Musings from a mother

Dr. Amy Bishop, accused of killing three professors at the University of Alabama and wounding two others, was never charged when she accidentally killed her 17 year old brother in 1986. It appears that her act was just swept under the carpet, no doubt by her family. The question I would like to see answered is whether her parents insisted on psychiatric intervention for her at the time. I suspect not, because Dr. Bishop went on to rack up a number of years of further academic study in a relatively short time. Getting her head in order would have come at the expense of academic achievement. Therapy would also have revealed a possible motivation in her brother’s death, therefore ruling out therapy as an option for parents anxious to put it behind them.

Redeeming herself by being academically and profesionallly successful at her brother’s expense, as her unpublished but seemingly autobiographical novel is reputed to imply, is misguided altruism in the extreme.

Home Sweet Home

Reading Ron Unger’s post on the successes of the Family Care Foundation in Sweden has reinforced to me the value of staying the course with Chris, not getting stressed/worried/demanding, he will continue to be fine. The Family Care Foundation uses surrogate families and little meds. The families attend training sessions and receive group therapy and individual therapy and professional supervision. It sounds terrific, but begs the question as to why a surrogate family and not the genetically related family?

While it is generally acknowledged that a supportive family is a good predictor of recovery, it is also true that close family members, particularly the parents, are also the people most negatively impacted, i.e. feel that they have the “most to lose” if things don’t go well. This makes them in some ways not the best people to smoothly handle their child’s crisis. Looking at this another way, am I going to lose any sleep if my neighbor’s relative is not making his milestones, sleeping in and depressed or psychotic? Probably not. But I do care if it is my child and this concern will spill over, and in trying to be helpful, I may be creating further stress.

Another question that popped into my head on reading about the Family Care Foundation in Sweden, is how come it always seems to work in Sweden? I could use some therapy myself but I am not too keen on having strangers supervise me, having had to deal with psychiatrists for far too long who have turned Chris’s breakdown of spirit into prolongued medical meddling. North Americans have this view of Europe as much more sensible and humane when it comes to these matters, but is the reality really as good as they say it is? I live in a country with an illustrious past in psychiatry. The program that my son spent two years in was, in my humble opinion, no different than what you get in North America or other industrialized nations. It was all about the meds. The program was touted as being innovative (it has social workers and occupational therapists), but the reality was far from it.

Apart from the fact you are turning a personal family crisis over to management by others, the Family Care Foundation looks like a model worth emulating. Again, why just Sweden?

Watch this one take off

Thanks to Gianna Kali for alerting me to this article in the Psychiatric Times: Opening Pandora’s Box: The 19 Worst Suggestions For DSM5. Dr. Allen Frances was the chair of the DSM-IV Task Force and is professor emeritus at Duke University School, Durham, NC. An excerpt from Dr. France’s article appears below.

The road to hell is paved with good intentions. Since when is a risk a syndrome? When the DSM says so, apparently. Watch Psychosis Risk Syndrome take off. What could be more humane, after all, than preventing young people (and their families) from (in theory) the avoidable pain of mental illness? The reason I am raising my own alarm here is that early intervention programs appear to pay no heed to mental illness as a deep-rooted coping mechanism that is a response to a trauma in the particular individual’s family background. Mental illness comes from somewhere, and you need look no further than than your own family to begin to understand that the problem is psycho-spiritual not biochemical in origin.

Sure, early intervention programs have staffs of psychiatrists, social workers, psychologists, etc. Their presence lulls people into believing that the psychospiritual and personal origin of mental illness is being paid attention to, and it is not. Resolving schizophrenia, for example, often takes some very intense therapies that don’t exist in these programs. If there is any early intervention program where Transactional Analysis, Family Constellation Therapy, Direct Confrontation Therapy, etc. are the mainstays, please let me know. Let me know, too, if there is a program that incorporates energy medicine into its daily routine. People are duped into believing that the mere presence of staff psychiatrists and other professionals is sufficient focus on the problems of the individual, whereas in reality they are there to deal with the effects of the medication while treating all individuals alike.

Dr. Frances writes
The Psychosis Risk Syndrome is certainly the most worrisome of all the suggestions made for DSM5. The false positive rate would be alarming―70% to 75% in the most careful studies and likely to be much higher once the diagnosis is official, in general use, and becomes a target for drug companies. Hundreds of thousands of teenagers and young adults (especially, it turns out, those on Medicaid) would receive the unnecessary prescription of atypical antipsychotic drugs. There is no proof that the atypical antipsychotics prevent psychotic episodes, but they do most certainly cause large and rapid weight gains (see the recent FDA warning) and are associated with reduced life expectancy―to say nothing about their high cost, other side effects, and stigma.

This suggestion could lead to a public health catastrophe and no field trial could possibly justify its inclusion as an official diagnosis. The attempt at early identification and treatment of at risk individuals is well meaning, but dangerously premature. We must wait until there is a specific diagnostic test and a safe treatment.

Captives in our own land

I am breaking my own rules about lengthy posts because I want to highlight in bold all the areas in Marvin Ross’s Sept. 2009 presentation to the Ontario Legislature where I feel strongly that he perpetuates the very reasons why people are not recovering from schizophrenia fast enough and in large enough numbers. While it is obvious that he is well-intentioned, his view of schizophrenia contributes to society’s high Expressed Emotion surrounding schizophrenia. Fear is a terrible incentive when struggling to get well. It cripples you before you can even begin. Fear has a handmaiden named guilt.

I feel that my son lost a minimum of two good years because I paid attention to the fear-mongering that I highlight below. Fear is not a good basis for making public health policy. Mr. Ross has bought hook, line and sinker what the pharmaceutical companies are peddling. He is obviously a fan of Dr. E. Fuller Torrey, who introduced me to the term “anosognosia,” a laughable term were it not taken so seriously by so many, meaning an “inability to accept the fact that you are sick.” How sad!

Of course there are too many people who need help and are refusing it or not able to access it. However, forced treatment by ineffective yet powerful drugs is no treatment at all and is a human rights abuse. There are effective treatments and strategies out there, some of which I highlight in my blog, but they are individualistic. Public health policy goes for the low hanging apples and a one size fits all approach. We have seen how successful governments are with this approach (not very).

I’m a parent, too, who couldn’t agree less with Mr. Ross’s solutions. In fact, many of the areas highlighted below I found to be simply untrue in my son’s case. My son is not a unique case, by the way. But I clung to the fear that if he didn’t take drugs he would relapse, if he relapsed he would be less and less able to recover, and the more I clung to these ideas, the less likely it was that he would recover. Fear is a not a good motivator. If you want your relative to get well, please have the courage to take issue with the status quo. This is all about your relative getting well. People should pay more attention to how well their relative is faring, and stop trying to worry about and think for others. If you want a solution imposed by society on your relative, lobby for the cheap, one-size-fits-all ones.

The presentation in its entirety can be found here.

Excerpt:

My friend, Ian Chovil, who I have written about is a case in point. He spent over ten years living on the streets with undiagnosed schizophrenia, addicted to drugs and alcohol.

In 1985, he was living in his car in Toronto when he was arrested. The courts sentenced him to 3 years probation and required him to see a psychiatrist. This he did in Guelph. He improved sufficiently that he was able to eventually get a job at the Homewood, a world famous psychiatric facility in Guelph and set up and maintain a very good informative website on schizophrenia. He is now retired. His website is chovil.com

He commented to me that “it is only too self evident to me that I have permanent damage that I must live with because I was not treated in the first six months. It is something that I think about everyday, something that I have to re-accept every morning.”

The longer that schizophrenia goes untreated, the more brain damage there is. The more frequently one has severe relapses, the longer it takes to recover and that recovery is not back to the same state the person was in before the relapse.

One of the reasons for this state of affairs is that many in society still do not recognize psychiatric illnesses as real diseases. Look at the recent report from the Ontario Ministry of Health called “Every Door is the Right Door”. A commendable attempt to improve conditions but they talk about prevention.

If they truly recognized psychiatric illnesses as diseases, they would not talk about prevention. After all, how can you prevent something when you don’t know what causes it. We can prevent a lot of heart disease, skin cancer and type II diabetes through life style changes because research has uncovered some of the factors causing those diseases.

Medicine cannot prevent diseases like Alzheimer’s, MS or ALS because it does not know the cause. Similarly, medicine cannot prevent schizophrenia or bipolar or depression because no one knows what causes them. We have theories and ideas but as of now, we do not have any understanding that could lead to primary prevention. And secondary prevention is just what I talked about a few minutes ago: early diagnosis, early and adequate treatment, rehabilitation, and health maintenance.

Schizophrenia is a disease of the brain that just happens. It is not a “mental health issue” a term that is often used. We don’t talk about people with insulin dependent diabetes as people with pancreas issues. They have a disease. Schizophrenia is a disease that causes or is caused by significant changes in the brain. There are well documented structural abnormalities, neurological abnormalities, neuropsychological abnormalities, electrophysiological abnormalities, and cerebral metabolic abnormalities.

And these changes have even been documented in people who have never been treated although the opponents of drug treatment would argue that the changes are the result of prescribed medicines and nothing else.

Imaging studies of the brains of untreated people with schizophrenia have shown that there are significant differences when compared to the brains of matched healthy people. The effect of antipsychotic drug treatment on these sick patients results in their brains gradually starting to resemble the brains of the normal healthy controls.

The people you see pushing a shopping cart with all their worldly possessions in it while mumbling incoherently to themselves, or shouting rhetoric on the street corner, or living in a cardboard carton are sick. They deserve humane care, humane consideration, and treatment.

SO WHY AREN’T THEY?

A large part of the reason is that we allow them to make their own treatment decisions – something they do not have the capacity to do. Part of their illness is their inability to understand. This is a condition called anosognosia. They are so sick and delusional that they do not know they are sick and refuse treatment.

And our society thinks that is OK. Most opponents of compulsory treatment cite John Stuart Mill’s On Liberty. Mill said that “the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others.”

When Mill wrote that, there were very few medical treatments for anything, let alone psychiatric disorders.

But, Dr. Richard O’Reilly, a psychiatrist in London, Ont and the former president of the Ontario Psychiatric Association points out that Mill also said in the very next paragraph, “those who are still in a state to require being taken care of by others must be protected against their own actions as well as against personal injury”

We do that for the elderly with serious dementia and Alzheimer’s. We do not allow granny to refuse treatment for her dementia and to live in a refrigerator box outside so why do we do that for young people with schizophrenia? It is cruel and inhumane for any caring society such as ours to allow people who are sick to remain sick.

In fact, the most effective anti stigma strategy is not to try to educate the public but to provide treatment for those who need it. Tragedies like the Virginia Tech shooting or the Greyhound Bus beheading only fuel negative views about mental illness. Preventing these events by providing treatment for those who commit them or who are likely to commit them do much better.

Psychiatrist Dr. Sally Satel, said in the New York Times that “no matter how sympathetic the public may be, attitudes about people with mental illness will inevitably rest upon how much or how little their symptoms set them apart.”

In the western world, with growing affluence, increasing attention to civil liberties, in the 1970’s mental health laws changed. They were re-written to protect individual rights. I am told that the authors of Ontario’s mental health act did not expect the result that has become so obvious over the past twenty years.

They thought the mentally ill would still get good treatment but within that right to receive treatment, their other rights would be protected. At the time cynical psychiatrists often joked about the mentally ill now being allowed to die in back alleys with their rights intact. The laws created due process, caused a careful examination of forced treatment, but were ultimately based on a fantasy that those without insight into their illness could make sound treatment decisions..

And the result has been that many seriously mentally ill have lost their right to treatment.

In several European countries, the same countries that have excellent social welfare systems, excellent systems for the care of the mentally handicapped, and countries that are renowned for their approach to civil liberties, it has been recognized that we threw away the right to treatment when our laws over-emphasized the civil rights of the mentally ill. And in these countries the laws have been modified to correct this. And it is the attitudes, resources, rules, practices and laws of these countries that we should study and emulate.

In conclusion, I would like to pass on some comments from my family. My wife suggests that if our health system cannot do a better job of providing treatment for people with schizophrenia, then we (the families) should all be given free antidepressants.

My son works for a psychiatric rehabilitation program in Hamilton as a peer counsellor. Both he and the agency are in Ms Horvath’s constituency. The government has just cut off their funding. As a result, the clients will lose their support and the peer support workers, for whom this job helps with their self esteem and feelings of self worth, will be unemployed.

Thank you for your time today and, as promised, I will leave you with a copy of my book. Please don’t feel any pressure as there will be no test if you do read it. I am also leaving you with the DVD of the feature film Cutting For Stone which is going into general release in the US in October. The film was shot in Hamilton, Ontario, written by a psychiatrist and is one of the most realistic depictions of schizophrenia that you will find. The bonus scenes added to the DVD are very educational.

Something is changing

Chris rang me today from his mobile to say he had, on the spur of the moment, gone to a Giacometti exhibition. He sounded very much alive. There is something exciting going on with Chris that has been building slowly for months. It is in the way he engages with others, even in the way he watches television. His voice has suddenly taken on an enthusiasm and conveys a purpose. He occasionally expresses boredom, which is a hopeful sign.

Last night I was struck by the fact that he stayed up to watch a television show, alone. While this sounds mundane, for an observant mother it is anything but. He has approached pleasure in the past with a sense of duty or out of respect for someone else. Last night he was doing what he wanted to do, on his own terms.

This building up of the personality is a long, arduous process. There are times, like with a mental breakdown, when the personality, however fragile it was, seems to completely disappear under layers of apathy.

Doing well, but could be better

When we sit down to dinner as a family, Chris has very little to contribute to the conversation. Alex, his younger brother by two years, usually has a great deal to say about his new job or what’s happening in the world. Alex is living at home while he saves for graduate school. Chris’s two younger brothers are reaching the milestones that we think are important for young men in their twenties – higher education and jobs are the primary ones. Chris left university after a year and a bit, not able to continue due to psychosis.

Yet, when I came home from work yesterday, Chris and Alex were carrying on an animated conversation in the kitchen as Chris prepared the chicken risotto. They seemed to find a common ground. Chris had taken it upon himself to haul out the Bachelor’s Cookbook, pick up the missing ingredients at the store and get to work on producing an excellent meal. This was after going to his one university class in the afternoon.

Everyday Chris makes his bed so well that you could bounce a quarter off it and does any kitchen clean-up that didn’t get done the night before. He sees his psychiatrist twice a week. He sees an occupational therapist once every two weeks. He sings in the church choir on Sundays and practices Thursday nights. He has voice lessons Thursday afternoon. He helps out around the church, fixing things, moving things or stuffing envelopes. He volunteers from time to time at the local soup kitchen.

It is puzzling, because despite the fact he is able to do all this, he does not have paid employment neither is he at university full time. He reads a great deal of intellectually challenging material, which is a huge relief after a two or three years when he was able to read nothing.

I wonder sometimes if he is a victim of low expectations, not ours but theirs, meaning the psychiatrist and the occupational therapist. I fought against the low expectations that I sensed were at the heart of the day program Chris was in for two years. Ian and I pushed him to audit classes at the local university when it was clear that the psychiatrists thought that this was too much. I don’t think Chris would be as far as he is now if we had succumbed to low expectations in the beginning. But since Chris’s relapse a year ago, we have stopped reminding him that he should be back at university full time or doing something meaningful with his life. I believe that our over-eagerness to get him out of the nest caused him to relapse.

He relapsed after he had been slowly and carefully weaned off his two medications. So, he is back on medications, which some maintain make it impossible for him to work or go to class. That is exactly why I wanted him off the medications in the first place. I thought he would never be able to make it on his own if he stayed with them.

The other day Chris mentioned that somebody suggested to him that he do some volunteer work. What were they thinking? Surely this wasn’t the occupational therapist or the psychiatrist suggesting this. He is doing volunteer work, lots of it. It is paid work and a full-time occupation that is eluding him.

I am not as convinced as I once was that the medications are preventing him from doing things. I’m sure they do slow him down, but I don’t think that’s the whole picture of why he isn’t fully back on track.

It is hard to be patient. I hope patience isn’t perceived as low expectations.

Psychiatric home remedies

From The Master of Lucid Dreams, a psychiatrist’s introduction into the ancient shamanic practices of Uzbekistan.

There is only one experience in daily life that unites action and perception, past and present in the same way as lucid dreams do. It is the experience of orgasm. Its unity can be also used for healing the memory demons but it is not our way of practice.

The orgasm kind of healing cure doesn’t need a partner and can be done in the privacy of your own home. Some would say you don’t need a psychiatrist, you just need a good lay or a spare hand.

Dr. Wilhelm Reich constructed something he called an orgone energy accumulator in 1940. This was based on the work he had done with Freud’s theory that traumatic events block the natural flow of energy in the body, leading to neurosis and other illnesses. The orgone accumulator involves putative (non-measurable) energy (biofields or chi). Reich was found to be in violation of the United States Food, Drug and Cosmetics Act and ordered to destroy all the machines and references to these machines. In 1956 he was found guilty of violating interstate commerce laws and jailed. He died in jail the next year. Flat earth people of the world unite!

Today, you can order orgone accumulator building kits and have them shipped anywhere you like. I understand that they are used in hospital settings. They are slowly gaining acceptance in the world of complementary and alternative medicine. Authors William Burroughs and J.D. Salinger would sit for days in one (although presumably not together). The actor Orson Bean, of all people, wrote a book Me and the Orgone about his experience with orgone therapy. He claimed that orgone therapy fixed what ten years of psychoanalysis had been unable to achieve. Wiki call the book “a strongly personal account of a man who gets a second chance at a personal sexual revolution, feeling his body beginning to change, feeling freer and more alive, and also seeing his relationships transformed.”

So, it seems to me a rather simple way to get rid of the demons of trauma while embracing who you are is to get laid, masturbate, sit in an ozone machine and/or embrace your lucid dreams. These ideas are generated and being acted upon by consumers, not psychiatrists, who are finding their own solutions to mental and physical health.

Acne

Can psychosis be kick-started by taking certain prescription medications? We all know that recreational drug use can bring on psychosis, so why not prescription meds?

When Chris was about sixteen, he had severe acne. This, according to Dr. Abram Hoffer, is also a sign of pellagra (vitamin B deficiency). He noticed that many of his schizophrenic patients reported having severe acne as a teenager, therefore he concluded that vitamin B deficiency is associated with schizophrenia.

Not thinking much about it at the time, and on my friend’s suggestion, Chris started taking a certain acne drug. It cleared up his acne in no time, but it also was so strong that it caused the skin on his lips to literally flake off. After taking it for a couple of months, he stopped. About a year later (or was it only six months? I can’t exactly remember), he started showing early signs of psychosis.

Maybe there is no connection to taking the drug and his later psychosis. One can really never know for sure about this things. Many young men who aren’t taking medication begin to develop psychosis around the age of 18. Still, it is a powerful drug. So is angel dust, and marijuana, and cocaine and . . .

Where are you now Mark Vonnegut?

I don’t know where Mark Vonnegut stands on vitamins to treat psychosis these days. Maybe he has come full circle back to accepting them as important in his recovery. The last time I checked, the author of The Eden Express was firmly in the camp of schizophrenia as a brain disease. This was odd because in his book, he attributes his rather quick recovery from schizophrenia/bipolar in the early 1970s largely to his taking vitamins.

It is easy enough to link Mark Vonegut’s epic psychotic break to his habitual drug use. He majored in religious studies in college, so that’s a clue that there may have been a certain predisposition in his family background to spiritual ecstasy. Does it really matter what caused his psychosis? I believe that there is a quicker recovery from psychosis brought on by drug use. If you stop taking the drugs you stop adding fuel to the fire.

In one of the later editions to this book the author goes out of his way to say that he regrets giving so much credit to vitamins in his recovery (“and then the vitamins kicked in”).

So what happened? Why this about face? Mark Vonnegut later went on to medical school where my strong hunch is that he no doubt learned that his belief in vitamins couldn’t possibly have been the reason he recovered his sanity. To save face as a newly-minted medical doctor, he renounced the foolish idea of his youth that he got better on vitamins.

I wonder where he is today on this? That was then and this is now. A lot has changed in the world of medicine if you let the quantum light in.

The Eden Express is a wonderful book, because it accurately evokes the mood of the hippie culture of the 1960s early 1970s. It’s not very good on the hope front, if hope is what you’re looking for. To Mark Vonnegut, exactly who gets well is a crap shoot. He wrote the book when he was very young and I don’t think he had a real feel for what his diagnosis meant. Luckily he recovered from his first break quite quickly.

P.S. Before writing today’s post I should have checked the Net for recent updates on where Mark Vonnegut stands.

A holistic dilemma

This morning before going to work I knocked on Chris’s door while clutching a bottle of Omega 3 in my hands. I was pleased to reinforce to him the report published in the February issue of the Archives of General Psychiatry, that patients who took fish oil capsules had fewer symptoms of psychosis and better functioning than those who took a placebo.

“But, according to Olga Kharitidi in The Master of Lucid Dreams, I’m supposed to embrace my psychotic episodes,” he objected.

Does he not get the idea or do I not get the idea? I also gave him that book. I realize there is a contradiction here, a double message.