Category Archives: Schizophrenia

The Absolute Discharge for Vince Li was wrong

By Dr David Laing Dawson

Vince Li has been treated now, for his schizophrenia, for 8 years. He has been living in the community and attending classes. The Review Board has given him an “absolute discharge”. He is, we are told, recovered, insightful, remorseful, and willing to take his medication regularly. Thus he is not a threat and qualified for absolute discharge.

He may well remain healthy and compliant with his medication for the rest of his life.

Perhaps the odds are slight that he will stop his medication and become ill again.

But, here are two realities about psychotic illnesses, schizophrenia in particular:It is hard to catch a relapse.

  1. When a patient stops his medication he will feel fine for a while. And when the relapse begins the first thing to become impaired is insight. One can monitor mood, but not one’s own cognitive processes. So very few people with schizophrenia who stop medication and feel good for a while, are then able to detect, on their own, the early signs of cognitive changes. As the illness worsens the prospect of insight lessens. It is the nature of schizophrenia. It affects thinking.
  2. When relapses of psychotic illnesses occur, the original delusion returns, if not exactly word for word, almost word for word. Thus if the original delusion was relatively harmless, in a relapse the patient’s returning delusion will be relatively harmless. “They are listening to my thoughts from the TV so I don’t ever turn it on.” “It is happening again.” But if the original delusion was dangerous: “I must kill to rid the world of the devil”, then when the relapse occurs the person in question will once again become dangerous.

Thus, even if the possibility of a relapse of illness for Mr. Li is small, such a relapse would be far more dangerous than for most people with this illness.

And if this occurs, if Mr. Li relapses and hurts or kills someone else, the cost will be much wider than Mr. Li and his victim. “Let’s talk about it” will certainly not be enough to reduce stigma then.

Such an occurrence will undermine the compassion and civility of the “not criminally responsible” finding.

The average citizen has trouble buying this defense now, for various reasons, especially when the crime is horrifying. If Mr. Li relapses and commits a crime, the community outcry will be very strong. A relapse and repeat by Mr. Li could thus do great harm to all mentally ill in Canada.

This could have been remedied simply: a discharge (though not absolute) that continued a lifetime of monitoring compliance with treatment. Not overly intrusive or restrictive. Simply making sure that Mr. Li continues his treatment, that he continue to take his pills every day or his injections every two weeks.

If Mr. Li stops taking his anti-psychotic medication, one year or ten years from now, the illness will relapse. And the delusions of this illness always return in the same form.

The “Logic” of Anti-Psychiatry

by Marvin Ross

Our last couple of blogs have generated considerable criticism from the anti-psychiatry folks on Facebook. Not unexpected, of course, and I do enjoy (to a point) debating with them. I know that nothing that I or others say will sway them but it is important to expose them. If left unchallenged, they may influence some who are not as well educated in the realities of serious mental illness. And, for far too long, those shrill and hostile voices have made politicians cautious to implement reforms.

My blog on belief systems and anti-psychiatry I modified slightly and redid on Huffington Post. They gave the headline as Anti-Psychiatry Folks Cannot Ignore That Medication Saves Lives A much better head than mine.

One comment this received on Facebook included this:

How many people have you treated, Marvin, that your blogging is somehow more accurate than Robert Whitaker’s journalism? He spoke with psychiatrists and other mental health professionals too, many of which (sic) prescribe medications and are involved in Mad in America.

My reply:

Neither Mr Whitaker nor I have treated anyone as neither of us are doctors. I’m a simple medical journalist like he is but I also have a family member with schizophrenia so I have first hand experience into what the disease is like when it is not treated and the difference that properly prescribed medication makes. I too have talked to many psychiatrists.

The reply

Having a family member who is diagnosed with schizophrenia is not first-hand experience. It is second-hand perception, at best, depending on how much one is trusted. The person with the diagnosis is the only person with first-hand experience…not doctors, not family members.

Now I do agree that those of us who have never experienced a disease do not know exactly what it is like. But that does not mean that medical specialists do not know how best to treat based on the currently available research and the guidelines established by experts in the field. That goes for psychiatric diseases, cancer and all other diseases humans contract. And Robert Whitaker is not in step with mainstream medicine given how many have criticized him.

I don’t know all the people involved in Mad in America but I do know one – Dr Bonnie Kaplan. She is a psychologist at the University of Calgary and the leading “researcher” on The Truehope product called EM Power +. She gives a continuing education course on Mad in America on Nutrition and Mental Health where the value of EM Power + (EMP) is talked about.

To one person who posted in the discussion to her program, Dr Kaplan had this to say:

I do not see why people should not take one of the mineral/vitamin supplements that emanate from the two Alberta companies, but I cannot figure out the context for your question. If you want to discuss offline, my email is kaplan@XXXX. The appropriateness and the dose of these formulas can vary with the individual.

The two companies are Truehope and the offshoot Hardy Nutritional which was formed when the two founding partners – Tony Stephan and David Hardy – dissolved their partnership.

In 2002, Dr Kaplan’s research trial on EMP at the University of Calgary was shut down by Health Canada because it failed to meet the proper standards for a clinical trial.

The blog Neurocritic entitled one of its articles as EMPowered to Kill as one man with schizophrenia went off his meds to take EMP and brutally killed his father in a psychotic state. I have written on this case as well in Huffington Post. Health Canada has declared the product a health hazard on two occasions. I have written critical article about this in various publications and an e-book with Dr Terry Polevoy and a former Health Canada investigator and now private detective in Calgary, Ron Reinold, called Pig Pills.

The vice-president of Truehope is David Stephan who made headlines around the globe when he and his wife were convicted in the death of their toddler from untreated meningitis by a jury in Lethbridge Alberta. Both had worked as well at the Truehope call centre advising customers on their treatment. You can listen to some calls that were made to the call centre here

Dr Kaplan gives lectures where she tells the audience not to google her name (slide 3). She even went so far as to bring professional misconduct charges against Dr Terry Polevoy with the College of Physicians and Surgeons of Ontario because he criticized her work.

She is one of the people involved with Mr Whitaker on Mad in America.

Dr Dawson’s last blog on anti- depressants and benzodiazapines also received a great deal of criticism. A favourite is:

Yeah, I like to get all of my information about psych drugs, withdrawal, discontinuation, and side effects from someone’s hypothetical idea of what it should look like without their having any clue at all what actually happens when people stop or start psych drugs.

And

who wrote this drivel? – It’s not even remotely accurate

I suggested to this last person that they look at the byline to see who wrote it and then look at his bio which is on the blog. I also suggested that they state what specific statement he made that they considered wrong and to provide me with evidence from research to back it up. Nothing. And Dr Dawson has worked in psychiatric hospitals in three Canadian provinces, in the UK, was chief of psychiatry in one and has been treating patients for close to 50 years.

When I suggested to someone that prescription drugs are monitored by regulatory bodies and removed from the market if their are problems, I was met with disbelief that anything is monitored. After I posted the link to the 35 drugs removed from the market by the FDA, there was no comment. Some are psychiatric drugs and two were drugs that I took for arthritis that I had no problem with and were very effective. No comment.

And no one commented when I posted this video of the author of My Schizophrenic Life.

Belief Systems, Mad in America and Anti-Psychiatry

By Marvin Ross

I keep reading comments from people wondering how anyone could possibly support Donald J Trump. Fact checking his statements demonstrates how wrong he is on much of what he says. And then there are the numerous comparisons of statements that he makes that contradict each other.

Not so surprising, sadly enough, when we look at the people who believe what Robert Whitaker and the anti-psychiatry movement believe.

Put simply, Whitaker and the Mad in America anti-psychiatry folks are adamant that anti-psychotic medication for schizophrenia makes people sick and shortens their lives. Research fails to support these contentions but they persist and the data is ignored. The two latest studies provide overwhelming evidence that anti-psychotics help – but more on that in a moment.

The late Dr William M. Glazer of Yale writing in Psychiatric Times four years ago had this to say of Whitaker:

Should we accept the analysis of a journalist who (1) to my knowledge, has not treated a patient or implemented a study and (2) reaches conclusions that run counter to well-established practice guidelines? Whitaker’s ideological viewpoint, which is implied throughout the book, is that our guidelines are inaccurate and driven by industry and our own need for income—that we are dishonest brokers. Beauty is in the eye of the beholder.

Criticisms of Whitaker have been done by many eminent psychiatrists but my favourite is by blogger Natasha Tracy in Healthyplace.com. Natasha explained why she refused to even read his book with these words:

Sure, he cites studies, he just contraindicates what the study actually proves. And nothing ticks me off more than this because people believe him just because there is a linked study – no one ever bothers to check that the study says whatever Whitaker says it does.

Except, of course, the people who do – the doctors. You know, the people who went to medical school for over a decade. You know, the people actually qualified to understand what all the fancy numbers mean. You know, those people.

And I, for one, rely a lot on what doctors make of medical data and they are the ones most able to refute Whitaker’s claims.

As for the contention by Whitaker and his minions that anti-psychotics make people sick, let’s look at two recent studies.

In 2013, the highly respected British Medical Journal, The Lancet, published a German meta-analysis on the efficacy and side effect profile of all anti-psychotics. The results are summarized simply in a blog by Dr Gerhard Gründer with a link to the original study.

The meta-analysis combined 212 studies with a total of 43,049 patients. All of the anti-psychotics produced improvements that were statistically better than placebo. The best agent was clozapine.

The most recent study was conducted in the Province of Quebec and published in July and was based on real world evaluations of all people prescribed with anti-psychotics for schizophrenia between January 1998 and December 2005. The cohort consisted of 18 869 patients. Outcome measures consisted of mental health event (suicide, hospitalization or emergency visit for mental disorders) and physical health event (death other than suicide, hospitalization or emergency visit for physical disorders).

The researchers pointed out that data from randomized control trials are often limited in terms of generalizability thus real world studies like this one are much more realistic. What they found was that taking anti-psychotics reduced the risk of having either a mental or a physical problem compared to those who discontinued taking them. The only anti-psychotic that performed poorly was quetiapine (seroquel) while clozapine had the best results.

The other criticism from the anti-psychiatry bunch is that taking anti-psychotics results in premature death for people with schizophrenia. Studies have shown that people with schizophrenia do die years earlier than others but the reasons are not well understood.  One hypothesis that I mention in my book Schizophrenia Medicine’s Mystery Society’s Shame is discrimination by health care practitioners. Studies show that people with schizophrenia often do not get adequate basic medical care and treatment.

Researchers in Sweden conducted a real world analysis of 21,492 patients with schizophrenia. Subjects were followed up from 2006 through 2010. Data on drug use and outcomes was obtained from national registers.

What was found was that Antipsychotics and antidepressants were associated with a significant reduction in mortality compared with no use. The opposite of what the anti-psychiatry crowd claim. However, there was a clear dose-response curve for benzodiazepine exposure and mortality. More benzos, greater mortality. Note that benzodiazepine drugs are not anti-psychotic medications. They provide short term relief from anxiety, but they are addictive when used over a long period. Which means with long term use people develop tolerance and then crave more. And if they stop them they experience serious withdrawal symptoms. They are never prescribed alone to treat psychosis.

Psychotropic medications prescribed properly to those who need it, are beneficial despite what you may hear from some journalists and a vocal minority.

 

Psychiatry, Eugenics and Mad in America Scare Tactics – Part II

By Dr David Laing Dawson

I am not shocked that we passed through a phase in our evolving civilization when we seriously considered Eugenics. Until we understood a little about genes and inherited traits, every serious abnormality must have been considered an accident or an act of God, perhaps a punishment for some immoral thought or deed. Certainly a stigma and something for a family to hide, if it could. And, at the time, the tribe or village would feel no collective responsibility to look after the impaired child, the disabled adult. This infant and child would be a burden on the family alone until she died, usually very young.

But coinciding with a time our tribes, our villages, our city-states, and then our countries developed a social conscience, a new social contract, and accepted the collective burden to care for these disabled members, we began to learn of their genetic origins. It would be entirely logical to then consider the possibility of prevention.

When medicine discovers a good thing, it always takes it too far, and then pulls back. When men and institutions have power we always, or some of us at least, abuse it, until we put in some safeguards. And there is always at least one psychopathic charismatic leader lurking nearby willing to bend both science and pseudo science to his own purposes.

But we have, here in the western world, passed through those phases (and hope to not repeat them). Now every year we find genetics is more complicated, that there are more factors involved. And every year we pinpoint at least one more detectable genetic arrangement (combinations, additions, deletions, modifiers, absences) that cause specific and serious abnormalities.

But here is where we are now medically and socially in the Western World: We can test the parents’ genetic makeup, we can test the amniotic fluid, if indicated we can test the fetal cells, we can offer parents a choice to abort or not; we can tell them of projected difficulties, available treatment or lack thereof, likely outcome, and possible future improvements in treatment and cure. We have also socially evolved sufficiently (and are rich enough) for the state to assume some, or, if necessary, all of the burden of care.

That is where we are, notwithstanding the difficulties of providing this care, and the antiabortion crowd: Some genetic certainties, some intrauterine tests, some blood tests for carriers, some absolute and some statistical predictions, and parental choice.

Now we come to genetics and mental illness. We have no certainties; we have some statistics; we have no intrauterine tests, no blood tests, and we have parental choice.

For science to not continue to pursue a genetic line of inquiry for serious mental illness would be a travesty.

Nature/Nurture. I think I entered psychiatry at the height of this academic debate. On one hand the psychoanalysts dominated US psychiatry, while biological psychiatry (Kraepelian psychiatry) dominated British psychiatry. (R.D. Laing was an outlier). Meanwhile psychology figured if you could train a dog to salivate at a bell you could train any kid to do anything. At the same time many poets, essayists, and not a few Marxist sociologists were telling us that the insane were not insane. It was the world around them that was insane. From Biological Determinism to parental cause to the Tabula Rasa and back to Social Determinism.

Other psychiatrists worked hard to find a way of including all possible factors: the bio/psycho/social model. (Which I would like to see redefined as the bio/socio/psychological model, for it is clear to me that our behaviors are driven first by our biology, secondly by our social nature, by social imperatives, and thirdly by our actual psychology, our cognitive processes. (Just watch Donald Trump)

How much of our nature is determined genetically, or epigenetically in the womb, and how much by our experiences as infants and children and teens and adults? When it comes to human behavior it is clearly all of the above, to different degrees and proportions.

The studies show that the risk of developing schizophrenia is 50% if your identical twin has schizophrenia, whether raised together or apart. This was often touted to show that 50% of the causative factors for schizophrenia must be environmental. But we now know that identical twins are not really genetically identical. And the interplay of genes, genome, brain development and environment is time sensitive. (Despite her fluent English my wife still stumbles on some English sounds. They were just not the sounds her brain was hearing at age 3.)

On the other hand identical twins reared apart are later found to have developed surprisingly similar traits, speech patterns, skills, and interests. And on every visit with my daughter in Australia she complains about the knees I bequeathed her.

As I mentioned before, genetics gets more complicated the more we are able to study it. Some DNA sequences seem to predict a mental illness in adolescence or adulthood but not the exact one.

Of course that finding may reflect not so much on environmental influences as on the vagaries of our definitions, our current diagnostic system.

An old colleague once remarked that our criteria for the diagnosis of schizophrenia are at the stage of the diagnosis of Dropsy in about 1880. I think he exaggerated. They are closer today to a diagnosis of Pneumonia in 1940. (Note that we can now distinguish a pneumonia that is bacterial caused, from viral, or autoimmune, or inhalational, and which bacteria, but our antibiotics help only one form of pneumonia, and each of these forms of pneumonia may have one of numerous underlying problems (biological and social) causing the vulnerability to developing pneumonia.)

For mental illness the development of drugs (1960’s on) that actually work much of the time threw a monkey wrench into this ongoing debate and inquiry. It tipped the balance to biological thinking for many of us. But it is a logical fallacy to assume a treatment that works reveals the original cause. The treatment is disrupting the chain of pathogenesis at some point but not necessarily at the origin of the chain.

We will continue to argue nature/nurture, and science will continue to investigate. And doctors will continue to treat with the best tools they have available.

If Dr. Berezin is correct (which he is not) and serious mental illnesses like schizophrenia, manic depressive illness, autism, and debilitating depression, OCD, and anxiety are all caused by “trauma”, much hope is lost and we will not find good treatments and cures for centuries. For today, despite what Donald Trump and Fox News tell us, in our childhoods in Europe and North America we experience far less trauma, strife, deprivation and loss than every generation before us. Yet mental illness persists in surprisingly persistent numbers.

Dr. Berezin is taking a leaf from the Donald J Trump book. He is trying to frighten you with images of violence, abuse, regression, lawlessness for his own purposes. He is waving Eugenics and Hitler at you in much the same way Donald conjures images of rapists, criminals, illegals, and terrorists streaming across the American border.

But lets get real:

Serious mental illness (schizophrenia, manic depressive illness, debilitating anxiety and OCD, true medical, clinical depression) are little helped with non-pharmacological treatments alone. The reason we do not see today, mute and stuporous men and women lying in hospital beds refusing to eat and wasting away is because we have the pharmacological means (and ECT) to treat depression. The reason we do not have four Queen Victorias and six Christs residing in every hospital is because we now have drugs that control Psychotic Illness. The reason we don’t see thin elated starving naked men standing on hills screaming at the moon until they die of exhaustion is because we now  have drugs that control mania. The reason we don’t have as many eccentrics living in squalor collecting their own finger nail clippings and urine is because we now have very effective pharmacology to treat serious OCD.

All of these people also need social help and someone in their corner, but without the actual pharmacological treatment it will get us nowhere.

(Though, I must admit, today, you may be able to see untreated catatonia, untreated stuporous and agitated depression, untreated mania and untreated schizophrenia in some of our correctional facilities).

But lets look at the less serious mental problems as well for a minute. A patient tells me she is afraid of flying, and always avoided it. But her father is dying in another province and she needs to fly there to see him one last time. She is terrified of getting on that plane. She imagines having a panic attack and disrupting the flight.

A fear of flying. A phobia of flying. Those of us who have such a phobia can usually manage by avoiding travel by plane.

But my patient. She needs to make this trip. Now perhaps I should send her to a trauma therapist who might uncover the fact a school friend was lost over Lockerbie and have her grieve about this, and still be afraid of flying; or perhaps to a cognitive behavioural therapist who might try to convince her that her fears are unfounded, pointing out how air travel is safer than car travel; or perhaps a desensitization approach in which the counselor uses relaxation techniques and has her imagine being at the airport, boarding the plane, and perhaps accompanying her to the airport on the day of travel; or perhaps I should find out if the fear is based on sitting so close to 300 strangers for 5 hours, or riding in a 20 ton contraption at the speed of sound two miles in the air; or spending 5 hours locked in a cigar shaped coffin with 300 strangers…..

Or I might simply prescribe for her five dollars worth of Lorazepam and offer a few encouraging words to get her through the trip.

Then lets look at something in between, like ADHD, one of the diagnoses mentioned by Dr. Berezin.

It is not a difficult equation for me. The child can’t sit still in class, he is too easily distracted, lacks focus, can’t concentrate, always being reprimanded by the teacher, socially ostracized because he intrudes, he pokes, he speaks out of turn, he angers too easily.

To become a successful adult he needs to succeed in at least one thing, if not more than one thing, in his childhood. If, with accommodation at school, and some parental strategies, some adaptational strategies, such as being allowed to wear earphones and take an exercise break every 20 minutes, have one-on-one instruction, good diet, better sleep – if these work, then he may not need medication.

If they don’t work it means he will fail socially and academically and maybe at home as well. He will be in trouble all the time. He will become surly, or give up, or become more aggressive, or depressed. In his teens he will self-medicate.

If the difference between a child failing or succeeding socially and academically is a single pill taken with breakfast it would be, to use that word again, a travesty to not prescribe that pill. And that is true whether the ultimate or necessary causative factor is inherited or acquired, or some complex combination of biological vulnerability, epigenetics, infantile and toddler experience, parenting styles, pedagogic methods, diet, and video game addiction.

 

 

Psychiatry, Eugenics and Mad In America Scare Tactics – Part I

By Marvin Ross

Much of what I read on the Robert Whitaker website, Mad in America, stretches logic but this newest blog has to be one of the biggest stretches I’ve seen. Dr Robert Berezin, a US psychiatrist, warns that psychiatry is moving closer and closer to eugenics.

As defined by dictionary.com “eugenics is a word that made everyone at the event uncomfortable. … The very subject evokes dark visions of forced sterilization and the eugenics horrors of the early 20th century. … The study of hereditary improvement of the human race by controlled selective breeding.”

The most famous proponent of eugenics was Adolph Hitler who wanted a pure Aryan race but the subject has been advocated by many in recent history in an attempt to eradicate debilitating diseases. In fact, one could say that the reason for amniocentesis is to do just that. Sampling of the amniotic fluid of pregnant women can predict such things as Down’s Syndrome. And some parents will opt for abortion if Down’s is found but many do not.

Amniocentesis can also predict such genetic conditions as Tay Sachs Disease where the infant usually only lasts to about age 4. But, nowhere in the article by Dr Berezin does he actually show that modern psychiatry is planning to eliminate anyone who suffers from schizophrenia or any other psychiatric disorder.

What he talks about is the fact that genetics is being employed to try to understand these conditions better. He states that:

The accepted (and dangerous) belief is that psychiatry deals with brain diseases – inherited brain diseases. We are back to absolute genetic determinism. Today’s extremely bad science is employed to validate not only the idea that schizophrenia and manic-depression are genetic brain diseases, but that depression, anxiety, phobias, psychopathy, and alcoholism are caused by bad genes

I have no idea why he considers the genetic research to be bad science other than he does not agree with it. So what if he doesn’t. He does state that “The temperamental digestion of trauma into our personalities is the source of psychiatric conditions.” But, as Dr David Laing Dawson has written on this blog:

Childhood deprivation and childhood trauma, severe and real trauma, can lead to a lifetime of struggle, failure, depression, dysthymia, emotional pain, addictions, alcoholism, fear, emotional dysregulation, failed relationships, an increase in suicide risk, and sometimes a purpose, a mission in life to help others. But not a persistent psychotic illness. On the other hand teenagers developing schizophrenia apart from a protective family are vulnerable, vulnerable to predators and bullies. So we often find a small association between schizophrenia and trauma, but not a causative relationship.

Dr Berezin’s concern does not come from anything that anyone has said about aborting fetuses that genetic testing proves will be born with schizophrenia or bipolar disorder or any serious psychiatric condition. And the reason for that is that genetics and the understanding of the causes of these diseases is nowhere near a point that this can be demonstrated with 100% accuracy. Science is a long way from getting to that point if it ever is able to.

Suggesting that these research avenues will lead to abortion, eugenics or something similar is absurd and nothing but scare tactics perpetrated by someone who does not agree with the causation theories being investigated. If these avenues lead nowhere and it is discovered that science has been on the wrong path, then science will self correct. Attempting to generate unfounded fear is counterproductive.

Next Part II by Dr David Laing Dawson

The Sisters of Perpetual Determination

By Katherine Flannery Dering From her Blog Word From the Trenches

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Sunday after Sunday, year after year, our Mother drove the one hour ride from our home in White Plains to the Wingdale Psychiatric facility to visit my brother Paul and to prod the staff to take good care of him. Paul, the eighth child of our family of ten children, suffered his first psychotic break at 16 and for the next thirty two years, despite all treatment attempts, he never had more than a few moments of sanity. As our father sunk into a deeper and deeper depression, unwilling to face what had happened to his young pride and joy, Mother just gritted her teeth and did what had to be done. Dad died. Paul got sicker. But sun or snow, rainy or blustery day, Mother drove the two hour round trip and gave Paul his one day per week of almost normalcy. Picnics for sunny summer days, diner or pizza shop on bad days, an occasional excursion to a pool or bowling alley. Mother could recite every gas station, burger joint, antique shop, hardware store, exit, entrance, diner, motel, bank, putting range or ski equipment shop along the 50 mile route.

When Paul was 34, Mother died, very suddenly, of a burst aortic aneurism, and the ten of us “kids” were in shock. We stumbled through funeral preparations, copying what Mother had done for Dad. She had sung in the church choir for years, and her pals did a great job singing at her funeral mass. During the priest’s homily, he spoke repeatedly about what a determined mother she was in not only raising her ten children but also for ensuring that her mentally ill son was properly cared for. After Mother’s burial, the choir and at least 80 other friends and family members gathered at Mother’s house for a funeral luncheon.

At some point that afternoon, four or five of my sisters and I went for a walk around her neighborhood to escape the crowd of mourners who, fueled in part by a large quantity of bourbon and wine, had progressed from munching on catered chicken parmesan and crudités to singing show tunes around her baby grand piano. It was a beautiful, sunny fall day.  A short way down the block, realtors were holding an open house. Since we would have to sell Mother’s house, we decided to check it out. Recalling how the priest at Mother’s Mass had gone on and on about what a determined woman she was, we signed in as a group of nuns looking for a new home and called ourselves the Sisters of Perpetual Determination. It became our family joke. The next year, after I’d settled Mother’s will and distributed everyone’s share, my siblings gave me a plaque inscribed “To the executrix extraordinaire, with thanks, from The Sisters of Perpetual Determination.”

As the months and years went by after Mother’s death, we siblings took up the mantle of trying to look after our brother.  However, this was the age of the deinstitutionalization movement, and despite the lack of a suitable half-way facility to care for him, we were unable to prevent his release from the psychiatric facility. Without constant supervision and tweaking of his medications, he went steadily downhill. His schizophrenia was severe and persistent. He was unable to make it through the maze of “freedoms” he was given, and he cycled in and out of hospitals and group homes. We had always hoped we could keep him safe until some new treatment was discovered that would bring him back to us. But poor diet, constant smoking and general aimlessness caught up with him. Despite our efforts, he died six years ago at the age of 48.  We miss him still.

Current laws, meant to protect people from unjust confinement, now condemn many people with serious mental illness to a shadow life of delusions, confusion, and homelessness, horrible group homes and/or early death. Despite promising advancement in early intervention and new cognitive treatments, many with schizophrenia never really recover.  The care of a family member in this age of almost no long term mental health care puts a tremendous burden on people trying to keep their loved ones off the streets and out of jail.  In consideration of all these caregivers do, my sisters and brothers and I have decided to share our sisterhood name with all the other families of people suffering with serious mental illness.

To the Mothers, Fathers, Sisters and Brothers of Perpetual Determination, we salute you.  We have pledged our support for legislation like HR2646 and vow to fight for improved care for our loved ones.

picture:  to r back row: Pat, Charlotte, Sheila, Paul, Ilene; front row: John, Katherine, Julia, Grace, Monica.

For more information on HR2646 and a letter you can copy and paste and send to your representatives go to www.shotinthehead.com and click on the advocacy page.

To learn more about schizophrenia and what is needed to improve our mental health system go to http://www.paulslegacyproject.org

To order my book, please go to Amazon.com

Family Day, Serious Mental Illness and Murder

By Marvin Ross

I’m posting this on Family Day in Ontario. This is a new statutory holiday promised by former Premier Dalton McGuinty during the election campaign of 2007. It was, of course, part of his platform so that he could win re-election by giving people an extra day off between New Year and Easter and sold as an opportunity for people to celebrate family.

Unfortunately, families with serious mental illness in them lost out when the recommendations of an all party Select Committee on Mental Illness and Addictions Report of 2010 was largely ignored by that government. There is little for many of these families in Ontario to celebrate as you will see from my Huffinton Post blog that follows. It was published on February 9 and I will update it at the end.

Was Ontario Complicit in a Father’s Murder?

Last Spring, I mentioned the problems that a Richmond Hill, Ontario family was having with acquiring adequate service for their son with schizophrenia in one of my Huffington Post blogs. That was one of the many blogs I write on the pathetic state of care that we have for the treatment of those with serious mental illness.

Sadly, the father in this case, Bob Veltheer, was murdered on Sunday evening February 7 and, the next day, his son Jacob was arrested. Bob and his wife talked to me before I wrote the blog wanting to reveal just how badly people with serious mental illness are treated by the health system but decided to remain silent other than what I reported then.

Before I outline what I know of the care their son received, I should mention that Bob was the founding member and president of Home on the Hill, an agency set up to try to get housing for the mentally ill when their families could no longer keep them at home. I had been invited to speak at their monthly meetings a few times as had my blogging partner in another blog we share, Dr David Laing Dawson.

Last year, Jacob, who suffers from schizophrenia, was found sitting on a bus at the end of the line in Newmarket, Ontario presumably having failed to get off when it passed through Richmond Hill. He was suicidal, so the police were called and he was taken to South Lake Hospital. After a week and still suicidal, according to the family, he was discharged against the wishes of his family and that is what I reported.

Upon discharge, he ran off, as do many people with schizophrenia, and the York Regional Police went looking for him. He was found after three days and returned home only to disappear again. This time, when he was found, he was admitted to MacKenzie Health in Richmond Hill. After a brief stay, he was discharged with a community treatment order to a residence. A community treatment order is a legally binding order that the individual must accept regular medical help and medication. If they fail to abide by this, they can be returned to hospital by police.

Jacob, it seems, was too sick for the residence to cope with (but not sick enough to be in hospital) and was evicted from the residence. What should the parents do but what all parents do and that was to take him home. Just recently, the team that supervised his orders (the South Lake Assertive Community Treatment team), wanted him discharged to the care of the family doctor. His mother had just made contact with a local Richmond Hill psychiatrist and was waiting to hear back to see whether that doctor would see him.

Friday night, Bob had a meeting with a member of Home on the Hill executive at his house and I was told that Jacob was so distraught that he was pacing about the house talking to himself (or his voices or demons) in a loud voice. That Sunday night, the police allege that Jacob murdered his father.

This horrific tragedy could probably have been prevented had Jacob been kept in hospital long enough to stabilize him properly and, if that was not possible, to give him a secure place where he could live. The number of psychiatric beds in Ontario has been declining considerably over the past few decades but the total extent is not available since statistics on that can’t be found. And I’ve tried. The most recent Ontario report released in December of 2015 called Taking Stock found that access to services varies across the province and is inconsistent.

Late last year, the brand new psychiatric hospital in Hamilton closed a ward because of budgetary problems although that hospital has 6 vice presidents, 31 directors, a medical director earning $500K a year and a CEO making $750K a year. And, as I wrote a year ago, Ontario has had 17 reports on the sad state of mental health care between 1983 and 2011 but little has been done.

This is not the first preventable death, nor will it be the last unless we finally start to care. In my book on schizophrenia, I describe a case where a family in Mississauga, Ontario desperately tried to get help for their son. They could not and he ended up killing both his parents. I met the son a couple of years ago and found him to be a very pleasant and sane individual. But that was after years in a forensic psychiatric hospital where he has been getting treatment. Imagine if his family were able to get that when they first tried.

I am not Emil Zola nor was Bob Veltheer, but I accuse the complacency of the Ontario government for his death. Government bureaucrats have been informed repeatedly both verbally and in writing about the need for accountability, program evaluation, transparency regarding mis-spending, mis-use of privacy legislation and the historical resistance to partner and collaborate with families. The Central Local Health Integration Network where Bob resided, I’m told, had recently been notified about the profound need for hospital beds by Home on the Hill.

Home on the HIll has been attempting to meet with the new Health Minister, Jane Philpott, whose constituency is near Richmond Hill but have not heard back yet.

I would like to see either a Coroner’s Inquest or a Royal Commission into the circumstances that led up to this horrific event. And I would like to see Ontario finally do something other than commission studies which they then ignore.

Update

This blog received a great deal of attention as it was distributed widely and to a number of politicians where the Veltheer family live. I attended the funeral on February 13 along with politicians from the all three levels of government. The local town councillor who is a supporter of the work of Home on the Hill plans to bring this to the attention of the Ontario Minister of Health as is the local representative in the Ontario legislature. The representative who sits in the Canadian House of Commons is planning to raise this event in the House of Commons and a meeting has been arranged with the Federal Minister of Health.

We all hope that Bob’s death and the pain that his family is going through will result in some positive changes. Ontario which has direct responsibility for providing health care needs to get off its duff, stop generating reports which they ignore, and start providing the services that have been recommended so many times by so many reports.

The Federal government needs to take the money they are wasting on a Mental Health Commission that has no direct authority and does nothing but generate its own reports and put it to providing funding programs in the provinces. And just maybe, Prime Minister Justin Trudeau whose mother, Margaret suffers with bipolar disorder, will understand and do something.

Doing something would be a welcome change and would honour the memory of Bob and all the others who have been sacrificed by our lack of resources.

Reply to I am Too Smart to Have Schizophrenia

By Dr David Laing Dawson

I was in my early 30’s when I first met Robert. He was just twenty but had already been hospitalized three times. He had schizophrenia. He became my patient for the next 10 years, and indirectly my patient for 25 years after that. He did well with reasonable doses of anti-psychotic medication, monitored and adjusted over the years, though his paranoia, his ‘ideas of reference’ and his anxiety would resurface in socially stressful moments.

I saw him through group programs into employment, steady employment with good sick benefits and a pension at the end. He kept this job throughout his working life though several times he came close to losing it when his symptoms surfaced at work.

And I saw him through his first dating experience, then engagement and marriage. Their honeymoon ended abruptly when he became paranoid at the luggage carousel upon landing at their destination. They flew back, we talked, I adjusted his medication, the marriage lasted. His new wife came to me for genetic counseling and I told them what we knew. They agreed to have no children, she worked as a primary school teacher, and with two incomes and later an inheritance they did well financially. He always had more savings in the bank than I had.

At the end of those ten years I worked out of town for five years and I did not see him but I knew he regularly attended a nurse at the clinic I left. Over the next 10 years I was psychiatrist-in-chief at the mental hospital where he had once been a patient. His medications were now being looked after by his family doctor but he came to see me occasionally to talk something over.

After those 10 years as medical director of the hospital I left to work clinically part-time and devote the other half of my time to artistic pursuits. This included being co-owner of an art gallery with my wife. Robert started coming to every art opening. He would find me, often tending bar, and fill me in on his struggles and successes, his medication, his work. He wrote poetry he shared with me, and he began to write a book about his life, his illness, his hospitalizations. He was conflicted about this; his wife wanted him to keep it as a private journal but he wanted to share his story to help others. By this time both his father and mother had died but his life with this wife was solid. He gave me copies of each chapter and asked for my advice.

Neither of us were young anymore. I was now in my sixties, Robert in his fifties.

Then one Sunday afternoon at the gallery I received a phone call from Robert. My wife answered and told me it was Robert but “he doesn’t sound right”.

On the phone Robert said he needed to see me. He needed to talk something over. He didn’t have schizophrenia after all. The police really are watching and following him. And for the same thing as years before. The same crime. It was all real. Not a delusion at all. A major mistake had been made. He did not have schizophrenia. Out of character he also suggested we sit down over a beer to discuss this. We talked some more and I learned that his family doctor, after seeing Robert symptom free and well for the past many years had taken him off his Olanzapine. It was not an entirely unreasonable clinical decision for he had put on more weight than is healthy. But the same delusion returned. The same guilt, fear, and belief that the police were after him for once owning, hiding, and then throwing away, a small pile of pornographic magazines that had so troubled him in his late teens.

I asked him how I could help. He asked if I knew the police chief. I assured him I did. He asked if maybe I could influence the Chief, to get his men to stop harassing him. I told him I would certainly do that. I would get the Chief to call off his men. But in return I wanted him to go back on his Olanzapine and come in to see me the next Saturday morning. He promised he would.

When Saturday came he had been back on his medication for 5 days. He looked a little sheepish. He asked if I had spoken with the Chief. I told him I hadn’t gotten around to it. He said, “Thank goodness.”

—————

It cannot be that often that a psychiatrist has the privilege of observing the course of a psychotic illness over 35 years, especially that of a patient who remains symptom free for many of those years. But I write this story as counterpoint to the courageous blog by Erin Hawkes.

A delusion is a delusion. It is not a moment of misunderstanding; it is not a passing thought; it is not an odd experience that we check out with others (“Did you hear that?” “I’d like to see what you think of an idea I have.”); it is not an ‘issue’; it is not an idea or even a conviction up for debate; it is not assailable by either reason or evidence, and it is certainly not a spiritual experience preceding moral growth. And Erin, despite her training in and knowledge of science, and neuroscience at that, when ill is ill, when delusional is delusional, and when in that state she, like all the people who suffer from that illness that I know, seeks evidence to prove the belief, the delusional idea, the hallucinatory experience, and disprove the diagnosis, no matter the illogic of the quest.

And, away from treatment, off treatment, five or thirty-five years later, the delusion that returns is the same.

This latter phenomenon I have always found fascinating. Why the same delusion? Ultimately, I think, this is further prove of the illness being a brain problem. For surely if it were the mind, the open-source software, changing, growing, adapting with every input over those many years of life-experience, a delusion would refresh itself, would become more topical, more age specific. But it doesn’t. Which makes it, to me, more of a hardware problem, an illness for which the only effective treatment is medication. Offered of course within a family inclusive humane care system.

I Thought I Was Too Smart for Schizophrenia

By Erin Emiru (nee Hawkes)

I have schizophrenia, they tell me. They line up my symptoms and thrust the diagnosis in my face. So here are your pills.

When I stop taking those medications I lose my grip on reality, but I don’t know this. They – my psychiatrist, a Security guard, the police – bring me to the hospital (again) and I am told (again) that I have schizophrenia.

No, I don’t. People with schizophrenia don’t have a Master’s degree in Neuroscience. I’m simply too intelligent to have schizophrenia, right?

Then why do rats eat my brain, why do Voices yell at me, and why am I being stalked by a homicidal man with a sniper gun (I’ve got proof)? I assume it is normal. I don’t have any friends and I have withdrawn from my family so no one but Them (doctors, nurses – everyone in league with the Enemy) diagnose me, treat me. So here are your pills.

I remember my first antipsychotic. I was in the psychiatric hospital after a failed suicide attempt and, after drawing me out, my psychiatrist decided to start me on risperidone. She did not tell me what it would do. Soon, my Voices were quieter, quieter, quieter. Rats stopped chewing and the sniper stopped tracking me. Wow, I thought. Those were symptoms? That was schizophrenia? The scientist in me knew it wasn’t a simple placebo effect, since I had had no idea what those little pills were going to do. I became open to the idea that I might have schizophrenia.

Yet repeatedly, over the next half-dozen years, I would leave the hospital quietly, only to be forcibly returned after “decompensation due to medical noncompliance.” That is, I fell into the oh so common trap of thinking: “I am doing well. I don’t need these pills any more. I’m cured.” Round and round the revolving door.

You would think that after all of this, I would surely realize that I had schizophrenia. I didn’t, though. I was under the heavy spell of anosognosia: the physiological inability to recognize that one has an illness. It is common, and strong, in schizophrenia. But in me, equally strong was a scientist. So, experiment number one: recall that first antipsychotic? Well, it did strange things, things I was not expecting.

My second hypothesis: maybe I was just in it for the attention. When psychotic and certified in the hospital, I would bash my head against the concrete wall until both it and I were bloody; that bled the brain-eating rats out. It also earned me restraints, physical and chemical, which I raged against. I screamed and kicked and cried but the strong Security guards tying me up and the nurses with injections (rat-laden!) for me always won. That was attention, I reasoned. So I decided to do it. Bang head, fight restraints, scream over injections… it was a good show, but it felt foreign. I was an actor, not a true patient, that time, making me realize that all the other times had actually felt real.

Then there were the Voices that harassed me continually. They yelled at me to kill myself, forbade me to buy even a coffee, and hissed at me if I dared talk to anyone. When these receded with medication, I later – when everything schizophrenic seemed out of focus – I attempted a third experiment: I tried to create Voices. I thought really hard but to no avail. All I could generate was the “little voice in my head” that everyone experiences from time to time.

Finally, convinced I was too smart to have schizophrenia (an idea of mine echoed by an arrogant psychiatrist), I fought to keep an A+ average at university. I earned prestigious scholarships (two NSERCs, a Michael Smith scholarship, and various others). That’s not something someone with schizophrenia does, right? No; there are other people with schizophrenia who attain graduate-level education. It is very hard, but it can be done, particularly when the person is stable on medication.

So a neuroscientist with schizophrenia. I tried so hard to prove I was immune to schizophrenia, but because of my experiments, I am convinced. It was a relief of sorts: an explanation, a treatment, a hope. It came to prove not that I didn’t have the disorder, but that I can live beyond it. For me, medication is key; taking it reliably, the master key. And I become a person with schizophrenia who is well.

This blog first appeared in Huffington Post on March 17, 2013. Erin Hawkes (now Erin Emiru) is the author of When Quietness Came: A Neuroscientist’s Personal Journey With Schizophrenia published by Bridgeross and available in print and e-book format.

Journalists, Medical Research and Medical Practice

By Marvin Ross and Dr David Laing Dawson

As a medical writer and as someone who works in the daily trenches of serious mental illness in my own family, I find people like Robert Whitaker dangerous. For those who aren’t familiar with him, he is a medical journalist from Boston who is highly critical of the long term use of medication for schizophrenia even though he is neither a scientific researcher nor clinician.

My earlier criticisms of his work appeared in the Huffington Post as Journalists are not medical experts and Leave the schizophrenia diagnosis to the experts please.

One of Whitaker’s key criticisms is that the long term use of antipsychotics in the treatment of schizophrenia makes people worse not better. A group of researchers in New York set out to see if they could replicate what they called his “troubling interpretation” and published their results in a recent issue of the American Journal of Orthopsychiatry.

Their hypothesis was what Whitaker contended that the long term use of antipsychotics resulted in worse outcomes than people who are not treated. They wondered if a systematic appraisal of all the literature would produce the same results as claimed by Whitaker. They looked at 18 studies which included the four that Whitaker used. They pointed out that Whitaker used an additional 6 studies to come to his conclusion but they did not include them because they were review articles that did not report separated data on the exposure groups or were ecological studies which did not report on individual level data.

Of the 18 studies they looked at, only 3 supported the hypothesis that long term treatment with medication causes harm to patients. 8 studies found the opposite and 7 were mixed. These researchers, however, also did not find that long term treatment resulted in greater benefits than harm which is, frankly, not surprising. Some recent studies show that some people with schizophrenia can manage well without long term drug use which Whitaker likes to cite. But there is also no way to predict who can actually achieve that. That is a caveat in all those studies and a fact that Whitaker seems to ignore. (see my post on leave the diagnosis to experts).

Lumping all people with schizophrenia together for a study is bound to have problems since schizophrenia is very likely more than one disease. When Bleuler first coined the term schizophrenia in 1908, he called it the schizophrenias to indicate that it was more like a spectrum than a single entity. Unfortunately, science has not reached the point where the different forms can be identified. An editorial in the January 1, 2016 issue of the American Journal of Psychiatry makes that very point. Current treatment algorithms, it says, do not take into account the substantial interindividual variability in response to antipsychotic drugs.

And, a recent study of first episode patients published in the Journal of Clinical Psychiatry found a greater relapse for those who went off medication after they were stabilized. Decisions to try to reduce doses and to go off are best left to the individual patients working with their psychiatrist. Going off or staying on medication is described by my blogging colleague Dr Dawson who has close to 50 years clinical experience treating patients in a variety of situations. Here is what he has to say:

We doctors over treat at times and under treat at other times. And occasionally we get it just right.

Studies show that family doctors are much more likely to under treat than over treat (pain, depression, arthritis), with specialists erring in the other direction. This is as one would expect, for specialists receive their patients after a family doctor has deemed the case too complex, too resistant to a first line of treatment, or simply beyond her zone of knowledge, skill and comfort.

I have been guilty of both under treating and over treating, probably more often the former. These are type 1 and type 2 errors. If we work to totally eliminate one type of error we will increase the incidence of the other.

We need to be vigilant catching both types of error and correct or ask for help, without letting our egos get in the way.

My patient tells me she is feeling much better now that she has stopped taking those pills I prescribed for her. And at that moment I must allow my feeling of relief and pleasure seeing her look and sound better over-ride this small insult to my ego. Unless I know for sure this is a relapsing illness that will re-emerge within a few weeks, perhaps worse than before.

I also know that it may take a relapse or two or three before we are both sure it is better to suffer the minor discomforts caused by these pharmaceutical agents than the blackness of severe depression, the torture of obsessions, the horrors of psychosis, or the social destruction of mania.

It is really a very small percentage of people who have suffered these severe illnesses who would willingly give up the medication that treats and prevents them. I am usually the one to suggest it may be time for a cautious reduction.

And those that quit them and return to a state of depression, obsession, psychosis, or mania do so for a variety of reasons. Occasionally the side effects were much too severe, or the drug was not helping much. The financial cost too much to bear. The very fact of needing these medications to keep sane can be, for some, an intolerable thought. A manic may remember the ecstasy and not the night in a jail cell, for which he can blame others. Another may find that the drugs he can buy on the street give him, at least temporarily, total relief. Still another may quit simply because there is no one near to remind him, to support him, occasionally to insist. And then a few who prefer to believe their true nature consists of special powers, a supreme intelligence, a grand future, clear reason to be, to be loved by a movie star, to be a hero, to have a unique relationship with God, to have a clear and present or distant antagonist – who prefer to live with this sense of self no matter the earthly consequences – which can always be explained away – than to accept the earth-bound but often meager existence provided by faithfully taking one’s medication.

But most people, when sane, prefer to remain sane, even if it means a dry mouth, a little dizziness upon arising too quickly, blood tests more frequently, a harder time keeping weight under control.

As one patient recently said to me: “Thank God for these big pharmaceutical companies.”

To which I responded, “Not everyone would share that sentiment.”

And he then said, “Why not? Without them you and I would be having this conversation in the asylum.”