Tuesday, October 17, 2017

Comments by Rossa Forbes

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  • 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.

  • 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

  • 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,

  • 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.

  • 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.

  • 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.”

  • 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,

  • 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.

  • 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.