Sunday, July 21, 2019

Comments by Rossa Forbes

Showing 482 of 487 comments. Show all.

  • The meds have their place, but I don’t like injections because I worry that they come in one size and one size only. Can people ask that the dosage be lowered, for example? Can people eventually wean off them? Clearly I don’t know enough about them. I just know that I’ve always cautioned my son to refuse them because they wrest control away from him and give it to the professionals.

  • But why focus on the lack of insight, which appears to be in the past according to what you write, when you are much happier with who he is today? Saying that someone lacks insight into their own health and well-being just says to me that we aren’t trying hard enough to see that there is always a thread of logic. So many people (I’m not saying you) spend too much time focusing on what is missing, rather than on working with what’s there.

  • Shared Decision Making (SDM) in this context is a disingenuous ploy. The pharmaceutical industry knows more about how this plays out in the doctor’s office than it lets on. It knows that people with schizophrenia (for example) are notoriously compliant due to flat affect or apathy, and may willingly go along with whatever the doctor or family member recommends, not having the means or the energy to self-advocate. I encountered this problem recently when my son, who had been off drugs for several months, had his first appointment with a new psychiatrist. By “appointment” I mean a 15 minute med check. The doctor had never met him, knew that he had in the past been taking oral Abilify, but nonetheless tried to talk him into taking Abilify as a long term injectable. To his credit, my son said he would “think” about it. This doctor in one fell swoop would have introduced him to a form of drug that my son would have had no control over how often or how much he ingests it. Who is in control is critically important, and IMO, long term injectables hand over control to the psychiatrist and the pharmaceutical companies, not the patient.

  • I totally agree about the impact on relationships. I said to a psychologist that our family was seeing that having all of these professionals voicing their opinions was like living with an interferring grandmother. And I don’t know how to avoid it except that when I see an opportunity to drop their help, I do.

  • Dealing with professional staff who seem to always know better is an awful thing to have to go through. The drawbacks of these meds need to be pointed out to them (how can we live with ourselves if we don’t do this), and it seems like a lose/lose situation. If a parent doesn’t voice concerns, the patient may feel that the parent isn’t working in his or her best interests. My son didn’t express an opinion one way or the other about the drugs, and would agree with everyone. He didn’t do his own research on the drugs/take agency, so it was left to me to do the heavy lifting. This is tiring and stressful. There are ways of putting forth concerns without getting the professionals defensive, but these nice/nice approaches don’t always work. Hah. I wonder why these psychiatrists continue to belive that clozapine is a wonder drug. I guess it’s because they are insistinting on a long term injectable.

  • Hi, Stephen,
    I think there is a distinction here between the patient and the family. It is the author who is non-compliant in the eyes of the medical staff and this may be one of the things that is creating a standstill. Not at all easy path to navigate for patient or family.
    Best,
    Rossa

  • “What’s interesting is how both psychiatry and Scientology invoke pseudoscience to trick followers into accepting their delusions.”

    I am so cynical that I would go further and say that just about all human endeavor these days evokes pseudoscience to shut down all dissent and accept their particular delusions. (I’m not even sure what is pseudoscience and what is “real” science, as science is constantly reinventing/clarifying itself.)

  • In his book, Shamans Among Us: Schizophrenia, Shamanism and the Evolutionary Origins of Religion, Dr. Joseph Polimeni provides a brief description of the role of shamans in hunting and gathering societies. Those with schizophrenia characteristics were highly involved in religious leadership (many might say they still are). They

    heal the sick.
    institute magical curses
    carry out divination rituals
    lead religious ceremonies

    I interviewed Dr. Polimeni last year on my blog. (One of my more engaging reads!)
    https://rossaforbes.com/interview-with-joseph-polimeni-md-on-shamanism-and-schizophrenia/

  • I’ll jump in here with an anecdote about an acquaintance who was involuntarily hospitalized (twice) in a psychiatric hospital in the Canton of Vaud. The first time she was hospitalized she was there for a year. She was given a brain scan because the staff thought she had a lesion that was causing her to believe that her ex was an imposter (Capgras Syndrome). That would tie in with the idea of “organic” but of course, they found no lesion. To be involuntarily committed in the Canton of Vaud doesn’t mean that you are not allowed to leave the hospital. On the contrary. She was free to leave for the day, no one bothered to ask her where she was going, and i suppose if she didn’t show up for dinner, maybe the staff would go looking for her, but where would they even begin to look? She was usually somewhere miles away.

  • I am very sorry for your loss. As a parent of a son diagnosed with “schizophrenia” and then promptly medicated, I too wonder about whether the rush to medicate is like going after a fly with a sledgehammer. Not that something significant isn’t happening, but I agree with Szasz that these are problems with living. Problems with living can be understood by most people and handled with varying degrees of success, but medicalizing a behavior makes it strange, horrible and alienating for all concerned. This is the modern way and in my opinion, it is not progress. Okay, this is showing my age, but here’s an example from my childhood that shows how differently the same situation would be handled today (an age of hyper-alertness to what may be just passing behaviors. As a child my younger sister used to go into a sort of semi-trance like state where she would lie on her bed for perhaps 30 minutes or so and spin bits of yarn or string in front of her eyes while whispering to herself and drumming her fingers on her shoulder. My parents had never heard of autism. How did our family sensitively deal with this situation? We made fun of her and imitated her behavior. Sending her to a psychiatrist never entered my parents’ minds. Eventually my sister outgrew the behaviour. I regret the medicalization of my son’s behavior, but there was no competing philosophy that was widely known at the time.

  • Bob,
    It’s great that there is a resource section for the parents of those under 18 and I applaud and admire Eric Maisel’s work in this regard. The onset of the “big” diagnoses (schizophrenia and bipolar) comes mostly in young adulthood. I assume that most parents reading MIA are like me, older parents with related but also different sets of concerns. The language and the focus has to be different, e.g. it’s awkward to refer to our adult sons and daughters as our children, let alone our kids. So yes, it would be great to see something addressing the complexities of parenting the over 18s.
    ..Rossa

  • Catherine,
    This part of what you wrote stands out for me because it validates what high frequency listening can do: “One of my more useful purchases, when I was at my worst, was a CD soundtrack that used binaural beats embedded in nature sounds and ringing Tibetan bowls. I had been listening to this CD every day for about three months when my therapist asked me what I was doing that was different. I mentioned the CD. She said she could tell the difference in my speaking and the calm demeanor I now had. I vowed to continue.”
    If you are interested in WHY you experienced a changed speaking voice and less anxiety see an interview I did in May of this year with Laurna Tallman. https://rossaforbes.com/little-known-listening-program-heals-range-incurable-ills-interview-laurna-tallman/

  • Everyone has an innate set of characteristics, some good, some not so good, and some grow horrible if left unchecked. The environment can bring out the best or the worst of these tendencies and it’s up to all involved to learn better ways to navigate through life if “normal” isn’t working.

  • Do you have children? Do you have more than one child? Adam sounds like quite the little beast, leaving the parents understandably confused about what sprang from their loins. Adam does not have a family environment problem that should be pinned solely on the parents. He is part of that environment along with all the other personalities vying for a say. The parents may have one or two other children with equally horrible but different innate tendencies that they haven’t yet figured out how to harmoniously make work for all concerned. Perhaps you are mostly blaming them because they reached for the medication, the way some people want to drown their sorrows with several good stiff drinks while they pull themselves together enough to try again with a different strategy. Parenting good intentions fly out the window when confronted with reality, and there is a huge learning curve involved with each child that can go on for years. I was so flummoxed by my “own Adam” that I bribed him with candy if he could pull himself together enough to behave himself. Well, obviously that didn’t work so I took him to a psychologist who cleared up the situation in one go by suggesting that the kid needed to be free range. He didn’t ask the whole family to come in for counselling. That would have been rather insulting, actually. Rubbing it in, I would say. I would never have considered drugs and none were suggested. Parents may be reluctant to take their little darlings to psychologists at all, given the way we are tried and executed by people who don’t know even us, they only think they do.

  • My understanding is that the patients are chained to trees so they won’t escape and/or harm themselves or others. While it may look barbaric to Western eyes, the recovery rate is higher in Africa despite our dim view of their treatment methods. Contrast this to what a co-worker once told me: He no longer trusted Swiss psychiatric hospitals because of their open door policy. His 15 year old son escaped several times; on one occasion he was gone for three days. The family was frantic. The next time his son was hospitalized, it was in France, where they don’t hold such a liberal view on these matters.

  • Here’s something to consider: Grapefruit juice. But not if you’re on medications as grapefruit juice can cause a lot of scary problems. I have always had low blood pressure, and a couple of years ago got into a habit of having of freshly squeezed grapefruit juice in the morning. The only medication I take is a daily baby aspirin. Well, I could hardly get out of bed in the morning and had trouble walking because I had that “low blood pressure” feeling, which for me is feeling “winded.” It was awful. I asked myself what was I doing differently, found out that grapefruit juice lowers blood pressure, and also that if you have low blood pressure you should take a baby aspirin during that day, not at night (as I had been doing). Stopped the grapefruit juice, switched to taking baby aspirin in the morning, low blood pressure problem solved. No need to go to the doctor (who wouldn’t ask what my habits were.) For people with high blood pressure, grapefruit juice seems like a good avenue to explore.

  • I should look up Schlller’ comment again to find out if she was on 31 different prescriptions or 31 pills comprising fewer prescriptions. Thirty-one drugs is definitely outrageous, but swallowing 31 pills a day is still outrageous. And, here’s something to consider. At one point my son was swallowing about 31 pills a day of vitamins and nutrients. That was outrageous, too. Nobody should have to do that. But I get that if the doctor tells us that’s what we need to do, many of us will do it. Doctors bear a lot of responsibility here. Who in hell would advise their patients to do all that swallowing?

  • Her death is tragic but avoidable. She seemed to be, in addition to being a lovely caring human being, a person who put too much faith in medicine, rather than bailing out, like most survivors do. It doesn’t have to be psychiatry that is the villain. Half of any given population seems to want to trust their doctor. Nobody, but nobody, should be on 26, let alone, 31 pills per day. This is the only mention I can find of Lori Schiller’s death. (And yet, it doesn’t say she died.)
    https://prezi.com/m0zmcwwl9iwl/remmbering-lori-schiller/

  • I agree with your assessment that people preaching alternatives have the same biological model in mind as those pushing pharma. These people are well intentioned, and some people do get better using their treatments, so I’m glad about that. A lot of people don’t become as well as the proponents claim that their patients do, however. Lots of hopes are being raised that are then dashed. Abram Hoffer was a medical doctor/psychiatrist with a Ph.D. in vitamins. Vitamin therapy looks like a gentler way to overcome psychosis that chemical lobotomies, but how effective is it? We spent a lot of time and money chasing the vitamin/nutrient path for my son, who reacted well at first, but couldn’t sustain a non-drug “recovery”.

  • Yes, Hoffer claimed that some people naturally need higher levels of the B vitamins and this tends to run in families. Pellagra was rampant at the turn of the last century (1900s) especially in the southern United States about the same time that commercial white bread became popular. (I’m going from memory here on what I recall from reading Hoffer’s books.) I don’t know why pellagra was so acute in the South compared to other parts of the country.

  • Thinking of Lauren Slater, I just recalled Lori Schiller’s book, The Quiet Room, which was first pubished in 1994. Both writers have the initials LS and both are killing themselves. In an update to her book in 2009 Schiller says that she’s currently on 31 drugs (31 drugs!) and struggles to get out of bed in the morning. She confides that she and her mother went on the speaking circuit after the book was published because Sandoz wanted them to promote clozapine. If clozapine was so good, why is she on 31 drugs in 2009 and struggling to survive?

  • I love your writing Julie, and this review of Blue Dreams is a personal best (IMO) so far, although, unfortunately about a sad subject. I read the book preview on Amazon, and the opening page is a “killer.” I felt sorry for her and perplexed along with most others here about why she hasn’t connected the dots in ways that matter to her life going forward. When you go to the book reviews of it on Amazon, you find that some (pharma reps, no doubt) are trying to discredit her supposed lack of research by claiming that she doesn’t rely on “science” and she’s out of her league as a psychologist, by not being a psychopharmacologist. Without having read her book or knowing her writing I conclude that being “ill” is part of her identity, There may not have been much identity there before she reached the tender age of 19, which isn’t surprising as isn’t the cliche of finding one’s identity most assoiated with people in the turbulence of late adolescence? Think about putting this review on Amazon and (hint) give it a low star rating so that it will be more easy to spot. There are only 5 critical reviews there so far.

  • Hi Chris, as I sit reading your e-mail I am listening to Koshi wind chimes on Youtube high frequency (432 Hz) music. I also listen to Mozart violin concertos and Gregorian chants, which were specifically recommended by Dr. Alfred Tomatis in his work with learning and language problems. Dr. Tomatis did not specifically address the condition of schizophrenia and bipolar (and one can imagine why). Drawing on Dr. Tomatis’s work as well as Dr. Guy Berard’s, Laurna Tallman modified the method by, amongst other things, blocking the LEFT ear in order to strengthen the right ear stapedius muscle, which she maintains is essential for overcoming conditions like schizophrenia, bipolar, chronic fatigue, and dyslexia. In my case I seem to have kicked a life long nail biting habit. (Never saw that coming.) I did an interview with Laurna on my blog. https://tinyurl.com/y9469nfy What is missing in a lot of what passes for treatment today is “access.” Few people can afford or can afford to travel the places that offer things like neurofeedback or Tomatis. For the price of a good headset and access to downloaded music, people can do the work from home.

  • Hi Eric, I have no comments on neurofeedback, but am glad for the heads up, as it can be easily confused with “biofeedback” in people’s minds, as you have demonstrated. I’m intrigued with your description of the contrast of Eleanor Longden’s voices with your own. I’m obviously not an expert in these matters but what you wrote reminded me of Dr. Abram Hoffer’s observation that paranoid schizophrenia (which sounds more like Eleanor’s as hers didn’t seem to involve the cosmos, God, angels and demons, etc.) is relatively easy to “fix.” I’m visiting a friend who has been committed to the hospital once again and if she’s ever had a religious or philosphical thought enter her head, she keeps it VERY well hidden. Her delusions seem to quite banal and focused on people she actually knows (her husband’s a fake, people are out to get her, etc.) I’ve always heard that women’s schizophrenia is not generally as severe and women are more likely to recover than men. The content of the delusions may be one of the clues. Thanks for another enjoyable and thought provoking story, and best wishes going forward.

  • Bravo, Mat. Your story is deeply moving and impressive in how hard you wanted to change. A lot of people who comment on MIA make the case that there is no need to change, people are fine just as they are, and how dare others suggest that the problem is yours. I have a sister who is dyslexic. My childhood often wasn’t as perfect as I thought it should be because she was always in an uproar. The spillover to every aspect of family life was huge. It has only been quite recently that I have begun seeing her problems as hearing related. People who don’t hear well, or whose hearing lags their intelligence, get tremendously frustrated, hyperactive, and impulsive. They don’t read other people well and can be easily influenced. All of this leads to more frustration. Your balance beam idea was brilliant because at some level you surmised that your ear might be the problem. These are just my most recent evolving thoughts on the origin of “mental” illness.

  • Who ever has “one” episode of psychosis? How long is a”single” episode supposed to last? Does “one” episode of psychosis mean that you have it and get over it in a day or a week? If that’s the case, very few people would even get to the doctor’s office or to the hospital, so it wouldn’t show up in the statistics. My son entered an “early” psychosis program and the “early” part was problematic to me. He had been acting strangely for three years so “early” didn’t mean the same thing to me as it did to the program that was eager to scoop up as large a client base as it could. More clarity around these words would be helpful.

  • Hi, Mike I’m replying to my own comment because we’re out of thread. My son is now 34. He is on 1 mg a day (I think but not sure of the specific dose and how often he takes it) of liquid Abilify. He’s on no vitamins because the vitamins became simply too much, too many, a tyranny in their own way like the drugs. (He started out on risperdal and Effexor while hosptalized at age 20 and was on various meds like clozapine, Serdolect, usually in combination until he went to only 1 when he was 26. My problem with Dr. Hoffer, whom I greatly admire (and even met on one occasion) is that I distrust his results. Why couldn’t we duplicate them and the only reason I can think of is that the drugs confused what was going on. We finally gave up because my son wasn’t well, and this was after not just the niacin but going full throttle by introducing a naturopath/holistic MD into the equation. There is so much going on with schizohrenia that it’s hard to disentangle what intervention is producing the new symptom or getting rid of the old. There is a huge social aspect to this, meaning that someone will have difficulty recovering if others talk down to them, correct the faulty logic, etc. etc. I would have liked that my son went on niacin from day 1, not an antipsychotic, because I think that then I would have seen better results, but there wasn’t much support to keep going for years with the regime. People/famlies also need pep talks in order to keep going. I’ve read all of Dr. Hoffer’s books and articles, and what I liked most was not the results (in my son’s case), but the positive attitude he encouraged others to take towards schizophrenia. I’m in my usual rush and probably not making sense. It’s going to be tough dealing with your mother’s doctors, who won’t want her off the drugs and will at most “tolerate” the niacin. Here’s something I do recommend that is non-drugl and shows a lot of promise based on my experience with holistic interventions. I have several blogs on this topic (Focused Listening) going back to June 2017, I believe.) Start at Jan. 6 2018 and read forward. I return to the topic several times. https://rossaforbes.com/blog/page/2/

  • I’m jumping in here as I’ve been somewhat following the thread. My experience giving my son niacin was that irt is premature when someone is on meds. The effects get lost in the fog of drugs. Hoffer (correct me if I’m wrong) prescribed it to people not on meds. I was so eager to try it that we did it anyway. I noticed improvements, but he didn’t “recover” on niacin. I would hate to see you going through the expense and ending up spending money and lots of time, but having the meds confound the good that I believe niacin can do.

  • I’m with you Alex on just about everything. I detest the professional aspect of all of this, but try not to let it get to me. Just today I was looking back at the years of psychotherapy my son has had, and getting angry about it, while knowing at the same time that his psychiatrist provided a sympathetic ear and paid friendship when the rest of his friends abandoned him. That’s worth a lot. Re the Laing quote, you brought out an interesting point: When my son had his crisis, my husband and I ended up auditioning new roles and playing new “games” in order to keep up with my son’s constantly changing behavior. A mental health crisis is almost like a creativity bomb that gets dropped into a group setting. It’s exhausting and really keeps you on your toes. Sometimes I’d settle for a little less creativity, though.

  • I’ve been following your comments here at MIA and send you and your wife good wishes. I think I first heard it from Dr. Abram Hoffer who observed that the people who recovered best were the ones who took themselves out from the medical model as much as possible. Sounded good to me.

  • Droolng houseplants, haha. Nicely put. Having endured some really scary stuff with my son, I am also sympathetic to your mom’s view, but only to a point. There comes a point when one must get over the fear and challenge oneself to look at the situation from an entirely different angle. Probably a good thing that you twol are no longer living together. You need to breathe!

  • Exactly. There are solutions (or should we call them possibilities?) and they are invariably outside of the mainstream. Not to say that they are easy to find or that they are 100% effective, but I have found that they move us forward. One of the CERN physicists (was it Higgs or was it Boson?) said something like just about anything in physics, once it’s conceptuaized, will eventually be proven. Seek and ye shall find, etc. etc.

  • Hi, Steve,
    Thanks for giving me a sort of compliment, but actually, I, too, believe that the value of nutrition in treating mental illness is over-hyped. Homeopathy is not nutrition, so maybe that’s the confusion. People often think homeopathic remedies are nutrients, maybe because they see the potions on the pharmacy shelves next to granola bars, but they aren’t. Homeopathy is a natural form of medicine (ulta-diluted substances) used to treat acute and chronic conditions.
    …Rossa

  • Thanks, Nancy99 for your thoughtful response. When you are talking about the placebo effect, you are referring to the standard definition of the placebo effect in that the patient expects that whatever is provided will make him or her well, and I’m guessing the time frame has to be short. “Take this pill or this potion, and you should expect to be well in X amount of time.” Neither psychotherapy nor homeopathy are short term treatments for mental distress. You have to believe enough in their curative powers to keep going, and this can take years. I’m leading this thread far off topic, and I’m no expert in homeopathic cures, but actually, the opposite of what you said is true about homeopathy: It works especially well for mental disorders. How exactly it works is not known, but the same can be said for many of today’s effective treatments.

  • Really? You are dismissing the neuroplastic effect of music on the brain and water containing ultradiluted substances that provide information to the body as placebos? It’s understandable in the case of homeopathy (which developed the first placebo-controlled studies in the mid 1800s (Dean) that American allopathic doctors are skeptical because most of the current homeopathic research is being done outside the United States. In the case of Tomatis, Tomatis therapists will proudly tell you that Tomatis was employing the concept of brain plasticity many years in advance of the neuroplasticity of the brain becoming widely accepted by the greater medical community. My point is, everybody is selling us something, and they believe in their product. They’ve all got convincing, scientific sounding arguments (and research), but to claim that their product is the ONLY path to salvation is, as Larry David might say, “a bit much.”

  • Dr. Berezin,
    You make a good case for psychotherapy as a biological healer, but surely it is not the ONLY biological treatment. You are a psychotherapist so it’s not surprising that you make this claim about your area of expertise. Dr. Alfred Tomatis, an otolaryngologist (1920 – 2001), was equally convinced that THE biological method of healing the brain (and the psyche) is through filtered high frequency sounds (Mozart concertos, Gregorian chants, etc.) that recharge the vestibular system of the inner ear (and whole body) with energy, and encourages the right side of the brain to “talk” to the left side. In Tomatis therapy, emotional disorders are treated as listening problems. A classical homeopath makes the case that homeopathic remedies are tailor made to treat the causes of symptoms, rather like what psychotherapists claim.

  • I especially appreciate Ron’s term (and warning) that he calls “awfulizing” psychosis. (Link doesn’t work, BTW). As highfellow points out, “psychosis as personal tragedy requiring lifelong treatment’ is the popular view, the medicalized view, and it’s a self-fulfilling prophecy if adopted. I liked reading Will Hall’s explanation of what recovery is like for him. It sounds about right; a foot in each world.

  • “it makes us feel like you only see ND people as burdens when it is possible to have healthy mutual relationships. maybe that’s not possible with your husband, and if so, our condolences and may you work out what is best for both of your needs. but don’t make it sound like that’s the case for everyone.”

    Did you read what Julia26 wrote, over, and over, and over again?

  • Julia, I get where you are coming from, but from a mother’s perspective, this is not the Poseidon Adventure. I have the impression from reading your comments over the years that you figured it out for yourself, maybe later than you would have preferred (my impression only). Wouldn’t I have loved it if my son could have figured it out on his own, at the age of 20, or maybe even 25? Even 30. It would have made my job a lot less stressful. My son was quite willing to do whatever anyone told him to do, and that included the “professionals” who told him he had a life long disease, needed life long medication, and should lower his expectations. How long would it have taken him to figure it out? He didn’t do the heavy lifting. (He lacked the concentration to even read for quite a while, let alone do his own research.) He was scared and confused. How long should someone wait? My role was to encourage him to take responsibility for his life. The problem was, for the longest time, he was unwilling to take responsibility, or was unable to do it. We hear a lot on MIA from the people who figured it out for themselves. For some people, unless they are encouraged, it ain’t going to happen. Isn’t encouragement and hope what everybody in MIA claims is missing from mainstream treatment?

  • Julia26, I couldn’t agree more. Why do “professionals” and people with lived experience, have more credibility in the court of public opinion here (on this comment thread) than family members, who are also experts by lived experience? I take a very skeptical view of professionals and alternative healers, and prefer to cherry pick the ones that can help my relative. I try to avoid “professionals” as much as possible, because aren’t they the reason MIA was created in the first place? As a reaction to the damage done by mainstream treatment? Professionals here on MIA write about their clients all the time, but don’t use their names. Neither does samruck2, so why is his voice, and the voices of other experts by lived experience, being told to sit in the comments section?

  • I would tend to agree with you, Steve about integrative medicine “privileging” MDs and drugs. However, I looked up Susan Samueli’s background and was gratified to see this:
    “She developed an active consulting practice in the areas of nutrition, homeopathy, and Chinese herbs and subsequently received a PhD in nutrition from the American Holistic College of Nutrition in 1993 and a Diploma in Homeopathy from the British Institute of Homeopathy in 1994.”

    Homeopathy is supposedly one of the two most controversial subjects on Wikipedia https://www.huffingtonpost.com/dana-ullman/dysfunction-at-wikipedia-_b_5924226.html My experience with what homeopathy can offer when it comes to mental “illness” has been most encouraging.

  • I agree with Dr. Steingard’s analysis. There are enough confounding variables re introducing antipsychotic medication early as to make the study conclusions meaningless. I suggest that other confounding variables are the age of onset and the sex of the individual.

    I am saddened that, knowing what we do know, that many people will not need to embark on this perilous journey in the first place, they are none-the-less continuing to be coerced into it by spurious studies. How quickly one journeys from “first episode psychosis” to being labelled “chronic.” It’s a preventable journey in theory only. Tragic.

    Of course, now that a former pharmaceutical exec (and lawyer!) has been appointed the new Health and Human Services secretary, there’s not a snowball’s chance in Hell that the system is going to change to accommodate those who want to avoid treatment with antipsychotics..

  • Don’t feel discouraged, FeelinDiscouraged. You will more likely have a good chance of dying a virgin if you become a nun or priest, lol. Church leaders, in my experience, are really weird people, just one visit away from a DSM label. And they know this, and close ranks on the topic of mental illness. I could never “get” why people who preach about God, prophets, and visions, also think there are mentally ill people. Maybe that’s why the Book of Revelations doesn’t get much play in my church. Too close to home.

  • From the website of Doctoryourself.com Hoffer anecdote
    http://www.doctoryourself.com/hoffer_anecdote.html

    “Professor J.G.D. Birkmayer and his associates at the Birkmayer Institute for Parkinson Therapy in Vienna, Austria, studied a stable form of NADH. They found that their stable preparation using 5 mg doses was therapeutic for Parkinson’s disease, for Alzheimer’s, and for depression. (3) They wrote,” When we first used NADH with regard to its clinical efficacy the effect was not convincing.

    This was most likely due to the rapid dissolution (approximately 10-15 minutes) of the capsule leading to a release of NADH into the acid conditions of the stomach. Since NADH is rapidly oxidized below pH 7.6, the conditions in the stomach will inactivate NADH by converting it to NAD. The investigations of this report were therefore performed with NADH capsules coated with an acid stable film and a release time of 2-3 hours. With this galenic formulation of NADH an improvement in disability could be achieved which was comparable to that of intravenously applied NADH.”

    In our studies we used NAD, which was the only form of this coenzyme available, in doses of one gram daily, but the Austrian group found NADH active at 5 to 10 mg daily.

    NAD and NADH are interconvertable in the body. This suggests that the active form is the reduced form, NADH, and that NAD is much less effective since it would first have to be reduced to NADH. The decreasing order of therapeutic efficacy would be NADH, NAD and finally vitamin B3. There would be no formation of NADH in the stomach from NAD, but there would be some made in the intestine.

    I hope these recent Birkmayer studies will reactivate interest in the therapeutic effect of this potent coenzyme made from vitamin B3. It is available from Menuco Corporation, 350 Fifth Avenue, Suite 7509, New York, NY 10118.”

  • My son tried it (along with other supplements) for a while. The dosage was 20 mg. He eventually stopped taking it. While I was initially optimistic that NADH would turn things around, it didn’t. That’s not to say that my son didn’t improve. He seemed to improve mentally and emotionally with just about every non-medically sanctioned treatment. It’s just that there was no magic bullet (NADH included) in my experience, to overcome his resistance or inability to take the necessary steps to becoming self-supporting and independent. Or maybe it is the clouded thinking that hasn’t cleared up enough to enable him to take these steps. NADH is worth trying, in any case. Chances are it works best for the percentage of people whose “schizophrenia” is due to a vitamin B deficiency.

  • Well said, Corinna. Where do you go when doubts begin to creep back in? Going “inside” is the only place I can think to go, drawing on whatever it is that will illuminate the present moment. Matt was so wise, but still young and therefore, vulnerable. He was just such a beautiful person. Getting to that bright spot is never easy.

  • Your comment is loaded with good information. Thanks. Hoffer was doing research on NAD, which was the only form of the coenzyme available, and I think he wasn’t actively researching it by the time NADH became commercially available, Hoffer had more or less retired.
    Here’s what he had to say about NADH:
    From Doctoryourself.com
    NAD and NADH are interconvertable in the body. This suggests that the active form is the reduced form, NADH, and that NAD is much less effective since it would first have to be reduced to NADH. The decreasing order of therapeutic efficacy would be NADH, NAD and finally vitamin B3. There would be no formation of NADH in the stomach from NAD, but there would be some made in the intestine.

    “I hope these recent Birkmayer studies will reactivate interest in the therapeutic effect of this potent coenzyme made from vitamin B3. It is available from Menuco Corporation, 350 Fifth Avenue, Suite 7509, New York, NY 10118.

  • Then the people around you should lighten up. Seriously. If I go around hitting my son over the head with how “seriously” mentally ill he is, that destroys us both. I cannot stand the term Serious Mental Illness. It’s an invitation to abuse people, as you so rightly pointed out, real science behind them.

  • Madmom, Every time I”m tempted to think that schizophrenia is exclusively due to a trauma of some kind, I think of my father in law who saw psychiatrists on and off for his ulcer, which was attributed to anxiety back in the day. His ‘anxiety’ cleared after taking Tagamet for a week. I’ve been going in circles with my son. Is it a reaction to trauma, is it an undetected medical condition, is it psychospiritual? if his condition eventually clears up with niacin, or an antibiotic, or some other medicine or nutrient, it would tend to negate the trauma theory (which we all suffer to some extent or another), but not entirely. From what I know having interacted with many kinds of holistic healers, trauma can include a virus in the womb, a car accident, an illness of some kind. It’s not just about a crummy home life. And then there is the trauma related to years of treatment going nowhere. Psychotherapy has been very helpful for him, or so it appears. But, it is lengthy, and one wonders if what underpins his intense spirituality and ethereal nature has more to do with an undetected medical condition than a psychiatric one. So, like you, I keep an open mind to all claims, knowing that what works for one person may not work for the next.

  • Just a thought, but maybe the psychosis and the anger is a bit of a detox reaction or just an adjustment to the drug (niacin acts like a drug when used in high doses). It is extremely difficult for family members to ride out the anger and the psychosis, etc., which makes us jump onto a prescription drug just to end the agony. I don’t think we ever give these solutions a long enough trial period. Support from the medical community, as I said in another comment, would help us hold on longer, but the support is just not there.

  • I also met Dr. Hoffer and admire his work. The niacin (or more specifically, niacinimide) always improved my son in some way, but didn’t cure him. I followed his protocol from the information that was available through his books and on the web. Medical supervision strikes me as overkill in this case, but I can understand that the author must be cautious when recommending the treatment. Not everyone who is “schizophrenic” will recover using niacinimide, despite the great success that Dr. Hoffer claimed. He said that chronic schizophrenia was difficult to cure, he said that there are some people who are vitamin B deficient, and it runs in families, so that’s also a separate category of person. “Schizophrenia” is a syndrome comprised of many different symptoms of different origins. Perhaps if more physicians got on board with the Hoffer protocol to offer encouragement and support to patients, we would see more stories like this one. Instead, we have to muddle through the protocol on our own (although it’s not difficult) all the while wondering if it is really doing what Hoffer says it does, and dropping it too soon if we don’t see real progress.

  • Hi, Madmom,
    You are very articulate and insightful in telling your story, so I suspect that you are a better listener than you give yourself credit for. If I may offer one bit of advice from my experience with my son, it is: don’t bother looking for help within the system. Help doesn’t exist there as a place we can turn to on a regular basis with any confidence. Instead, when possible, bring your daughter more into contact with holistic and creative types (people like your husband). From what you write, it sounds like you’re probably already doing this. I agree with the above comments – immerse yourself in the readings that your daughter is already doing. You’ll find out pretty soon how creative you really are!

  • I’m open-minded as to the possible benefits of LSD for psychiatric patients, including (horrors) when given to people with psychiatric diagnoses like schizophrenia and bipolar. People with these diagnoses were routinely discouraged by their doctors from something as helpful as meditation, as this was thought to “destabilize” them. (I was really annoyed when the TM center wanted permission from my son’s psychiatrist to participate.) The only help available is generally what psychiatrists determine to be helpful, which, unsurprisingly, doesn’t stray from the services they provide. My son (unbeknownst to the psychiatrist) went through several out-of-body experiences induced by sound, and he benefited a lot in terms of growing insight. If LSD had been offered, I would have encouraged him to go for it. Unfortunately, it seems that LSD in controlled therapeutic settings is only being encouraged for cases of depression associated with end of life issues. Pity.

  • As someone who, as a parent, observed/participated for two years in an early psychosis program (in Europe), I’d like to make a few comments. Early psychosis programs always sound like “a good idea” and maybe these “good ideas” will eventually result in good practice, if done right, but the devil’s in the details. I’m quite encouraged by this post, but would like to add some further thoughts based on my observations as a parent of a son (schizophrenia diagnosis) who was enrolled in an early psychosis program, who, to my mind, should have been much further along the road to recovery than he was when he left it. Recovery from a severe form of psychosis is usually a lengthy, and multifaceted process. It doesn’t fit neatly into a recovery oriented program with a tight schedule and benchmarks to meet.

    The program was open to all young people between 18 and 25 who were experiencing a first episode psychosis. This means that people who had psychotic depressions were mixed in with people like my son. It is supposedly easier to overcome a depression with psychotic features than it is to overcome schizophrenia. So, a number of these young people looked like they were breezing through the program while others were the “slow learners.” Bad for fostering optimism for the individual and for the family.

    The program paid a lot of attention to building psycho/social skills, to its credit, but a lot more attention was paid to fine tuning the medication. Medication was always front and center.

    The program adopted a one size fits all mentality, which is almost a given with these kinds of publicly funded programs.

    The program paid far too much attention to psychosis induced by recreational drug use. It was offensive to those family member’s whose relative’s psychosis wasn’t brought on this way.

    These programs were run by “professionals” as one would expect. (Doctors, nurses, social workers, psychologists, occupational therapists, etc.) They considered themselves the experts, and families were there to “learn” from them. It is disempowering to be encouraged to think that others always know best, when a lot more can be done to encourage families to find solutions based on what they know. This is the way these programs are run, and will forever be run because they are making use of public resources, not just financial, but human, too.

    I’ve devoted several chapters in my upcoming memoir (to be published later this year) to the early psychosis program that my son participated in. Despite my experience with one such program, I do believe that there is always room for improvement, and I’m glad to see that Robert Nikkel is giving thoughtful consider to these issues.

  • “Research transforms lives.”

    An exquisite example of our family’s entanglement with CAMH. As recently as 2003 we were told that my son’s brain was settling [into concrete–the “plastic” brain theory was looming on the horizon] and that if we wanted to help him we needed to “protect his brain” with antipsychotic drugs. That line of thinking was repudiated by Nancy Andreasen’s admission in the New York Times in 2008 that the longer you are on antipsychotics, the more brain tissue you will lose.

  • Tabita, your five points are definitely the essential five for family members to absorb. We often focus too much on achieving educational milestones and not enough on taking the time to learn how to be resilient.

  • Rebecca, I believe you when you say that you never would have medicated him for mild inattention, etc., but like Stephen here I also wonder why truly awful childhood behavior is construed as a sickness. I see these little monsters (I was one of them) as adults trapped in children’s bodies. We don’t fix ourselves until eventually the acting out gets in the way of our wanting to join society. In the meantime, family life is sacrificed to the personality of its smallest members. We are being told the chemical imbalance story and that normal children don’t act this way, but there is a spectrum of childhood behavior that is seen from birth. School is no place for hyperactive young boys, and for most boys who don’t learn the way girls do, but what are the alternatives? Almost none. Perhaps one alternative should be more support for the idea that children are little savages, and parents need every trick they can muster to ride out the time until the child decides that their parents are stupid and living at home sucks. Another alternative IMO is segregated classes for girls and boys with curriculums for the boys involving more life skills and less academics (They catch up pretty quickly in their mid-teens.) Schools have become the neighborhood drug pushers. I’m glad that you are telling your story because it’s wonderful to hear from doctors who drank the Kool-Aid and are having second thoughts. I sympathize with your situation because it does leave you in an awkward position vis a vis the medical profession.

  • Having worked with using a lot of supplements for my relative, they have real heath benefits, but, they’d be good for anyone, as you suggest. We get sucked in to the belief that supplements are a lot more important than they are when it comes to severe mental illness. (I don’t agree with the SMI term, but I’m trying to make a point.) I’m glad the author finally saw the light, but her medical training, IMO, is a hindrance, not a help, in these matters. She’s still seeing the science, not the art.

  • Much as I wish it were so, I would hesitate to agree with your assertion that a cause of schizophrenia is malfunctioning central nervous system, which presumably treating the gut and doing other nutritional interventions will cure. Sure, most people do wonderfully well when they are ingesting nutrient dense food and supplements, and no longer on pharmaceuticals, but in my experience, “schizophrenia” is much more elusive. I’m glad the author’s son is doing well, but he is probably doing well because he’s off the drugs and never should have been drugged in the first place.

  • I am reading Lori Dennis’s book now, and she mentions the flu vaccine that her son was given a week before he started getting symptoms. I am shocked that the CDC recommends flu shots for everyone 6 months of age and older. Babies and young adults don’t need flu shots. They need to give their immune systems time to strengthen. When did it become standard practice to push unnecessary vaccines on the young? I don’t remember them when my chiildren were young. There’s huge amounts of money to be made by the vaccine manufacturers, of course, and public heath agencies make it standard practice. Canada, as usual, follows U.S. practice. One may well question why Lyme disease is becoming so prevalent.
    From the CDC website:
    When and how often should I get vaccinated?
    Everyone 6 months and older should get a flu vaccine every year by the end of October, if
    possible. However, getting vaccinated later is OK. Vaccination should continue throughout the
    flu season, even in January or later. Some young children might need two doses of vaccine. A
    health care provider can advise on how many doses a child should get.

  • An interesting article. I do see the relevance to the MIA community, and I welcome the inciusion on this site of articles about diseases that mimic, in part, mental illnesses such as schizophrenia and bipolar. We’re all in the same boat when it comes to dealing with the medical community. Mania or hallucinatiions, whether the result of Lyme disease or a problem in living, are well, mania and hallucinations, and pretty scary to those experiencing them and to those who love them. One day, who knows, the more serious mental health conditions may turn out to be the result of a bacteria – it happened with ulcers (it’s the anxiety in your head, see a psychiatrist and drink plenty of cream). My son recently saw a neurologist in order to cross Lyme disease off the list of suspects for his “schizophrenia”. (We didn’t really think his symptoms were Lyme related, but again, he had not been tested early on when he developed psychosis, so why not rule it out? The neurologists ran him through a series of observational tests (no blood tests), and pronounced that he didn’t have the symptoms of Lyme disease. He was normal in all of the other tests, yet the neurologist still said he is “schizophrenic.” (No doubt because he carries the label around him like a scarlet A.) I would love it if one day it turns out a germ did cause this and a simple antibiotic would clear this up, but until and if science comes up with an answer, he continues to make progress through psychotherapy and alternative treatments.

  • Found it! Geel is for long term care. This is not appealing to me because without further qualification, the following extract from NPR assumes that schizophrenia per se is severe and chronic, therefore the assumption is long term care. This is how the public generally regards schizophrenia. There are no nuances in collective thought. “There are a few important criteria for acceptance into the Geel program. The program typically selects patients with severe mental illness or cognitive disabilities who have difficulty living independently. In 2003, almost half of the town’s 516 boarders had a cognitive disability, and over 20 percent carry a diagnosis of schizophrenia or other psychotic disorder, according to research by Jackie Goldstein, a professor emeritus of psychology at Samford University. Some boarders have traditionally had other conditions such as learning disabilities or autism…..Boarders tend to stay in family care for years. In some cases, when boarders’ caretakers grow too old or die, they continue to live with their caretakers’ children. In 2005, nearly a third of boarders lived in a foster home for more than 50 years.”

  • I’ve been giving more thought to your wondering why I have a problem with Geel. I’m looking at Geel from the perspective of a parent, not a clinician, and I think that’s where the viewpoint differs. Parents like me want something to aspire to, we’re looking for recovery stories. Clinicians don’t seem to mind the idea of populations of people who can be studied over the long term, and who are managed without necessarily recovering. Geel looks like long term care to me, which doesn’t sound very appealing because I want my own relative to finish his education, get a job, move out of the house, eventually to do all the things that ‘normal’ people do. When my son was experiencing psychosis a few years ago, I would have loved to know of a place where I could send him for a week-end or a week or two, to give me a needed break, before returning to the onward and (hopefully) upward struggle. If Geel provides that kind of help, well that’s a story I would love to hear. What mostly comes out of Geel, for those not intimately acquainted with it because we don’t live in Belgium, is the impression of the long term chronic state of schizophrenia. Clinicians probably wouldn’t even notice that this may be a problem for people like me who need a good deal of hope to keep going.

  • Dr. Berezin,
    Thanks for your clarification, although I have to say I didn’t take away the same amount of hope from your article as you wished to convey. (I may be a poor reader.) My problem with Geel is the impression that is left with people like me who haven’t travelled there and don’t know its intimate workings. We rely on how others portray it and the message that I often take away is that ‘schizophrenics’ are people who are disabled for life, because they have to live apart in a sort of idealized Disney village where townsfolk take them in ’cause no one else is up to the job. They are mentally slow and can’t work and they’ll stay in Geel for life (probably not growing old. Lol.) Many of us are trying to get our relatives to lead full lives outside of the home and maybe the community center, and people who don’t know that there may be a different story to are getting their news from Geel: Schizophrenia means institutionalization, just in a town setting, not a hospital. But, I’m glad to hear you are hopeful, in any case.

  • I’m confused by much of Dr. Berezin’s post. We are expected to believe his blanket statements that all psychiatric ailments spring from trauma because he describes how the brain responds to trauma. One doesn’t follow from the other, even if a psychiatrist says so. We are in the realm of speculative thinking, not science. I share his appreciation for psychotherapy, but then what are we supposed to make of his view of Geel, a place where ‘schizophrenics’ appear to be warehoused to live out their lives “as respected members of their families. Also keep in mind that there is an acceptance that there is often some disability present.” What does that mean? The presence of a disabilty sounds biologically linked. What role does psychotherapy play in the lives of these ‘disabled respected members of the Geel family’? Dr. Berezin appears to believe that people don’t recover from schizophrenia if they don’t recover immediately. Who are his patients? The worried well? Long term schizophrenic people with no hope of recovery? It seems that to many if not all psychiatrists, care of the patient is best outsourced to a professional or professional townsfolk, but I’m getting the the sinking feeling that for those with schizophrenia, there is no hope beyond the first episode. If I have totally misreprented what Dr. Berezin is saying, I’d love to be set straight.

  • You’re right. It is absolutely about normalizing pill popping. But where is the solid evidence needed in order to tie the industry DIRECTLY to the reason these stigma campaigns were created or continue to flourish. Did pharma create the idea of stigma as a marketing ploy, or is it only too happy to support people who think they have humanitarian impulses in that direction?

  • I appreciate the writing and delighted that someone who is trained as a lawyer has opened up with a mixture of candor and humor about being so taken in by the mental health system and pharma. There is one more hurdle here, which other commenters have pointed out, and that’s to re-examine what exactly it is that Carrie Fisher, Glenn Close, Patrick Kennedy et al are doing when they talk about about being strong advocates for mental health and against stigma. That’s nonsense talk. It’s like saying “I’m strongly in favor of soup and against ugly buildings.” What is really going on with celebrity anti-stigma campaigns is pharma. I wrote a blog post about this quite a while ago, expressing some frustration with not being able to really get at how it is that pharma encourages celebrities to appear as anti-stigma advocates.
    https://rossaforbes.com/the-globalization-of-american-style-thought-campaigns/

  • As a mother, I have looked up, down and sideways to find out the cause of my son’s so-called schizophrenia, and I’ve come to reject the trauma theory that is so popular with just about everybody these days. Sure, some people have very clear trauma events that one could point to as a cause of “schizophrenia” but, of course, these events cannot be proved causal. All human beings have suffered trauma –simply being born is a trauma. What I have found, and I’m only talking about a sample of one, is that there is also a personality factor: The good, compliant child, the one who doesn’t rock the boat, the once who feels guilty for the sins of others, the pale child who borders on the angelic, the one who takes things at face value. Homeopathy calls them the “phosphorus” personality. (Look it up. It’s fascinating.) This child is overdue for a breakdown when he or she discovers (around the age of leaving home) how difficult life really is when you finally have to confront it. They should have rebelled as children, thrown tantrums, done something. I, personally was delighted when my son began to show a long overdue rebellion. It should have come in childhood and it never did. I was waiting for it, and figured that something would eventually happen to him that would kickstart an overdue rebellion. I just never thought it would be “schizophrenia.”

    So, here is the one part of this interview that I thought really contributed something unique to understanding why someone may go psychotic. Trauma is the simple and popular explanation, but not necessarily what is at the heart of the problem. Maybe these parents, like myself, have been waiting years for the child to individuate.

    “These few healthy parents were looking for their young adult child to go into the next phase of development, which is oppositional defiance and being more separate and independent from the family. When I see a young person going through that phase I think that it’s fantastic.”

    By the way, I think this was an excellent interview in so many ways. I totally agree that years of therapy will bring someone to the point of ‘normalcy.’ I’ve seen it work with my own son.

  • So glad to hear you write that seeking out alternative healers is often/always/usually? the way to go. This reinforces my own experience helping my son recover from his ‘schizophrenia.’ My memoir (from a mother’s perspective), The Scenic Route, will be published later this year. I’m signing up to get your updates and look forward to reading your memoir.
    Best regards, Rossa
    http://www.rosssaforbes.com

  • Doesn’t surprise me. I think Andrew Weill is particularly weak on mental illness, e.g. “schizophrenia.” He spouts the pharma approved line. Here’s an excerpt from his website: ‘ Knowing that medications work on the neurochemical level to treat schizophrenia, it is certain that problems with brain chemistry, including the neurotransmitters dopamine and glutamate, contribute a key role. Neuroimaging studies show differences in the brain structure and central nervous system of people with schizophrenia as compared to those who don’t have the disease. While researchers aren’t certain about the significance of these changes or the interaction with these particular neurotransmitters, it still supports the theory that schizophrenia is indeed an abnormal condition of the brain.”

  • Doesn’t surprise me. I think Andrew Weill is particularly weak on mental illness, e.g. “schizophrenia.” He spouts the pharma approved line. Here’s an excerpt from his website:
    “Knowing that medications work on the neurochemical level to treat schizophrenia, it is certain that problems with brain chemistry, including the neurotransmitters dopamine and glutamate, contribute a key role. Neuroimaging studies show differences in the brain structure and central nervous system of people with schizophrenia as compared to those who don’t have the disease. While researchers aren’t certain about the significance of these changes or the interaction with these particular neurotransmitters, it still supports the theory that schizophrenia is indeed an abnormal condition of the brain.”

  • Loved the interview, Matt, and I assume I have your permission to post it on my blog with a link back to it at MIA? What I think parents need to hear more of, is what is said in the interview which I’ll paraphase thus: that recovery is to be expected if you keep your attention focused on it long enough. This interview was filled with these kind of gems. One of my favourites is when Buhner talks about even the worst cases becoming your average neurotic in time, and of course, many will go on to becoming weller than well. I say this to my son every so often, that he should feel terrific about the fact that he’s now merely “neurotic.” – But don’t stop there, I also say. You’re on your way to becoming a full-blown interesting, contributing member of this planet.
    Happy New Year to all,
    Rossa (www.rossaforbes.com)

  • Dogs may be the best kind of pets for many people, but they are expensive and they need a lot of care, and you’re right, at least in North America, llandlords often don’t want pets in their buildings. This is not good for the collective mental health of a society. Where I live in Europe, lots of people live in apartments and have dogs. Dogs are welcomed into restaurants and stores. They are amazingly well-behaved. I just discovered that the humane society in the city where I live doesn’t euthanize its hard to place animals. What it does is invite the public to come in at set hours during the week to walk the dogs. I think this is terrific idea. I tried it once, but the supply of people eager to walk a dog outstripped the number of dogs on hand.

  • Wait a minute. What do you mean you were only on neuroleptics for a short time?

    “Over the course of several years, I tapered down my medications until I was on only a small dose of Abilify.”

    Your post led me to believe that you were on neuroleptics a “longish” amount of time. What does “several years” mean? Four? Six or seven? Ten? They (well, Dr. Abram Hoffer, for one) say that paranoid “schizophrenia” is the easiest to resolve.

    These words matter to people like me, parents who are wanting to do right by their own children, but need to understand the nuances of recovery. Some people take longer and there are reasons for this.

    Thanks for your post.

    Best regards,
    Rossa

  • So glad to hear Meaghan that you feel that the benefits of this kind of therapy cut to the chase quicker (for you personally) than years of drug treatments and talk therapy. Try suggesting hallucinogenic therapy to your psychiatrist if your diagnosis is schizophrenia and see how far you get. Every psychiatrist would claim it to be destablizing, despite the fact that no one, to my knowledge, has even tried this with their patients. When I was looking for alternative therapies for my son that might help him experience a breakthrough to finding a sense of “self” I discovered a type of sound therapy. For what it’s worth, here’s a link to my blog where my son reports on his out-of-body experience due to sound therapy. http://rossaforbes.com/the-sound-shaman-as-therapist/ He spent a year doing the work, despite the objections of his psychiatrist. I see that there are now numerous links to sound therapy and schizophrenia. There are lots of exciting possibilities on the horizon.

  • Hi, Megan,
    I’m not familiar with any books on Cameron, although the Wiki write-up is quite extensive. In the early 1980s I lived down the hall from a man whose wife was suing the Canadian government for having been a victim of some of his creepy experiments. I had never heard of him until then.
    …Rossa

  • I’m glad to learn that hallucinogenics are being brought back under controlled circumstances. Just an editorial comment. It’s Donald Ewan “Cameron”, not MacCameron. He conducted some horrible experiments at the Allan Memorial Institute in Montreal. “He has been criticized for his administration, without informed consent, of disproportionately intense electroshock therapy and experimental drugs, including LSD, which rendered some patients permanently comatose. Some of this work took place in the context of the Project MKUltra mind control program.”

  • I can’t get my head around the fact that it’s being conducted in a hospital setting, not the home. (Totally agree with your “stylistic” objection.) I didn’t see any mention of parents and family involvement. The point of meeting people on their home turf is to understand the situation better and to not scare people with “clinical” treatment. OD is family focused and takes the “otherness” off the patient, or at least that’s the idea. This isn’t Open Dialogue, it’s simply trying to look “open” to change.

  • Thanks, Cory, and best wishes for you and your family. The reason I was never enamored with NAMI is because of its stand on medications and its ties to the pharmaceutical industry. But that doesn’t mean that the Organization doesn’t have its good points and many families say that they have benefited. What NAMI and other organizations haven’t fully appreciated is that recovery begins at home and in the close relationships that we foster. Too many people want the mental health system to “fix” their relatives. The mental health system is a blunt force instrument and not designed for to help individuals recover. I’m glad to see that more and more people like yourself and Pete Earley are expressing a more personal responsibility version of the recovery model.
    Best,
    Rossa
    http://www.rossaforbes.com

  • Dear askforcor,
    As one parent to another, may I recommend an excellent online course Recovering our Families? http://familieshealingtogether.com/courses/recovering-our-families/ It is unique in that it’s aimed (mainly at parents) to help them learn effective communication skills when they are struggling with relatives in extreme states. Recently, author Pete Earley had this to say about his son’s recovery:
    “For me, shifting from the role of being a parent to becoming my son’s partner was crucial.
    I learned about active listening. I learned to show my son empathy and respect. By listening and showing empathy and respect, I hoped to develop trust and rapport. And with trust and rapport, I hoped to gain influence. This didn’t mean that I opposed involuntary commitment. But it became my last choice in emergencies, not my first. Active listening, empathy, respect, trust, and rapport — if I had tried to use those skills initially and at different intersections during Kevin’s breakdowns, I believe we could have avoided much of the trauma that both of us experienced. I believe we could have become partners in his recovery, rather than adversaries. I believe, I could have engaged him earlier in his treatment.”
    Sincerely,
    Rossa
    http://www.rossaforbes.com

  • Kjetil, I’ve always found that your writing is hopeful, as you title says, and I want to express my appreciation as a parent. There were so many dark moments when it was easy to worry that my relative would not get out of the awful place where he seemed to be stuck. Sometimes all I could do was to look for positive things to read written by people who knew about the process. Thank you for being one of them. On another note, are you aware of Dr. Dirk Proeckl’s hypnogogic light experience? I tried it once – amazing work that he’s doing.

  • I’ve lost the thread here. Is “schizophrenia” good or bad? There’s something missing from the explanation.

    “There is a theory that the ability to hallucinate and to hold onto strong, delusional, original ideas developed as a genetic mutation hundred thousand years ago, and that this was the reason humans developed. When the supply of omega-3 was abundant, through eating fish, this was not a problem. When the supply of omega-3 became lower, these natural positive processes could become more extreme and less functional and would be termed so-called schizophrenia. Experiments with giving fish oil to young people at risk for so-called psychosis showed that those who took placebo were seven times as likely to develop so-called schizophrenia as those who took the fish oil. So psychotic-like processes and the ability to be extremely engaged in these ideas, as in so-called mania, might actually be essential for humanity.”

  • A yes, the school psychologist. Tried to get my youngest son on Ritalin, and she’d never observed him in the classroom. Luckily, my husband and I were on the same page on that one! The decision not to drug was a no brainer compared to our later being confronted by the scarier diagnosis of “schizophrenia” in my oldest son. School psychologists can usually be outwitted, but psychiatrists bearing drugs and warning about brain damage if left ‘unmedicated’, is a challenge, to say the least.

  • If these doctors really understood the havoc on the home front they cause re psych drugs, maybe they wouldn’t be so quick to prescribe them. Your story really captures the complexity of the problem. Glad to hear that your intervention caused your daughter to rethink this one.

  • This article beautifully describes one of the biggest side effect of the drugs that you don’t find on the black box warning: heightened family dysfunction from disagreeing about the drugs. Been there, seen it, done it. Hate it. I almost envy the author for having this quarrel with his ex-wife and that his daughter is under 18. Imagine having to duke out these disagreements 24/7 with the person you’re married to and hope to stay married to. The topic of ‘medication’ is never far from anyone’s lips. And, you’ve got a “child” over 18 who’s supposed to know enough (but doesn’t) to make these decisions independently. “Medication” was like a neutron bomb dropped into our family. It flattened us but left the institutions intact.

  • Megadose niacin is also an anti-inflammatory, thanks in large part to the work of Hoffer and Osmond. It’s good in so many respects, but not a magic bullet for “mental illness,” in my experience. That being said, many people claim that they have recovered on the Hoffer/Osmond protocol. I, too, am cautiously optimistic that targeting the autoimmune system may produce immediate and long lasting results for more people. But, I’m prepared to be disappointed. I continue to look to all kinds of diverse healing theories and practices. So far, no one has the full answer, and maybe no one ever will, as human beings are all different. What works for one, may not work for someone else.

  • “Connection is central to our humanity. It regulates our physiology and protects against the harmful effects of stress. Its absence, the profound aloneness that accompanies difficulty in communicating with others, is the common factor underlying all forms of mental distress.”

    Brilliant! The “aloneness” that comes to my mind is sensitively documented in the novel Steppenwolf.
    “I am in truth the Steppenwolf that I often call myself; that beast astray that finds neither home nor joy nor nourishment in a world that is strange and incomprehensible to him.” Hermann Hesse

  • Thanks for the additional information. “Schizophrenia” is so confusing. As a parent, with anecdotal knowledge of only my son, I don’t think any researcher, including William Walsh, has got it right. People present with symptoms that are wildly disparate. I was thinking of Abram Hoffer when I made this remark. He said it in a general sense, that parents report that their children tended to be abnormally healthy in childhood. My son was that way. I also used to remark that my mother, who developed dementia in her later life, was also abnormally healthy. I’m hopeful that, perhaps for the first time, science is headed in the right direction. But, I’m not holding my breath.

  • “Her son has not been successful in withdrawing from neuroleptic drugs and his life is in ruins.”

    I’m doing a double take on this loaded sentence in Catherine Clarke’s bio. With no further explanation as to why a life can be “in ruins”at the age of 31, readers are left thinking that this young man’s life is over for good, and that the drugs have caused this situation.

  • Naas, I think you’ve accurately described the struggle and the dilemmas of psychiatric drug withdrawal. Even people who want you to do it, like your father, are nevertheless worried when you run into problems, and they begin to doubt you can do it. It’s inevitable that you then begin to doubt yourself. Real healing happens, I believe, like you describe it. There’s a lot of psychic and spiritual work to do along with the drug withdrawal. Best wishes on your continued recovery.

  • Hi, Fiachra,
    My question arose because this article reports on twin studies and genetic research. Jay Joseph critiques the research admirably but then seems to accept that there is a severe form of schizophrenia/severe variant, presumably based on faulty genes, almost as if it’s a given. Many/most people reading this piece would think that scientists accept that there is a gene involved in this. I see that further down the page the author equates “most severe form” with “most severe symptoms” but initially using the word “form” or “variant” implies genes to me. Not the same thing to me as “most severe symptoms.” In reference to the common cold, it would be like saying there are severe colds that are genetic in origin in comparison to mild colds. I know I’m not making myself very clear. Genetics are obviously not my strong point, lol.

  • Hi, Liz, and Michael,

    I agree. I believe most parents are reacting to the school system telling them that their child is a disruptive influence in the classroom and there is medication available for this. The parents may or may not be skeptical at first, but once they sit down with a psychiatrist and are shown images of the brain, they’ll soon start to panic. There is no room in today’s world for high energy boys. Most people I know (admittedly going back a few years) were anguished about the thought of putting their child on a drug, and they didn’t act immediately.) One of my son’s school experience sounded like Steve’s description of his school experience. Bored out of his mind. The school recommended Ritalin for his lackluster performance. We refused. Being spaced out and dreamy in school was not a disciplinary challenge to the teachers, so it was easier to refuse medicating him.

  • Yeah, this is a downer. It is all so threatening, rather than celebratory, as you say. Does Pies actually treat patients? If he does, I can see him telling them not to be so foolish as to believe that they can taper off their medication and stay well. Better to be medicated, your whole life long. This doesn’t even sound like what a “normal” doctor should say to a patient.

  • Ron, thanks for your thoughtful post. I do believe that there are good, empathetic psychiatrists, although this is not the popular opinion on this website. I used to think that it would be great if a regular doctor, not a psychiatrist, could see my son. I’ve since reconsidered my position. I’ll use my relative’s psychiatrist as an example to contrast her with our family doctor. She;s a psychiatrist and a psychoanalyst. They meet regularly to talk. For a long time. She used to be a heart specialist, but decided that she preferred the kind of work she does now. That’s a good sign that she’s interested in communicating with people who can be difficult to get through to. For the longest time, he needed someone to talk to outside the family. He had no friends. It’s difficult to retain old friends and make new friends when one is struggling to the extent he was. The family can only do so much. A paid “friend” is better than no friend at all. The family doctor, in contrast, has lots of other patients, and tends to see everything through the biological medical lens. He hasn’t got the time, the training, nor presumably the inclination to be a “friend” to someone who is not at all like his other patients and who needs don’t fit into a ten or twenty minute time slot. There is lots of negative things one can say about psychiatry the way it is practiced and reimbursed in mainstream medical care. I share with you the vision that there is a better way, like the “slow” movement is proposing.

  • Hi, Sandy,
    Please check the link for START. The link takes you to an executive summary for the Sobriety Treatment and Recovery Teams of Cuyahoga County, which is definitely a Vermont county and not the link you intended.
    Best regards,
    …Rossa

  • Thank you for what I think is a first on MIA: Hoarding. As an “antiques” collector, I walk a fine line between being a collector and being a hoarder. I’m more familiar with the downside of hoarding through friends who have strained (awful) relationships with their aging parents and spouses because of what they see as denial as to the reality of their problems. Hoarding takes a huge toll on relationships.

  • Well said. It’s about time someone spoke up to counter the “received wisdom” that parents are usually to blame for their child’s mental illness. Being gay, apparently, is no longer considered the result of poor parenting and childhood trauma, so why is it still okay to say that “schizophrenia” and psychotic illnesses are? Who decides this? Why is autism apparently no longer accepted as the result of poor parenting and childhood trauma, as was once widely claimed, but “schizophrenia” still is. There is no scientific proof for any of these assertions, but there’s an awful lot of opinion making based on people’s own past history. What may be true for one person may not be at all true for someone else. It’s all about which groups or individuals come to dominate the conversation.

  • I wonder what kind of transformation BPDTransformation went through. He or she cites pharma influenced pieces as proof positive that most of us here on MIA are low IQ dumb. Or, perhaps BPD meant to write that we’re dumb to get labelled, but I feel he or she meant the former. In any case, BPD cites pharma inspired “studies” that are guaranteed to have every parent screaming for meds, the more meds the better, to protect their child’s brain from further erosion. It’s a wonderful tactic that the pharmaceutical industry has figured out. Sadly, I fell into that trap, too, early on. Thanks to Circa for providing an excellent link to the literature.
    “Conclusion Although specific lifestyle factors, particularly tobacco smoking and alcohol consumption, probably account for the increased cancer risk in patients with schizophrenia, the decreased risk in relatives would be compatible with a postulated genetic risk factor for schizophrenia offering selective advantage to unaffected relatives.”
    David Horrobin writes about schizophrenia as an evolutionary advantage is his book, The Madness of Adam and Eve: How Schizophrenia Shaped Humanity. http://www.amazon.com/Madness-Adam-Eve-Schizophrenia-Humanity/dp/055299930X/ref=sr_1_1?ie=UTF8&qid=1458644038&sr=8-1&keywords=the+madness+of+adam+and+eve

  • And if they buy into that way of thinking, chances are these will become self-fulfilling prophecies. I agree with bcharris, and so did Abram Hoffer. He observed that cancer amongst his schizophrenia patients and their close family members was virtually non-existent, that his patients were abnormally ‘healthy,’ they were highly resistant to the physical pain and the infections that the rest of us fall victim to. (I would add most people with ‘schizophrenia’ and smarter and more empathetic than the general population.) My relative is a prime example of what Doctor Hoffer observed. If it is true that people with a diagnosed mental illness die on average 25 years earlier than the general population, the likely reasons are the complications that arise from the overprescribing of antipsychotics, and the drugs to counter the side effects. Throw in smoking (self-medication) and general neglect and loneliness, and there’s a guaranteed prescription for premature death.

  • Beautifully expressed, as usual, Corinna. Yeah, dropping data on people’s heads is a huge turn-off, in the same vein, to me, as neurobabble. The best way to make social change is the soft approach, which you outline. Respect, common ground, tangible advocacy goals. May I add another approach? Telling our stories. MIA’s great in this regard.

  • Bingo, Seth. That’s exactly what Francis is doing. Donning the robe of a “great crusader” to save something everyone agrees with in the first place (“normal” people don’t need antipsychotics), but in reality, it’s a disguise to ensure schizophrenia continues to be misunderstood and the great money earner for his profession. I am forever grateful to Robert Whitaker and Mad in America for bringing schizophrenia out from the shadows and holding it up to examination. This scares people like Francis.

    Misspelled Frances’s name because I didn’t want to scroll all the way up to check it and I notice that some commenters don’t know how to spell his surname either. Must have been thinking of Anne Francis, lol.

  • Bingo, Seth. That’s exactly what Francis is doing. Donning the robe of a “great crusader” to save something everyone agrees with in the first place (“normal” people don’t need antipsychotics), but in reality, it’s a disguise to ensure schizophrenia continues to be misunderstood and the great money earner for his profession. I am forever grateful to Robert Whitaker and Mad in America for bringing schizophrenia out from the shadows and holding it up to examination. This scares people like Francis.

  • Madincanada, there is a big difference between homeopathy and say, orthomolecular (nutrient) therapy. Homeopathy is “a system of complementary medicine in which ailments are treated by minute doses of natural substances that in larger amounts would produce symptoms of the ailment.” It’s cheap, and time limited. And profound.

    MIA author Jennifer Bahr writes: “Trying homeopathy was like a Hail Mary – if it didn’t work out I would be no worse off than I already was. In retrospect, I should probably write a letter to thank that short-sighted psychiatrist for giving me so little hope I would try something I didn’t believe in because homeopathy ended up being the most profound medicine I have ever used. Homeopathy gave me relief from depressions and brought me out of manias quickly and without negatively impacting my cognition or sense of self. To this day, I use it with my patients as a cornerstone of their treatment and see the same results for them that I saw for myself.”

    I highly recommend that your son check out Amy Lansky’s book, Impossible Cure: The Promise of Homeopathy. If you want more information you can e-mail me through my blog http://www.rossaforbes.com or through my Facebook account.

  • madincanada,
    Has your son ever tried classical homeopathy? In all the work my son has done, I overlooked homeopathy, erroneously thinking at first that seeing a homeopath was sort of equivalent to seeing a nutritionist or orthomolecular doctor. I couldn’t have been more off base. It’s interesting that MIA has not yet featured a blog post on what classical homeopathy can do for “mental” illness. I’m blown away by what I’ve seen so far.
    …Rossa

  • We’re running out of threads here, Alex. Of course you’re welcome here. Some of us are just parsimonious with with our valuable thread count! From what you say, I don’t think we disagree at all. Your input, and the input of many other survivors here on MIA, is different than how someone coming at psychosis as an outsider, or a parent, would express themselves. Most parents are not poets or artists, we are, by and large, practical people, conditioned by carpooling, bill paying, all the boring but necessary activities we do for our children that grind us down eventually into people who no longer understand the creative impulse, if we ever did. I think a lot of survivors presume that the stigmatization by family members started BEFORE the breakdown, because they were scapegoated by their parents all during childhood. Consider another scenario, that the stigmatization can begin for many AFTER the breakdown, when nobody around them understands the creative impulse driving it. I’ll sign off now, because soon Sandy’s post will no longer be visible. Have a great week-end!

  • Sandy, to clarify, the “reframing” had to come first from me and my husband. I think it’s important to say that the person who is going through turmoil hasn’t got the capacity to “reframe” anything about his life during a period of great stress. My son certainly wasn’t in any sort of shape to do that, and he didn’t see that anything was wrong with him, so he’s not much different from people wandering the street, but with one important difference. His family. He lived with us. Not easy on our spirits to feel alienated from an adult living under our own roof. We wanted to learn how to build a line of communication that was inclusive of him because we were learning that this is what recovery is all about. You can’t build that line if you are not in daily contact with your “loved one.” When I hear about homeless people, well, it’s obvious they’re not living with a family member, lol.

    I’ll go one step further and say that the family probably IS the reason the person is living on the streets or in sub-standard social housing because they haven’t learned how to talk and walk recovery. They are still seeing the problem as a medical one. And, according to at least two research studies, if the problem is cast as a brain illness, the more the person will be stigmatized. By their family, it goes without saying. Loneliness kills. Imagine if your house burned down and you didn’t know there was a fire station just around the corner. This is how ill informed families are about what it takes to help someone recover. It is really only in the past decade that the word is getting out about how to recover. It’s not going to happen over night. It takes a lot of commitment on the part of others to not alienate the individual further through their own ignorance. I’ll plug Krista McKinnon’s excellent course, Recovering Our Families one more time. http://familieshealingtogether.com/courses/recovering-our-families/

    It’s not a meds versus non-meds problem, because even when on meds a person can be as difficult to communicate with as a person not on meds, except perhaps not as “stimulating.” Recovery is complex and there are many factors involved. You can be on meds and if you accept the medical model unquestioningly, you may not even think that there’s a non-medical reason why you became psychotic in the first place. Or, you can be on meds and also do the hard work of finding out what happened to you. Unfortunately, mainstream medicine usually only presents the first option to the patient because it believes mental illness is a brain problem, not a psychosocial one. In order to test if you are getting more resilient or more knowledgeable about yourself, you might/will probably have to start tapering your drug and see what happens. If you relapse, well, climb back on board and try, try, again. I’m convinced that families need to be educated that relapse may be a necessary part of growing. If they do so, they’ll become more resilient, too. There is no reason for them to feel the need to reject the medical model in its entirety in order to learn reframing.

  • You have, Richard! I’d like to see someone here at MIA write a post on Relapse: Chronic case or golden opportunity? Your speciality is addiction, I believe, and perhaps you’ve already covered the topic here before, but Sandy made an honest statement about how the medical community (and therefore family members) views relapse, and I think we need to challenge this. How about a post from you on this?

  • I agree when you say the chance of relapse means the person’s spirit isn’t dead. It’s a positive way of looking at relapse, one that engenders hope. On the other hand, if you read Alex’s comment below, he says that he changed many things about his environment and himself, and therefore doesn’t fear a risk of relapse. He seems to have plenty of spirit!

  • “It has been hard for me to fully grasp – and I doubt I am alone in this — that reduction of relapse is not synonymous with optimal outcome. The notion that people may overall fare better in their lives despite having one or multiple encounters with psychosis would never have been self-evident to me.”

    I agree that this seems counterintuitive, but only if one sees it through the eyes of someone who equates relapse with long term failure. This is the narrative that the medical community tells us, and it’s a compelling one unless one steps back and try to make sense of it in a helpful way. All those aphorisms about failure and success, the more times you fail, the more you learn, blah, blah, that just everybody seems to agree with because they assume it’s about innovation and success at work, well, in my experience it’s no different with relapse. It’s what you do with relapse or these “failures” that counts, not necessarily how many you’ve had. Do you learn from them? Do you try a different strategy? Do you acknowledge that the present experiment called “your life” may not be working? Those who learn from repeated failures have a better chance of longer term success than those who don’t. (If at first you don’t succeed, try, try, again.) I began to think that the dire warnings about relapse were pharma’s ploy to get people on board toute de suite with their meds and to stay on them. Relapse is awful, speaking only from my experience as a parent, but it’s not the end of the world if viewed in the right light. I did everything possible to keep my son out of hospital before his third three month hospitalization. (Each time he was hospitalized, he was actually in better mental shape than the previous time, but that kind of information doesn’t get included in the stats.) I’d prefer not to live through another hospitalization. But when my son was hospitalized for the third time, I got it. I thought, this is a learning opportunity. When he gets out, we’re going to do things differently. And we did. Relapse can be seen as an opportunity. It’s all in what one believes, I guess.

  • Hi, Sandy,
    Admittedly, it’s been some time since I read Anatomy of an Epidemic, and I’m no academic researcher, so I probably have failed to grasp the nuances about the research you report on in your excellent post, but here’s what I have come to believe about all the pros and cons surrounding the idea that “maybe” people don’t need to be on long term antipsychotics to do well. That’s what I took away from Robert’s book – that antipsychotics aren’t the be-all and the end-all that they are touted to be, the research behind them was questionable, they are dangerous in high doses, polypharmacy is dangerous and unproven, etc, and “people” can and do recover without them. Many people have taken away the wrong idea from his book, that all you need to do is stay off the drugs and you’ll get better. And, as you point out, the ramifications for family and friends, let alone the individual, not being medicated, are awful. How can anyone get better if their family hates them, fears them, shuns them, infantilizes them, etc. when they are in a psychotic state? And, in the same vein, how can people recover if they are disabled by the drugs?

    Much of recovery is about relationships. These relationships may be irreparably damaged if, and I’ll be blunt here, if the person isn’t first sedated enough to clear some of the delusional thought patterns away. All the drugs do is sedate, they don’t fix anything else. These studies that you quote I’m pretty sure don’t look at what ELSE the person is doing in his or her life to make recovery happen. Even that concept, that recovery can happen, is rather revolutionary. I can think back to Dec. 2003 when my son was first hospitalized, and no one was talking in a big way about how to go about recovery outside of the medical model. Social media was still in its infancy back then. All these studies do is look at drug versus non-drug, and the non-drug approach often looks like a train wreck when most people give up on their relatives because it takes more stamina than they can muster to see them through. I was against the drugs, too, and still am, but I do see that they bought our family a bit of time to figure out how to improve the relationship, get my son up and running socially, and work towards eventual freedom from the crutch that those drugs had become.

    I came across a TED talk recently by a Harvard professor named Robert Waldinger, and this is what he had to say about what kills people sooner rather than later. It got me thinking that yes, neuroleptics in too high doses kills people early, but loneliness may be the biggest problem for people who’ve been labelled with a serious mental health problem. Take too many drugs, you’ll probably be isolated, take none at all and people will also want to run the other way. (And, yes, I would love it if public health systems ran Soterias and Open Dialogues, but they don’t.)

    ” . . loneliness kills. It turns out that people who are more socially connected to family, to friends, to community, are happier, they’re physically healthier, and they live longer than people who are less well connected. And the experience of loneliness turns out to be toxic. People who are more isolated than they want to be from others find that they are less happy, their health declines earlier in midlife, their brain functioning declines sooner and they live shorter lives than people who are not lonely.”

    Recovery is largely about the relationship. Pills can’t buy this, but the unmedicated state can also destroy someone’s ability to connect with community.

  • Maybe it’s just our unique experience, and maybe it doesn’t apply to other parents, but my husband and I had to cope with a young man who should have challenged us in childhood (normal?) and didn’t, due to his nature. So, we find ourselves intruding on his life as an adult, doing things that are damaging, and that interfere with his autonomy, as you correctly put it. With a different child, this could have been cleared up in childhood, when parents are expected to intrude on their child’s autonomy to prevent them from disaster happening. That child would have rebelled against too heavy a hand. Bravo to that child. Yes, it is indeed a bind. I wanted my son out the door at 18. He didn’t want to leave. I didn’t ask to be the interfering parent of an adult child.

  • Yes, I absolutely agree that “if the family, itself, were to take a neutral-positive view of things, that would be the most helpful and supportive thing for the kid, and would help them greatly to integrate all of this in a productive way? Whereas when the family is demeaning and stigmatizing, just as we know the system is, then the chance for integration is pretty nil, unless the kid wakes up and takes the path of Siddahartha, leaving family and all else behind, in search of meaning.”
    Here’s a bit of a twist on that. Many people, from what I read, appear to believe that the families were demeaning and stigmatizing from the get-go, and that’s WHY the person had a break. Consider, though, that it is very easy for families to become that way AFTER the person has had a break. It’s damn hard to live with someone in an altered state. Families lose patience. They haven’t a clue what to do. The professionals tell them to leave it to the professionals and don’t seem to get that the family is often dealing 24/7 with their relative. That’s why I’m a big fan of Krista McKinnon’s online training program, Recovering our Families. It’s groundbreaking in that it empowers the family, not the system. Alex, I am half way through your healing voices documentary and loving it. I’m assuming it’s okay if I report on my blog, with proper credit given.

  • This is an excellent article that does much to highlight the role of the familial environment as a factor in psychosis. Too often family involvement has been ignored when it comes to how to help someone through psychosis, although it has often been accused of being the contributor to psychosis. In my far too many years of involvement with the recovery movement, I’ve had a lot of trouble trying to figure out if the recovery movement views psychosis as a good thing or a bad thing. It has a foot in both camps. In a quasi-medicalized version of psychosis, it’s always a bad thing, caused by trauma (bad). The individual is therefore seen as a damaged being, along the lines of a war veteran undergoing rehab. You know that he was hit by a shell, you know when it happened, etc. and you try to repair the damage. In the non-medicalized version of psychosis, which some say is the ‘romanticized version, the person has special gifts, experiences an existential/spiritual crisis. He or she is not damaged. He/she is on a mission. No one should be blamed for the spiritual path that the person is on. The idea is to encourage that spiritual path, not to fix it. I’m struggling to express what I mean here. To be somewhat humorous, was Jesus Christ a trauma victim or carrying out a spiritual mission?
    Our family has done its time with Family Constellation Therapy, which was an insightful look into the family dynamics of previous generations that shapes our presence. I don’t at all regret doing it, and it was very helpful for all concerned, but it was not the whole picture. It only offered one possible explanation for why my son went psychotic. Numerology has been helpful, too. No trauma there, just the way his numbers added up hinted at who he IS. Homeopathy offered its own explanation (a most insightful one) for his personality and the remedy given pointed to the possible cause of his breakdown (who he IS). No trauma involved there, either. I guess all of this to say is that the family environment may offer some clues as to what happened to the person AFTER birth, and it’s easy for our fact oriented Western minds to grasp these connections, but it’s only one factor amongst many.

  • Hi, Alex,
    There are all kinds of children, and I feel I need to point out that it is not just the “challenging” children who may end up with a diagnosis of ‘schizophrenia.’ In fact, IMO, they may be in the minority, but they are the vocal Majority of people who blame their condition on childhood trauma. Consider, the quiet, obedient child who challenges nobody. The guy or girl who passes under the radar. There’s a lot of stereotyping at MIA that it’s the rebels who become schizophrenic because they’ve been at the receiving end of their parents anger. Not necessarily the case. Perhaps these quiet ones “wake up” around their late teens and decide that being a passive observer of life is now their biggest challenge to overcome.
    Just my thoughts, based on my experience.
    …Rossa

  • The United States is about the only country in the world where mass killings by disturbed loners with easy access to guns are almost a daily occurrence. Every other country in the world has disturbed people, too, but not the endless carnage repeatedly inflicted by one nut with a semi-automatic. I dislike the singling out of ‘the mentally ill’ as IMO, anyone who thinks it’s okay to own a semi-automatic or even just a handgun to defend their property, is someone just not dealing with a full deck. I would label them ‘scary people with anger issues.’ Every country has them but their ability to act on their anger has been curtailed by gun control laws. The National Rifle Association or Big Pharma – both manipulate the script and exploit the public to their own gains.

  • ” Informing youth that they have a chronic brain disease is probably not a winning engagement strategy.”

    So many people, including family members, fail to get this basic point. This ‘strategy’ is dangerous to a good long term outcome.

  • Hi, madmom,
    There is lots to be optimistic about but my background as a parent of a young adult experiencing psychosis, is that these recovery programs, while appearing cutting edge, often greatly miss the mark, to which my son’s presence in one such program attests. Two years of daily attendance at an early intervention program did not do a lot to lift him out of his troubles (but it did keep him occupied during the day, which greatly eased his parents’ minds). He gained a lot of weight from the drugs which were a core component of treatment. I agree with Dr. Steingard when she writes that the conceptualization of schizophrenia as a medical condition is at the core of these programs, and that may be a big reason why people don’t really recover. I suspect that Open Dialogue is the way to go, but obviously, replicating OD in a public health system like in the US or Canada, has it challenges. My solution was to wrest the care of my son away from the professionals as much as possible, ditch the idea that schizophrenia was a medical condition, and explore some really intriguing alternative healing modalities. We can all do our own Open Dialogues or our own Soterias if we have an inner dialogue with ourselves and reach out to our relatives with love and a sense of discovery. I consider that the time he spent in a fancy recovery program actually delayed his recovery.
    Do not get discouraged. Real healing lies outside of a most of these early intervention programs. And, it’s wonderful to see it when it happens.

  • Well said, Liz. IMO a psychiatrist is like any other blind man touching the elephant. He or she has an imperfect and often wildly inaccurate understanding of the bigger picture. A homeopath touching the elephant might describe a disturbance to the vital life force –the mother is no more or no less to blame than if the person has a stubborn skin rash. A nutritionist might see something related to food and chemical sensitivities, a shaman might welcome such a huge gift from the gods. All of these people have a useful contribution to make, but should not oversell the role of their product in drawing an accurate picture of what’s going on with another human being.

  • Thanks, as always, Corinna, for your observations about first and second generation antipsychotics. I’m zeroing in on the taper you did four years ago. There appears to be no ‘consensus reality’ when it comes to tapering and I find this lack of good information troublesome for anyone wishing to get off these drugs. You assumed that your taper was prudent and therefore slow, and that’s why it took you a year to come off the antipsychotic(s) you had been taking for ten years. My son’s psychiatrist’s rule of thumb (admittedly, this was a few years ago when she told us this) was that for every three years someone has been on an antipsychotic, it takes a year to taper off. So, by her rule of thumb, your taper should have taken over three years, not one. Would a slower taper have helped diminish the withdrawal symptoms? There’s just no consensus reality around tapering, and that’s a problem. It would help people psychologically as to their expectations, I believe, if more agreed upon information was available. Not just about the length of the taper, but how to handle the inevitable post drug symptoms that arise.

  • This is a wonderful, well researched piece in discussion of the perennial question “is mental illness in the mind or is it in the brain?” I happened today to stumble over The Kennedy Forum and its offshoot, One Mind, founded by Patrick Kennedy, which unfortunately promote the idea that mental suffering is due to brain illness and injury. Unlike delving into the mysteries of the mind, brain research comes with power and money attached.

    “One Mind is an independent, 501(c)(3) non-profit organization. We are dedicated to benefiting all affected by brain illness and injury through fostering fundamental changes that will radically accelerate the development and implementation of improved diagnostics, treatments and cures – while eliminating the stigma that comes with mental illness.”

    One Mind is particularly creepy and Orwellian when it gets going on the “brain epidemic.” It promotes the still unproven science that bipolar, addiction, etc. are neurological diseases. http://onemind.org/The-Epidemic
    That’s where the money is, sigh.

  • I’m with you on this one, Corinna. Many (not all) in the psychiatric survivor community, because they suffered childhood sexual or physical trauma, have been very vocal about equating bipolar disorder/schizophrenia with severe childhood trauma –period. Now, it’s almost taken as a given. Carl Jung and Joseph Campbell saw something different.

    Quote from the Jungian Center for the Spiritual Sciences
    But Jung and Campbell recognize that there is another type of hero, a type for our time, now evolving in response to current crises—crises that are not so obvious as earthquakes, tsunamis, or other disasters. These crises are cultural and are reflected in what Joseph Campbell has called “the collapse of the timeless universe of symbols.” It is in response to this grave situation that a new form of hero is emerging.
    ” A previous essay on this blog site spoke of the crucial role played by symbols, and how our world is now jeopardized by the loss of the “symbolic life.”We live in a society that no longer supports the gods, with social units no longer centered around religion but around economic and political organizations.Our focus now, as a global culture, is on competition for “material supremacy and resources,” and this materialistic focus has led to the decay of the arts, morality and ritual.”

  • Your comment beautifully captures the problem with mixing excellence in mental health care with people’s personal views on just about anything else. Debating the merits of capitalism versus socialism leads people on huge detours around helping themselves and others to get to the goal of wellness. (Consider that it’s not the form of government, it’s how any of these systems can be corrupted by lax laws and lack of oversight.) Tabitha Green’s post is good on so many levels that would resonate with any parent who has been rudely awakened by a mental health label slapped on their child. Her post also ties in very well with Ron Unger’s post that appears today, especially the chillingly clinical assessment of her daughter. Hope dies right there. Do these mental health “professionals” have any idea of how these assessments prevent parents carrying a healing message into the home?

  • Nice story. As a parent I identified on so many levels with it. I’m glad you saw the light.
    My suggestion is that you will be more effective as a mother repeating your personal story than making a skewed leap into dismantling capitalism. Seriously? Russia once did the same. While it’s tempting to hate big bad pharma, and most of us probably do on this site, why not work tirelessly to educate people to stop being suckered and coerced into making bad decisions that affect themselves and others. There’s a sucker born every minute, as the old saying goes. You’ll have plenty of work just focusing on that growing segment and you won’t risk alienating people who need to hear your message but may be fine with computers, synthetic materials, flying machines and motorized vehicles, or even non-organic food. I believe that most of us do well to focus on what we know best. Yours is a powerful story and you’ve got lived experience as a parent. We haven’t yet won the biggest battle – making everyone an informed consumer when it comes to psych drugs and learning about how to grow resiliency instead of reaching for a pill.

    “We need a nuanced, humanistic, non-pharmaceutical industry influenced, truly well-informed curriculum for schools, community centres and religious organizations that provides education to children, youth and their parents about the spectrum of human experience, life transitions, and ways in which boyhood (!), distress, unusual experiences and stress can be resiliently handled.”

    Keep telling your story.

  • Yes, but who pays social workers? Public health and welfare systems do. He who pays the piper calls the tune. Okay, it was forty years ago, but my friend was asked to leave her Master’s of Social Work Program at a prestigious university just weeks before graduating because it was said that she “identified too much with her clients.”

  • Catnight.
    NAMI got started as a parent support group for the kind of parents who like better living through chemistry, as you phrase it. Eventually people who are critical of the status quo in “mental illness” are going to start their own support group in a church basement in most of the major North American cities. The other idea I have for parents who are disillusioned with the status quo is for them to write their stories, as parent and MIA author Dick Russell did. We hardly hear from them, probably because, as Steven Epperson has pointed out, they are too caught up in the struggles of day to day living. Story telling is powerful. For better or for worse, parents have a huge influence on legislators.

  • Rev. Steven Epperson presumably has at least one very important thing going for him that Dr. Stan Kutcher does not, and that is, he has lived experience as the parent of a child labelled ADD and one who got a major psychiatric label. Any one of the two should earn him street cred. Why do people respect “professionals” like Kutcher, who, as far as I aware, has no street cred and who has been heavily tainted by pharma. I bet legislators would pay more attention to the critics if bands of like-minded parents wrested the agenda from the likes of the Kutcher, NAMI parents, and pharma. Parents like Rev. Epperson can be hugely influential, but we are unorganized. To paraphase the quote that appeared in Paris William’s blog today, we are part of the round table and deserve a voice.

    My experience with two of my sons mimics Mr. Epperson’s. It was easy enough to fight off the ADD label the school tried to pin on my youngest, but impossible to fight the schizophrenia label given to my oldest. A “major mental illness” label handed out by psychiatrists is guaranteed to frighten everyone into submission.

  • My search for meaning in the experience my family and I went through with my son’s psychosis has ultimately led to grappling with the complexities of quantum physics, cellular vibration, scalar energy. I appreciate your attempt at trying to make all of this comprehensible to the average person, ie. the other people at the round table. Scalar energy or “resonance” is the energy from the stars that is communicated by the brain to the cells many times faster than the body carries out other biological processes at the cellular level. People undergoing psychosis pick up this resonance, this ethereal energy from the cosmos, much faster than others, and this can be confusing and terrifying (to self and others), while at the same time being accurate and insightful. I agree that even if one doesn’t understand the physics of it, a lot of the healing comes in finding harmony in calm and respectful environments that resonate with our personal energy field.

  • This post is also applicable beyond ADHD and early deaths. The stats for other major “mental” disorders all point to early death, and I think early deaths have more to say about how parents and siblings fail to handle their relative’s problems. I often go on about parents putting too much trust in the medical model to “sort things out” for their relative. When the problems don’t get sorted, then the family tries to farm out the problem to the social welfare system. When the problem is not sorted out there, then the person is often on the streets or dead from the effects of too much wrong intervention. Nobody has told the family that problems can be sorted out within the structure and dynamics of the family. I am grateful that there is now help available to families online, such as Krista McKinnon’s course associated with The Family Outreach & Response Program. http://familymentalhealthrecovery.org/families-healing-together-online-recovery-education

  • If Max had been born into a family of male children, instead of having sisters, the scenario would be different. Boys are generally are late bloomers and are not obedient little followers. I had high achievement expectations, too, for my sons. They were all low achievers. I always heard that boys don’t “get it” academically, until they are about age sixteen. I wonder if Max’s mother was from an all girl family. Max would have seemed like he was from another planet. This is a real tragedy.

  • Thank you Dr. Berezin,

    Your post reminds me of a comment by moral philosopher Mary Midgley:

    “In spite of the huge differences between cultures, all that we know about human behavior shows that it can be understood only by reference to people’s own thoughts, dreams, hopes, fears and other feelings. This is not something invented by a particular culture. It’s universal.”

    And thank you, weathervane, for showing your appreciation what a good psychotherapist can do.

  • Hi, madmom, After reading your comment, t I opened her book and briefly refreshed myself on its contents. My comment wasn’t clear and leaves the impression that she was never on drugs until she finally decided to take them as prescribed. It is clear from the book that she always resisted staying on drugs, and went off them as soon as she could. She would manage for a while, and then end up back in the hospital and the cycle repeated itself. Her being on and off drugs continued for 15 years until she finally decided she needed them to function. Your comment made me reread my review of her book http://tinyurl.com/pfpw8u7 and prompts me to make some changes there. My impression of Elyn Saks is that she never looked into alternative treatments other than Kleinian psychotherapy and she used her work and her friend as her life raft. This seemed to work well for her in terms of being able to build a career but this narrow focus didn’t do much to cure her symptoms. It takes time and commitment to investigate and commit to other avenues of help.

  • Thank you for speaking up. I am puzzled by a few things that Lieberman said. One is about how well people do on medication in the long run. If that is so, how is it that in 2014, 80% of the mentally ill population in the United States were unemployed? I gather that NAMI, which purports to be the largest grassroots organization for the mentally ill is alarmed at this figure, so I wonder how Lieberman would soothe their membership.
    See The High Cost of Cutting Mental Health,” accessed, November 26, 2014, http://www.nami.org/Template.cfm?Section=About_the_Issue&Template=/ContentManagement/ContentDisplay.cfm&ContentID=114540
    Second, I’ve read Ely Sak’s book, and I never got the impression from either reading her book or listening to her speeches that (a) she is recovered, and (b) the meds have made this happen. She struggles with symptoms, on or off the meds. Elyn Saks is an outlier in that she is a person to point to if you are trying to point to someone with a diagnosis of schizophrenia who has, by all appearances made a success of herself, but she is not symptom free. As I recall, she finally got on medication after resisting it for many years, and I assume that the medication at least calmed her down, but she still struggles. Her book is not a tribute to medication as so many people glibly claim, and I think she was finally talked into it by friends. People know so little about medication, and see what they want to see in it. Lieberman is in a perfect position to make all kinds of glib statements that people will take as gospel.

  • I wonder if the problem is exacerbated because others have not learned the grace and patience to validate and respect you. If you are feeling devalued is there a place or a group of people with whom you feel honored and respected? If so, go with them and have little to do with those who belittle you. You may be interested in this link. http://www.rossaforbes.com/ I don’t believe for a minute that you are ill. You are possibly just absorbing the frustrations of those around you.

  • Your personal story is beautifully expressed and is a welcome addition to a growing collection of experience involving shamanistic practices and journeying as part of the healing process. Eleanor Longden, with her therapist hat on says “Don’t tell me what other people have told you about yourself, tell me about you,” and you say “who am I, really?” R.D. Laing wrote about the divided self. Stripped to the bare essentials, healing is learning to love and delight in one’s self, the journey of finding out who we really are, not someone else’s version of who we are supposed to be. I often feel that those we call shamans are the people who are the most in tuned with helping us to see what is within our grasp if only we clear away the confusion that life has imposed on us.

  • I am curious to know if your daughter is employed, gets along well with family and friends, and is experiencing no side effects from the drugs, (weight gain being the one that comes to mind.) There is a vast difference between being happy you aren’t dead, and living life to the fullest. I understand your point, but is it really dangerous ground to want to live life to the fullest by freeing oneself of the downside of medication. 80% of the “mentally ill” are unemployed. I assume many are underemployed. What percentage of them are obese and suffer other socially inconvenient side effects?

  • Hi, Sa,
    I’m in a bit of a rush so can’t answer Chaya’s question yet but will briefly answer yours. I have never seen positive effects that I attribute to the medication. The medication stinks. Any benefit I see is for emergency situations. But, I am in touch with people through my blog and other avenues who are fearful of putting their relatives on medication because of what they read in MIA and / or they think that all that stands between their relative and full recovery are the drugs and they are frantically trying to get their relatives off them at all costs, even though there is so much more to learn about how to recover in order to sustain a recovery when one is off the drugs. I’m probably not making myself clear. I think Chaya’s post is very good, because it is positive and shows how well off someone can be one day. Just a note of caution that it doesn’t work this way for everyone, and of course, most people here know that. So maybe I didn’t even need to say it.

  • Hi, Chaya,
    I really appreciate your personal story, I really do, because of its hopeful message. But I feel, it also gives the impression that getting off drugs is a wonderful panacea for all life’s ills. I suspect that there was something else going on with you – a realization, a determination perhaps, that you no longer subscribed to the old you. I have seen the best and the worst with my own relative. He was off medication but not not able to contemplate higher education, physical exercise or many of the other items you list. He was on medication (always striving for the lowest possible dose) and he is tackling things he couldn’t do before. I’m not saying it’s the medication that is the magic bullet. It is not. I want him off medication because it is a detrimental to good health. I think it’s perhaps an emotional maturity that allows him to do things he couldn’t do before. The goal in the end is to be off medication. Too many people believe,from reading MIA, that getting off the medication will mean that life returns to “normal.” I have found it is a lot more complex. (And I appreciate that you also talk about the complexity in your other posts.)

  • For my routine colonoscopy in January which was performed in the doctor’s private clinic, I was billed the equivalent of 680 USD. There was a separate bill for the laboratory work, which was a good dealer cheaper. My son’s psychiatrist, who practices as a psychoanalyst, charges the equivalent of 200 USD per hour. (She sees him for the full 55 minutes.) The difference is that I don’t live in the United States. Doctors here aren’t particularly well paid, and in the city where I live there is huge competition for psychiatrists/psychoanalyts. It’s often referred to as an “El Dorado” for psychiatry because I understand it’s got the highest concentration of them of the world. The only way to make more money is to see more patients, and there are only so many hours in the day.

  • Thanks for highlighting the growing interest in immune response, Monica. I am excited about the concluding paragraph of The Lancet article, and I agree with you that “everything matters.”

    “The road ahead forks: one branch leads to progressively more fragmented disease classifications managed by ever more specialised physicians, the other to holistic care of patients by integrated teams, taking into account their immune, somatic, and psychiatric symptoms. For the sake of our patients, we need to follow the path to integrated care.”

  • I think “low” and “high” functioning is in the eye of the beholder, someone other than the person to whom the label is applied. It is not something the person would say about himself/herself. I have heard parents refer to their own child as “low functioning.” By that, I take it they mean uncommunicative, withdrawn, poor hygiene, speaking nonsensically, etc. The low functioning person in cases like these has a huge obstacle to overcome to become self-accepting, self-validating and self-loving if others see him/her only as a deficit.

  • I’m probably not going to contribute much to this debate, but I especially appreciate what B is saying. No pill is going to make someone socially outgoing and successful. It is up to the individual to do the work. The labels are huge stumbling blocks. Autism, Aspergers (recently dropped from the DSM), Schizophrenia, etc., cause many people to freeze, and declare themselves virtually “dead” – unable to rise above their diagnosis. They are expected to “be their diagnosis” and live out their lives accordingly. “Low functioning” and “high functioning” – I detest those descriptions, too, because they imply that the person is incapable of moving out of the situation. At the most, one could move from “low functioning” to “high functioning” and yet, it still implies “chronic case.”
    Thanks, wileywitch – I agree, based on what I’ve seen with my relative. “There’s a lot going on beneath the surface even when one is labelled “Low functioning.” Properly understood and handled, it can be a period of consolidation and growth.

  • Totally agree, Ted. This article gets right to the heart of what is wrong with the system. As parents, we expect instant results, often aren’t willing to navigate the hard job of trying to understand someone who has become so unusually estranged. As parents, we are tempted to turn the job completely over to psychiatry or to throw up our hands and say we are helplesss. There are no instant results but learning how to communicate and not condemn reaps some wonderful rewards.

  • By “express it outwardly,” do you mean psychosis? If so, you have nicely explained why it is that those diagnosed with “schizophrenia” are often impervious to common illnesses.

    “Eight of us have been labelled in psychiatric settings because we are sensitive people who feel things deeply and express it outwardly, rather than internalise it and get physical health issues.”

  • Thanks for your impassioned viewpoint of what is wrong with the schizophrenia treatment model today. I’ve been around much of the same block as you have with your son, and I just wanted to comment on a few things you said, to offer a little bit of hope to others worried about the drugs they have been taking.
    You write:
    “Schizophrenic-diagnosed patients who’ve been on medication for years, and then stop taking it, generally relapse in worse condition than before.”
    My experience: Yes, that is the generally accepted view,(maybe promulgated by Pharma?) and can often be the case, but it may depend on what else is happening in the person’s life. If someone relies on drug only treatment, believes in the diseased brain model and so do the people around him, then chances are, IMO, the relapse will be prolonged because nobody has any other tools at their disposal, and fear will give way to increased symptoms. When my son has his third relapse and was hospitalized for three months, he was in much better mental shape going in to the hospital because he had been pursuing other forms of therapy. When he got out of the hospital, (unfortunately having been put back on drugs), it was clear to me that my husband and I had to go back to the drawing board and figure out how we could improve on what we were doing. We brought in more unusual therapies and changed our own ideas about the expected pace of recovery.
    Re clozapine: The holistic psychiatrist told me how hard it was to get off clozapine, and my heart sank. I think my son had been on it about two years by then. He got off it and the other drug he was taking through use of supplements. It can be done, as the Earth House treatment showed you. On the other hand, I also have reservations about the effectiveness of supplements. My son still relapsed after getting off the clozapine even though he was on a boatload of supplements. The supplements were their own form of tyranny, in that you still had to swallow them (many, many of them) every day. The shamanic approach – I really am so delighted you and your son are publicizing this route. To me, vibration and shamanism get right to the heart of what it is to be human. Recovery can really take off because the person becomes fully engaged and is not on the passive receiving end of what being a patient means.
    I wish everybody reading your post will also read your book. It’s terrific.

  • Some common healing elements which can be harnessed very effectively. This has obvious overlaps with shamanistic practices.
    “As he investigated the range of work going on around the globe, Doidge noticed some striking patterns.
    Many in the field were using non-invasive forms of energy such as light, sound, vibration and motion to stimulate the brain’s electrical signals. Those patterns of electrical energy, “can be used to help it change its structure and function when it is in some way dormant, stuck or misfiring,” he says.”

  • I totally agree with your assessment of the church having bought the narrative of psychiatry. The church could be a strong advocate for a psycho/spiritual approach to healing by joining forces with others (See Natalie Tobert’s recent MIA articles) or be a forceful advocate in its own right. Instead, it is embarrassed because so-called mental illness hits uncomfortably close to home. How can the clergy talk about being called by God with a straight face, while characterizing others who have visions and hear God on a regular basis as mentally ill? I look forward to reading your book.

  • I also believe that psychiatrists, like the clergy, have a privileged role in healing that they are not using for the most part. They, too, have forgotten their way. They (the institutional ones, at least) are lost in prescription writing and running psychosis units with all that they entail. I do owe it to one of my son’s psychiatrists in the day program he attended, to notice that my son “came alive” in acting class, so he suggested that his family take up a play like Waiting for Godot at home, where we could all act it out. Brilliant suggestion. Not enough of this insight unfortunately given out by psychiatrists these days.

  • When my son was first hospitalized with a diagnosis of “schizophrenia,” at one point he fell into a deep depression, stopped eating, and believed the world was going to end. There was talk of electroshock. His college chaplain visited him and prayed with him, and presumably did all the things that a good shaman does, which is transfer healing energy through words and touch. I absolutely agree with Alex that what we call energy healing today is what shamans do. I’ve been documenting the work that my son (and I) have done with modern day shamans and energy healers in a memoir that hopefully will be ready this year. I cover, to varying degrees, the assemblage point shift, sound therapy, out-of-body experiences, The Tomatis Method, the Alexander Technique, Emotional Freedom Technique, and other interventions that I forget at this moment. I believe what they all have in common is vibration and intent. I also am of the belief that the church has forgotten its way. I believe that most clergy consider mental illness as a biochemical imbalance, not a spiritual awakening. They don’t see that they have a special role in healing. Had the college chaplain not paid my son a visit (and I truly believe that he believed he was just doing what he would do for any of the sick, that he didn’t have a privileged role), most likely my son would have been given electroshock.

  • Beautiful and enlightening. It’s no surprise to me that you are a yoga instructor today. Viewing your story in a holistic and spiritual way, you were put on Earth to heal others. My current yoga instructor also suffered from anorexia. Yoga is how she found her calling and her way out of her severe health struggles.

  • I am quite interested in the boxes that psychiatry and theology/the clergy find themselves in when it comes to “extreme” experiences . Those who practice the art of psychiatry are high priests – they have much in common with the clergy. “Schizophrenia” is one thing they have in common, meaning how they interpret it and treat it. Thomas Szsaz had many good observations about schizophrenia being the central reason for psychiatry’s existence. I would like to say that schizophrenia is a central to the church as it is to psychiatry. Szasz’s most famous quote is “If you talk to God, you are praying; If God talks to you, you have schizophrenia.” Today, both psychiatry and the clergy act uncomfortably alike on this subject, while doing nothing to help the sufferer. (You are diseased, says the psychiatrist; you are not a prophet, says the church. Only the the “Bible” has Prophets.)

    One of my big peeves is the strange attitude of the clergy toward hearing voices. It’s quite amusing really, but if the church ever got its act together on so-called schizophrenia, it could really topple the stigma surrounding it. I’m sitting in church today listening to the sermon, given by a man who “was called by God.” He took up the Old Testament story of Samuel. (In reference to my other comments re Castanada, I fully get that the Bible is a work of fiction based on broader truths.) Samuel, as many of you well know, heard the voice of God three time, but kept jumping up and running over to his father thinking it was his father who had spoken. His father kept telling Samuel to go back to bed, until he finally clued in that Samuel was hearing the voice of God. He coached Samuel on what to say to God the next time he was contacted. Samuel did as he was told, and went on in life to become a Prophet. Now, these days, Samuel’s father would take him to a psychiatrist who would label him schizophrenic and drug him. He/she would tell Samuel that his voices were delusions and not to listen to them, and his father should not encourage him by taking an interest in the content of his delusions.

    The clergy is is a much more delicate position; it is uncomfortably aware how one could easily “mistake” these Prophets as suffering from “schizophrenia,” and not just the Prophets, just everybody in the Bible, and, let’s face it, many people in the modern day church. The Clergy is no doubt aware how “schizophrenic” it appears, dressing up in white robes, being called by God as a prerequisite for joining, kissing Bibles or swinging incense, babbling about heaven and hell and the afterlife — really I sit in Church and look around me and easily I see what attracts my son to it (he’s a member of the choir, lol). But, rather than acting like Samuel’s father did, to help those in their flock make sense of their experience in a way that encourages a dialogue between self and God, it aligns itself with the way most modern psychiatry is practiced. Schizophrenia is outside of the church, shunned, not talked about. If the Church really got interested in the content of the “delusions,” if psychiatry really got interested in the content of the delusions, there would be no stigma because millions of the faithful would buy what the high priests of both professions are saying: “You are no longer a schizophrenic, you are a Prophet/a Healer/a Leader!” But, it’s not about to happen because of the fear of being thought “schizophrenic” themselves. Many are teetering on the edge but have found an acceptable way to contain their own delusions. And, to make a long story short, that ‘s probably why Dr. Tobert is having problems getting them out of their respective boxes to discuss spiritual emergencies.

  • Sean,
    I still don’t get why you are on the warpath to discredit Castanada’s book. I read many of them; I used the knowledge that I gained from it very successfully to help my son in his healing journey. (The assemblage point was only a part of the healing process.) Are you implying that I am naive and gullible and that you have a superior understanding of what is illusion and what is not? Have courage for what? Killing off my illusions? Because that’s the impression I am getting here. Why is Castanada such a hot button for you? I used him, as I used many other sources. I take what I want from each. I genuinely don’t understand why you feel you need to correct my illusions, or delusions, or whatever.

  • Hi, Jonathan,
    I wasn’t targetting you in particular. But, where are the bodies? How many other academics joined in trashing Castanada other than the one cited? So what if his book reads like fiction? He made it accessible to everybody. It got a wider audience that it would have had it been an academic tome. Where would we be today with Castanda? The assemblage point shift is being scientifically documented by people who were familiar with Castanada’s work.
    You are probably aware that academics can be a nasty bunch who make their living tearing down the work of fellow academics for their own gain. The knives are perpetually out. We just have to look at Natalie Tobert’s box problem.She didn’t refer to knives, but fear and territoriality is a big part of why people stay in their boxes.

  • The only thing that bothers me about this is relying on one individual’s book to trash a great contribution to society. Did Castanada misrepresent Yaqui knowledge? I doubt it. I don’t want to live in a world populated by deconsructionists. Please give me a list of who else joined Znamesnki in pounding the pulp out of the useful information Castanada brought to life. I couldn’t have gone so far with my son in understanding the quantum mechanics behind his so called illness, without the help of Castanada and others who are often routinely belittled as charlatans.

  • The anthropologist Carlos Castaneda learned from Don Juan that the assemblage point is a hairy, luminous egg-shaped cocoon located about an arm’s length away from the body and linked to the energy at our disposal. A warrior’s energy, according to Don Juan, is always a consequence of a shift in his assemblage point. “Any movement of the assemblage point meant a movement away from the excessive concern with that individual self which was the mark of modern man.” Further reading of Castaneda’s books showed me that shifting the assemblage point is also an act of mastering intent. Drugs, alcohol, trauma, etc. throw off the angle that energy enters the body. Don Juan occasionally gave a surreptitious blow (Shaman’s blow) to Castanada’s back, to bring him back to reality. Jon Wale, an engineer, documented the position of assemblage point and where energy enters the body. Angela and Tom Blaen find that vibratory power of crystals can bring misaligned APS back into position.

  • I’ve been following the “shamanic vibration trail” in healing for several years with my son, and it’s amazing how some practitioners are documenting their work to show the underlying science.
    http://www.assemblagepointcentre.com/apcwhat.html Interesting, too, that after all the therapies my son has been through, he is out there on stage singing. It was good to hear your corroboration that stage work was vital for restoring your spirit. Thanks for sharing your knowledge here at MIA.

  • Hi, Natalie,
    I met you several years ago at a Scientific and Medical Network meeting where you presented your material along with a medical doctor (whose name I forget) who tries to incorporate medical anthropology into her daily practice. It was a fascinating presentation. I’m glad to see that you have published a book that will be of great interest to those who wonder why outcomes for psychiatric patients are better in countries with less access to Westernized medicine. The members at SMN were certainly receptive to your message. I see that you are still struggling with the boxes, as you put it.
    Best wishes for the success of your work.

  • Richard,
    You appear to be burning bridges to those most in need of help in your condemnation of religion and spirituality. Schizophrenia without an intense spiritual component is not really schizophrenia. Why are you aligning yourself with the masses of “normal” people who prefer not to believe in a deity or divine power, as is their right, while condemning those who do (patients). The priorities are skewed.

    “Hundreds of millions of people in the world no longer accept the concepts of “spirituality” or “the divine other” in the forms most often discussed in Western or Eastern culture. For these people, Shamanism and religion are seen as hold-overs of prehistoric mythologies, frequently damaging to human progress and welfare, even as they attempt to explain us to our selves and reconcile us to the uncertainty and ambivalence of common experience.”

    Not taking into account myths and spirituality when working with many psychiatric patients is like a psychiatrist saying to a patient that his voices have no meaning. Potential avenue of support denied. You have no doubt read Dick Russell’s recent post My Mysterious Son: The Passage from Schizophrenia to Shamanism. In my humble opinion, shamanism is only going to grow in influence over the coming years as one holistic tool in treating schizophrenia. People who don’t need myths and spirituality as a framework to their lives will very happily go about their business and be none the wiser.

  • Thank you for sharing your journey. Several things that you wrote really resonate with me, about diagnosis and about off-loading the responsibility onto others when it should be undertaken by you. Mothers (and fathers) can work wonders, but first it takes understanding of what may be the problem, then plenty of focus and commitment. Well done!

    “I was still dependent on psychiatry at that time, so I accepted the diagnosis they’d eventually give my son and instead of encouraging him to work harder, I pacified him and allowed him to do the bare minimum, because of what I was told the diagnosis meant.”

    “It wasn’t until he finished high school and had nothing to do that I decided we needed to take action. I asked myself, how do I see myself living with this young man? I saw us living independently and so I worked to move us towards that.”

    “I was trying to throw this work on psychiatry, but because I’d recognized the way people with diagnoses are viewed at the behavioral health clinic I’d worked at, my instinct as a mother told me to wake up.”

  • Hi, Sandra,
    I don’t know how these conversations reveal themselves in your office, but I wonder if the conversation should be steered away from the “delusions.” I don’t see any purpose being served in family members bringing up the “delusional” thought process and I wonder if perhaps these accusations are introduced by the family rather than by the patient, who ends up “defending” his or her beliefs. I have had great success with my own relative by not burrowing into their belief system, merely saying them “yes, you make a good point.” If the patient brings it up on his or her own volition, then wouldn’t the same principles apply? The key, IMO, is to share with the family in advance the best way to respond. No professional ever shared with me this key information. I had to learn it all by myself. Sorry, probably not making much sense as I’m a bit rushed right now.

  • I think you’ve made several good points about acceptance and changing one’s own attitude, which is a big part of recovery, for sure, but, for many, there is still a psycho-spiritual side to schizophrenia that goes largely unaddressed until you tackle it through rituals and shamanic practices. There are levels of communication and the one you raised is one, but it does go deeper. The so called illness demands the respect that can often only be appreciated symbolically.

  • Yes, Mark, at some point our evolution as humans tells us that the child must separate from the parent. Some adult children, I believe, feel that their role is to protect the parents, and to do so they spend a long transitional period as children in order to make sure that the parents stay together in the family unit. I believe that all of these relationships are very complex. Could you perhaps see that your father saying you were “lazy” might have been his vote of confidence in you? That you were not “mentally ill,” only lazy and therefore you were not your diagnosis? There are all kinds of ways of looking at this.

  • Thank you for your inspiring story. You give great hope to other parents who have been struggling for years to find real help for their adult children. I have been travelling shamanic and other routes with my son for several years now, and if I can offer some hope to you, I believe that one day your son will be able to get off the medication. The reason is that once a person finds his purpose in life, and gets a firmer footing on his path, the crutches (meds) may no longer be needed. Best wishes for your son’s continued good progress.

  • There was a story going around at my work a few years ago that one of the communications guys that was sent to Africa on assignment, after taking Larium didn’t come out of his hotel room for three days. He was completely paranoid, wouldn’t open the door and was found crouching on the floor. My husband won’t take it as he tried it once, and it gave him violent dreams. But, it’s off- patent, so it’s cheap for the military. And dangerous when you have access to guns.

  • Here’s one example. How about your child going blind? I once met a very nice but highly nervous mother of an only child. The family had just moved continents (which is always upsetting no matter how hard one may try to make it otherwise). She confided in me after the child had been in school a few weeks that before they moved he had woken up one day and was blind. He stayed that way for about a week. I think they now call it “conversion syndrome,” which is new speak for the old diagnosis of “hysteria.” The mother was so convinced that her eight year old was falling behind the school system back home that the family moved back home in less than a year. An eight year old, no less!

  • I disagree about a blanket statement that there are no psychological explanations for constipation or severe and persistent narcolepsy. I also question whether Justina was put on a cocktail of psychiatric drugs because it would seem strange to me that she would be put on drugs if the hospital was saying her problems were psychological. As far as I’m aware, she hasn’t been dlagnosed with a mental illness –the family’s been told her problems are psychological and are probably related to how the parents are handling her multiple heath problems, whatever it may be. I’m just guessing here.

  • But this to me, is mental illness.

    “Nearly half the shooters, however, had demonstrated a warning sign associated with violence,” reports Medscape. “These included racism, Nazism, gay bashing, gang membership, previous encounters with the law, poor grades, anger at school personnel or suspension, being bullied or being a bully, obsession with the Columbine shooting, parental mental health problems, and family troubles.”

    Not a biological disease but surely a troubled mind that needs help.

  • I’ve followed the Justina Pelletier case as it unfolded, and have not ventured into commenting online before because the outcry has been so one-sided. There is something that bothers me about this case, and that is why the parents wouldn’t be more open minded about exploring the possible psychological underpinnings of her illness — for the one very simple reason in that it doesn’t involve feeding tubes and surgical interventions. I have been fortunate to observe “schizophrenia” close-up. Now THERE’s a diagnosis just like mitochrondrial disease in that many people find both “diseases” spurious. Both have physical symptoms that tempt people to assume that’s it’s all medical. The Pelletiers seem like a very nice family, so it is comforting to assume that they are right about the child and the big, bad psychiatric department is wrong, but really, isn’t this the same battle that we (those of us who believe that schizophrenia is not a brain disease) fight with parents who believe in biomedical model of the “illness?” If this were schizophrenia, the Pelletiers would be firmly in the camp of biochemical treatments and might want nothing to do with the implication that there may be psychosocial causes for their daughter’s distress. Why not be open minded enough to explore all options when your daughter’s health is at stake?

  • This study joins at least three others that reach the same conclusions.

    1. Does the disease view of mental disorder reduce stigma?
    Mehta S., Farina, A, Journal of social and clinical psychology ISSN 0736-7236 CODEN JSCPFF
    1997, vol. 16, no4, pp. 405-419 (2 p.1/4)

    2. Evolution of public attitudes about mental illness: a systematic review and meta-analysis
    G. Schomerus1, C. Schwahn2, A. Holzinger3, P. W. Corrigan4, H. J. Grabe1, M. G. Carta5, M. C. Angermeyer5,6Article first published online: 13 JAN 2012
    Acta Psychiatrica Scandinavica

    3. The Chemical Imbalance Explanation of Depression: Reducing Blame at What Cost?
    Journal of Clinical and Social Psychology, 28, 415–435.
    Brett J. Deacon, Grayson L. Baird , University of Wyoming

  • I the case of my son, tapering is not the problem. Getting off the neuroleptics completely is. I believe that most people will do well on doses that are well below the lowest recommended dose.But, what caused them to become psychotic in the first place, and revert to psychosis when off the drugs entirely? I place my trust in time, therapy and maturity. If someone has been “misdiagnosed,” then IMO there s a good chance that the drugs really are the problem, but then there are people like my son, who are intelligent, sensitive, and on a journey that defies the idea that there are biochemical answers to spiritual questions.

  • “Most of the people I have cared for with schizophrenia, had prodrome(mild symptoms) or very obvious symptoms from birth or very early on in life”

    Have you published this information? Do you interview the mothers to tell you what Johnny was like in utero, as an infant, as a toddler, etc. ? No psychiatrist I ever came across was remotely interested in this type of information. And, that might be a good thing were it not the fact that their solution was to just hand out drugs.

  • madmom – There is so much in your comment. With reference to Vivek Datta’s comment ” it’s families who provide the most support and best chance of recovery” you are more powerful than perhaps you are aware. While it is nice to have professional backup, you can do a lot of good by nurturing spiritual support for your daughter. I bet the hospital doesn’t object to your bringing in a Bible and reading aloud with your daughter. Will they object to other books that sustain the spirit?
    Bide your time until your daughter is released. There is plenty of time after that to find the support your are hoping for. In alternative healing, I don’t draw a sharp distinction between the qualified and the unqualified, otherwise that would limit treatment to “socially acceptable alternatives” and we would have dabbled only in acupuncture or certain types of psychotherapy. Maybe I’ve been lucky but where I live there are a lot of weird and wild alternative practitioners, none of whom have a professional credential after their name that related to their healing skills. I think of these people as shamans, and I am 99.9% sure you can find these people in North America, too. A lot of what is considered “shamanism” I believe can be found in the West under the guise of vibration related and cathartic therapies.” Human interaction is vibration too (good or bad vibes). So is numerology. I found numerology very helpful in understanding both myself and my son. If you focus on finding recovery for your daughter, you will find it. And I agree with you that the majority of recovery stories have personal responsibility and personal empowerment in common. (That could be for either the parent or the child.) But first, you’ve got to get there, to get your relative in good enough shape to be willing to take that on. It’s taken years for my son to get there. Personal responsibility can be scary. My son’s spiritual crisis had many facets, and avoiding responsibility could be seen as one of those facets. I think I’m starting to ramble so I’ll sign off.

  • equinn – Thanks for your fascinating insight into a little known healing modality. Your story is astonishing and dramatic. Would you consider e-mailing me at [email protected]? I would like to find out a bit more about how you eventually managed to get in touch with Christian healers. My son’s situation was different, so I never had to take the route you took. Since your daughters’ crises came on very fast, it can be a sign of possession or perhaps a Kundalini awakening. I’m not well versed in either of those two events, but that is my understanding.

  • The Mark 5 quote about Jesus casting out demons resonates with me. When I turned to the medical system for help, all I got was scared. No hope there. One night I decided to dig out my rarely used Bible and the book fell open to Mark 5:1. Well, I thought, if this happened then, why does the today’s Church not believe in the same kind of miracles? (Even my priest failed to recognize the irony of thinking that his receiving a call from God is not mental illness, but my son suffered from a mental illness.. LOL) Mark 5:1-19 kickstarted my hope and I began a long odyssey to find out a possible explanation for an extraodinary event.

  • Oh, I so get what you are saying, equinn. Both cenarios presented here (blaming the parent or blaming the brain) are reductionist, but skewed in judgement of the parents (How does anyone know what really goes on behind closed doors? Certainly not psychiatrists. They make assumptions, just like we all do.

    Psychiatrist M. Scott Peck, MD, writes about “a great principle in psychiatry that “all symptoms are overdetermined,” meaning that they have more than one cause:

    I want to scream this from the rooftops: “All symptoms are overdetermined.” Except that I want to expand it way beyond psychiatry. I want to expand it to almost everything. I want to translate it, “Anything of any significance is overdetermined. Everything worth thinking about has more than one cause.” Repeat after me: “For any single thing of importance, there are multiple reasons.” Again, “For any single thing of importance, there are multiple reasons

    You say “How far would any parent go to heal the one he loves?” Sadly, many don’t go far enough. If parents want to really get to the bottom of what’s going on in order to bring about recovery, they’ve got to be prepared to take risks by going outside of conventional medical and societal wisdom. This is especially true for mental illness, but one can also make a good case for just about any illness. Viewing illness this way puts a lot of people off. They are too afraid to “go there.” They have to be prepared, as you and your wife were, to take every possible alternative as helpful. These alternatives are often shamanistic. My son has made great progress in his recovery (still living with his same old independence robbing parents), but getting help from an astonishing variety of alternative therapies and viewpoints.

  • Re autism having more validity than most diagnoses. Really? Seems to me that a lot of people still think that “schizophrenia” has more validity than most diagnoses, and there begins the uphill battle. I would hesitate to even say that for autism knowing how harmful the “validity” has been for “schizophrenia.” Are there any biomarkers for autism?” Any blood tests? Can people grow out of it?

  • I am quite interested in the placebo effect. Recently the NY Times ran this intriguing article on aging being a state of mind. http://www.nytimes.com/2014/10/26/magazine/what-if-age-is-nothing-but-a-mind-set.html

    I would like to help my son better as he tapers off his current medication. The last three times he has tried have not worked well, and he gets a delayed reaction, which invariably means he goes back on a medication. I sincerely doubt his therapist will go along with administering him sugar pills. So, what can he or I do to create the placebo effect, other than saying that this is just a normal reaction and it won’t last more than a day or a week?

  • I like to think of myself as a reasonable person. I can see extremes on both sides. But, I can’t get my head around several things that Dr. Frances has written. The first one is that he refers to Eleanor Longden’s self-help solution to grappling with voices as non-controversial, something that just about anybody on both sides can agree with. Actually, there are many people out there who insist that working with their own voices is too controversial for their relatives to indulge in. (Scared relatives who like drugs is my reading of it.) Here’s what one HuffPo blogger has to say about this: “Many perfectly healthy people have auditory hallucinations. However, auditory hallucinations can also often be part of the chaos of a psychotic illness. In recent years, numerous groups have developed to assist “voice hearers,” as some wish to be called. Unfortunately, most of these groups don’t want to recognize the very different needs of people with severe mental illnesses.” Here’s what another blogger has to say: “My son, however, would be harmed by this “hearing voices” movement – or, in the US, something called Mad In America. I’m glad it has worked for some – but it is not for everyone.” I am very surprised that Dr. Frances thinks that the Hearing Voices movement is non-controversial. All well and good as long as his own patients don’t attempt something like this? Does he not consider Eleanor Longden part of the 5%? Dr. Frances also seems to be saying although he acknowledges the inappropriate laws, that it is inappropriate people, not inappropriate laws that need fixing. The laws are particularly unreasonable if sleeping on a stoop gets you jail time. I heard a story last week about the Canadian War Memorial in Ottawa that illustrates how policing of inappropriate behavior leads to bad social outcomes. Since when, I asked a friend, does the War Memorial need a soldier standing guard in front of it? Since someone was caught urinating on it several years ago, was her understanding. If this is true, and it sounds plausible, a young soldier died because someone decided that public urination on a handy vertical object was too great an affront to Canadian values.

  • Gardenlisa,
    Only women bleed. Are we the only women commenting on this string? We are the ones “stuck” with the practicalities of the the problem. Going cold turkey off meds is not a solution, but neither is going slowly off them either, as I found out with my son. He still went psychotic, and ended up, much to my regret, in the hospital. There is a huge learning curve involved here. My son is in really good shape today, but it has taken many years and lots of different interventions. Much as I am against them, there is a place for meds. If your son goes back on them, insist that they be at the lowest effective dose, which is not the same as the lowest recommended dose; He may possibly do very well on a fraction of a dose. Psychosis is awful, and very destructive to goodwill. In an ideal world, there would be lots of help, but in the world we live in, there is not. But, much depends on how the family interacts with their relative. I highly recommend the Families Healing Together course. It can change your life.
    http://www.mentalhealthexcellence.org/families-healing-together-offers-innovative-online-family-mental-health-recovery-education/

  • I think being “too good” is an under-reported harbinger of earning a label later on. Seriously. Why aren’t we talking about this? The “bad” children are dragged by their parents to see psychologists (e.g. my second son) and they’ll probably turn out fine. It’s the ones with the harps and white robes that pass under the radar. But who takes a child to a shrink for being nice and dutiful? On the other hand, if you believe in shamanic ways, the “good” children are healers. They have a special mission in life to help others. They have to go through a crisis, though, to find their mission.

  • Jonah,
    I suspect that a lot of children who don’t know how to express anger end up with a psychiatric label. These are usually the good, thoughtful, and quiet children. Life begins to get tough for the child around the age of leaving home (17 -21). I assumed my son would learn how to stand up for himself eventually, but I was wrong. It never occurred to me that being good and kind was a mental health problem. (Doctor, can you please see my son. He’s just too “nice.”)

  • The discussion surrounding Bonnie and Julia’s article reminded me of Dr. Dietrich Klinghardt’s pyramid of healing, which I have used to inform myself about finding a healing path for schizophrenia. Many health issue, Klinghardt maintains, can be cleared up at the base levels of the pyramid. Level 1 of the base is physical – where medications and supplements often clear up a health problem. Level 2 is the electromagnetic, so relief can be found with perhaps acupuncture or homeopathy, or aryurvedic medicine. Level 3 is psychological and here’s where you find that psychotherapy can be helpful. Level 4 is the intuitive and this is the level of trance, shamanism, Family Constellation Therapy, etc. Klinghardt maintains that most schizophrenia is found at level 4, and you have to deal with the issue at this level in order to effect healing at the levels below it, the same as you would if your problems were psychological and you had physical problems (Level 5 is spiritual – only you can find it, no one else can teach you.)

    I noticed that level 1 vitamin and supplements (while helpful in many respects for my son’s mental alertness) did not “cure” him. His troubles persisted. 5 Point acupuncture, (level 2) one level up, did nothing for him. Psychotherapy (level 3) has gone on for years. I maintain that it wasn’t until he started doing therapies at Level 4 that his healing could really begin. He has recently started taking more of an interest in his health and physical fitness, and even seems to be deriving benefit from acupuncture, which he didn’t before. No quick fixes, but what happens is the trickle down effect by taking care of business higher up the pyramid.

  • I’m not very good at semantics. I didn’t think I was accusing YOU of thought control, I thought that the example you used could be turned back on itself as an example of thought control. Maybe that’s one and the same to you (and me). I’m getting confused with all the nuances. I think that reasonable people like you and me (LOL) can respect each other’s point of view, and learn from them. So, I do see your point.

  • Great title. I agree that there is a double standard at work when it comes to taking vitamins and minerals seriously for mental health concerns. Still, I would add a third point to your list about why people resist the idea of optimizing brain function with proper nutritional support.

    As an aside, how does anyone prove what optimal brain functioning should look like? Shouldn’t we be talking about cure, or complete remission of symptoms? I think most people would opt for sub-optimal brain functioning, whatever that may be, if they could hold a job, go to college, and not attract undue attention from others.

    To that end, (bullet point no. 3) my relative did not experience much success in symptom reduction using both Dr. Hoffer’s protocols and very intense nutritional support. At one point he was swallowing 35 supplements a day, and this went on for a couple of years. Pills, liquids, powders. During this time, he slowly tapered off his meds, and he was going great guns for about four months. And then the symptoms of psychosis returned, despite the fact that he continued to take the supplements as advised by his doctor. Yes, he was looking good for a while, but it was not sustainable.
    I want sustainability. I can’t put all my hopes in one basket. I see nutritional support as useful, perhaps, better than meds for sure, but questionable as to whether it can hold up in the long haul.

    I believe that there is resistance to the idea of nutrients because many have tried this route, and they don’t get long term symptom relief. It is possible that should doctors start embracing the idea that nutrients will lead to complete recovery, the placebo effect will kick in.

    There is also a lot of mainstream resistance, (not at MIA, of course, I mean “mainstream”) to the idea that mental illness is a spiritual emergency, a spiritual awakening, or the result of trauma. To talk about mind and brain matters in the context of “mental illness” provokes controversy no matter what.

    I do like reading your posts, and I continue to be open minded about nutrients. Just wish I could find the magic bullet here.

  • Hi, Ron,
    I’m not asking David to shut up, I’m asking him to consider not making assumptions about the people who come together for the purpose of bringing about changes to the mental health system. There’s enough work here to last a lifetime. I think a argument can be stretched and manipulated in any way to link two or more seemingly unrelated areas, but is it wise to do so? Your hypothetical example of a good argument: Climate change and child abuse. That has overtones of thought control. Gee, we all hate child abuse, don’t we, so if we hate child abuse then we must get on the climate change bandwagon, and if we don’t, then we must secretly agree with child abuse or would prefer to look the other way.
    I am perfectly fine with David wanting to broaden his horizons by aligning himself with all kinds of groups, but he specifically exhorted ALL of us to do out bit for climate change because we care about mental health issues, and by extension, surely we must care about climate change like he does. When I go to work, I don’t want others to bring religion or politics into the workplace unless I am working for a religious organization or a political party. (I’ve been a paid staffer for a political party.) If I refuse to take part in prayer breakfasts or discuss politics with my superiors, are my chances of advancement blighted because my loyalties to other people’s agendas are questioned? If they are, then I’ll look for a job elsewhere. All I see by introducing a diversion like climate change into mental health is a massive splintering of support for the mental health issues people at MIA have rallied around. Everybody here has their own agenda that is not necessarily supported by others, but somehow we are hanging in here.

  • Perhaps PsychoQuad would like to review Mysteries of the Organism in future. Unfortunately, I can’t upload the lurid DVD cover. I’ve seen it. Memorable is putting it mildly.

    http://www.imdb.com/media/rm735089408/tt0067958?ref_=tt_ov_i
    A dense film that cuts up footage of a primary plot of two young Yugoslavian girls, one a politico and the other a sexpot, and an affair with a visiting Russian skater. Mixing metaphors of Russia’s relationship with Yugoslavia, intercut with footage and interviews with Wilhelm Reich and Al Goldstein of Screw magazine. The film applies Reich’s theories of Orgone energy and analogies of Stalinism as a form of Freudian sexual repression. Also known as W.R. The Mysteries of the Organism in English subtitled version. Was banned in Yugoslavia shortly after it was made.

  • To “stick to the knitting” here, I’m heading get back to the movie reviews. I did my own review of Delaney Ruston’s film, and I also gave it a thumbs down. Here”s why:

    “Dr. Ruston has cultivated ties to celebrities like Glenn Close and former U.S. Senator Patrick Kennedy, who also appears in the film —red flag warnings that money, power and industry are trying to gain international respectability through the seemingly innocuous footage of a film about compassion and caring. The American style Ruston brings to the film has a Hallmark card feel to it (so do pharma ads), the narrator and her camera focusing on how alike we all are, no matter where we live. Well, yes, in many ways that’s true. I feel good about that, I don’t feel good about how scientifically speculative information about the biochemical nature of the major mental health problems is being spread through a stealth campaign called stigma.

    A feel good scene shows middle school children in the International School in Delhi, learning how to overcome stigma by learning about mental illness and the brain. We see brain charts and a kid who hasn’t a clue that he is learning science that is merely wishful thinking at this stage, spouting the usual stuff about the biochemical nature of mental illness. The teacher takes an active, nurturing role in pushing the non-existent science. These carefully cultivated celebrity connections can open international doors, and not just for filmmakers. I’ll bet a lot of the parents of the middle school kids work for pharmaceutical companies in Delhi.

    The real life stories of people struggling with mental illness were interesting, don’t get me wrong, so from that viewpoint, it is forty minutes well spent. But, I do strongly suspect that there is a hidden agenda behind the hidden pictures. Getting people and organizations to talk about stigma is pharma’s social marketing technique. Superficially, it seems harmless, but it also seems very much about getting drugs to some of the world’s most populated countries.”

  • David,
    As the originator of the “stick to the knitting” remark, may I add that I have no problems with going to enjoying documentaries about Chavez and others who have no obvious link with the mental health movement, and even coming home and thinking about them in terms of mental health. Your original blog post was something different though. You asked us to make fighting climate change a priority.
    “Everyone and every group working for mental health justice ought to make fighting global warming a priority right now.”
    Consider this call to action another way. I currently attend a mainstream church. I go there to reflect on my life as a Christian, to learn to have compassion for the less fortunate and to do what I can for community members. I assume most people go to my church for the same reason. We are multinational and multi-racial. We have different beliefs coming from different cultures and we have different political views. Some of the church members work for tobacco companies. I do not bring my political views to church, but others are not so inclined, and this creates a feeling that certain people are not wanted. I’ll give you an example. A few years ago I attended a church supper that was a fundraiser for some worthy cause. where I probably thought the money could be better spent closer to home. I don’t agree with where a lot of the money is being sent (shocking) but I keep my mouth shut because others are very supportive. However, I was shocked and angered to see that someone, who thought he was being funny, put a sign next to the collection basket that said “Admission: 10 dollars. Republicans: 20 dollars. In other words, we as a church think a certain way politically, and those who don’t are not welcome here. Protestant churches are very transient places, and very prone to having splits within the ranks because of ideology. I have seen large walkouts from one church that goes to benefit the church down the street or across town. Well, I guess it’s no coincidence that our church is struggling financially today because there are fewer and fewer members from corporations attending it, assuming that people who work in the private sector are naturally all Republicans, which is, of course, stereotyping. I have gone to meetings at work where I heard one man say to a large assembled audience, “well, I guess we all think this way about such and such, don’t we?” and I’m thinking, no, you do not speak for me on a topic that is peripheral to our mandate.” He assumed that all of us share the same political views. No we don’t.
    This is my long-winded way of saying that the mental health movement that I am a part of for the reasons I have chosen, is made of of diverse people. To accomplish our goals let’s not spread ourselves too thin and risk losing any gains we have made by making assumptions that we are all naturally supportive of a a broad social agenda that is so broad it risks becoming meaningless.
    But. yes, I’d love to see those documentaries.

  • I will be very interested to hear in future about the results of the tapering. I think you are on to something about the self agency aspect of tapering. I also think that experience and maturity is important in the tapering. My son has tried getting off antipsychotics three times in the last ten years, and has found himself back on every time. But, part of why I am hoping fourth time lucky is that with each passing year and with greater insight, he has a much better sense of identify and boundaries, something most teens and twenty-somethings struggle with. It takes a long time to build a “self.”

  • “Everyone and every group working for mental health justice ought to make fighting global warming a priority right now.”

    I am feeling let down by this call to action for solidarity with other groups that have a tenuous connection with the daily struggle families and individuals are undergoing. Please no. I’ve got my hands full just working to help one person and by extension, parts (but not all) of the mental health justice movement. I don’t need to be distracted by calls for hopping on other people’s social bandwagons. I think linking global warming to mental health justice is just too far a stretch.

    Stick to the knitting.

  • Gardenlisa,
    I’ve been following this thread for a while, and fully appreciate your frustration about the lack of practical help in a crisis situation. I have been there several times with my son, and have tried, and failed, to keep him from going back into the hospital and back on meds. If there is a ray of hope, it is that you are trying to understand things from HIS point of view, and this is really helpful in opening up dialogue. Based on my own experience, it isn’t worth it to struggle mightily to support your son not going back on meds if the rest of the family is living in fear and chaos. Perhaps, the best way to support him at this point is to encourage him to go back on an antipyschotic, but to tell him that the idea is that it doesn’t have to be forever, that you will help to support keeping it at the lowest possible dose, and that you and he and the rest of the family will work hard to see things his way, and learn to communicate better. As you are only too aware, there is no quick fix, but there can be slow, steady, progress. I have tried a variety of approaches with my son and have learned just what I wrote – all the goodwill and progress can disappear quickly when someone hasn’t learned the coping skills that may (and I emphasize “may”) help keep them off the meds. Often, coping skills come with age. Have you noticed that most of the people on MIA who say they are recovered and off meds, are generally well over the age of thirty? Just my observation. I write about the ups and downs of recovery on my blog if you are interested. No, quick fix, but, properly handled, lots of progress. http://www.holisticschizophrenia.blogspot.com

  • From one who rarely touts her own blog to onewhorarelcomments just thought you might enjoy reading my son’s and my adventures in the land of alternative healing. I have found that almost all alternatives (some of the best ones are truly “out there”) have brought my son further along the path to selfhood. Go to the About this Blog link, and you will find a list of stuff we have pursued which you can put into the search bar.
    http://www.holisticschizophrenia.blogspot.ch/

    My latest blog post is Kjetil Mellingen’s Hope for Everyone, because sustaining hope is so important for recovery.

  • I enjoyed this piece very much and also the predictable controversy stirred up surrounding anything Szasz. The part that I am having trouble with is the Western, class-centric bald assumption that the shamanic model is obsolete today. “In antiquity, the shamanic model was only believed in by the lower classes and because it is obsolete today, it does not interest us here.” Tell that to the billions of people of Africa, central Asia, Polynesia, many who continue to believe in demons and exorcism no matter what their social class or religious background. (I’ve had African Anglicans tell me in no uncertain terms about their belief in witches.) Tell that to me, a university educated, mainstream church going, fervent believer in the healing powers of shamanic practices, many practices which have been flourishing for years North American style, meaning in week-end retreats and in suburban strip malls. The world is getting smaller, and we can’t assume what we believe in Western Europe and North America applies to the majority of the world’s peoples.

  • Rather than writing a Western “rationalist” approach, I should have used the word “reductionist,” and used “spiritist” instead of “spiritual” There is a big difference in meaning in both cases, and the article clearly states that “spiritist” is about psychic abilities, not religion or (going out on a limb here) spiritual leanings, which many people have, while not adhering to a religion.

  • A very useful article. Many thanks. I would like to point out that there are ways that family members can help people understand that they are on a spiritual journey when there is no network of spiritual centers in close proximity. I simply fed my son reading and audio material that challenged the norm, ranging from Neitzche to Castaneda to Buddhist philosophy to quantum physics, in order to ignite the idea in him that his was a special path. I encouraged him to take up transcendental meditation and to visit “shopping mall shamans,” meaning the natural healing practitioners you can find almost in any small town or city in North America or Europe. These people are very helpful and take a gentle, understanding approach. I tried to limit his exposure to the medical model of the so-called illness and made sure he understood why. It would be great to have access to something like the Brazilian centers, though, because there is reinforcement in numbers.

    You write “Spiritist Community Centers in Brazil offer excellent free training that lasts years to those who have the gifts of psychic abilities. This is not religious training, nor does it involve conversion to a religion. It is also not a replacement for responsible medical care or psychotherapy to confront issues related to past trauma.”

    From what you wrote, are you saying that past trauma and spiritual emergency are not one and the same, despite the patient having been given a schizophrenia diagnosis?

    There are schools of thought, well, people’s opinions, really, that claim that past trauma is at the base of psychosis. This school of thought will also freely interchange the words psychosis with spiritual emergency. This school of thought, which appears to be growing, takes a rather Western, rationalist approach by pushing the idea that cause (trauma) equals effect (psychosis) and it seems rather blind to the idea that past trauma may not be the case for all. It can’t quite get the idea that there is a supernatural element to schizophrenia. African and Brazilian cultures with their unique practices accept the supernatural in their everyday lives. The rationalist approach, in a sense, is trying to have it both ways, without fully grasping that there are natural born healers where trauma is not an issue. The cause/effect approach is a very medical perspective, in its own way.

  • Hmm. I listened to the Bill O’Reilly piece, and here’s what I got out of it. What I think he is actually doing is siding with the gun lobby by playing up the USA as almost the only country in the world of freedom and then giving a pass to mass murder by implying that freedom is messy and that mentally ill people will occasionally make it messier. He refers to Lopez as evil, which doesn’t strike me that he has much personal experience with “the mentally ill.” For people who like to keep it simple (and you are not one of these people Cannotsay), just wave the flag a little or a lot, utter words like “freedom,” “we have the greatest country in the world” and “guns don’t kill people, evil people kill people,” and the public goes back to sleep for another few decades while mass murder rages on to an extent not seen in other countries. I’ve only heard about Bill O’Reilly, I’ve don’t recall listening to him, but hearing him now, I almost wanted to believe him. He’s a real spellbinder.

  • Steve,
    You’ve added an excellent point – it helps to establish some common ground and a way of looking towards the future. I wonder if one of the keys here though, is that as I mother, I feel I know my son best, and I recognized in something important to him in what others see as vague generalizations that make them distrust astrology/numerology. So, when possible, get your client to interview his mother if he doesn’t see it himself. (On the other hand, if a mother doesn’t know her own child, then something is wrong with the mother for not paying enough attention. There are many mothers out there who fit this bill, sad to say.)

  • Re Bonnie Burstow’s remark about 17th century English astrologers being popular with the common “mad” folk in preference to physicians, she speculates that it was probably because the astrologers did no harm in contrast to the physicians. In fact, I have found in working with my son, that astrology does a lot of good. In addition to the fact that it couches itself in positive language, astrology, numerology, and Chinese 9 Star Ki actually speak the language that my son understands –that the universe has a meaning, his life has a unique vibration, and that he, like everyone else, is on a special path. When it was impossible to do a conventional resume for my son because he hadn’t held a paid job in years, by helping him understand his numbers, I managed to construct a resume for him based on his interests and passions (accurately and eerily bolstered by his numbers) that he had been keeping up to varying degrees throughout his crisis. The resulting resume was an instant confidence booster for him. Forget “What Color Is Your Parachute,” when you want a book on truly knowing what your best traits and talents are, go to the astrology and numerology section of your bookstore.

  • Don’t know how old you are, but if you are perhaps as old as in your forties, you will have been brought up in a school system where every child was “a winner,” every child was encouraged to develop “self-esteem” and every child became to a ludicrous extent, “special needs,” if only to gain the extra help that the label delivered. “You are special” was and is the message pounded into little heads by the school system. While the goal of developing self-esteem is admirable, what we seem to have now are people who feel that whatever they want, they should get, who don’t tolerate diversity of opinion, who feel that people who are mean or negligent to others should be reported (and often charged). Before, what is commonly called snitching on others , was frowned upon as a sign of bad character. Today it is encouraged in order to make life “fair” for someone else. Life isn’t fair as we all sooner or later come to appreciate (not like) and this message would have been learned early in life by anyone who was allowed a little bit of freedom to exist outside the norm. When I go to the store, I avoid buying Fair Trade products because I ask myself, what’s fair about Fair Trade? Is it fair that companies are making money from a label that is crowding out cheaper products that people relied on just to get by?

  • Hi, Ron,
    Great initiative and something new to add to the growing “other ways” of looking at and handling psychosis. I am aware that you are beginning to give online courses and asked a friend who first alerted me to your course if it was just for “professionals.” Apparently members of the public are welcome to take it, she said. (I think it was there in the fine print when I checked a couple of months ago.) Could you confirm if this is correct? I think it’s important for the wider public to know about this course and to not be dissuaded by thinking it’s for “professionals” only
    Thanks,
    Rossa

  • Agreed, John. The idea of ECT used as a last resort is not how it is practiced. My son had been put on his first drug a month before this latest development. Obviously, starving yourself because you think the world is going to end should be taken seriously, but it was ludicrous because the shrink suggested that he discuss his existential concerns with someone else, like the college chaplain. I mean, really, should the shrink have been able to exercise the same philosophical muscle of his brain that the chaplain did? I guess it only confirms that psychiatrists don’t read the great thinkers and philosophers. Their patients do.

  • Informed consent as practiced at CAMH in 2002: My son fell into a profound existential funk and stopped eating because he thought the world was coming to an end. He was absolutely correct on that point as he was no longer able to continue as a university student and his family lived a continent away and couldn’t visit him regularly. The doctor sent me a message that said that if he didn’t snap out of it soon, he would receive electroshock. What did we know about ECT? Were they planning to ask us (we would have consented to anything at that point being the naifs we were). The message said nothing about asking my son if it was okay. As it was, a visit from the college chaplain was enough to get him over the depression. What a radical thought – compassionate, human contact as an alternative to running an electric current through your brain.

  • I find that your thoughts and strategies on coping with suicide can be beneficial for people closest to the sufferer (usually a parent or a spouse), who become depressed thinking that the situation is unchanging. I was never given to depression until I found myself parenting a son who received a psych diagnosis. Then, it was like living the Magritte painting of impending doom. I would wake up every day and try to figure out why it was that I was feeling uneasy. I would wake up at night and not be able to get back to sleep because that black ball of doom was pushing down on me. Just thinking of my son’s future would trigger panic and fear. A terrible experience that I have gotten over largely due to mindfulness, breathing techniques, positive messaging and more. And, life got better. Change happened like it’s supposed to happen. Thanks again for reminding me of these coping strategies. I know my situational depression was mild compared to what others go through, but I do think the coping strategies are universal.

  • Glad you saw it for what it was, (shameful!) because, according to pharma, this woman is one a pharma’s success stories: “One of my clients may have stayed out of jail and the hospital for over a year, and additionally the voices she heard were quieter, but she slept almost 18 hours a day and clenched her fists as a result of her Geodon. Her ex-husband would not allow her to see their 14-year-old son, and her 22-year-old son’s girlfriend refused to let her meet her new granddaughter because she could not take care of herself and needed reminders to shower.”

  • Okay, found it,but it’s vague. What does she mean when she says the family “has tried just about every program that it can”? The problem is the care he’s getting, the ER visits show that whatever treatment he’s getting (or how the family handles him) isn’t working. IMO, if you have repeated visits to the ER, the home environment is a big part of the picture. Treatment programs, whatever they may or may not do for the individual, don’t help the family understand how to handle things better.

    “Harding-Wheeler hasn’t yet found that for her son. To her, it feels like her family is in a cycle that never leads to Peter getting the help he needs. They’ve tried just about every program they can, she said.”

  • I haven’t read the story through a third time, but where exactly does it say that this 13 year old has received psychiatric treatment “his whole life?” The story leads one to believe that the “treatment” is simply heading to the ER every time the kid has an explosion. How is it even possible that a kid who is so familiar with the ER is not receiving treatment elsewhere? But this is the kind of lack of intelligent information we are expected to swallow every time. There is never a detailed examination of what actual treatment has been given and what drugs are being taken. I applaud Ablechild for dogging the State of Connecticutt on these concerns.

  • Thank you for your post and all good wishes to you and your wife. Many of us dealing with mental health issues in the family often think the biggest medical hex is a psychiatrist telling a patient that they are a lifer, but we fail to appreciate how this is also true when it comes to cancer and other medical conditions. What the doctor says can be very damaging. What others say can damage. You have highlighted what any can do to fight back and give themselves hope, which is (1) don’t hang around the naysayers. (2) stop identifying with labels and practices that weaken cell vitality and block energy healing (the naysayers and gloomy literature); (3) keep an open mind into what may work and listen to what others say that has worked for them.

  • Cannotsay,
    Could you clarify what you mean by “the two APAs”? You refer to this a lot in your subsequent comments and I assume other readers must be assuming you are referring to two organizations. Do you mean how the gay rights movement uses the DSM to 1) affirm that homosexuality is not a mental disorder because 2) it believe the DSM to be a valid determiner of what is considered “abnormal.” Therefore, the gay rights movement is implicitly endorsing a manual that continues to label others because it got what it wanted – end of story. If so, it’s not the two APAs, it’s the two ways the gay rights movement uses the manual to validate its normalcy. Thanks for clarifying what you mean.

  • Unambiguously poisonous, like homeopathy? “Good” or “bad” therapies seem to be in the experience of the client. Perhaps we should ban all forms of psychotherapy, which many people claim to be rubbish. I can’t go along with people who want to limit other people’s right to a therapy they feel may help them. The problem is often with the powerful influence of the psychiatrist, when it becomes impossible to break free. That becomes abuse.

  • I couldn’t agree more. I’m very uncomfortable with the idea that legislation will decide what are acceptable psychoanalytic therapies and what are unacceptable ones. Group think enshrined as legislation does not help individuals to choose a therapy that they think may benefit them, and may very well benefit them. We are in the realm of the mind, not the body here. An unfortunate truth that people often can’t protect themselves from the Svengali -like nature of a psychiatrist and will continue with the same person because they are afraid not to/the psychiatrist has a hold on them. I can’t help thinking of the episode of Seinfeld where Elaine tries to leave her psychiatrist. http://www.youtube.com/watch?v=xYAzjJRZ6HA Very funny, but painfully true.

  • Paris, thank for reinforcing the need to suspend belief/judgement by giving some examples. As a mother who has made the acquaintance of other mothers in the “mad” community, it is difficult to accept that the belief system that our relatives has constructed is not harmful to them or us, because it inevitably makes us sad for our relative and despairing that things will ever be better for them. And that’s exactly WHY we must change our own beliefs – to take the stress off our relatives or friends and help them gain confidence.

    This past year I have befriended a woman who has been involuntarily confined to a psychiatric hospital and lost custody of her child to her ex-husband because her behavior was increasingly seen as unhealthy for her child. Her beliefs, or at least the one that was the most noticeable, was that her husband is an imposter. Others who know this lady believe she is seriously mentally ill, but after thinking about it a bit, I figured she’s probably right about her husband. He’s not the man she married, e.g. this unrecognizable person who she presumably once loved, now has locked her up and denied her access to their child. Not at all the behavior of the man she married. She’s was traumatized before she entered hospital, but is slowly getting better, and the last thing I would ever want to do is to label her “mentally ill.” She would lose all trust in me and feel panicked.

  • Hi, again, Stephen,
    I have problems with the reported high percentage of people with mental health problems who are reported to be trauma survivors, and most likely trauma due to sexual abuse. Anybody who is alive has experienced some form of trauma. To be born is to be traumatized. When someone is experiencing first episode psychosis, let’s say in the adolescent years, I am guessing that the “word salad” of an adolescent male, in particular, has lots of sexual inuendo. Certainly it did at times with my own son. IMO, a lot of the sexual references may be more related to feelings of sexual inadequacy and frustration, that may be mistaken as a case of sexual abuse. All I’m trying to say is that I think these numbers are overblown or over-interpreted. How about coming at it from a different perspective – that the person is sensitive and afraid of what lies ahead in life, or of changes, independence, etc. Or perhaps, a prophet or a healer?

  • Thanks, Stephen, you’ve reassured me that the eight years my son has spent with his current psychiatrist are not in vain! It has been very slow going, but he’s in such a good shape now and he is only getting stronger. It points to the value of therapy when properly done.

  • Angry Dad,
    Just to clarify, are you assuming that there is a credible diagnosis of “schizophrenia” whose patients deserve that label, that is distinct from a spurious diagnosis of schizophrenia which is really PSTD? Many people in the MIA community would say that all “schizophrenia” stems from a reaction to a trauma or set-back of some kind. I’ve always said my son was correctly labelled (schizophrenia), it’s just that the label is meaningless to recovery and doesn’t address the question of cause. (It’s obviously meaningful when it comes to billing.) Dr. Loren Mosher likened schizophrenia to shell shock (PSTD) and said it resembles schizophrenia but in PSTD it seems obvious where the stressors came from and in schizophrenia it is not so obvious. Just something to think about when you try to tell the doctors that their diagnosis was wrong. My suggestion is to not insist the diagnosis was wrong but instead insist that the treatment be skewed toward understanding the trauma component. I don’t know what drugs are used for PSTD, but I’ll be willing to bet they are the same old antipsychotics that are used to “treat” schizophrenia and bipolar and so many other conditions where nobody bothers to find out cause.
    Best of luck. It’s almost impossible to win with these people, but slowly things are changing.

  • Thanks for a good post. I’m being a bit of a stickler here, but I think you didn’t actually mean to write the following, because it implies that homosexuality, is, indeed, caused by brain lesions and that this “fact” was ignored in favor of changing values. Or is it me who’s reading this wrong? I think we all understood what was intended, in any case.

    “It was not voted out of the DSM because people did an exhaustive review of the literature and decided that the brain lesions that caused it did not, in fact, exist. It was voted out because the values of the profession (and the culture) changed.”

  • Sandra,

    I’m glad that you, as a psychiatrist, directly addressed the oft-heard criticism of the Hearing Voices movement, that it encourages or even coerces people to drop their drugs, by your saying that the message is not inherently anti-drug. And you explained very succinctly why the HVN message is even compatible for those who are on drugs.

    I have noticed that this criticism, which is not born out by the facts, often comes from family members who claim that by participating in a Hearing Voices group, their relative will be told, in so many words, to drop the drugs. In fact, I would go so far as to suggest that these people know very well that HVN does no such thing, but they have a further agenda that is tied into pharmaceutical company propaganda.

    Best regards,
    Rossa

  • This is a classic political move, both on the part of a company and the APA; the ADHD discredited APA “distancing” from the new disorder while psychologists take it seriously, and gleefully anticipating the money rolling in. See also Chrys Muirhead’s recent post “Clinical Psychology in Scotland, a Handmaiden to Psychiatry.” Anyone for some reruns of Yes, Minister?

    “All of which raises the interesting question: is SCT disorder being promoted at the present time by Eli Lilly’s paid hacks as a way of increasing sales of atomoxetine (Strattera) while it is still on patent?”

    “Interestingly, and sadly, most of the research and promotion of SCT has been done by psychologists rather than psychiatrists. This fact prompted Jeffrey Lieberman, MD, President of the APA, and very eminent psychiatrist to tweet on April 11 “no credible psychiatrist takes this [SCT] seriously” in response to Alan Schwartz’s article in the New York Times.”

  • It is shocking, but typical of so many lost lives. If you wholeheartedly believe in the medical model of “mental illness” for your “loved one,” unfortunately, your loved one may remain anything but well. On the other hand, if Torrey’s sister was that unreachable, perhaps an autoimmune disorder? Great comment about the drugs not working.

    “In the article he says that after 50 years, she is “anything but well.” But he travels around preaching that the drugs work so well we should force people to take them?!

  • Apologies for the lengthy quote. NAHD is now widely available to order on the Internet, which it wasn’t when Dr. Abram Hoffer was doing his research. You can order NAHD coenzyme (sublingual) from Amazon.

    “Psychological Activity of Nicotinamide Adenine Dinucleotide (NAD)
    In 1966 Humphry Osmond and I reported (1) that NAD was therapeutic for schizophrenic patients treated in a psychiatric wing of the University Hospital at Saskatoon. We used an enteric coated tablet containing 100 mg suspended in an oily medium to bypass the stomach. Patients who were responding slowly to vitamin B3 in doses of 3 grams daily, responded much more quickly to NAD using 1 gram daily. For as long as the NAD was available, they remained well or much improved. When we ran out of supplies they quickly relapsed.

    Two negative attempts were made to repeat our work using a preparation which was dumped into the stomach of patients who had been maintained on the backwards of the mental hospitals of that era and were sick for many years. (2) These two negative reports effectively quenched interest in this compound until a few years ago.

    Professor J.G.D. Birkmayer and his associates at the Birkmayer Institute for Parkinson Therapy in Vienna, Austria, studied a stable form of NADH. They found that their stable preparation using 5 mg doses was therapeutic for Parkinson’s disease, for Alzheimer’s, and for depression. (3) They wrote,” When we first used NADH with regard to its clinical efficacy the effect was not convincing.

    This was most likely due to the rapid dissolution (approximately 10-15 minutes) of the capsule leading to a release of NADH into the acid conditions of the stomach. Since NADH is rapidly oxidized below pH 7.6, the conditions in the stomach will inactivate NADH by converting it to NAD. The investigations of this report were therefore performed with NADH capsules coated with an acid stable film and a release time of 2-3 hours. With this galenic formulation of NADH an improvement in disability could be achieved which was comparable to that of intravenously applied NADH.”

    In our studies we used NAD, which was the only form of this coenzyme available, in doses of one gram daily, but the Austrian group found NADH active at 5 to 10 mg daily.

    NAD and NADH are interconvertable in the body. This suggests that the active form is the reduced form, NADH, and that NAD is much less effective since it would first have to be reduced to NADH. The decreasing order of therapeutic efficacy would be NADH, NAD and finally vitamin B3. There would be no formation of NADH in the stomach from NAD, but there would be some made in the intestine.

    I hope these recent Birkmayer studies will reactivate interest in the therapeutic effect of this potent coenzyme made from vitamin B3. It is available from Menuco Corporation, 350 Fifth Avenue, Suite 7509, New York, NY 10118.”

  • It’s amazing how uptight mothers to be are about having the occasional glass or wine or beer during pregnancy (all those chilling advertising warnings) but the risks of taking a daily antidepressant (prescription medication) has eluded them.

  • Hi, Michael,
    Your post hits uncomfortably close to home. My son has been on the “lowest recommended dose” of Abilify for several years now. He has responsibly tried to withdraw from it a couple of times, and the anxiety comes roaring back. I used to think that he just hadn’t managed to develop a coping mechanism for his anxiety (which he never manifested before he was put on antipsychotics – psychotic, yes, but not anxious), but he now has plenty of coping mechanisms (e.g. meditation) and the anxiety he experiences off the medication is like a wrecking ball that threatens to damage all the progress he has made. The only consolation I have had is that he is supposedly on a low dose, but that’s quite debatable as 5 mg Abilify is the lowest dose that pharma pretends is needed. His psychiatrist is promising me that she will begin reducing (always at a vague point in the future when she feels he is “ready.”) When this promised day comes around again, I’m going to flood her with all the information about withdrawal, but that still leaves the problem of who is up to walking my son through his withdrawal? Good point about withdrawal from heroin.

  • Hi, Leah,
    Thank you for being such an articulate and fierce advocate for human freedoms . I don’t necessarily disagree with your focus on trauma as a causative agent in psychosis, because, it is becoming a useful and logical counterforce to the current obsessive focus on flawed brain chemistry and meds. But, I have my reservations, mainly is the pendulum swinging too far the other way in favor of one opinion and one opinion only? Is trauma the latest North American obsession that will last twenty or thirty years, until the excesses committed by people who promoted it will cause another major and polar opposite intervention? Is the trauma emphasis too Western-centric? Here in the West we like to see obvious solutions for obvious problems. What would other societies think of this? I’m certainly not an anthropologist, and I recently put this question to Phil Borges, who is one, and even he wasn’t sure about how to answer. My limited reading of the shamanic approach to treating psychosis shows at least two possible ways tribal cultures handle it. They have healing ceremonies/exorcisms or they recognize that the person is someone especially gifted and they train to person to be a healer. One of first books I read when I was trying to find a hopeful way out of the situation our family was in, featured a section on Malidoma Patrice Some, who described his African belief that what we call schizophrenia his tribe looked upon as a “gift front the heavens.” (I’m going from memory, here.) All this to say, there is no healing without a hurt, granted, but there is also the spiritual and unknowable side of what we Westerners can’t seem to come to grips with, preferring to “logically” apply drugs or “logically” say that trauma must be at the base of all psychosis, when everybody has trauma in their lives. There is a danger of not getting the public onboard by overemphasizing trauma as a certainty. But, I do agree, that the way to treat psychosis is through being sensitive to what the person with lived experience says, and that approach has been sadly absent for decades.

  • Hi, Michael,
    Thank you for another thoughtful and good post. My one tiny quibble is your equating NAMI with “grassroots.” I would wager that the people who really are grassroots aren’t in NAMI. They /we are making noises here on MIA and in the countless groups that MIA people support. Noise is only heard it seems, if it comes with plenty of money backing it NAMI may have been grassroots when it got started in California in the 1970s, but it quickly tied itself to pharma. Astroturfing and sockpuppets are two techniques I would associate with just about any successful organization like NAMI.
    If we can’t beat them by being an authentically grassroots coalition of survivors, relatives, health care workers, where will the money come from to make us at least “look” authentically grassroots? I note in passing that this week the US Supreme Court has struck down overall contribution limits for individual political donors (McCutcheon vs FEC).
    Cheers,
    Rossa

  • Kate, what worries me is that there is something terribly wrong if, as you say, not one of the many adult children of these moms that you network with is healthy. Not one? They have no peers and can’t even get on the Internet? I can understand this if they have recently been diagnosed, but if this is the situation after years of help or failed help, then something is really wrong. This is astonishing to me because what this suggests to me is that perhaps these moms rely (or want to rely) too much on the state’s social services to take on the very demanding job that perhaps these moms (and pops) don’t want to do, which is to communicate with and respect the person. This sounds obvious but is actually quite a job in itself. My son got the worst mental health label one can get, also at the age of 19. We have never used “peer” resources. that come as part of the social service network They don’t exist where we live, or if they do, we haven’t heard of them. If my son relied solely on the state to help him, and I was complacent with this arrangement, I doubt he’d be doing as well as he is doing today. He has friends, he uses the Internet. This shouldn’t be such a big deal even for someone with such a crummy label.
    The title of Oryx’s piece is We ARE the People. This is about empowering people, not institutions. We tend to forget this in our rush to get state services, many of which are very needed and appreciated, but ultimately, IMO, recovery comes down to helping the individual empower him/herself. If adult children do not have friends or cannot even use the Internet after several years go by, then they are not empowered/they are not getting the help they need to move on with their lives.

  • Kate,
    I’ve been a “carer” (I actually detest that term) for a decade now for my son, and I fully appreciate where you are coming from. The destruction caused by psychosis is not limited to the individual with the label. Families members are severely impacted, leading to a loss of health and wellbeing for everyone, a lose/lose situation. I fully understand the need for involuntary commitment for some individuals, but history shows how alternatives have been shunted aside, ridiculed, lied about, etc. The only game in town has been medication and hospitalization, regardless of whether or not these two approaches work. Repeat hospitalizations and med non-compliance are an indication that alternative approaches should be tried. In my own experience, it’s not an either/or situation. Many things that helped my relative are considered alternatives, and I’m glad that this kind of information is now more readily available. There wasn’t much around ten years ago. There are many well funded organizations that exist to prevent alternative perspectives from ever seeing the light of day, the only difference is that today, more and more people are ready to fight back. Unfortunately, the alternative side is not well funded because it largely is grassroots.

  • I agree that dosage is very important. “The doses of those formulas used in research were much larger than the doses of the everyday supermarket brands. There is no wonder that purchased brands don’t always produce an effect. We need to look at the dose.” Dr. Abram Hoffer recommended megadoses of niacin/niacimide in combination with equal amounts of Vitamin C and a B complex. His point was that these vitamins were effective in high doses when they acted like drugs. So much debunking of vitamins is based on refuting a daily multivitamin and then claiming that all vitamins are money down the drain. A daily multivitamin barely does anything for anyone.

  • Perhaps Dr. Insel needs reminding that the brain is not the mind, nor the spirit. Families can be a great source of help, were we not so routinely discouraged by the professionals. In the Disney therapy article, Ron Susskind writes: “The speech therapist tamped down our enthusiasm. Dr. Alan Rosenblatt, our trusted developmental pediatrician, did, too. He explained that echolalia is a common feature in kids like Owen.” The Disney article reminds me a lot of the wonderful memoir, The Horse Boy, by Rupert Isaacson. Isaacson tells an unusual story of riding horses in Mongolia and visiting Siberian shamans in a search of healing. He had early on noticed that his son had an affinity with horses and shamans so decided to immerse himself in what his son was interested in to see if this had a curative effect. Isaacson makes the point that if your son or daughter is interested only in trains and numbers, then indulge their love for trains and numbers by joining them in their pursuits. The same applies to other mental health labels. Find out what your relative loves, and indulge them in their pursuit. Unfortunately, family empowerment is not the stuff that gets funded by the NIMH. If not supported in their efforts, families can be easily eroded in their beliefs that there relative can fulfill their potential. Support can simply take the form of hearing how others have helped their own family members. Not sexy enough for the NIMH since it doesn’t involve hard science.

  • It is very clear to me from the quote below that families need to be educated about how to help someone in emotional distress. This has not been done, although thankfully families are taking matters more and more into their own hands to educate themselves. My experience tells me that the professionals keep this knowledge to themselves, to keep the upper hand. Knowledge is power, after all. One reason why there is this lack of information exchange has to do with families, e.g., parents, not wanting to be “blamed.” NAMI courses are a good example of “education” that doesn’t teach critical skills that would actually benefit the patient. A lot of these skills have to do with supporting the relatives’ choices, admitting past errors and asking for forgiveness, and learning how to instill hope in your relatives and in yourself.

    Cyndi Fisher is an incredible woman.

    “Nevertheless, Adler acknowledges that across his career he has seen occasions where care providers have banned family members from visiting, citing examples of people who were intense emotional triggers for patients. “If we think something is potentially disruptive to the patient, to the patients’ treatment, or the treatment milieu, I think it’s incumbent upon the hospital or institution or residential treatment center to guide that, for the most safe outcome of all concerned.”

  • Learning that my own son could get better off the drugs was a huge kickstarter of hope for me. Hope has to be expressed as something positive. Fear is the enemy of hope. I can’t say I would gather much hope if someone told me my relative had been sexually abused and that psychiatric drugs caused many of his subsequent problems. Taken alone in that context, that’s fear. It’s what you can do going forward that inspires the greatest hope.

  • You’ve said it nicely. “It is hard to imagine a program like this dealing in any other way with with fears, hallucinations or any of life’s challenges or seek to foster personal goals and aspirations. To do so would impart skills which accrue to the individual rather then benefit the program.”

  • CatNight’
    Thank you for sharing your story showing how you emerged from your painful experience. The more sharing we do, as parents, patients, survivors, the more understanding. You have also pointed out beneficial practices like Yoga, meditation and tai chi are to alleviate stress, and how this message often fails to penetrate those who have control over our patienthood.
    Best wishes,
    Rossa

  • Hi, Mary,
    I didn’t elaborate on this in my post, but Chris is “reasonably sane,” lol, 99% of the time. He is an active member of his community and a great reader of all kinds of philosophy. He has read Adyashanti’s book, so thanks for reminding me of this. There have been some really good links and book recommendations on this thread, which I’ll suggest he read. I believe he has stayed reasonably sane since his last hospitalization five years ago for several reasons, and I must admit the meds are one of them. The others are my husband and I finally figuring out how to work together to de-stress the home environment, which essentially means never discussing Chris in negative terms between us, by raising “concerns” or “problems” that eventually sort themselves out anyway, ie letting go. The problem with the meds is the side effects, which is why I firmly believe that other ways should be found to deal with the anxiety and hallucinations, which is the central problem to begin with. But, I fully agree with you about the spirituality side and that it should be honored. You have given me the idea that I will sit down with him and ask him about his religious preoccupations. Recovery courses, such as the on-line one I took recently through Mother Bear, suggest that one of the problems with relapse is that people just sweep it under the rug, glad that it’s over, and they forget how healing it can be to explore what actually happened.
    Thank you for your wonderful response.
    …Rossa

  • Hi, Jill,
    Many thanks for putting forth this information. I take it you are referring your 2014 article Will the Treatment Protocols for Schizophrenia Be Changing Soon? I haven’t had time to read it yet, but will do so today. I’m kind of jaded on the use of supplements, but always willing and hopeful to try something new. And, I do hope the treatment protocols for schizophrenia will be changing soon, as the drugs are a sledge hammer. My son has had lots of support re cutting edge vitamins and supplements, and has even gone the Dr. Hoffer niacin route for a while. Yet, even with the latest support and the help of a medical doctor, when he finally was weaned off the meds, he succumbed to anxiety/psychosis, which the supplements could no longer help. I have a leg in both camps. As long as my son is willing, we try what others have said works for them, be it meditation or vitamins and minerals. Many thanks, again. You’ve given me some further avenues to investigate.

  • And, let’s be honest, most of us are scared by psychotic behavior. But, this terrible fear that everybody has (with psychiatrists and relatives on the front line) isn’t helping the patient get well. Ignoring the hallucination is refusing to treat the patient. So, instead, we pretend to help by tranquilizing the fear. Weird, isn’t it?

  • John,
    Yes, and not only is it considered dangerous to talk about the voices, but it is also discouraged by professionals to practice meditation and yoga, to name just two pursuits that many people find helpful. And you are right. They have no evidence for this, and no evidence for almost any treatment they offer. Medical doctors have huge fear of “untreated” psychosis, and psychosis is the wound that they actually should be treating, not simply bandaging over.

  • AgniYoga,
    That’s it exactly! FEAR of ourselves is the problem. It takes a tremendous amount of courage for people to confront their fears, as Rachel Waddingham illustrated in her post. Society has built a fear of “schizophrenia,” making it the sacred symbol of psychiatry, whose priests are too afraid to confront their own fears. So, best not to confront the hallucination. Best to hide it away. But of course, hiding fear away only makes it grow.

  • Duane,
    Glad you commented here as I’ve been wondering how to get in touch with you. George Nostrand, who wrote a paper that you much admire, left a comment for you on one of my blog posts. I tried providing a link in this comment box and it didn’t take, so go to my blog and type into the search engine “astonishing rise of mental illness” and you should find it.
    Best,
    Rossa

  • This is a fascinating discussion between Dr. Steingard and Dr. Keith Laws. From my quick skimming of the original post and then the comments, my understanding is that Dr. Laws maintains that 20 years of research consistently shows that CBT helps at best 5 – 7 percent , which, from a public policy point of view (money) , is not justified for the many. Before she spends her own money on training, Dr. Steingard wants to know if Cognitive Enhancement Therapy shows more promising results, which apparently it does, but it works on cognition, not symptom reduction. What I take away from this is that individuals are not statistics. My son has tested out many interventions, none of which have the Good Housekeeping Seal of Approval (except for the drugs, of course, which produce more or less the same effect in everybody)). By ignoring Randomized Control Trials, I think he’s done rather well. Had he been deterred from trying because the stats weren’t in his favor, he might not be where he is today. Most of the interventions he tried hold no scientific interest in any case. Cognitive Behavioral Therapy is a hot ticket item these days and we are hearing lots about it. CBT is one therapy he hasn’t tried, but it may very well work for the 5 to 7 %. In any case, this is an academic debate, and individuals needing help should hold a different standard by which to judge the product. Again, thanks for a good discussion.

  • F.Y.I. The Stratford Festival is dedicating its 2014 play season to the theme of madness.
    http://www.broadwayworld.com/article/Stratford-Festival-Announces-MADNESS-MINDS-PUSHED-TO-THE-EDGE-2014-Season-Feat-Shakespeare-CRAZY-FOR-YOU-More-20130820
    There may be synergistic opportunities as the Festival has started to bring in guest speakers during the play season.

    “What excites me about this playbill is it contains plays in which the protagonists are driven to extraordinary places,” says Mr. Cimolino. “Extreme stakes lead to great drama.”

    “These plays explore minds that are driven out of balance by a variety of forces: love, war, poverty, age, sexuality. In today’s fast-paced global community, we are becoming ever more acutely aware of the consequences of such pressures. The issues behind them are interesting in themselves, but what they do to the human mind – to us – is ultimately the most fascinating thing. When the pressures of life become great enough, our minds give way to other realities. The result is often heartbreakingly tragic, but can also be a trigger for comedy.”

  • Good observation. Speaking as a parent, it takes years to come to grips with what is going on, with very little insight or help provided by “the professionals.” Your suggestion of hiring an expert is light years ahead of where most parents are, which is in the dark. Most parents, most people, have only heard that mental illness is a brain disease that requires only a medical intervention. Many parents are resistant to the idea that better communication skills are needed. (Remember why NAMI got started.) Courses like Recovering Our Families, which teach empathy and good communication skills, are a relatively new thing, accessible via the Internet for a modest fee. By the time someone is at a crisis point, as was Gus, it would be foolish to risk it. For me, each hospitalization for my son meant a failure, so his getting out was the chance to work on good communication skills, etc.

  • I’ve taken two of Krista’s online courses and highly recommend them. I think it is important to stress that the courses don’t begin or end with the premise that families, and parents in particular, are abusive and the cause of the original psychosis. The course helps individual families learn how to help foster recovery in others and in themselves. (Hint, it’s all about keeping hope alive in yourself in order to keep it alive in others.) It doesn’t teach better parenting skills. It teaches the skills that are needed to navigate an intense period of turmoil in the lives of families. It teaches participants how to talk to someone in extreme states, how to empathize with what they are going through, how to set boundaries and how to HOPE. This is a revolutionary approach because it’s a direct challenge to the authority of the medical profession that up until now has controlled the framework of discussion, casting everything as a “disease” model. Many thanks to Krista, The Family Outreach and Response Network, and Mother Bear for helping people to practice building an environment conducive to recovery.

  • Thanks so much for tracking the results of drug tapering. I agree, a lot has to do with client buy-in. Just reducing the drug dosages to lessen the long term risks is an admirable goal. Anecdotally, my son didn’t have any problems with a very slow, steady taper off his drugs, but, frustratingly, he has gotten off his drugs twice in past years, and within several months symptoms of psychosis reared up and he went back of the drugs. This whole field of study is so complex. A lot depends on how the re-emergence of symptoms is handled. It’s not necessarily as simple as providing a quiet respite and ramping up the psychotherapy and all is well again. Perhaps the answer will be partly in adding a drug back in for a period of day or weeks, not months and then discontinuing it. I would like to see more research done in this area. Thanks again for documenting your studies. A huge step forward.

  • Steve,
    You write: Why on earth would they continue a treatment that doesn’t improve the condition it is intended to treat????

    This question has baffled me from day one. I kinda expected that the drugs given my son would clear up his psychosis, and no matter what drug he was given, he wasn’t much improved. So the obvious solution in my mind was to get him off the drugs, although he has really only succeeded at present to keeping his medication to the lowest possible dose of one drug. But I am always amazed at how trusting other parents and patients are of their doctors. They don’t trust their own eyes.

  • Thanks. These stories really contribute to an understanding of what went on there. If you notice, though, only two people actually seem to have been “patients” (or whatever they chose to be called). The rest were friends, girlfriends, and professionals who were interested to share in the experience. This is often what happens with these kinds of programs, and probably doubly so if you have a charismatic leader. The two ex-patients’s testimonies lead me to wonder how good a track record at helping people resume full and productive lives Laing had. Was he better at understanding people than in treating them?

  • Fascinating. I would also like to hear more from people who had actually spent time at Kingsley Hall or Portland as patients. I recall reading something several years ago by an ex-patient who said that all was going well in the Kingsley Hall free-wheeling style, until he seriously scared R.D. Laing because of his antics. I believe he got wrestled to the ground and medicated, so, even for Laing there was a limit, and the patient said that the limit was reached when he became really scary to his psychiatrist. But, he appeared to harbour no ill will towards Laing, and just chalked it up as part of the experience.

  • Your Professor Videbeck reminds me of the admiring description of one of the doctors in Molière’s Imaginary Invalid.

    “He is firm in dispute, strong as a Turk in his principles, never changes his opinion, and pursues an argument to the last recesses of logic. But, above all things, what pleases me in him, and what I am glad to see him follow my example in, is that he is blindly attached to the opinions of the ancients, and that he would never understand nor listen to the reasons and the experiences of the pretended discoveries of our century concerning the circulation of the blood and other opinions of the same stamp.”

    and then there is this one:

    Arg. “Still, doctors must believe in their art, since they make use of it for themselves.”

    Ber. “It is because some of them share the popular error by which they themselves profit, while others profit by it without sharing it. Your Mr. Purgon has no wish to deceive; he is a thorough doctor from head to foot, a man who believes in his rules more than in all the demonstrations of mathematics, and who would think it a crime to question them. He sees nothing obscure in physic, nothing doubtful, nothing difficult, and through an impetuous prepossession, an obstinate confidence, a coarse common sense and reason, orders right and left purgatives and bleedings, and hesitates at nothing. We must bear him no ill-will for the harm he does us; it is with the best intentions in the world that he will send you into the next world, and in killing you he will do no more than he has done to his wife and children, and than he would do to himself, if need be.”

  • Picking up on Daniel’s comment about Joanne Greenberg’s experience with her driver’s license, I would love to see an indepth article here at MIA on discriminatory practices around driver’s licenses and mental health labels. My son, who is 29, was just learning to drive when he fell into his crisis. He never got his license, and now, I would hate to think that should he decide to get one, he will be considered ineligible. This is an important issue, and of course, much depends on the jurisdiction.

  • Hi, larmac,
    Unfortunately, most of us find out about this kind of help only after having been subjected to the standard hospital rush to label and treat. By then, so much psychological damage has been done, often with tragic results. I’m so sorry about what happened to your son, and thank you for having the courage to speak up about the injustices that are inflicted by the mental health system.

  • The kind of positive support and encouragement that is so lacking in current mental health treatment is demonstrated in an interview on Madness Radio with Krista McKinnon.
    http://www.madnessradio.net/madness-radio-effective-family-support-krista-mackinnon

    First Aired 9-1-2013
    “How can family members help a relative in extreme crisis – instead of worsening the situation? Is there a way out of treatment power struggles and arguments about “insight”? And what do families need to change about themselves? Psychiatric survivor Krista MacKinnon, formerly at Toronto’s Family Outreach and Response program and now Director of Practice Recovery, discusses practical methods for turning family relationships into tools for healing.” http://www.practicerecovery.com
    http://kristamackinnon.net, http://www.familymentalhealthrecovery.org

  • The HCG diet was created by Dr. Simeon in the early 1970s. Human Chorionic Gonadotrophin is a hormone produced by the placenta during pregnancy. It is believed that HCG maximizes the functional capacity of the body’s control centers in the hypothalamus. The hypothalamus is a part of the central nervous system and controls many different body functions. Dr. Simeons believed that one center in the hypothalamus, which he called the fat bank, controls the movement and distribution of fat throughout the body. HCG mobilizes abnormal fat and releases it as a source of energy and nutrients. Thus the hypothalamus ensures that the developing fetus has access to energy and nutrients even if a pregnant woman temporarily lacks access to food, thus protecting the fetus’s growth and development. Likewise, when a patient is on the Dr. Simeons HCG Protocol small amounts of HCG have been shown to mobilize abnormal fat and to make it available to the body as a source of energy and nutrients. – See more at: http://drbloem.com/treatment-options/dr-simeons-hcg-diet/hcg-diet-faqs/#sthash.dI5w847l.dpuf

  • Madeline,
    You’ve hit upon a very important, often hidden epidemic: Caregivers who take “coping” medications in order to stop worrying so much and get some sleep. I did the same, although luckily “just” a popularly prescribed antidepressant, not a benzo. I tried getting off it after many months went by, the anxiety came flooding back, so assumed that I must need it. I tried again after a while, this time taking a longer term view, and supplementing with a homeopathic treatment. It worked. I eventually took up yoga and dabbled in meditation to learn better ways to cope. Mindfulness training and EFT were also useful tools. The lingering after effect of the antidepressant was the metabolic weight gain, which I resigned myself to for several years, until I eventually found a treatment for that, as well.
    Thanks for telling your story, and all the best for your continued recovery.

  • Many thanks for an excellent review of Joanna Moncrieff’s new book. It makes me want to run out and buy a copy.

    David Healy has a different take on why psychiatry and pharma happily jumped into bed together after WWII. Antiobiotics, antipsychotics, etc. were now available by presciption only.
    http://www.pharmapolitics.com/feb2healy.html

    “The other thing that is happening stems from another war that began in 1914 – a War on Drugs. This began with the Harrison’s Narcotics Act, which made the opiates and cocaine available on prescription-only. In 1951, a Humphrey-Durham Amendment to the 1938 Foods Drugs and Cosmetics Act makes all the new drugs produced by the pharmaceutical revolution following the Second World War, the new antibiotics, antihypertensives, antipsychotics, antidepressants, anxiolytics and other drugs, available on prescription-only.

    Not everybody is happy with the new arrangement. Many complain that a system designed for addicts is not appropriate for the citizens of a free country.

    A combustible set of ingredients has been put in place that will lead to an explosion. It only took 16 years for the explosion to come.

    In the next slide, you see the Tokyo University on fire. Tokyo sits at the apex of the Japanese hierarchy. The students have occupied the Department of Psychiatry in an occupation that continues for ten years. Psychiatric research in Tokyo is brought to a halt. The most powerful psychiatrist in Japan, the professor of psychiatry in Tokyo, Hiroshi Utena, is forced to retire (Slide 2).

    Why is there such an extraordinary development? Only 16 years after the discovery of chlorpromazine, which liberated the insane from their straitjackets. The great boast of the advocates of chlorpromazine was that it had restored humanity to the asylums. Previously, lunatics had been guarded by jailers, who treated them brutally. Now it was possible for therapists to see the humanity of their patients and talk to them. The level of noise in the asylum has fallen.

    However, the times have seen the emergence of antipsychiatry and the antipsychiatrists respond that real straitjackets have simply been replaced for chemical straitjackets, for the camisole chimique. That indeed there is silence within the walls of the asylums, but this is the silence of the cemetery.”

  • Well, I wish her luck. This story just shows how bizarre the whole diagnosing thing is. She’s getting a second (and third) opinion of ….. an opinion. The latter two opinions, no matter how welcomed she finds them, are no more scientific than the first one. While I hope that she succeeds in withdrawing from the drugs, just because she now thinks there was no basis for the original diagnosis, doesn’t mean that there will not be times in her withdrawal process when she questions her sanity and re-examines the validity of the opinions. Perhaps she will stop taking other people’s word for it and learn to trust herself more. In mental health, the diagnosing and the drugs really heap on layers of complexity. Maybe the time has come to revive the term, manic-depression, simply because there were very few manic-depressives in comparison to today’s many “bipolars.” This is an unscientific, but potentially easy way of bringing down the numbers.

  • I tried to comment on the 60 Minutes video, and was refused, so I took my complaint to Twitter.

    Rossa Forbes ‏@RossaForbes 23h CBS NEWs biased against international commenters: “Note that only characters on a standardEnglish keyboard will be accepted.”

    This effectively locks out most of the world. How incredibly narrow minded, for a news organization.

  • Got it, Nancy. I was getting hung up on the word “cut”, which I don’t associate with liquids. Thank goodness my high school chemistry teacher didn’t ask me to sing, or I would have hated chemistry even more. LOL. My high school was so poor and so rural that I don’t remember our having a lab. Can you believe that? Perhaps a laboratory would have changed my mind about chemistry. Love, Rossa

  • Claire,
    My two cents. It sounds like it may be a little early to determine if your weight will come off. My experience after tapering off a particular antidepressant was that the weight stuck even if I went back on my previous diet that always produced results. After a few years went by, I discovered the word “metabolic syndrome” but I also found Dr. Simeon’s book, Pounds and Inches, http://hcgdietinfo.com/Dr-ATW-Simeons-Pounds-and-Inches.htm It’s a good read, he explains the problem well, and he doesn’t talk about psychiatric drugs (the book was written around 1970). The diet is called HCG. It’s an expensive boot camp that involves a semi starvation diet and Human Chorionic Gonadotropin, a hormone naturally produced by the placenta in pregnant women that almost completely controls the metabolic function through the hypothalamus throughout the pregnancy. It worked for me. I was on the diet for about 15 days and lost the eight kilos that I had put on with the antidepressant. This weight loss was permanent, probably because I am careful about my weight on a daily basis. But, I could not lose the weight taking the normal precautions.

  • Nancy, bear with me. I am really, really, slow. I hated high school chemistry. I’m getting two different messages. (1) There is a cut, and some wastage, but the rest is dissolved into the solution. (Doesn’t make sense, because of the wastage.) (2) Dissolve the whole tablet into the solution. By extension, you would then have to stir and siphon off a small amount with a syringe. I am confused about why you are cutting, but I presume you mean siphoning???

  • Hi, Donna,
    The Hearing Voices network encourages people to learn to manage their voices whether they are on medications or not. It is not a no medication alternative, and neither is empathic therapy. The Open Dialogue program also uses drugs, when necessary. From the MindFreedom website:
    “Journalist Robert Whitaker describes the Finnish “Open Dialogue” process in his book Anatomy of an Epidemic. He visits the program, and gives his impression of why this program is helping people diagnosed ‘schizophrenic’ and other ‘psychoses,’ while minimizing prescriptions of psychiatric medications.” So, yes, even Open Dialogue sees them as sometimes necessary. Dr. Abram Hoffer also said, that he uses them on occasion because they are necessary. Why are they necessary? To calm someone down quickly. I’d like a better alternative to medications, but Open Dialogue, HVN, and empathetic therapy are not quick interventions. In the meantime, much damage can be done, relationships can be destroyed, self-esteem plummets, personal safety at risk, if there is no access to a tranquillizer. These drugs are awful, there is no doubt about it, and much of the criticism is about how they are prescribed, but the no drug alternatives are not short term fixes when the situation may be getting rapidly out of hand.

  • Wayne,
    Having suffered through a two year first episode psychosis program that my son was enrolled in, I can only agree with your assessment of the way forward. The program purportedly had good intentions (to integrate the person back into the community), but it fell way short of the mark, and a lot of the blame falls on insistence on the medication mystique as the primary modality. Once medications become the focus, fear takes over and so does biomedical psychiatry. Talking about one’s voices was taboo, but I remember on one occasion, when the families and “loved ones” were all gathered, one of the young men told the group how he dealt with his voices, which was to listen to them and try to make sense of them. This got an immediate reaction from the psychiatrist, who told the group that acknowledging and trying to deal with one’s voices was not recommended, and voices are to be ignored.

  • This sentence caught my eye, because I think it is not only applicable to childhood autism diagnoses, but to many issues that are given psychiatric labels that surface in early adulthood.

    “Is it possible to go back in developmental time and “do over” critical relationship experiences that for reasons we may never understand were missed or never fully integrated?”

    Unfortunately, what has often stood in the way of relearning relationships are the parents — who feel that their parenting skills are being called into question. Everybody loses if people are not willing to put aside their own egos. It is certainly possible that parents of autistic children are more willing than parents of the adult children to do whatever is needed to see changes happen. Hopefully, the “alternative” (environmental) view of human distress will become more and more mainstream.

  • Hi, Sera,
    I applaud peers in many ways, don’t get me wrong, but the bureacracy can really cloud the idea that recovery is a personal journey with its own complexity. Everybody has an opinion about what is best for the identified patient. If my son was in peer supported environment, yours sounds pretty good because you question the ties with the medical bureaucracy.

  • After readings the post and all of the comments, I consider myself lucky that there is no peer movement in the country where I live. You have said elsewhere, something to the effect that the best peers are your friends and allies. Ehen the coercive powers of the state are involved, there is little wiggle room. Let me see if I can connect the dots. Start with a mental health crisis, enter hospital or doctor’s office, get a prescription, become permanently teathered to the system because of the prescription, get involved with social workers/peer support workers. Get out of the system only if you are willing to go it alone, which has its own problems, too, of course. Our family has had to enter into what Thomas Szasz calls a “contractual relation” with a psychiatrist. We hired a private psychiatrist rather than stick with the state run program he was in, and we also entered into a contractual relationship with an occupational therapist, where previously this was provided through the program. My son is still teathered to his psychiatrist because of the prescription, but there are no tie-ins with the complexities of the state. In theory, we have more say by going private. The psychiatrist and the occupational therapist know that the money is coming from us. He who pays the piper calls the tune.

  • Thanks, Chaya. Your post touches on most of what I have come to learn about how to help parent and adult child navigate the journey from the darkness to the light. For any person who has trouble finding those gifts (idea #2, I found numerology and Chinese Nine Star Ki very helpful. The universe does not lie. I feel that these more “offbeat” approaches speak to someone in psychic distress or uncertainty more effectively than the more conventional ways that are often used to help people, e.g. the career counselling approach.

  • One of my favorite books is the absolutely brilliant Memoirs of My Nervous Illness, by Daniel Paul Schreber. I was amazed at how good a modern quantum physicist he could have been (He was a German high court magistrate.)

    From NYRB:
    “In his madness, the world was revealed to him as an enormous architecture of nerves, dominated by a predatory God. It became clear to Schreber that his personal crisis was implicated in what he called a “crisis in God’s realm,” one that had transformed the rest of humanity into a race of fantasms. There was only one remedy; as his doctor noted: Schreber “considered himself chosen to redeem the world, and to restore to it the lost state of Blessedness. This, however, he could only do by first being transformed from a man into a woman….”
    Since…[its publication in 1903] it’s been widely regarded as the most revelatory subjective account of mental illness ever put forward…….To call this epiphanic confession a cross between Hildegard of Bingen and Philip K Dick may demarcate its territory, but it gives little idea of the universe of detail and the evangelical white heat of its sustained visionary narrative.

    Quotes
    The wonderful Schreber…ought to have been made a professor of psychiatry and director of a mental hospital.
    — Sigmund Freud

  • The media saturated culture that warps our sense of reality and blurs the line between fact and fiction is one reason that I was slow to pick up on what was happening to my son. His disjointed written poetry didn’t seem much different from what I was hearing in popular music. I shrugged it off as a creative struggle. Wish I had been more resistant from the get-go of the medicalized version that came to define his struggle.

  • “Since last night I have thought a lot about how two of my readers wanted my article changed so they would feel more comfortable about how “others” would see it.”

    Hi, Nancy,
    I don’t think what you said about two of your readers (and now three, with my chiming in) is accurate. Nobody wants your article in its entirety changed (your words, your interpretation of what was actually said) – if you are referring to Ron’s and other people’s comments, including my own in support of what Ron said. Your article is excellent, which is what we have come to expect of you. We are simply referring to the widespread belief that you repeat in a single sentence in your article that implies that ALL psych patients on drugs die on average, 25 years earlier than the general population. Maybe you didn’t intend it to come across that way, or maybe you did, but the tiny sentence deserves scrutiny. Looking at this dismal but frequently repeated claim, from my perspective, if taken out of context, means that my son, who has only been on, at the most, two psych drugs at once, and more often one, at the lowest recommended dose and often less than that (I think even the lowest recommended dose is too high a dose), is going to die 25 years earlier than the rest of the population. I doubt this will be his fate, at least not from psych drugs, not that I want him on drugs forever or even for much longer. But, this scary statistic is bandied about by many people, and may actually do more harm than good when there are not many alternatives in place to help someone through active psychosis.
    This 25 year early death scare is only part of your superb piece, and probably would have gone unnoticed had not Ron raised it, but I think that so much depends on how much, how long, and how many. The rest of us who don’t fall into this category or whose relatives don’t fall into this category, need to be vigilant, for sure, and hopefully work to get off the drugs, if we can, but not traumatized by a prediction of early death that may not stack up depending on the particular situation.

  • I agree, Ron. We are in danger of over-dramatizing the risk. So much depends on how much, how many, for how long. We are vulnerable to our most vociferous and dastardly critics if we claim that everybody will die, on average, 25 years prematurely. Being captured, as Nancy aptly terms it, happens to a lot of people, but some are in much deeper than others due to over-drugging – polypharmacy, too high a dosage, for too long a period of time. If they don’t manage to extricate themselves from lengthy over-drugging, then, chances are,their life span will be curtailed.

  • I’m not sure exactly who I’m responding to here, but IMO, paranoia without religious and mythological interests is just psychosis. Dr. Abram Hoffer claimed that paranoid schizophrenia (where paranoia was the most evident of the symptoms) was the easiest of the schizophrenias to treat, meaning it responded well to an orthomolecular approach – niacin, other B vitamins, vitamin C and zinc.

  • Hi, Michael,
    Tomatis is quite popular in continental Europe, where I live, and is often covered by insurance as alternative treatment. Most people are familiar with it as a therapy for learning disabilities, like dyslexia, and some people take it to improve their language skills. I looked at it and wondered if it could do something for “schizophrenia” and got my son’s psychiatrist to prescribe it. That being said, I don’t think people have to feel they are missing out because they can’t afford the therapy. Healing takes time and a sustained calm and compassionate environment works wonders! It’s truly a journey and nothing happens overnight. I’ve taken notes over the course of this journey and I can pinpoint when my son’s voice got lower, and then lower, etc. For me, it’s always more difficult to hear if my voice is lower than it was before, but it makes sense that if I let go, if I’m less anxious, my voice has lowered, too. All this takes time and understanding how to support oneself and the other person. Thanks for your insight into these matters, which comes from the heart.

  • Sarah and Michael,

    The lower toned voice is something that I find intriguing because I often can tell how well my son is when I observe his voice getting deeper (lower.) I see it as a sign of increasing wellness, and I assume it demonstrates that his anxiety is lessening. I have observed a lower voice after he undertook different therapies. Eventually he was able to concentrate more on his singing voice and perform in public. One therapy in particular where I noticed this happening was Tomatis, The Tomatis Method sometimes involves listening to filtered ecordings of the mother’s voice in addition to Mozart and Gregorian chants.

    “According to its creator, Alfred Tomatis, there exists a relationship between the ear and the voice of an individual. The method is based on a so-called pedagogy of listening that allows a person to learn to communicate more effectively by learning how to listen more effectively. The method is based upon three main laws:

    ” The voice can only make the sounds that the ears hear.

    ” If the way a person listens changes so too will the voice change. This change occurs immediately but unconsciously.

    ” It is possible to change the sounds of the voice by a sustained auditory stimulus.”

    So, I agree that a low tone of voice is very helpful. Probably yoga and other relaxation techniques would also help make this happen. Various sound therapies may also help, because of the vibration penetrates the body and the lower tones help a person relax, depending on how they are interpreted.

  • Sarah and Michael,

    The lower toned voice is something that I find intriguing because I often can tell how well my son is when I observe his voice getting deeper (lower.) I see it as a sign of increasing wellness, and I assume it demonstrates that his anxiety is lessening. I have observed a lower voice after he undertook different therapies. Eventually he was able to concentrate more on his singing voice and perform in public. One therapy in particular where I noticed this happening was Tomatis, The Tomatis Method sometimes involves listening to filtered recordings of the mother’s voice in addition to filtered Mozart and Gregorian chants.

    “According to its creator, Alfred Tomatis, there exists a relationship between the ear and the voice of an individual. The method is based on a so-called pedagogy of listening that allows a person to learn to communicate more effectively by learning how to listen more effectively. The method is based upon three main laws:

    ” The voice can only make the sounds that the ears hear.

    ” If the way a person listens changes so too will the voice change. This change occurs immediately but unconsciously.

    ” It is possible to change the sounds of the voice by a sustained auditory stimulus.”

    So, I agree that a low tone of voice is very helpful. Probably yoga and other relaxation techniques would also help make this happen. Various sound therapies may also help, because of the vibration penetrates the body and the tones can help a person relax (or produce anxiety), depending on how they are interpreted.

  • Cathy,
    Sounds to me that the “children” are finally rebelling against the parents. A natural course of events (or should be) in people’s lives.You don’t say how old they are, but I imagine they are in their early twenties. Psychology courses have a knack for making every one an amateur psychologist. The woman’s movement back in my time and my reading of Germaine Greer’s The Female Eunuch, really set me off against my father. He got the brunt of my disdain (wife oppressor, daughter oppressor, blah, blah blah) I got over it, but it was more about me and my inner turmoil.
    You know what I would do if I were your brother? Ignore it. if he has to disengage for a while, then he should step aside and let his children work through this. Most likely, they too will move on.

  • Stephen, Like you, my experience is with medical students, or those hoping to be medical students. I know it’s not a fair comparison, because medical students are supposed to be driven, and are usually top students or they wouldn’t get into medical school. But, these days the competition is even stiffer. Not just GMAT scores and excellent grades, but community service work, etc. must show up on resumes. The planning for medical school is a killer, and that’s just trying to get in. Then to stay afloat once inside, well, if they are used to taking drugs for concentration, they may think little of continuing that habit. It’s just guess I my part.

  • Bruce, thanks for the usual thought provoking post. Children and teenagers are under such pressure to perform academically beginning at the earliest levels of education. Some, particularly boys, who are generally bored to death in elementary school, are deemed ADD or ADHD, and put on drugs. If they stay on these drugs, they seem to lose sparkle, passion, and from my limited observations, become robotic. I have worked with quite a few interns from the most prestigious universities. They are super-competent, but seem to lack joie de vivre. They are very in control of their emotions, too much so. Doubts, if they have any, insecurities, if they have them, are buried well below the surface. The period of one’s twenties is a crazy, emotionally tumultuous experience, or used, to be. I’m not getting the vibes from these twenty somethings, that life is anything but straight up the harder they work and aspire to achieve. In many ways, they are ideal people, but I wonder …….

  • Seth,
    I wrote I sensed anger, and now I’m reading anger. I’m not worth the time and emotion you have spent psychoanalyzing me. I have “noticed” (it’s perfectly acceptable to write about impressions)that you sometimes resort to pulling the I am a PhD psychologist card, trying to make the hapless soul on the receiving end look small and ill-equipped to play in the big leagues. Guess what I didn’t like? “Did you never read The Loony-Bin Trip?” I sensed anger there big time with me. Perhaps you meant to write “ever?” There’s a huge difference in tone had you written “ever.” I feel my experience with a family member is perhaps even more valuable than anything a PhD psychologist might have to offer. I do my reading, too. Perhaps I remind you too much of a NAMI mother? I don’t know, but I sure struck a nerve with you.
    …Rossa

  • Hi, Seth,
    When I wrote my comments critizing the mother, it wasn’t to attempt to change her, nor the other NAMI mommies whose opinions are virtually identical to hers. (Not all NAMI mothers are cut from the same cloth, may I add.) I chip in my two cents worth for the newcomers who may not know the full picture, and for those who are beginning to question the status quo. Also, while I appreciate the idea of helping the young man get a room somewhere, this may or may not be a good strategy. For one, since his parents had practiced “tough love,” it’s very likely he was already living in a cheap room somewhere, feeling lonely and unloved. For some people this may work, but I bet it works better for those who are older, more “recovered” and those for whom the family is clearly toxic. I can only go by my own experience. For a while, I longed to get my son out of the house, away from the rest of the family. We were exhausted, we felt he was old enough to start being responsible for himself. Despite being 25 years old, he was very attached (too attached) to his family, and is, to a lesser degree, at 29. Being socially isolated breeds paranoia. I believe that people like him are deeply empathetic, and need caring people around them. They will regress in isolation. In many Western cultures, having an adult child living at home is an embarrassment. We keep wanting to push them out “for their own good”, when it is usually “for our own good.” Getting off the drugs may not be the driving force for the young man in question. Establishing trust within the family relationship might be a better first priority. The mother might do well to learn to let go, and be there to support her son when he chooses a different path than the one she might have chosen for him.
    Best regards,
    Rossa

  • Greg, as someone who did criticize the mother, here’s a partial explanation for why I did so. She, assuming the letter was not fictious, as I briefly wondered, (see above) was invited or encouraged by Pete Earley to post the letter, presumably as part of his stated commitment to have people who were in the audience comment on Bob’s presentation. I believe many of us are long past pretending that what happens in the home, how our relative is treated, has no relation to how well someone does or does not recover. Too many people bend over backwards to not say what needs to be said because they are afraid of offending. Just like “take your meds for life” is a mantra that many people don’t question, so too is the belief that the family environment is off limits because, well, it’s a brain disease, isn’t it, and therefore the family environment is irrelevant. That’s how NAMI got to be NAMI, by telling parents that their actions had no bearing on a brain disease.

  • I must admit, because of the wild accusations and focusing on the sensational aspects of her son’s homelessness,I was wondering whether the mother was fictitious. I don’t appreciate hearing the horror stories because we’ve all been there and the retelling is pointless, unless sympathy is the goal. Earley would have done better to insist that she post a name (fictious first and last name will do), not just A Broken Hearted and Angry Mom.

  • I managed to get in several comments on the mother’s post, before comments were closed. I was quite dismissive of the mother’s story because she was blaming anybody but herself as to what went wrong. Tough love is not love in these particular circumstances and shows no understanding of the pain the person is going through. I’m glad that her son was found, but where was he located? In a homeless shelter. He chose a homeless shelter probably because he knew he wasn’t welcome at home. I sincerely hope this mother learns about what it means to “work together” as they go down the road to recovery. Yet, a lot of NAMI members, mothers in particular, are scared to death of being “blamed” in any way for their child’s problems. That’s why NAMI got started in the first place. Mothers were sick and tired of being caste as refrigerator mothers. We have since suffered the consequences of their refusal to even go down the road of self-examination in order to develop a more nurturing environment. I know enough of these types of mothers from their blogs, and they are almost uniformly hostile to recovery programs, like Practice Recovery, that teach empathy, non-judgment, and healing oneself, too. These mothers insistently and erroneously believe that the agenda of these kinds of courses is to part the “loved one” from their medication. Bob is quite correct when he writes that we as a society have failed the young man because of refusal to provide programs and information about supporting the person through medication reduction, but the larger picture includes teaching families to lovingly support their family member. This mother hasn’t a clue. If she is truly interesting in helping her son, let’s hope she puts pride aside and stops blaming her son and others. It’s a losing game.

  • I admit, I always start laughing when I hear people refer to their “loved ones.” Like, are they funeral directors? Paris Williams urged people here at MIA to join the NAMI LinkedIn discussions in order to present a more critical view of the biochemical model, etc. There are lots of MIA people who have taken up his challenge, including me. And, there is no content control so people can post all kinds of articles. There’s the usual fluff and biochemical beliefs, but there is quite a lot of coverage of the important issues, and lots of discussion is generated.

  • Whatever personal opinion one may hold of NAMI and Pete Earley, there is a lot to cheer about re NAMI’s shifting focus. (See quote from Pete Earley below). Why not put our money where our collective mouths are and make a positive statement by responding to Robert Whitaker’s plea for MIA funding. Shocking that the site has raised so little money for a site that has such a loyal following. There are 228,148 unique visitors to this site. How about $1 from each one to make a positive contribution to change? (Put $1, a pound note, etc. into an envelope and mail it!) Why waste precious time and drain our energies constantly trashing an organization like NAMI (and people within it who are struggling to come to grips with the new reality) when there are family based recovery networks and educational programs like Mother Bear, Family Outreach & Response, and Practice Recovery that are not tied to the pharmaceutical industry. I dug out this quote from the Pete Earley blog that Kathy references.

    Pete Earley: For me, this shift away from Dr. Torrey’s views and the welcoming of Robert Whitaker as a NAMI speaker reflects how NAMI’s membership — or at least its board of directors – has moved away from its traditional parental based roots. I would not be surprised if NAMI soon drops its long-standing support of Assisted Outpatient Treatment. Whether you consider this shift a good or bad thing clearly depends on your individual views about such issues as AOT, medication, involuntary treatment, Dr. Torrey and Whitaker. The point of this blog is simply this: NAMI’s views are shifting.

  • John, thanks for spotting that the link no longer works. The sentence I found objectionable is where the reporter (who fawns over Glenn Close), describes Jessie Close in the most unattractive terms. Dependent (“sitting close to her sister”), physically unattractive(dog haired clothing), and in need of a support dog.

    “I didn’t put two and two together as far as mental health,” said Jessie Close, sitting close to her sister on a couch in an Ottawa hotel room, her black top flecked with hair from her tiny dog that accompanies her on speaking engagements.”

  • Julie,
    Are you aware of the Mehta/Farina study on stigma? I wish there were more of these studies that replicate its findings. One is not enough. The ingeniously designed experiment found that stigma is increased if people think you have a mental illness caused by a biochemical imbalance as opposed to a mental illness resulting from understandable events in a person’s life.

    Mehta, S. , & Farina, A. (1997). Is being sick really better? Effect of the disease view of mental disorder on stigma. Journal of Social and Clinical Psychology, 16(4), 405-419.

    I found a real life example that I discussed in my blog,a media interview with Glenn Close and Jessica Close re their anti-stigma campaign, in which I felt the interviewer singled out Jessica Close (the labelled one) for harsher treatment. http://holisticschizophrenia.blogspot.ch/2012/06/can-you-spot-stigma-in-this-interview.html
    Thanks for your thoughtful critique.

  • I think the answer as to why attitudes towards people with schizophrenia have worsened lies partly here: “Although the public has become more inclined to endorse a biological causation of schizophrenia, the opposite trend was observed with the other two disorders.”

    Accepting a biological explanation of mental distress increases discriminination, as the Mehta/Farina Auburn University study revealed. But, of course, mental illneses are also accepted as biochemical imbalances, so why should schizophrenia be singled out?

  • I’m a recent “graduate” of the online course. I wish it had been around ten years ago when our family fell into the trap of psychiatric labelling and trusting the doctors to sort it all out. A heartfelt thanks to Mother Bear and practicerecovery for this wonderful course.

    Francesca – it was interesting to me that some of the family members (usually mothers) in the course had adhered to the biochemical model, but willingly took the course because their sons or daughters were still a source of great concern after many years. To my recollection, the topic of the pros or cons of medications was never brought up, either by the moderator or by the participants. And, yes it is true that some people need to heal from their families, but can still benefit from the healing wisdom that the course teaches. Just a point of clarification re peole healing FROM their families: In the course I took, everybody was there on their own, not enrolled with another family member. We learned how to better understand what we or our relative was going through, we learned about grief and letting go, boundary issues, etc. We can then take these skills and understanding and practice them on ourselves and share them with other family members if we choose to do so.

  • Hi, Duane,
    I think most of us are here because we don’t blindly trust NAMI, or even trust it much at all. We know what NAMI has been doing, thanks to many of us who take every opportunity to point out its obvious conflict of interest with the pharmaceutical industry. The tide is turning, and we need all the support we can get for keeping the spotlight turned on the abuses of the mental health system. I see that happening within NAMI now. Unfortunately, I can no longer see your comment that I am replying to, so, I’ll stop here. (Just to add, however, that it was Saul who was blinded by the light and fell off his horse. He then became Paul.)
    Cheers,
    Rossa

  • Hi, Duane,
    I share much of your view of NAMI, but let’s be willing to applaud changes, no matter how small or how long overdue they appear. To use a Biblical reference, let’s look at Saul, the oppressor of many, having a conversion experience on the road to Damascus. He changed. NAMI can, too. I suspect that change won’t be long in coming. There is too much damaging information out there about pharma and the efficacy of medications in recovery. Sure, it’s good to keep up the heat on the organization, but also good to keep the doors open.
    Best,
    Rossa

  • Matt,
    Well said. Anger, like many other emotions in life, has its place, but it depletes us of our needed strength for recovery and prevents us from building emotional bridges to others.
    …Rossa

  • Hi, Stephen,
    I have no doubt that your experience of being given the party line when attending NAMI activities is typical of what one encounters in “organized” NAMI events. I can only speculate, because I’ve never attended any, but I started to participate in the NAMI LinkIn discussion group after Paris Williams urged MIA readers to do so in a recent post. I have to say, the discussion group has a wide variety of opinions and nothing is sacred. What I do notice is that it is NAMI trainers who are the ones who give NAMI its deserved reputation for promoting meds to the exclusion of just about anything else, but the organization is too large to prevent others from thinking for themselves. There are people like us there, and there should be more people like us there. Nobody is approving my comments, like they do at other sites, and they are published right away. Of course, I keep my comments civil, which is key in any discussion group. One of the most lively discussion of late was started by a Norwegian psychologist, called Informed Consent, Will Anyone Take the Meds? Paris William’s point, which is my point in joining, is to eventually insinuate our thinking into the minds of many. We can’t accomplish this unless we engage.
    Best regards,
    Rossa

  • Vivek,
    It’s good to hear psychiatrists admitting that they know nothing about how to help someone withdraw from psych meds. That being said, you may be doing a huge disservice to your patients if you warn them about the dangers of alternative medicine, without speaking highly enough of the benefits. Patients will be scared away from meaningful help and may not venture out simply because the doctor was either negative or unenthusiastic. It’s not either/or. You can still responsibly embrace the alternatives while continuing with the meds reduction. It is up to people to do their own research when it comes to supplements and therapies and decide for themselves what works for them. (If there was big corporate money to be made in the alternatives, we’d get research.) People should have the brains, if they also own their own soul, to be discerning. From personal experience dragging my son through all kinds of supplements (well-researched), and through common alternative stuff to the truly weird, I can say that all of these only moved him further along in his healing process. When my son’s psychiatrist found out about his out of body experiences induced through sound therapy (almost no research exists on this one, but I did my homework), she freaked out and ordered us to stop. We chose to ignore her, which is a frightening prospect when you go against psychiatry’s “orders.” When another psychiatrist noticed the niacin flush on his face and ordered him to stop the niacin, he simply took it at night before bed. I fear that psychiatrists, no matter how well-meaning, want to control the patient, rather than let them truly be the captains of their own soul.

  • Wonderful post, and you bring out a very important, but overlooked healing strategy – Madness should not be taken too seriously. How I wish doctors had cracked a smile or made a few jokes when my son was first hospitalized. Oh, no, instead, madness is VERY SERIOUS business indeed, and that attitude strikes horror in the hearts of patients and relatives alike. I bet my son would have taken a shorter time to get back on his feet if we all hadn’t been encouraged to be so damn serious about THE PROBLEM. You are absolutely right about the self-appointed stigma busters: “But the establishment usually doesn’t stop to notice that when they only look at the negative side of madness, they end up “awfulizing it,” and they amplify the fear of madness, which in turn increases distress and psychological problems.”

  • In an odd and desperate move, Leiberman plays the stigma card.
    “Throughout my career I’ve been acutely sensitive to the stigma associated with mental illness, the disparities that we’ve suffered in mental health care, and the lack of respect toward psychiatrists about their specialty,” Lieberman said. Now, I suppose there might have been a time when psychiatry wasn’t as scientifically-based as it should have been, but that was then and now is now, and for such attitudes and practices to persist in the Twenty-first Century is nothing short of discriminatory and prejudicial.”

  • Every good protest movement needs a song. The tune doesn’t have to be original. I’ve already identified two rhyming acronyms in your post. NRA and APA. Now, if one of the more talented folk songwriters (attention NDG) in this protest movement could just fill in the rest. Tom Lehr wrote the satirical “We are the Folksong Army” back in the sixties, which picked up on the idea that protest movements have songs to sing. A good start for the APA protest in San Francisco might be to modify the Initials song from Hair.

    LBJ took the IRT
    Down to 4th Street USA
    When he got there
    What did he see?
    The youth of America on LSD

  • In response to your question, “is it not possible that a combination of nutrients may have had far superior effects more broadly?” I can clearly say yes and cite personal experience.

    I wish I had known about the benefits of niacin and zinc in combo with vitamin C and B complex when my son was showing pellagra like symptoms around the age of sixteen. He had severe acne that was treated by a drug that later was taken off the market. He experienced hair loss, which could have been prevented, I believe, by niacin and zinc. A year or so after he stopped taking the medication, he began showing signs of psychosis. Dr. Abram Hoffer wrote that severe acne can be a sign of impending psychosis. In my own case, I have been taking the niacin combination (not including zinc) for several years. My skin and hair became very healthy, and I also found that the combination improved my focus and lessened my anxiety. Recently I stopped the treatment. This caused me to become nervous and my hair to thin alarmingly, so I resumed the vitamins and added zinc. The difference was immediately noticeable. My hair stopped falling out and became thick once again. I originally started taking the niacin combo because Dr. Hoffer speculated that it could also prevent dementia in the elderly.

  • It thought it telling that Thomas Insel does not even acknowledge the trauma informed side of mental illness. He and the NIMH are out of step with what patients are saying and have been saying for years. No matter. There’s biog research money involved. Jobs for the boys.

    “But patients and families should welcome this change as a first step towards “precision medicine,” the movement that has transformed cancer diagnosis and treatment. RDoC is nothing less than a plan to transform clinical practice by bringing a new generation of research to inform how we diagnose and treat mental disorders.”

  • Laura,
    You wrote: I believe the reasons for the announcements are very ominous and worrisome, as the NIMH is leading the United States down an even more reductionist, dehumanizing path of neuro-based Psychiatry.

    The path is called jobs for the boys (and girls) in neuroscience, government, pharmaceuticals, etc.

    Thomas Insel, the NIMH, Allen Frances, the Brain Project, are part of the psycho-industrial complex that keeps the economy running.

  • Thank you for pointing out the problem with the single nutrient approach. We are so used to hearing the results of studies that focus on single nutrients, with the predictable findings that say vitamin X “may be beneficial” for such and such a condition, that we lose sight of the larger picture – the wisdom of not placing all our eggs in one basket. Another variation on the single nutrient is quantity of nutrient,e.g. certain nutrients in large enough doses are effective for certain conditions, but the effect is negligible in the very small daily recommended dose. Dr. Abram Hoffer’s work on niacin bears this up.

  • Linda has clearly bought into her diagnosis, and so have most of the people who commented on the article. At what point does she plan to stop thinking of herself as “mentally ill?” If she still considers herself “mentally ill” after all those years of treatment, well, the treatment was a failure because it didn’t encourage her to get well on her own terms. I notice that she often refers to wanting to get back to her old self, but without the insight that perhaps the her old self wasn’t working. The crisis happened for a reason, and affords all who undergo one an opportunity to forge a new self. But, as Linda herself notes, psychiatry wasn’t interested in walking her through herself.

    Many of my favorite quotes about building the self come from Hermann Hesse:”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.”

    Marian Goldstein once wrote “People labelled with “psychosis”/”sz” usually don’t reconstruct, but construct, as there is nothing to reconstruct. People labelled with “depression”, “bipolar”, “anxiety”, etc. reconstruct.”

  • Expanding on my message below, on reflection, at the beginning of the crisis, most parents have been scared silly by the medical profession, and are too inexperienced in these matters that they tend to take what the doctor says at face value. Eventually, some may embrace a more empathetic understanding once they realize that most doctors haven’t a clue about how to treat psychosis.

  • Thanks, Marian. I read these things in a rush and don’t have a lot of time to decipher abbreviations or else I miss the obvious (DD).
    I hope you are managing to contain yourself (LOL) when up against parents who are determined to keep their “loved ones” labelled. Fear is what it’s all, and that can’t be love. I see this with other mommy bloggers (not all of them, but some of them) who just don’t trust their relative to not screw up again, and again, and again. Some strike me as authoritarians who don’t like being questioned, others worship the god of science and haven’t a clue about human relationships.

  • Deron,

    You write: We can better encourage parents who are currently screaming for more access to the status quo – to be angry that the status quo is not good enough and needs to do better than just prescribing drugs.

    I totally agree, but there are two kinds of parents in this world, and unfortunately, the ones who want to wallow in grief seemed to have gained the attention of the legislators. If they stopped grief mongering and feeling sorry for themselves (as if this is all about them), they might even begin to enjoy their relatives and feel enriched by the experience.

  • Sera,

    So many take-aways from your post, e.g. Just when was it decided (and by whom) that what you get to call ‘life,’ I have to call ‘recovery’?”

    and

    They didn’t see themselves as ‘in recovery.’ They hadn’t necessarily left a forwarding address.

    I’m going to rexamine my blog name, and eventually bring the curtain down on the “recovery” part of it. It’s time for my relative to just get on with life and disappear into the crowd.

    Thanks!
    …Rossa

  • Laura,
    Excellent post. I urged my 29 year old son to read it, to know that there are others his age who have been through what he’s been through. These kinds of stories (including Matt Samet’s most recent) are inspirational. How did you get your family members to buy into the idea of your going off medications? I see this whole area as fraught with difficulties. Perhaps you have been more explicit elsewhere in the answer threads to this post, so I may have missed it. Since you were living at home while going off meds, chances are your behavior/reactions/withdrawal would have been very disturbing to those around you. Relatives get panic stricken and usually want the person back on drugs toute suite. So, how did you finesse this with them?
    Best regards,
    Ross

  • The Human Brain Project link in your post isn’t working, but here’s a grandiose quote from the Blue Brain Project, which is one of the two projects I believe that was funded by the European Union.

    “Analogous in scope to the Genome Project, the Blue Brain will provide a huge leap in our understanding of brain function and dysfunction and help us explore solutions to intractable problems in mental health and neurological disease.”

    As if.

  • Hi, Matthew,
    Payment system glitch.
    Since I hardly buy newspapers anymore and I try to read my magazines in waiting rooms, I am delighted to make a yearly contribution to keeping MIA afloat. There’s just one problem, though, and that’s the drop-down box. It doesn’t work for foreign countries. I sent you a more detailed e-mail that shows the message that I received. Will try again in a day or so to see if the problem’s fixed.
    …Rossa

  • I appreciate the homework you’ve been doing, Sandra. The issue is serious and complex, because in the absence of Open Dialogue, most of us have fallen into a medication trap that we can’t seem to get out of. I feel quite sick about this if I allow myself to dwell on it. However, burnout on the part of family members is a real problem when the task of caring for a person sliding into psychosis is too big. I tried to tough it out with my son for a period of six months after he got off his meds and started sliding again. He upped his visits with his psychiatrist, he got lots of TLC on the part of the family, etc. but without a place to put him to give us a break, it was almost inevitable that he went back to the hospital, and therefore back on drugs. The early psychosis program that he attended for two years was a problem, putting aside the issue of the medication, because the staff had a negative, fatalistic view of psychosis, which of course, spread to patients and family alike. This is my long winded way of saying that yes, you can have additional support in terms of therapy, but the challenge is HUGE when the person begins to destabilize. Had the problem been approached early a la Open Dialogue, things probably would have been different. The damage inflicted by the disease model goes well beyond just the drugs. I know you understand that, too.

  • I like the way you hit the nail on the head about stigma by noticing that the sister was written on (superb!)and talked about without having her own say. It may simply be her being in the shadow of her celebrity sister, who is fawned over by the media, but it also may be very tied to when somone knows you have a mental health label, you will be treated differently. In my blog a while ago I linked to an interview with Glenn and Jesse Close in the Ottawa Citizen. It was a fawning interview with Glenn, really, who did most of the talking. Jesse, who presumably can do her own talking if encouraged, got stigmatized in a most unflattering way (see below), as if she was feebled minded, not capable of dressing herself and needs a support dog to accomplish simple tasks. For some strange reason, that interview is no longer available online. It is truly dopey logic to think that going around with tee-shirts that say, in effect, “I’m with Stupid,” is going to stop people discriminating against you.

    “I didn’t put two and two together as far as mental health,” said Jessie Close, sitting close to her sister on a couch in an Ottawa hotel room, her black top flecked with hair from her tiny dog that accompanies her on speaking engagements.”