Holistic Recovery from Schizophrenia

The final few frontiers

Chris has come a long, long way, in many areas of growth, except for one very fundamental one. His sense of self is lagging. Always has. As a baby, toddler, and adolescent, he would be what he thought anyone wanted him to be. He expressed no preferences of his own, just took the preferences of others. I sensed his not wanting to confront or struggle while he was in the womb. (A possible clue: He was born twenty seven days overdue!) In high school, it kind of went undercover. He had friends, activities, school work to focus on. Then, boom, going away to university caused his non-existent sense of self to come tumbling down. My regret is that I should have recognized this a problem that he wouldn’t grow out of without some help, rather than thinking that he would eventually find himself. It’s a huge challenge for him now.

Today is Ascension Day, a holiday in many European countries. Chris knocked on our bedroom door around 9 a.m. to announce that he was going to his piano lesson. “On a holiday?” I asked. Apparently.  Less than an hour later I heard the key in the front door and Chris was back. Why was I not surprised? “The trains are only running on the hour, instead of every half hour, ” said Chris. “So, why didn’t you call me and I would have come and picked you up and driven you there?” said I, knowing full well that Chris never asks for anything that he thinks might cause others even slight inconvenience, which is why he never asks. He used to be endlessly apologetic; if you stepped on his toes, he’d figure it was his fault, but thankfully, less so these days. On the one hand, this particular character trait often reveals a kind heart and generous spirit. The dark side of this trait is not setting your own boundaries.

I got exasperated. “Chris, why do you deliberately sabotage these things? You must have known that the holiday train and bus schedule is always slower, and yet you went through the motions of going to your piano lesson, something you profess to enjoy, seemingly ignoring the fact that you need to plan ahead for the changed schedule. Why are you doing this to yourself?”

Tangled in with all of this is Chris’s huge fear of failure and a perverse perfectionism, so an unwillingness to try too hard.

Chris and I sat down and we went over the pattern of behavior. Chris feels bad, knows it’s a problem, but can’t for the life of him figure out what to do about it. (Eight years of psychiatry and we’re only beginning to crack this one.) “Do you read self-help books?” I asked. “Yes,” he answered.

“Chris, you can begin by small things. (I’ve been giving him this advice for years now, but it hasn’t sunk in.) Start asking people for help. Reach out. You’ll get mainly yes’s, but you’ll also get no’s, so deal with it. And, when your father sees you and asks you how your piano lesson went, what are you going to say?”

“Great?” ventured Chris.

 “You’re learning, Chris.”

Chris has a pathological inability to lie. Telling the truth is admirable and the best policy in most situations, but white lies can be useful protective devices from going into conversations you don’t want to have.

Half an hour later Chris asked me if I would drive him later today to a rendez-vous outside of town.

“With pleasure.”

“Oh, I should have said please,” said Chris.

“Why don’t you temporarily abandon ‘please’ while you build up a better sense of self? I said.”Look at your brother.” I pointed to Alex, who had just groggily emerged from his room.”Huge sense of self, doesn’t do anything that doesn’t suit him. He can be a pain in the ass, but he at least he gets what he wants.”

We both laughed.

Eve Ensler on what made her sick

Eve Ensler is the brilliant author, playwright, feminist (the list goes on) who is best known for The Vagina Monologues, which she wrote and performed along with countless other well-known women. She is currently on a book tour to promote her memoir, In the Body of the World.  Eve is an incest survivor whose writing focuses on the female body, violence and sex, so it is ironic that much of her recent history is taken up with her struggle with uterine cancer.

from The Globe and Mail
“She has a theory about what may have made her sick: The sexual abuse she suffered as a child, as well as the countless stories of horror she has heard over the years, may have contributed. So she has made a decision: She’ll still listen to those stories as she signs books or meets people at fundraisers, but she is not seeking those stories out any more.

“I just can’t. I have to protect myself,” she says. “I feel like I spent 15 years absorbing the stories. And I’m committed. I signed up. I don’t need to be convinced any more.”

Wise woman. She listened to the messages her body was signalling. To survive, she stopped dwelling on things that make her sick. There’s a message here for anyone. Eve Ensler also contributed a terrific chapter to Goddess Shift: Women Leading for a Change. (See the book elsewhere on this page.)

From Wiki
“This is a ravishing book of revelation and healing, lashing truths and deep emotion, courage and perseverance, compassion and generosity. Warm, funny, furious, and astute, as well as poetic, passionate, and heroic, Ensler harnesses all that she lost and learned to articulate a galvanizing vision of the essence of life: “The only salvation is kindness.””
 

CAMH psychiatrist reviews Silver Linings Playbook (unmoved by its lighter side)

A word of explanation. The Centre for Addiction and Mental Health (CAMH) is the facility in Toronto where Chris began his ordeal as a psychiatric patient in 2003. The place where we began to lose all hope.

Here’s why. TVO’s Inside Agenda blog recently rounded up CAMH psychiatrist Dr. Stephen Sokolov to review the film Silver Linings Playbook. Sokolov is predictably a voice of doom and gloom when it comes to “mental illness.” Abandon all hope, ye who enter CAMH! Family members, included.

Although Dr. Sokolov wasn’t one of the psychiatrists who saw Chris, his attitude is typical of the ones who did. Doctors who, no doubt meant well, but who kept the discussion clinical, which is alienating for patients and families. Imagine dealing with Sokolov when your “loved one” has been admitted to CAMH for the first time. He’ll dash any faint hopes you might be harboring. If you are lucky, perhaps you will find the reserves within you to reject the psychiatrist’s self-serving view of mental illness as a “treatable” disease, but it’ll probably take years to undo the damage.

From Sokolov’s review:

“The next day, we see Solitano taking his medications. The markings on the pills are clearly visible on screen as lithium 150 mg and Seroquel™ 100 mg — both, I must say, at subtherapeutic dose.”

and

“This isn’t the first time we’ve seen light treatment in film of a tragic subject (the obnoxious “Life is Beautiful” comes to mind).”

and

“In my opinion, the result is a trivialization of these serious conditions and the damage they inflict on people’s families, careers and, for too many, their lives, especially for the not unsubstantial number who commit suicide. The implicit theme in “Silver Linings Playbook,” true to the romantic comedy format, is: “Take your medicine, and you’ll get the girl.” I can’t help feel in part that this disingenuous and simplistic message dishonours many of those people who I’ve seen struggle with this terrible but treatable disease.

Last day to register for interactive family recovery course

I have registered for this course even though I feel that in many ways, our family is on top of our situation with our son, Chris. (I hope Chris feels the same way, too.) But, I can’t presume that I know everything there is to know about recovery from major psychiatric conditions and that there is nothing left to learn. I had to cobble together my wisdom over many years without access to resources that offer a positive perspective of recovery.

If you or someone you know might be interested in learning about the family recovery perspective through a weekly online course, please encourage them to consider enrolling.

Recovering our Families
8 Weeks of Hope and Healing

Our fully facilitated, interactive online course supports individuals, families, and friends who are recovering from or working with mental health challenges, trauma or psychiatric diagnoses such as schizophrenia, major depression, bipolar, anxiety and other disorders.

May 8, 2013 – July 3, 2013
Register Now, Space is Limited

During our 8-week course, individuals, families and supporters will explore key recovery concepts including:

1. Sharing our experiences

2. Exploring recovery fundamentals

3. Understanding mental health

4. Harnessing the power of hope

5. Using a strengths-based approach

6. Building relationships amidst psychosis

7. Creating healthy boundaries

8. Celebrating recovery stories

Our classes are open to anyone working with emotional distress – individuals, families, friends and mental health care providers. Group discussions, exercises and reflections will be guided by our family recovery coach in a password protected, media-rich closed group website to encourage safe sharing and healing in a supportive community.

About Us
Families Healing Together provides interactive, online family mental health education designed to help families and individuals transform the experience of emotional distress, psychosis and other challenges that may have psychiatric diagnoses. Our strengths-based recovery approach helps families move from distress, fear and confusion to greater sense of well-being, wholeness and connection. Families Healing Together is a collaboration between Family Outreach and Response, PracticeRecovery.com and Mother Bear CAN, three organizations dedicated to helping families recover from mental health challenges through healing power of community.

Course Title: Recovering Our Families

Next Session: May 8th – July 3rd 2013

Duration: 8 weeks

Facilitator: Krista MacKinnon

Time commitment: As little or as much as you can invest. To receive benefits from the course, a minimum of one hour per week is be required.

Cost: $150 USD

Register Here: Paypal Registration

New paradigm novels

My  guest today is author Jilaine Tarisa, who kindly gave me her permission to reprint her reflections on what is meant by a new paradigm novel. Her new paradigm novel, A Moment of Time, is available as an e-book. I got to know Jilaine because we were both writing about revolutionary ideas and ways of understanding old themes; she approaching it in the form of a novel and I in the form of memoir.

What Is a New Paradigm Novel? (Part Two)

Part Two: What Is a Paradigm?

Many people would consider his opinions extreme, Kimo knew, so he mostly kept them to himself. He could afford to view unsustainable lifestyles and practices with disdain, for he had never benefited from the prevailing model; he had no vested interest.
(from Chapter 24, A Moment of Time)

In Part One, I noted some of the characteristics of the conceptual box that has become known as the novel. In Part Two, I describe some of the features of paradigms.

In 1962, historian of science Thomas S. Kuhn published The Structure of Scientific Revolutions (hereafter “SSR”), a controversial work that challenged cherished notions about the nature of scientific development. Kuhn proposed that science does not progress in a linear fashion, as many had supposed, but encounters revolutionary periods during which the paradigm that has governed scientific inquiry and methodology is replaced with a new and incommensurate paradigm. In other words, the new view is incompatible with the old view and cannot simply be incorporated into the existing model. The new paradigm may be superior to the old one because its theories provide better explanations for questions the old paradigm could not answer; using the new paradigm’s methodologies, scientists may be able to solve problems that adherents of the old paradigm were unable or unwilling to address. New discoveries or inventions can precipitate a paradigm shift, allowing approaches to emerge that previously were not possible or feasible. (Study of the behavior of minute particles awaited the availability of instruments that made observation possible, for example.)

Kuhn’s early training was in physics and his primary interest was in articulating his views about the beliefs and practices unique to the natural sciences. (Science is a self-governing community; scientists themselves decide upon the rules and review each other’s work. Though researchers must adhere to ethical standards imposed by the larger community in which they exist (and practitioners of professions like medicine must comply with licensing requirements), no external authority defines the scope of scientific activity or determines whether a theory is plausible.) Nonetheless, in developing his theses Kuhn turned to the social sciences as well as philosophy. (He reviewed studies about the nature of human perception, for example, and refers in his work to Gestalt and Wittgenstein.) As a result, many of Kuhn’s observations apply to human endeavors outside of the scientific tradition. Since the 1960s, use of the term paradigm has spread to psychology, theology, and economics and is popular beyond the world of academia.

In SSR, Kuhn used the term “paradigm” in two ways. The first use refers to “the entire constellation of beliefs, values, techniques, and so on shared by the members of a given community.” (1969 Postscript to the third edition) (The second use, paradigms as exemplary past achievements, is less relevant to the discussion that follows.)

Despite individual differences, members of a community accept the particular views that the model they follow prescribes. Beliefs and assumptions can be explicit or unexpressed, but the adherence to the model is what defines the community. Different schools of thought within a discipline or profession may use similar terminology, share basic assumptions, and even study the same kinds of phenomena, but they will interpret the data according to the model, or paradigm, that guides their inquiry and determines the value of the results obtained. Ideas that run contrary to expectations predicted by the model are dismissed—the continued existence of the paradigm requires the elimination of extraneous matters so that the matters that are explained by the paradigm can be articulated in depth and detail. Problems that the paradigm cannot resolve are rejected as “metaphysical” or the concern of another discipline. (E.g., science cannot prove or disprove the continuation of consciousness after death; it remains, therefore, a matter of “faith.”)

The Importance of The Box

Kuhn says that “normal science” (i.e., “the activity in which most scientists inevitably spend almost all their time”) is an attempt to force nature “into the conceptual boxes supplied by professional education.” In other words, our training—in science or in other areas—tells us which items in the world of stimuli, experience, data, and sensation we should notice and pay attention to and which pieces are irrelevant or unimportant and can be ignored. Normal science strives “to bring theory and fact into closer agreement.” The paradigm’s raison d’être is to provide a framework for research that applies theory; the paradigm dictates what will be studied and how it will be studied. It also determines which results are valued and which are considered worthless (e.g., “mere” facts that do not advance understanding of the matters being studied). The placebo effect may merit investigation by some other discipline, but bears no relation to the question of a drug’s effectiveness in treating a particular disorder.

Commitment to a paradigm is essential; we must believe in what we are doing, or how could we invest the time, energy, and resources necessary to succeed in our endeavors? The firefighter must believe he (or she) has the necessary training and ability to rescue trapped inhabitants of a burning building before entering; the cult followers must believe they are on their way to a better life when they follow their leader’s instructions to drink cyanide-laced punch. Many of our choices in life are influenced by our beliefs and assumptions—and the stakes can be high.

If you are an astronomer and you believe that all the planets in our solar system have been discovered, you will initially attempt to identify an unknown celestial body as a comet or a star—which is exactly what happened for a century, until Sir William Herschel identified the planet Uranus after studying its orbit. (Of course, the community of astronomers decides what qualifies as a “planet”–a term that had no official definition until 2006, when the International
 read the rest here

Lowest effective dose is often much lower than the minimum dose

Common sense seems to be returning now that pharma is coming more and more under scrutiny. Keep in mind that lowest effective dose applies to psych drugs, too, and it may be more than half the minimum dose.

Here is an excerpt from The Globe and Mail.
Canadians overmedicated because MDs unaware of drug risks, experts say

ADRIANA BARTON The Globe and Mail
Published Thursday, Apr. 25 2013, 6:03 PM EDT
Last updated Thursday, Apr. 25 2013, 6:23 PM EDT

But more often than not, McCormack said, the dosage is too high. A phenomenon he calls the “unintentional medication overdosing” of Canadians is due to a systemic flaw in the drug regulatory process, he said. To prove that a medication works in clinical trials, drug companies select a dose high enough to generate a response in the majority of patients. The studied dose becomes the marketed dose – and the dose that most health professionals choose, he explained.

Studies to determine the lowest effective dose are rarely conducted. Nevertheless, many drugs work in much smaller doses, with fewer side effects, he said. For example, when the antidepressant Sinequan was introduced as a sleeping aid, the studied dose was 25 to 50 milligrams. Years later, however, a follow-up study found that 1 milligram of Sinequan “was effective for sleep,” McCormack said.

Unless a condition is severe or life-threatening, he said, patients should ask their doctor about starting with one-quarter to one-half of the marketed dose, and then increasing the dose as needed.

Memories

Driving to a doctor’s appointment today, I rounded a corner and thought I saw one of the mothers from Chris’s old recovery program about to cross the street. It’s been eight years since Chris and her son were in the program, and I wondered how she and he were doing. Did she manage to overcome the sadness that every parent in the program seemed to share about the hopes of their child’s recovery? Does she no longer believe in the medical model of psychosis that the program reinforced? I wonder.

Community Treatment Orders – superficially appealing

It’s really quite amazing that the British psychiatrist who was a champion of Community Treatment Orders, tested his own theory (published in The Lancet) and acknowledges that he was wrong. The evidence suggests CTOs don’t work. The re-hospitalization percentage was the same for both groups (those force treated for a short time) and those on CTOs. In my opinion, the damage inflicted on the CTO patient in the form of stigma and loss of civil liberties is a big contributor to worse mental health outcomes over time.

From The Independent

In the study, researchers compared two separate groups of mentally ill patients to test if they experienced fewer hospital admissions. The first set of 166 patients were under CTOs, which can initially last for up to six months and can be renewed at the end of this period. Meanwhile, the other 167 participants tested had been placed on Section 17 leave, which is intended to be only a very short-term solution and can last a matter of days.

Their findings, published in The Lancet this month, revealed that 36 per cent of patients in both groups were readmitted to hospital within one year. There were no significant differences between the two groups in terms of the frequency and duration of admissions, the study found.

Both sets of patients were also remarkably similar in their social and medical outcomes.

Professor Burns added: “We were all a bit stunned by the result, but it was very clear data and we got a crystal clear result. So I’ve had to change my mind. I think sadly – because I’ve supported them for 20-odd years – the evidence is staring us in the face that CTOs don’t work.”

The Lancet study

The Lancet, Early Online Publication, 26 March 2013
doi:10.1016/S0140-6736(13)60107-5
This article can be found in the following collections: Psychiatry (Schizophrenia)

Community treatment orders for patients with psychosis (OCTET): a randomised controlled trial

Prof Tom Burns DSc, Jorun Rugås, PhD, Andrew Molodynski MBChB , John Dawson LLD, Ksenija Yeeles BSc , Maria Vazquez-Montes PhD, Merryn Voysey MBiostat, Julia Sinclair DPhil, Prof Stefan Priebe FRCPsych 

Interpretation

In well coordinated mental health services the imposition of compulsory supervision does not reduce the rate of readmission of psychotic patients. We found no support in terms of any reduction in overall hospital admission to justify the significant curtailment of patients’ personal liberty.

Take us both off the “mommy track” – please

I haven’t been posting much in the past few months, because, well, I feel increasingly awkward writing about my 29 year old son like he’s in kindergarten. “Chris’s first day at school, Chris tied his shoelaces today, etc. ” For crying out loud, he’s 29 and “mommy” should take a back seat, even if Chris isn’t the driver of the car. It just isn’t seemly on my part, at my age, to be so involved in being a mother to someone Chris’s age. Chris still doesn’t drive a car, BTW, as his problems came on just as he was taking young driver lessons. Hopefully, he will eventually decide to learn to drive and I can actually climb into that backseat.

However, I’m determined to show to parents and interested parties what the journey has been like, from the mother’s point of view, and the journey continues, as it does for all of us.  We still need to be find support for our situation when most of us aren’t in close physical contact with relatives of those with lived experience. So, here goes.

The goods news is that Chris had been meditating for over a year, is involved in his amateur theatre work, continues to take voice lessons, and has a girlfriend.  That takes a lot of the heat off me. My job has been to increasingly encourage Chris to take the lead in his own health and to speak up for himself. Maybe I’m way off base here, but I wonder how many 29 year old males are really motivated to get curious about their own health and research what to do about it? “I’m tired of doing all the legwork, Chris,” I whined last night (for the umpteenth time). There are self-help groups all over the net and YOU should be involved in them. I shouldn’t always have to draw them to your attention.” This last statement was uttered because Chris still occasionally struggles with hallucinations when he is alone during the day. And, being alone during the day with most of your activities skewed to nights and week-ends is a breeding ground for paranoia.

Another interesting development is that Chris and Dr. Stern are working on switching his medication to one (Risperdal) that affects fewer neurotransmitters than his current medication, Abilify. Abilify affects seven neurotransmitters, while Risperdal affects “only” four. Perhaps one reason Chris was recently not successful getting off the Abilify than he might have otherwise been if he were on a different medication, was that more neurotransmitters were implicated in the withdrawal. But, handling the meds are between Chris and Dr. Stern, and the switch is something they have apparently been discussing for a while. He’s been on Risperdal before. It was the medication that he was given when he was hospitalized for the first time. Chris said, and I agreed, that not one of the drugs he has used was particularly effective, but there you are.

Ian and I are still waiting for the day when Chris will work towards getting a university degree or announce he’s taking some course of action/training that will lead to employment. He tells me he is quite afraid of sitting in a classroom, which is odd, since he seems to have no trouble being on stage or singing solos in church. This is the big frustation point for us as his parents. We, of course, want him to move on to independence and self-sufficiency.