and who knows what else. I am not at all happy that we now have two doctors mucking around with Chris. Come to think of it, it's three, with the family doctor. The psychiatrist I can accept for a limited period of time. Her professed aim is to have Chris no longer be a patient and she claims that she does not believe in meds for long periods of time. We'll see. . . .

Airport psychosis

My husband was recently between planes in the British Airways lounge at Heathrow Airport. He decided to use one of the computers in a special section of the lounge set aside for computers. There were about forty computer terminals in total, all of them free. He sat down at a terminal and put his jacket and his laptop on the chair of an adjacent terminal.

A man came over to him and asked him to move his jacket and laptop so he could use the terminal. "But there are thirty-nine other terminals available," my husband pointed out to him. No, the man wanted that one.

"I didn't bother to argue with him, I just did what he told me to do," said Ian. I have travelled enough to know when someone is sleep deprived and not in his right mind.

Monday, September 21, 2009

Not much to go on

When I first got into the "schizophrenia business" six years ago when Chris was 19, I had a major handicap. I didn't know anything about schizophrenia. I didn't know the vocabulary of psychosis, so it was difficult for me to do any of my own research. I also trusted the doctors, who told me that psychosis was a life long medical condition. It took about two years to get over the shock of the diagnosis and begin to think that maybe I could actually help Chris to get better, rather than simply leave his care to conventional medical wisdom.

What I found on the Internet was pretty sparse indeed. One thing led to another and I picked up information here and there, but certainly nothing very concrete or even hopeful. Most of the information that I found on the Internet was put out by the pharmaceutical companies and mainstream consumer organizations like NAMI. Eventually, I hit on a couple of observations that stood out to me. These observations on people likely to recover from schizophrenia were made by doctors.

One, is that people in their experience who recovered often didn't go along with what the doctors told them (this would include the caregiver). Often, there was active dissent. Two, is that the parents often seemed like they weren't aware the person had a problem. In the first case, doctors might label this "non-compliance" and in the second case, they might call it "denial."

As little as that was to go on, that was enough information to bring me to my senses. "Maybe I'd better start reconsidering what the doctors are telling me," was my thinking. "I can do non-compliant. I don't need the doctor to like me." So, I formally entered into denial that my son had a hopeless, incurable illness. I denied that he had a damaged brain. I refused to consent to an EEG for Chris and I began to lobby to get him off the meds, as I felt his problems were not biochemical. I am still working on the knack of not being aware that Chris has a problem, but I can certainly find excuses for why he has them. The excuses have nothing to do with a genetic predisposition or a damaged brain. I see Chris as an intelligent, senstive young man who is working through a necessary stage of development.

The more I employed these strategy, the more Chris benefited. I noticed that anything Ian and I did for him like finding an alternative therapy, putting him on vitamins, arguing that his meds should be lowered, reading poetry with him, helped him.

What bothers me is that precious years are wasted at the outset of a schizophrenic break because the doctors continue to have tunnel vision about what the problems with mental illness are about. There are many people who think like I do and they have been saying it and writing about it for much longer than I have so there is an informed body of knowledge to draw on. When are medical schools going to teach their students that psychosis is a coping strategy not a life sentence?

Ron Unger has a recent blog post entitled "Mental 'disorder' or evolved mental strategy?" http://recoveryfromschizophrenia.org/2009/09/mental-disorder-or-evolved-mental-strategy/

He observes:

..... the mental states that get diagnosed as “disorders” tend to be specialized states of mind which do tend to cause trouble for people, but which can also be seen as part of an evolved, problem solving strategy used by the mind. That is, while these mental states may not be consciously chosen by the person and may cause problems, they also may solve important problems, and so in any given case it may be unclear whether they are doing more harm than good.

Friday, September 18, 2009

The new frontier in mental health treatment

Medical science has had over 100 years to come up with anything resembling a cure for schizophrenia and it hasn't. Since the first generation typical antipsychotics were introduced in the 1950s, the medical community has promoted medications as effective in treating schizophrenia. Medications have not been able to make large numbers of people well, and they have undesirable side effects.

Vitamins have been tried, but not without controversy from within the mainstream medical community. Some people have claimed success with vitamins, but not enough, unfortunately. Vitamins should be part of everyone's daily regime, but will not necessarily deliver you out of schizophrenia. The vitamin approach is similar to the medication approach because both treat mental health problems as biochemical in origin.

So what is left that hasn't been well-explored? Oddly enough, psychotherapy. There is really good psychotherapy out there, but sadly, many of the better psychotherapeutic approaches have been demonized. Often, the originators of these therapies have been labeled extremists and their work unfairly discredited by the medical community. People with schizophrenia should be encouraged to choose the kind of psychotherapy that suits them. Psychotherapy in all of its various manifestations should be more widely promoted as beneficial for a diagnosis of schizophrenia.

It can take years to achieve mental wellness with some forms of psychotherapy. Clinical psychologist Dr Phil Mollon acknowledges that some mental pain doesn’t get better with psychotherapy, no matter how much insight the patient gains. “Psychoanalysis is useful in generating insight, but is not good at relieving mental pain which stems from trauma. Trauma often remains locked in the emotional part of the brain, which words can’t reach.” This is where the best psychotherapy is the kind that promotes an emotional catharsis. Healing can be quicker.

The new frontier for healing schizophrenia is energy medicine and its subdiscipline, energy psychology. Energy medicine doesn't really care what the origin of your condition is or what your official diagnosis is. It simply recognizes that energy blockages, which can stem from trauma, are emotional blockages that can leave you in poor mental and physical health. Therapy involving energy medicine is affordable, especially when you compare it to the alternative - spending time in hospital, paying out of pocket for long term psychotherapy, spending lots of money on vitamins, lost employment and educational opportunities, etc. Therapies involving energy medicine are of short duration, perhaps a few sessions spread over several weeks. Energy psychology and certain psychotherapies produce a catharsis of emotion. I would consider cathartic psychotherapies part of energy psychology because they work at the level of cellular memory/cellular resonance.

Energy medicine encompasses everything I have come to understand about the possible origins of Chris's problems. Energy medicine implicitly recognizes that emotions are energy, therefore it is complementary to psychotherapy. It is a belated modern acknowledgement of what ancient peoples and religions have practiced for years.

Over the past six years, I estimate that over $500,000 has been paid by our health insurer for the wrong kind of care for Chris. Had I known then what I know now, here is where the money might have been better spent:

Assemblage point shift - $300
Tomatis Method - $4000
Sound therapy - $360
Family Constellation Therapy (just one example of a cathartic psychotherapy)
Emotional Freedom Technique and other meridion techniques
Prayer, poetry, play reading, music, kindness, understanding, time - no price

None of the above are a quick fix, but they do produce results in a relatively shorter period of time. There are all kinds of therapies that relate to energy medicine and energy psychology. You don't need your doctor's blessing to undertake these therapies. There is absolutely no harm to them. Energy medicine and cathartic forms of psychotherapy are going to become the therapy of choice for many people. It will threaten traditional medicine, which in turn will cause the medical profession to demonize it while at the same time clamoring to regulate it.
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http://www.timesonline.co.uk/tol/life_and_style/health/alternative_medicine/article1080879.ece

Thursday, September 17, 2009

Arthur C. Clarke is dead

So is Philip K. Dick and Madeleine L'Engle. Terry Pratchett is slowing down a bit, but not much, so far. I am encouraging Chris to seriously think about science fiction and fantasy writing as a career or a hobby. There are always openings for exciting new writers in the parallel universe realm "Think of this way, Chris. You are a natural - you've spent time in mental institutions in two countries on two continents, you have personally encountered aliens, you write well (you can never emphasize this enough), and you know something about physics, mathematics and music. This is world class stuff!"

I am reminded of a scene in the movie Orange County, where the father expresses skepticism about his son's professed desire to be a writer. "A writer! What could you write about? You're not opressed or gay." The father is acknowledging a fundamental truth here. It helps to be a bit of an outsider when it comes to a career as a writer.

Wednesday, September 16, 2009

I Never Promised You a Rose Garden

If you haven't read this book, please do. It is the evocatively written fictionalized autobiography of author Joanne Greenberg's three year treatment for schizophrenia at Chestnut Lodge, in Rockville, MD, from 1948 to 1951 under the care of Dr. Frieda Fromm-Reichmann. What strikes me most about this book, is not just the superb writing, but the fact that the author was successfully treated largely without medications. She and her psychiatrist talked their way to recovery. According to what I read, the only medication she received was something she took at bedtime occasionally to help her sleep at night.

Hannah Green, by all accounts, was pretty far gone as a patient. She found herself placed in the hospital's back wards on many occasions. At the end of the book, she is due to re-enter Chestnut Lodge once more, once more having retreated from forging an identify for herself in the local town. I think this is a very realistic look at the journey of schizophrenia, of the struggle to construct a personality. Having read I Never Promised You a Rose Garden was very helpful when Chris re-entered the hospital recently. I saw it as not so much a relapse but more as a necessary stage in his development. He has emerged all the stronger for it.

Tuesday, September 15, 2009

Hypnosis, fetal memory and past life regression

One intervention that Chris has not tried is hypnosis. It's not because I don't believe in it, it's because the situation hasn't presented itself, yet. I recently rekindled my interest in hypnosis when I met a woman who is the widow of Dr. Denys Kelsey, a British psychiatrist who discovered early in his career that he had a knack for hypnosis. He was married for many years to Joan Grant, a writer like Taylor Caldwell, whose inspiration for her writing came from her past lives. (Grant claimed she was 25,000 years old!) Grant and Kelsey together wrote Many Lifetimes, a book about reincarnation, and I've personally read Now and Then: Reincarnation, Psychiatry and Daily Life by Denys Kelsey, which I highly recommend, as Kelsey writes that he was able to regress some of his patients to the point of conception. Since I literally heard the "ping" of Chris's conception, and since Chris had confided to me once that he has fetal memory, I wouldn't mind if he "had a go" at hypnotherapy. This would go over like a lead balloon with my husband, who doesn't want to bring in any psychiatrist other than the one Chris is seeing. Chris is also understandably tired of seeing a psychiatrist week in and week out. Still . . .

Dr. Stern, Chris's psychiatrist, doesn't "do" hypnosis, to my knowledge. She does Family Constellation Therapy and psychotherapy but not hypnosis. For psychiatric patients, wanting to try different therapies beyond what is on offer with their own doctor, isn't as clear cut as you would think. In the program that Chris attended for two years, the parents often asked about hypnosis and the opinion of the doctors was uniformly against it. The program didn't "do" hypnotherapy. Neither did it "do" Family Constellation Therapy. What kind of one-on-one therapy it did do is a mystery to me. I suspect that everybody got the same superficial therapy, no matter what their diagnosis. Therapy lite is not for schizophrenia. You've really got to get in there.

I have read that people with schizophrenia can't be hypnotized, meaning that there is something about them that makes it impossible for them to become hypnotized. I have also read that it is dangerous to hypnotize people with schizophrenia. It makes me wonder if there is no distinction made between someone with active psychosis (perhaps harder for them to concentrate) and someone who is more stable. Within the past year or so I have noticed more and more positive articles about hypnosis as a treatment for schizophrenia. The whole area is murky with misinformation and perhaps disinformation. Chris's program doctors were firmly in the camp of it is dangerous to hypnotize, which causes me to think their opinion is formed because their favored approach is drug therapy.

Psychiatrists seem to be sensitive people. If you are seeing one doctor, you are supposed to apparently only do what that doctor recommends, which is coincidentally whatever he/she is specializes in. If I bring up the idea of trying a new therapy (even a one-off therapy) in addition to Chris's regular psychiatric appointments, it's like I'm being hugely disloyal. I don't think it ought to be this way. As a parent I want to get help for my son anyway I can. I would like to say to psychiatrists "get over it". Let's put our egos aside and maybe shave some time off the recovery process by adding some new therapies into the mix.

Hypnosis, done with a responsible therapist, can reveal startling reasons for why we behave the way we do in this life, whether it is overeating, flying into uncontrollable rages, or any number of things. Better still, it can resolve issues that may seem impossible to fix. Young children, in particular, are very close to fetal memories and possible past lives. I am willing to believe just about anything these days, thanks to schizophrenia. Three quarters of the world's population believes in reincarnation. I am not about to argue against what the majority of people believe in. They all can't be wrong.

I would be interested to know if anyone reading this post has undergone hypnosis to treat schizophrenia. If so, do you feel it was done well? What results did you notice? Would you recommend this therapy to treat schizophrenia? If you were seeing a psychiatrist at the time, how did you make your case that hypnosis was needed?

Monday, September 14, 2009

Medical insecurity

I long ago stopped telling Chris's psychiatrists what Chris and I were up to outside of Chris's appointments, the only exception being the holistic psychiatrist, who seemed to sense what we were up to, anyway. Her muscle testing freaked me out it was so accurate. I became afraid to take any unilateral action because somehow I thought she would "know". Do I vote Republican or Democrat? It seemed like she would "know." If I substituted an inferior quality vitamin to what she recommended, I thought she would "know." I grew dependent on her and that's not a wise thing to do with a psychiatrist.

The few times I let Chris's psychiatrists in on what I was doing, I wished I hadn't. Invariably, they would tense up, lean forward, and want to know exactly what kind of esoteric thing I was up to now. None of the extracurricular stuff Chris did involved medications, and they already knew about the vitamins, so what was the problem? In some ways, I am a quick learner. After the whole hassle we originally went through trying to bring in a second psychiatrist to recommend vitamins, I decided that nothing I did afterwards merited confiding in them.

The point of a being a physician, I would have thought, is to empower healing in patients (family is included here), by encouraging them to think for themselves, to inform themselves, and try different things that do no harm while hopefully doing some good. A good physician is also willing to learn from patients. We have been fortunate to have been able to hand pick two of Chris's psychiatrists, who are both quite willing to learn from us.

I recently needed a medical professional to write a prescription for Chris for the Tomatis Method so that the insurance company would cover it. Our family doctor, who I long ago decided is totally unimaginative, flatly refused to issue a prescription. "I don't believe in the Tomatis Method," he said. Perhaps he wonders why I haven't sent Chris to him for regular check-ups in recent years. So, next I tried Dr. Stern, who wanted to have more information about Tomatis before she issued a prescription. Fair enough, I suppose, except that she already knew that the therapy is about music, and is not a competitive threat to her. So we did this little dance, and eventually I got the prescription.

Sunday, September 13, 2009

Clozapine

I find the whole subject of drugs very boring. Ditto for vitamins. There is only such much you can say about them when it comes to treating mental illness. For the record, Chris has been on the following medications. Respirdal, Effexor, Abilify, clozapine, Solian, Serdolect. I think he has been on enough. I thought he had been on enough after sampling only two of them. I feel I have been misled from the beginning about the medications. The hospital never indicated to us that there was another way to treat psychosis, e.g. using megadose vitamins in place of medications or through targetted psychotherapy. Ian and I were new to the game and never thought that there might be alternative theories as to what schizophrenia really is and how to treat it. We trusted the doctors to get Chris well.

We were misled about the clozapine. Chris had only been on Respirdal and Effexor, then briefly Abilify, when the doctors began urging clozapine on us. I had heard it was for the "treatment resistant" (to a layperson, it means they have tried everything else with no success and after that you are considered chronic) and so we resisted putting Chris on it. Having only tried two antipsychotics, I thought it a tad premature to label him treatment resistant. What clozapine did was to add many more pounds onto the pounds that the previous drugs had already added. Chris also had to put up with getting blood tests done every two weeks.

The doctors at Chris's program thought clozapine was marvelous for their patients - they said so often. They didn’t have to deal with Chris’s raging hunger, the fridge door always open and our food bill practically doubling. Chris was now a prisoner in his own body. Unsurprisingly, clozapine didn't improve Chris. Faced with a patient who didn't respond to clozapine, the doctors preferred to leave him on it anyway, over Ian's and my objections. It was their drug of last resort.

Clozapine is a bitch to get off of, but it can be done. You can go into the hospital and reduce it rather quickly while substituting another drug, or you can do it very, very slowly over time. At first Chris's holistic psychiatrist was reluctant to even try taking him off it because she had heard no one had ever come off it successfully. She felt that people who had been on it more than a year would not be able to withdraw. When she told me that, I was crushed. Chris had been on it two years at that point. Lucky for us she was willing to try. It took Chris one year to go from from 25 mg of Clozapine to 0.

Friday, September 11, 2009

A broken mind is not the same as a broken neck

Today at work I passed a man whose son lost the use of his limbs after a snowboarding accident a couple of years ago. These fleeting encounters always give me pause to feel saddened but relieved that Chris had merely lost the use of his mind for a period of time.

After the snowboarding accident, a co-worker organized a charity run and raised a substantial amount of money to help with the young man's rehabilitation. His initiative in doing this is commendable. The young man has huge rehabilitation expenses.

The young snowboarder's physical needs are obvious. Unless a miracle happens, the young man will still be in a wheelchair ten years from now. He will have on-going practical considerations about how to manage his life.

The hardest part for me in helping my son to overcome his problems has been the negativity of the medical profession, who act as if Chris's prognosis in the same league as if he broke his neck. Now, if they don't really feel this way, and most would probably not agree with me at all that their attitude needs readjusting, then why aren't they saying in greater numbers that schizophrenia is a condition that most people can eventually walk away from? Taking a different attitude towards it would help a lot of people stay the course and not become discouraged. The worst part about mental illness at the beginning is the uncertainty because no one seems to be able to tell you what your life can or will be like in ten years, and they seem very sad about it, too. The feeling of being alone with your problem is overwhelming.

Vincent

I was late getting my post out today because I went to an art exhibition. There were a number of paintings by Vincent Van Gogh, which gave me a unique opportunity to look at his work again with the eyes of someone who has lingered in the territory of madness. One of my friends remarked afterwards that it was easy to tell from viewing the paintings consecutively when it was that Van Gogh really started to "lose it." I thought, "Exactly, his art actually got better once he started to lose it as you refer to it. This period of productivity is what the world knows and loves most about his work. This is also when he is at his most interesting as an artist."

His paintings weren't signed, except for one where "Vincent" was painted in large red lettering in the lower left. "That's odd," I thought. "Most artists sign their work." Then I thought about it, and concluded it was odd but understandable if you haven't got a firm grip on "self". You barely feel entitled to be in this world at all. I have seen this in Chris. I used to say that Chris apologized for breathing the air.

The exhibition described Van Gogh's period before he shot himself as intensely "productive." This I construe as a code word for being in a manic state. Seventy-six paintings were painted in seventy-five days and then he shot himself. Another code word described Van Gogh as intensely "religious." Check.

I began to wonder about Dr. Gachet's intentions. Vincent Van Gogh lands in his asylum, which must have looked like manna from heaven to the art-savvy psychiatrist. I speculated that Dr. Gachet handed him some art supplies and told him to get cracking. "Just one more painting, Vincent. You've only done seventy-five so far," he might have urged him. "And, while you are here, how about coming over to my house this week-end and painting my lovely young daughter at the piano? By the way, I'd love a painting of my house, and you might want to think about signing your paintings."

I believe I've just been vindicated in my opinion of Dr. Gachet. I googled him, and sure enough, according to Google (so it must be right, eh?) Van Gogh, too, became suspicious of Dr. Gachet. "Sicker than I am, I think, or shall we say just as much," was Vincent's assessment.

Thursday, September 10, 2009

Coming to his senses: Chris's self-assessment of the Tomatis Method

I began the Tomatis therapy in May of this year and I am just now finishing my third session, in all, thirty one days for a total of sixty-two hours. Two hours a day can really drag on, even if you enjoy painting or whatever tactile activity is offered at the Tomatis Center. Sometimes I just lie down, but this really is to be avoided as in addition to the warning of “you must keep your hands busy”, it can drain you of your energy for the rest of the day.

If you've ever seen “A Clockwork Orange” based on the novel by Anthony Burgess, you can perhaps better appreciate the idea behind the Tomatis Method. In the film, violent Alex loves Beethoven, but after undergoing rehabilitation, including hearing his beloved Beethoven played over a Nazi propaganda film, he is “cured” both of his love of violence and also of Beethoven. By filtering and repeating, ad nauseum, Mozart and Gregorian chants, you really question all your senses and how you derive pleasure from them. The Tomatis Method is really maddening and you get the urge to run somewhere away from the music, and you start to blame yourself a bit for the pain of the constant repetition. It gets lonely as well, with no one to compare your art with and no one to think about while you're listening to the music.

I have always been, if not a clumsy, then a primitive visual artist, yet I've found an appreciation for everything that goes into painting something with meaning. In my Tomatis sessions, I mostly draw stick-figures and simple landscapes, little outdoor scenes with some children or a stormy afternoon. For an eleven-year-old, it's not bad, especially the ones where I use crayons. I want to paint or draw, well, better, but now I notice how every little effect of color, the texture of the crayon or paintbrush, becomes so important to me, that I know I can't draw what's in my mind because my senses are controlling me.

It's difficult to describe the effects of this one therapy because of other therapies and techniques which I have undergone. I don't hear Mozart ringing in my ears as I do my food shopping, but I do become a little tired after the session is over and just want to watch TV and relax, anything to “center” me so I can feel alert to confront the rest of the day. There are overlaps with the Alexander Technique, craniosacral therapy, gem therapy and, indeed, dear old singing lessons. With singing, one of the most important things to get right is being in tune, and I have known people who cannot sing when the rest of the choir is out of tune with respect to the piano. I've noticed that I've become more exacting from my voice, that it is more difficult to sing out of tune. So everyone else is singing, and all of a sudden I stop completely. How much of this can be attributed to overconfidence I'm not sure.

I have noticed that after the therapy I feel much more communicative, and exposed. Previously, when I became angry with my brother over a television show or something similarly stupid, I was able to control my emotions and articulate my frustration. Now, with this heightened emotional sense I find that when I listen to people, they aren't “just people” anymore, but I hear the subtext of their concerns, their emotional presence takes the place of being “a body in space.” The Gregorian chant from the sessions really makes you pay attention to the “spiritual presence”, and this is both confusing (people are less predictable) and also exciting. I get the sense that people can float in and out of rooms, and I start to lose my sense of self. Also, I become more critical of myself, noticing every change in breathing or of not being comfortable and this is very annoying. The music really clears your head, so you can't fixate on any one idea or topic, you have to put aside any concern you presently have, because you're in another place altogether.

Wednesday, September 9, 2009

Documentation of Tomatis results

A Swedish center, Tomatis Nordiska AB, has extensively documented the results of its work with clients since 1998, using a self-rating questionnaire which was developed by other Tomatis centers. These results are published at http://tomatisassociation.org/Content/Documents/Document.ashx?DocId=60422

Of the children with one or more medical diagnoses, the majority had either very serious conditions, such as autism or Aspergers syndrome, or disorders such as ADHD. In spite of these diagnoses, the results indicated that the children demonstrated substantial progress as a result of the training.

One conclusion that the Swedish center drew, is that the training appears to have beneficial effects on concentration and attention difficulties, as well as on social adaptation and behavior, in both adults and children, even in severe cases.

In my son Chris's case, I am extremely encouraged by the subtle, but profound changes I see happening. Chris is a different person today than he was when he began the therapy in May. As an outsider looking in, it is hard to put a finger on it. Chris's voice has changed. He just sounds more "normal" somehow. He speaks in a normal voice about normal things with his brothers. Not that he had what I ever considered an abnormal voice, but something has changed. It's lower, for one thing. His body movements are more fluid. He seems sincere in a manner that I cannot explain. He is calm but more determined. He says his dreams are more vivid and continuous. All of the above must be when people say that someone is becoming more "grounded." He complains of being more tired than usual, which may be an indication that his medication needs lowering.

As long as we stay the course, I feel that Chris's difficulties over the past six years will soon be behind him. Tomorrow's blog will give Chris's impressions of what Tomatis has done for him. I've had a sneak preview. What Chris is articulating about the changes he has noticed, I can reduce to "living less in his mind and more in his senses."

Tuesday, September 8, 2009

Dr. Tomatis asks the right questions

Something I have not been able to comprehend throughout this whole journey, is what little interest Chris's doctors have shown in the circumstances surrounding his birth and his time in utero. Chris's doctors have treated his condition as if it mysteriously appeared in his late teens. I realize now that the gestation period is highly important and provides the first clues to the condition called schizophrenia.

I finally found in Dr. Tomatis a doctor who understands the link, which is really quite amusing because he's been dead since 2001.

When I filled out the client information form at the Tomatis Center I was given a platform to tell all in response to questions such as:

How long was your pregnancy?
Was there anything unusual about it?
Did you have any worries at the time?
Did you and your partner get along at this time?
How long had you been together at the time?
How many pregnancies have you had?
How long was your labor?
Was there anything unusual about your child's development?

The Tomatis questionnaire is directed at detecting trauma to the fetus. Trauma can be a subtle as everyday maternal worry and anxiety or it can be something as seemingly innocuous as listening to Black Sabbath or other heavy metal music, listening all day to the constant whirring of propellers or jackhammers or sleeping with the television on. Loud noises are traumatizing to the fetus.

The questionnaire is no place to be coy. I wrote entire pages and then some. I finally got to tell someone about my forty-four week pregnancy, the fact that Chris barely moved in utero, the twenty-four hour labor, my husband's and my arguments during our first year and a half of marriage, the financial insecurity, Chris seeing space aliens in the park at the age of ten, and so on. Filling out the questionnaire only confirmed the sinking feeling in my heart that the fetal ear hears all and knows all, and some ears are more sensitive than others.

Monday, September 7, 2009

Sound therapy - the Tomatis Method

"Mozart," I thought, and with the word conjured up the most beloved and the most exalted picture that my inner life contained.

In May this year, immediately after his three month stay in hospital, Chris began the Tomatis Method, an auditory training method developed by a Frenchman, Dr. Alfred Tomatis (1920-2001), who theorized that voice and behavior problems are hearing problems. According to him, the voice only reproduces what the ear can hear.

The human ear, which resembles in shape a fetus, begins to develop a few days after conception and is fully formed by the fourth month of pregnancy. The ear doesn't sleep. It is the only one of our sensory organs that is alert twenty-four hours a day. Tomatis theorized that the problems of autism, schizophrenia and other disorders stem from the fetus not fully hearing the mother's voice. If a child is not integrated properly into the early environment, he or she will begin to listen more to certain frequencies than to others, will lose the desire to communicate and will turn inward by listening to her/himself. If you change the way the ear hears, he reasoned, language and behavior change, too.

Each of us has a unique auditory curve, which responds to certain sound frequencies and not to others. To achieve optimal hearing (and therefore understanding) Tomatis invented the electronic ear, a device that filters out certain sound frequencies using the music of Mozart and Gregorian chants. Why Mozart? According to Tomatis, among other things, the music of Mozart encompasses childhood auditory frequencies of 120 beats per minute. The electronic ear filters the music of Mozart to represent the sound environment before birth.
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Hesse, Hermann, Steppenwolf, Bantam Books, 1974, pg. 233

Friday, September 4, 2009

The Alcoholism and Addiction Cure

On the surface, schizophrenia seems to have nothing in common with alcoholism and addiction, however I highly recommend reading the book The Alcoholism and Addiction Cure: A Holistic Approach to Total Recovery, by Chris Prentiss. For starters, the author doesn't shy away from using the word "cure". He doesn't consider alcoholism or addiction either "incurable" or a "disease". These are symptoms that are coping mechanisms that one has chosen in response to life's pain. Medical professionals who refuse to use the word "cure" in the context of certain mental health problems deprive people of hope and virtually guarantee that their problems are forever managed, never cured.

Mental health professionals are being disingenuous when they say that the cause of schizophrenia or alcoholism or addiction is unknown. Some people will stop right there and think to themselves, "well, if a doctor says this, there's not point in my looking any further." It is true that there is no one neat scientific explanation that can explain away the cause, but that doesn't mean that a cause or causes cannot be found. Chris Prentiss makes a clear cut case for finding the cause of the pain by looking at the problem through the prism of the family story. Through my own research and willingness to undertake psychotherapy, I now have some insight into the cause(s) of my son's problems. The causes are both psychological and physiological. I have developed a working theory that makes sense to me. I may be entirely wrong about what the real causes are, but it doesn't really matter because I have noticed whatever we are doing seems to be working. I can empower healing in my son by changing the way I relate with him, by showing conviction that he will recover, and by understanding that his problems have a context.

Chris Prentiss eventually came to realize that his son's descent into alcoholism and addiction was due to the son's deep rooted anger with his father. The family background that he describes in his book provides a plausible explanation for this outcome. Many people will protest that everybody is angry with their father (or their mother) and that most people who are angry with a parent don't descend into drug addiction. Well, actions do make sense if you care enough to pay attention. There is a logic to life.

Thursday, September 3, 2009

Why schizophrenia is not a disease

The mistaken and unhappy notion that a man is an enduring unity is known to you. It is also known to you that man consists of a multitude of souls, of numerous selves. The separation of the unity of the personality into these numerous pieces passes for madness. Science has invented the name schizomania for it.

I do not believe there a pathological disease called schizophrenia. If people labelled schizophrenic really have a disease, it begs the question, why aren't neurologists overseeing their care? The state called schizophrenia often strikes the gifted, the sensitive, the creative - people struggling to express something about their world that others fail to see. I began to understand and appreciate the journey my son was going through when I turned to literature for the answers that Western science seemed unable to provide.

Well, okay, I turned to Hermann Hesse and Google for many of the answers. For Hesse, schizophrenia can be a transformative process.

Demian is about a very specific task or crisis in one's youth, which continues beyond that stage, but mostly affects (sic) young people: the struggle to forge an identity and develop a personality of one's own.

Not everyone is allotted the chance to become a personality; most remain types, and never experience the rigor of becoming an individual. But those who do so inevitably discover that these struggles bring them into conflict with the normal life of average people and the traditional values and bourgeois conventions that they uphold. A personality is the product of a clash between two opposing forces: the urge to create a life of one's own and the insistence by the world around us that we conform. Nobody can develop a personality unless he undergoes revolutionary experiences. The extent of those experiences differs, of course, from person to person, as does the capacity to lead a life that is truly personal and unique.


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1. Hesse, Hermann, Steppenwolf, Bantam Books, 1974
2. Hesse, Hermann, Soul of the Age: Selected Letters of Hermann Hesse, 1891-1962

Wednesday, September 2, 2009

The Diagnostic and Statistical Manual of Mental Disorders

A friend handed me an article by Alex Beam, "Who's Crazy Now?", that appeared in the Boston Globe (Tuesday, July 28, 2009). It is a criticism of the making of the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), and relates the usual criticism about the proliferation of medical diagnoses for normal human emotions, habits and bodily functions (e.g. nicotine dependence and premenstrual syndrome, to name two). It makes the very good point that the losers in this trivialization of mental disorders are the truly mentally ill, who would probably love to exchange places with the merely jet lagged or those undergoing nicotine withdrawal.

The article, while criticizing the marginalization of psychiatry as a profession, has inadvertently shown where exactly psychiatry should be headed if it wants to grow in stature with the public. Well, let me amend that. It shows how psychiatry could reposition itself to feel good about itself. Modern psychiatry appears to be largely about status and not about the people truly in need of its services.

The writer says that adding new so-called mental illnesses is "a naked land grab by a profession threatened with marginalization by biochemical research". Wrong. Biochemical research has not made mentally ill people suddenly well. There is no threat that I can see from biochemical research.

In referring to the last edition of the DSM, published in 1994, blogging psychiatrist Dr. Daniel Carlat has this to say: "The idea was that in 20 years the science would have progressed to where it had hard scientific and biological markers for diagnoses, it just hasn't happened. ... The lack of biological markers to help us diagnose has made us feel in some way inferior to other medical professionals, as if we were not real doctors, because we don't base our decisions on hard science."

Modern psychiatry, feel inferior no more. There are no biological markers and there never will be. Mental illness is largely
p-s-y-c-h-o-l-o-g-i-c-a-l. Modern psychiatry has somehow missed this fundamental point. Take some motherly advice: Hold your head up high and as a profession, get back to doing what you should have been doing all along, which is treating people with serious mental disorders, and gasp, even empowering cure in them. Psychiatry is an art, not a science. Enjoy it for what it is and rid yourself of those who are unskilled in the art of understanding human beings. Let them be brain surgeons or neurologists. Psychiatry is needed, but has turned its back on the seriously mentally ill and their families, whose lives are in turmoil.

I briefly followed a blog by a psychiatrist, and stopped, because all he could write about was insurance and billing. I just bet his waiting room is filled with seasonal affective disorder (SAD) patients. If he has time to blog, which many psychiatrists seem to be doing, he is overachieving and hasn't got time for the people who really need him.

Tuesday, September 1, 2009

The shopping cart

The left coast is chock-a-block full of peculiar people. My word! A supposedly HIV infected guy approached me on the street in Vancouver. Uh, oh, I thought, here comes the pitch. And what a pitch it was.

"Excuse me," he began, "Thank you for at least speaking with me. Most people would not. Do you know that you look like the ex-wife of that billionaire whose last name is - I can't think of it but it begins with a 'T'."

"You mean, Ivana Trump?" I gushed. I looked over at Ian, who is definitely not The Donald. "Ian, give this good man five dollars."

Watching The Soloist on the plane to Vancouver was a great opening act for what was to come. The running theme of the Vancouver and Victoria leg of our August vacation was the shopping cart. At one point in the movie, Nathaniel Ayers refuses to leave his shopping cart behind when he is invited to give a solo concert.

The shopping cart would be an excellent place to begin to learn to treat schizophrenia holistically by understanding what is essential for the individual's sense of survival, which surely must have something to do with his or her past. To me, the shopping cart represents life's laundry. Everything that is important to the person is found within. The cart is wheeled everywhere, often with a plastic bag attached to pick up bottles, which presumably are redeemed for money.

Vancouver, being a laid back west coast city with good weather, has lots of street people driving life's laundry around. I wonder if social service workers have bothered to ask them, piece by piece, what their life is about?

In Victoria, Ian and I were given an interesting perspective on street life by an old friend of Ian's who has had a reversal of fortune. Jim is now out there with the best of them, "binning" as he calls it. He is in hot competition with Victoria's street people for bottle collection and redemption. He waits until after dark, when no one from his previous life will see him, and then heads to the neighborhoods where he knows he can get the most bang for the buck. As we drove around Victoria's streets in broad daylight, Jim gave a thumbs up to a few guys and gals pushing shopping carts, and occasionally pointed out that so and so over there was his main competition for that tax free income.

I know a lady from work who, judging from her appearance and quirks, has extreme mental health issues, but she plays the game of life, none-the-less. She walks to and from work dragging a shopping trolley, but is also occasionally seen trundling a piece of luggage to and fro. She sports bright red earmuffs when it's not even cold outside. To talk to her, she seems normal enough, but her appearance and that trolley set her apart. I wonder what is so important to her that she takes it with her on a daily basis.

I know nothing about her, whether or not she has received treatment for mental health in the form of psychotherapy and/or medication. I suspect, because of her age, that she had not spent a lot of time in psychotherapy. It has only been relatively recently that psychotherapy for schizophrenia is promoted as a treatment that can work for schizophrenia. Since the advent of the typical (first generation) antipsychotics in the 1950s, the benefits of psychotherapy have been downplayed in the rush to pharmaceuticalize treatment. Four years ago when I began my search for other options beyond simply medications, the standard view put out by pharmaceutical companies and the big mental health organizations was that psychotherapy was not considered helpful for schizophrenia.

I am still unclear, from watching The Soloist, how that hospital/shelter, whatever it was that the patients milled outside of, was helping the street people it was supposed to be helping. How about starting with some individual psychotherapy? How about talking with them about what the contents of their shopping carts mean to them?