Wednesday, October 30, 2013

Today's obituary

Augusto Odone, Father Behind ‘Lorenzo’s Oil,’ Dies at 80

Augusto Odone, an Italian economist with no medical training who flouted scientific protocol and doctors’ advice to help concoct an experimental medicine that extended the life of his terminally ill son and inspired a Hollywood film, “Lorenzo’s Oil,” died on Friday in Acqui Terme, in northern Italy. He was 80. 

J. Michael Bishop, an American microbiologist who shared the 1989 Nobel Prize in Medicine, described “Lorenzo’s Oil,” the film, as misleading in its claims about the oil extract and “deeply troubling for its portrayal of medical scientists as insensitive, close-minded and self-serving” — a viewpoint he found to be encapsulated by one particular line spoken late in the film by Lorenzo’s father: “These scientists have their own agenda, and it is different from ours.”

But, writing in The Bulletin of the American Academy of Arts and Sciences in 1995, Dr. Bishop cautioned fellow scientists against dismissing the public sentiment the film conveyed. “Here is a warning science cannot take lightly,” he wrote, “a warning to explain ourselves more clearly, a warning even to change some of our ways.” 

Read the full obituary here 
Read more here 

Walks on the Margins, a Story of Bipolar Illness

5.0 out of 5 stars A story of creativityOctober 27, 2013
Amazon Verified Purchase(What's this?)
This review is from: Walks on the Margins, a Story of Bipolar Illness (Paperback)

When I review memoirs of mental illness, I feel that I should say first where I am coming from and why I like to read these kinds of memoirs. (There really should be a name for this genre.) I am the mother of a son, a little younger than Max Maddox, who was diagnosed with schizophrenia and who is following his own artist's path, with his mother in tow. Like Kathy Brandt and other mothers, I've been working on a memoir, too. The focus of mine is finding out how best to help my son, learning about what constitutes good recovery and how to get there. How to get there often involves finding out what others are doing, and how this works out for them or their relative. I bang my personal drum against the purely medical model, which until recently, has been the dominant model propped up by the pharmaceutical industry aided by an unquestioning public. My writing style tends to be rather conventional, and factual, although I'm struggling to make my memoir worthy of the journey my son and I have taken.

With this preamble out of the way, I am flat out awestruck by the mother and son writing team, and frankly envious. Walks on the Margins takes serious literature turns, outstanding in a memoir. I'm thinking road trip writing --authors like Jack Kerouac, J.D. Salinger, Hunter S. Thompson. Not to forget Mark Vonnegut.

This is the painter's version of 21st century Chicago, as told by Max.

"In the still electric air, the sun slid beneath a satin graphite carpet, dark gray hooks dipped toward the horizon. Arms bent, shoes off, I sent doves up to the sky in a swirl as the sun broke once more, splashing the icon on a Baptist black velvet canvas, falling to my knees I grasped for this dream coming to me so slow, leaving me to doubt.

"Are you okay?" Four teenagers wondered why I was bawling and curled up in the dirt among discarded drug paraphernalia.

"I need an ORANGE," as in vitamin C and citrus fruit, lifted from Cezanne's bowl, the shape of release from the great weight of my role. But of course this misadventure had not befallen us all, which may have been all that ever mattered, and off they went with something to consider between them.

"They would call me crazy, assuredly they had done so already. The difference I guess was that something within them remembered that God does not like to offer proof precisely when it's asked of Him. Or then again perhaps they simply knew the master plan better than I, which I couldn't now distinguish from my own."

The mother Kathy's voice is just as good in its own way, tempered of course by practicalities of immediate focus of struggling to keep the wild, paint-the-town excesses of her son in check."

Where I find the book slightly disappointing is toward the end. I was really enjoying the trip and then felt like I was dumped on the curb without explanation, because, unbeknownst to me, the end of the journey was in site. We're rolling along the road, picking up speed to some destination or resolution or thoughtful self-reflection, and suddenly Max graduates from college, seems to transition fairly effortlessly to graduate school and they're back home in the driveway. Kathy speaks about recovery, but I wish she had said more about how she thought she and Max arrived at that point. She has taken National Alliance on Mental Illness (NAMI) Family-to-Family program , which gives her the institutional view of how recovery is possible:

"By the end of our twelve week class, many had let their anger go and quit blaming their loved-ones. And we'd stopped blaming ourselves. We'd accepted the "new normal" of life with mental illness. We left that last night with two-inch thick binders filled with information about mental illness, about what to do in a crisis, and how to communicate, problem solve, and take care of ourselves. We'd become educated and empowered. We'd learned that recovery was possible, and that we weren't as alone as we'd once thought."

That's what's being taught? Accept that Max is mentally ill, don't blame him, and learn to navigate bureaucracy? After the intense, searing experience that somehow worked out reasonably well for Kathy and Max, but with few clues as to why or how. There is so much more to the mechanics and the joy of "recovery" (or whatever we want to call it) that involve daily exercises in patient, faith, hope, empathy that radiate outward to embrace the whole family. These can be taught, but we first have to come from a believing place that our relative is not sick or diseased. While it is true that everyone has to tell their story in their own way --and this is a great story-- it is exceptionally great because of the art and the passion. Am I being romantic about mental illness if I prefer to focus on what's right about an individual rather than what's wrong with him? Is it better to focus our efforts on nurturing the artist rather than getting bogged down by the constant background noise? (Dubious science, harmful diagnoses, and money, always money issues.)

This book was obviously several years in the making, and a lot has changed. To gain a better understanding of recovery we need to start by rejecting the diseased brain, chemical imbalance, genetic pre-disposition to mental illness theories in favour of what many would say is the romantic idea that our problems/our humanity/our greatness are more home-grown. I say this simply because in recent years the science behind the "evidence" has been exposed as tenuous, flat out wrong, or simply wishful thinking.

Here's an American Psychiatric Association news release from May 2013.

"The promise of the science of mental disorders is great. In the future, we hope to be able to identify disorders using biological and genetic markers that provide precise diagnoses that can be delivered with complete reliability and validity. Yet this promise, which we have anticipated since the 1970s, remains disappointingly distant. We've been telling patients for several decades that we are waiting for biomarkers. We're still waiting."

That's enough drum banging on my part for now. I highly recommend this book. The writing is a delight. 

You can order this book at Amazon.

Effective family support: Krista MacKinnon on Madness Radio

Effective family support — Krista MacKinnon on Madness Radio

kristaHow can family members help a relative in extreme crisis – instead of worsening the situation? Is there a way out of treatment power struggles and arguments about “insight”? And what do families need to change about themselves? Psychiatric survivor Krista MacKinnon, formerly at Toronto’s Family Outreach and Response program and now Director of Practice Recovery, discusses practical methods for turning family relationships into tools for healing. See also: Family Outreach and Response and Krista MacKinnon

Visit the Madness Radio to download this interview.

Tuesday, October 22, 2013

What's love got to do with it? (Everything)

Chris has been testing a mammalian neurohypophysial hormone, secreted by the posterior pituitary gland, that acts primarily as a neuromodulator in the brain, a.k.a. oxytocin. (Not to be confused with Oxycontin!)

Oxytocin is available in the form of a nasal spray to be taken twice a day.

Chris reports feeling quite “good” and his enthusiasm level does seemed to have perked up. Seeing an opening, I jokingly (but not really) suggested that he change his phone message, which right now sounds like his best friend just died. Why not record, “Hi, This is Chris! Leave a message!”

Oxytocin is the “love hormone,” so how can I put this delicately? Anyone who hopes to be in a relationship could, umm…. use a dose of it because it’s linked to orgasm, pair bonding, social recognition, and trust and empathy with outsiders. Perfect!

Friday, October 18, 2013

The globalization of American style thought campaigns

I am confused by mental illness stigma campaign messaging.  I “get” human rights abuses, I “get” age and sex discrimination; there are legal recourses for these in many countries. I understand prejudice when we’re talking about discrimination, but anti-stigma campaigns are a different beast. Where are we going with mental illness anti-stigma campaigns, and why?  

These campaigns talk about “changing the conversation” about mental illness, which means, to my mind, at least, that they have an agenda to infiltrate minds. Anti-stigma campaigns aim to mold people’s thoughts to conform to the latest fashions and trends, and they encourage people to want to sign onboard, to be part of the “in” crowd and not a self-stigmatizing small minded misfit, a.k.a. a bigot. You want to be invited to the right parties? Check your ability to question the sense of what is happening at the door.

Anti-stigma campaigns are peculiarly American in origin, but adopted by many English speaking industrialized countries. Canada comes to mind, as there is less resistance there to American messaging  due to its geographic proximity and slavish desire to be invited to the noisy party going on right on its doorstep. Anti-stigma campaigns have heavy political undertones, and, with politics comes money. They should not go unchallenged, but they are extremely hard to find out what the real agenda or organization may be behind them. They appear to me to be essentially marketing gimmicks to rebrand thought in ways that benefit certain interests. Yes, in the case of mental illness anti-stigma campaigns, I’m heading in the direction of pointing a finger at pharma, without being able to get at solid evidence. (Please forgive me for not putting the requisite quotation marks around mental illness, a stigmatizing term if there ever was.)

What message are we supposed to take away from people wearing tee-shirts that say “bipolar” next to tee-shirts that says “sister”?  Or actress Glenn Close saying “schizophrenia, schizophrenia, schizophrenia, schizophrenia. See, it has no meaning?”  What would people in India, Thailand, France or South Africa take from this messaging? They would probably be confused. They may not have labels for their relatives. They’ve got their own understanding of mental illness, and, judging from the World Health Organization’s findings that recovery rates are much higher in the developing world than in Western industrialized countries, these people must be doing something right, stigma and all. 

On World Health Day (Thurs. 10 Oct.), I watched the documentary film Hidden Pictures, directed by, and narrated by, Delaney Ruston, M.D.  

From the official website: "Artistically crafted, with unforgettable characters, Hidden Pictures is unprecedented in it's (sic) scope. The filmmaker, who grew up under the shadow of her dad's mental illness, takes us on her journey to uncover personal stories in India, China, Africa, France, and the US. Moments of profound frustration and unparalleled compassion emerge. Ultimately we witness the incredible change that individuals such as actress Glenn Close are bringing about."

I had trouble with this film on several levels, despite its offering some interesting glimpses into different countries’ mental health systems, and their shortcomings. In Thailand, a person can be locked up indefinitely on someone else’s say so, without legal recourse. That’s a human rights issue. In the East, face saving and respect for one’s elders can override human rights concerns. That’s an ingrained cultural issue. South Africans seek out the advice of traditional healers, with predictably mixed results. That’s cultural, too. In India, there is intense pressure not to divulge an illness because doing so has severe implications for marriage prospects. Culture, again. France has very well developed medical care and social systems, but unemployment is high, and it is especially difficult for anyone, who is out of work for several years to gain a foothold in the job market. That’s cultural, but also economic.

Glenn Close, who founded the Bring Change 2 Mind anti-stigma campaign, is a hint that the viewer of this documentary is about to be subjected to the export of a Westernized biochemical view of depression, bipolar disorder and schizophrenia in countries as diverse as India, Thailand, South Africa, and France. Bring Change 2 Mind’s mission is tailored to a pharma only approach, without having to say so: To end the stigma and discrimination surrounding mental illness through widely distributed Public Education Materials based on the latest scientific insights and measured for effectiveness. To act as a portal to a broad coalition of organizations that provide service, screening, information, support and treatment of mental illness.

There is more than a whiff of pharma in Hidden Pictures.

Delaney Ruston's credibility problem in developing countries with their own cultural traditions, and better track record in overcoming mental illness, is that she is an American M.D., schooled in the biochemical model of the "disease," Her medical training has taught her that people with schizophrenia who now seem “normal” must have been misdiagnosed! (It’s there in the film.) In one scene, Dr. Ruston, as the narrator, refers to "the best medical care" as we simultaneously see boxes of prescription drugs being put on a shelf.

Dr. Ruston has cultivated ties to celebrities like Close and former U.S. Senator Patrick Kennedy, who also appears in the film —red flag warnings that money, power and industry are trying to gain international respectability through the seemingly innocuous footage of a film about compassion and caring. The American style Ruston brings to the film has a Hallmark card feel to it (so do pharma ads), the narrator and her camera focusing on how alike we all are, no matter where we live. Well, yes, in many ways that's true. I feel good about that, I don't feel good about how scientifically speculative information about the biochemical nature of the major mental health problems is being spread through a stealth campaign called stigma.

A feel good scene shows middle school children in the International School in Delhi "overcoming stigma" by learning about mental illness and the brain. We see brain charts and a kid who hasn't a clue that he is learning science that is merely wishful thinking at this stage, spouting the usual stuff about the biochemical nature of mental illness. The teacher takes an active, nurturing role in pushing the non-existent science. These carefully cultivated celebrity connections can open international doors, and not just for filmmakers.  I'll bet a lot of the parents of the middle school kids work for pharmaceutical companies in Delhi.

The real life stories of people struggling with mental illness were interesting, don’t get me wrong, so from that viewpoint, it is forty minutes well spent. But, I do strongly suspect that there is a hidden agenda behind the hidden pictures. Getting people and organizations to talk about stigma is pharma’s social marketing technique. Superficially, it seems harmless, but it also seems very much about getting drugs to some of the world’s most populated countries.

See also Chaya Grossberg’s excellent article Is a Little Stigma Better Than None?

Wednesday, October 9, 2013

The Commitment Plan App for the namiPhone

from NamiDearest, a satirical blog that brilliantly skewers NAMI-think. 

Introducing the Commitment Plan App for the namiPhone!


A commitment plan is a list of sneaky strategies and social manipulation techniques that family and friends can use when they are tired of dealing with a mentally ill loved one. It helps them not have to listen to or empathize with their loved ones thoughts and feelings. The plan is brief, is in the mommy’s own words, and is easy to read. It is an emergency plan for getting annoying loved ones committed.

Anyone who has an annoying and/or mentally ill loved one.
Clinicians can collaborate with mommies to develop the Commitment Plan™. Mommies can also develop plans on their own.

There are 6 Steps involved in the development of a Commitment Plan™.

Read the rest of it here.

Friday, October 4, 2013

Voices from my files: Who do you trust?

September 2005

Dear Dr. X,

I understand from talking to Chris today that he is about to get a refill of both his Clozaril and his Abilify. We are concerned that at this point, with the therapeutic vitamins and minerals he is taking, that he is over-medicated (difficulty getting dressed, slower speech, etc.) and this will impact him when his course begins next week. With Chris’s agreement and with your blessing, we would like to try to help Chris achieve optimum recovery through nutritional interventions while reducing his dependency on prescription medication to the minimum amount needed to insure good mental health. Of course, the psychotherapy that he receives through your day program is so important to Steve's recovery process. [forbes1] 

Best regards,

Rossa Forbes

Dear Mrs. Forbes,

Thank you for that information. I’d like to respond to you in a few words: Chris is not doing so well, my hypothesis is that beginning a course at the university is a stress factor [forbes2] and he is now experiencing more anxiety. Our clinical observations suggest that we would increase the Clozaril [forbes3]  and not decrease it. There seems to be a paradigm incompatibility with the introduction of the vitamins alongside the prescription medication, which could also be a problem for Chris: Who to trust.

Under these circumstances, I am available to see you this afternoon at 4 o’clock in my office.

Best regards,
Dr. X

Medication to "treat" the illness to date: Risperidone, Effexor, Abilify, Clozaril

 [forbes1]My way of trying to keep on the doctors good side, after  contradicting him on the medications

 [forbes2]Made me feel that, in the doctors opinion, Chris would never be able to tackle a course at university level. Quite crushing at this stage.

 [forbes3]The usual hospital practice, instead of trying to help relieve anxiety in a non-clinical way.

Thursday, October 3, 2013

Voices from my files

I have a file in Microsoft Outlook where I keep all the stuff related to my correspondence with Chris's doctors, going back to 2003 when Chris was hospitalized at CAMH in Toronto, and continuing on through the two year day program he was enrolled in from 2004 to 2006, until the present. This time span allows a glimpse into how biological psychiatry was carried out in hospitals, with its constantly changing medications and dosages, its reliance on E. Fuller Torrey as THE schizophrenia expert, and its lack of constructive engagement of the family, to outline just a few of its problems. We are perhaps looking back on the beginning of the end of psychiatry as we knew it. Even within the time span cited, I have seen changes for the better taking place as the  tenets of biological psychiatry at all costs have been challenged. I like the way Eleanor Longden put in in her recent exchange with  psychiatrist  Allen Frances.

What I endured so disastrously was the application of a reductionistic biomedical model that is practised in numerous hospitals in the Western world. Voice-hearing was seen as a meaningless symptom of disease - leading to coercive, over-zealous prescription practices, the privileging of biology over psychosocial circumstances, and the overstating of medication's effectiveness whilst minimizing both its limitations, and the hazards of long-term use.

Over my next few posts, I'll be dredging up some of the e-mail exchanges I have had with Chris's doctors. Here are some messages from them dating from his time at CAMH, a time where I knew very little about what was happening to Chris, and when my husband and I just took what the doctor said at face value. I have the luxury of going  back and putting in my own comments (see footnotes)  based on what I have learned in the intervening years.

Dec./Jan./Feb. 2003/4 (3 month hospitalization)

CAMH doctor
The usual therapeutic range of dosages of Risperidone is between 4 and 6mg per day, although some people may respond to even higher doses. Chris is currently at 4mg, the lower end of that range. He had a good response to a lower dose of the medication, but his response has plateaued and currently is actually not doing as well as he was even a week ago.  Given our observations and his reported thoughts and perceptions, there is very little question in my mind as to the diagnosis of Schizophrenia.  [forbes1] 

CAMH doctor
Chris has identified a number of religious and existential themes
recently, and I also believe that he may benefit from speaking to someone about these issues [forbes2] . I know that he has shared a strong relationship with Father Strand in the past, and we have asked him if he would like for us to request that he visit Chris.  We will endeavour to make these arrangements for him according to his wishes.

CAMH doctor
During this period of recovery, as a family, to best support Chris it is important to become familiar with the illness and also the existing treatments [forbes3] and the vistas for new strategies in the future.  Some the books that I have found helpful are Surviving Schizophrenia by E. Fuller Torrey [forbes4]  as well as Living and Working With Schizophrenia by Thornton, Jefferies and Seeman.

About halfway through his stay at CAMH, after withdrawing his application for the Review Board, withdrawing from his university, and having narrowly avoided electroshock treatment because he stopped eating, Chris’s doctor writes:

With the increased clarity of his thoughts, Chris is also reporting that he is feeling depressed with poor appetite, energy and decreased enjoyment in life.  The magnitude of the thoughts and feelings that he describing and his clinical presentation at this time, is suggestive of a Major Depressive Episode.  It is unclear what the relative contributions of his depression and psychosis to his overall clinical presentation at this time. Depression can occur with psychosis and the depression is treatable with the addition of medication [forbes5] to target his mood, energy and appetite symptoms. With your consent, we propose to add Venlafaxine (also known as Effexor XR) in addition to his existing Risperidone, at a dose of 37.5 mg once a day.  The usual target range is from 75mg to 300mg once a day.  We anticipate that we would start to see a response in his depressive symptoms within 3-4 weeks of starting the medication.  The typical side-effects include nausea, insomnia and perhaps restlessness, which are usually time limited (less than 1 week) and responsive to alteration in the dosing strategy e.g. with food, morning vs evening dosing.

Medication to "treat" the illness to date: Risperidone, Effexor

 [forbes1]Diagnosis based on what the doctor thinks is going on in someone else's head. Not very scientifically rigorous.

 [forbes2]Logically, shouldnt that person be you or another psychiatrist?

 [forbes3]The best way to support someone as a family is to see the illness?

 [forbes4]Thats about all that was available in 2003. 
[forbes5]Just meds? No thoughts of actually empathically  listening to Chris?

Tuesday, October 1, 2013

Psychotherapy's image problem

My son Chris has benefited from psychotherapy, as he has benefited from many other interventions that he has undertaken on the road to wellness. He was exposed to psychotherapy at the day program he attended from 2004 -2006 and has been doing it weekly beginning in 2006 with Dr. Stern.  As you can see, psychotherapy is no quick fix. It is lengthy, and obviously, expensive if your insurance company does not take the long term view. Judging from the sheer number of psychotherapists in the city directory, psychotherapy has no image problem where we live, in contrast to the Op-Ed piece in the New York Times (below). It's not really for me to say whether or how much Chris has benefited from any of the many treatments and therapies, I just know that today he is much more "together" than he was ten years ago. A problem with psychotherapy, in my opinion, is that is is open to longer term abuse, unlike other one-off or short term therapies that Chris was able to walk away from, having reaped the benefits. With psychotherapy, you are under the spell of the therapist, who dictates when the patient is "ready" to stop therapy, which, of course, means a drop in income for the therapist. In other circles this would be considered a conflict of interest. 
Op-Ed Contributor

Psychotherapy’s Image Problem

PROVIDENCE, R.I. — PSYCHOTHERAPY is in decline. In the United States, from 1998 to 2007, the number of patients in outpatient mental health facilities receiving psychotherapy alone fell by 34 percent, while the number receiving medication alone increased by 23 percent.

This is not necessarily for a lack of interest. A recent analysis of 33 studies found that patients expressed a three-times-greater preference for psychotherapy over medications. 

Read more here