Monday, September 24, 2018

Comments by Rossa Forbes

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  • 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.”