A message of hope from Jen Maurer, Managing Director, Mother Bear; Families for Mental Health

Rossa’s note: I’m on the Advisory Group of Mother Bear and have taken two of its online courses on practicing recovery and sustaining hope. I am so grateful to Mother Bear for filling a huge gap in the recovery movement — helping families to understand and appreciate the human side of psychosis and mental distress. Mother Bear’s online courses and Help Hotline, is a godsend. A few months ago my son, Chris, called the hotline when he needed an empathic someone to help him work through his emotional state. He keeps the SOS phone number handy and knows he can be listened to with empathy when he calls.

I’ve made my donation to keeping the Hope Light brighter and I urge you to consider donating, too.

Dear friends,

As many of you know, for the past two years I have been working for a labor of love-literally and figuratively-as Managing Director of a new nonprofit, Mother Bear: Families for Mental Health ( http://www.facebook.com/l/9AQHkteVYAQFyM06tzKWpwmutkPIFhY0PAcBmW1oNCX2G9Q/www.motherbearcan.org), which is dedicated to helping families heal from intense emotional distress.

The traditional medical system, friends and other family members have often given up all hope for these families. Not surprisingly, families come to us with barely a flicker of hope left that their loved one will ever recover or that they will recover from the exhaustion and worry that comes from caring for someone who is in chronic distress.

That is what is heartbreaking about my work. Seeing how deeply families are struggling without support.

What is heartwarming is being able to share with families that with support and education, we can help them reduce relapse rates by as much as 75%. Fact. Decades of research to prove it.

Recovery from even severe emotional challenges is not only possible, it should be EXPECTED… with the right support, of which there is precious little.

That’s where we come in. Mother Bear is, quite literally, a light in the darkness for families.

I am asking you to consider helping us burn our Hope Light brighter by making a contribution of any kind to Mother Bear today (Dec. 3rd), otherwise known as #GivingTuesday.

#GivingTuesday is a movement that encourages people to take collaborative action and harnesses the power of social media to create an international Day of Giving that thrives on the spirit of generosity and amplifies small acts of kindness in the service of changing our world for the better.

Here are just a few of the ways you can help Mother Bear transform lives:

* “Like” us on Facebook (https://www.facebook.com/MotherBearCAN) to spread the word that recovery is possible and to share our healing resources. We are ALL touched by mental health challenges (yes, 1 in 4 of us at any given time!). You may not know whose life you are helping by sharing. Rest assured, you are.

*Post our #GivingTuesday link on your Timeline and ask your friends and networks to do the same.
( http://www.facebook.com/l/dAQFbdTBdAQHs9rNC-boU-5zOIYnx2tXMJm3IxatQPVpwzQ/givingtuesday.org/partner/mother-bear-families-for-mental-health/)

*Call our Hope Line at 1-855-I HOPE 4 U between midnight tonight throughtomorrow Dec. 3 (ending at 11:59 pm) and tell us what brings YOU hope. We’ll share it with our growing network of families on Facebook and Twitter! (I’ll be taking calls from 8 am to 3 pm tomorrow if you want to call and tell me your hope story personally!)

*Make a financial gift in any amount. If you contribute before 11:59 pm on Dec. 3, your gift (and your friends’) will be matched up to $150K! (That is a lot of HOPE!)
( https://www.facebook.com/l/tAQGrQpNyAQGcNugK26MJo6I7u13EWjMs-gm8qDRbwkVYhQ/https%3A%2F%2Fwww.paypal.com%2Fcgi-bin%2Fwebscr%3Fcmd%3D_s-xclick%26hosted_button_id%3DQNGYF76RFWAHC)

Our special goal for this campaign is to secure the resources and staff necessary to increase our Hope Line hours in 2014 so more families can get support when they need it. We are currently the only toll-free Family Mental Health support line in the country.

I’m grateful for your friendship, your support and all the healing work you do in your own ways!

Wishing you all Hope- and Love-Filled, Healthy Holidays!

Jen

The job of hope

Hope is a job, not an amorphous entity that’s always beyond our eager grasp. This reality was underscored recently when I enrolled in the Family Healing Together course, “Recovering our Hope.”

I used to have a misconception about hope. I thought it was something that you went to church to pray to get, or something that people say when what they really mean is that hope is lost. “Well, there’s always hope,” people will say, and you know right then and there that the hope vessel is sunk.

No sir. Hope is a job that you get up every day for and go to work for. You learn how to have hope and once you do, you learn how to practice it, manage it, and adapt it to your own situation. Hold it, examine it, work with it.

What does it look like? Well, here’s an example. Maybe you are worried that your son or daughter will never, never, ever, be able to put the pieces of his or her life together, because some part of his or her recent behavior has caused you to doubt. Maybe it’s yet another missed appointment or not being able to get out of bed in the morning. Maybe it’s a lack of concrete achievements or crippling self-doubt. Maybe it’s all of that or something else.

So, you start by reframing – turning your own negative perceptions into something positive, because if you look closely, you will see that your relative is making choices and perhaps even moving forward in some crazy way that eludes you. You may realize that there is something you can offer them that helps them flourish. It comes from YOU.

You get down on your hands and knees and blow on the embers when the flicker of hope is dying. Maybe all it takes is a post-it note, or a rigorous mental exercise to focus on the positive and ignore the negatives. One thing I do is to keep returning to my read what my role models, people who also share a positive perspective, say.

Here’s one such positive perspective from the course, which is post-it note worthy:

“Suspend judgement and consider the possibility that even your most outlandish hopes can not only nourish you, but can also help you flourish.”

Today’s obituary

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

By PAUL VITELLO

Published: October 29, 2013

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

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?

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 hypothesisis that beginning a course at the universityis a stress factor [forbes2] and he is now experiencing more anxiety. Our clinical observationssuggest that we would increasethe 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 doctor’s good side, after contradicting him on the medications

[forbes2]Made me feel that, in the doctor’s 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.

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, shouldn’t that person be you or another psychiatrist?

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

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

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

By BRANDON A. GAUDIANO

Published: September 29, 2013 197 Comments

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.

Taxidermy as an alternative therapy

One of my favorite humor blogs is NAMI Dearest, the laboratory creation of a certifiably mad genius. Somehow I missed this latest post.

Preserve Those Cherished Memories…and Your Loved One, Forever!

Posted on August 30th, 2013

Who better understands your frustration with non-compliant mentally ill family members than we do here at NamiDearest?

As leaders in mental illness advocacy and policy, we devote the weight of our enormous moral authority and hand-wringing sob stories to the advancement of best practices in mental health care. Some of these best practices include fewer patient privacy rights, lower civil commitment standards, forced psychiatric drugging and ECT, as well as the progressive Assisted Outpatient Suicide program, otherwise known as The Permanent Solution.
But how do we handle the grief of losing our loved ones once the treatments have cured their genetically transmitted, psychiatric brain diseases?

Yes, there is always Zoloft. But in addition to chemically numbing the symptoms of Grief Disorder, many NamiDearests are finding Taxidermy Therapy to be an effective adjunct to their personal recovery regimen.

Read the rest here

All over the map, but not really

Chris (and therefore, I) has had an emotional few months. Let’s see. It started with his breaking up with “Jenny,” back in July. His decision, not hers. A decision which had all the appearances of being taken for the right reason but a decision he immediately regretted. For someone who has spent a lifetime avoiding decision-making, I was thrilled that at least he had made one. I was not so thrilled that he immediately began to second guess himself. But, no matter, after an intense week of taking his own pulse and talking to people who would listen, he righted his sails. I’m pleased that he is finally getting around to taking a stand, on something! I loaded him up with lots of books on boundary issues, and I pointed out that he tends to have rather fluid boundaries and anybody can invade his space. “You’ve got to know your limits,” I counsel him, “and respect them.” He can also invade other people’s boundaries by being too caring. He can’t assume that other people want his help or sympathy.

The decision to no longer see Jenny lasted no more than a month and now they seemed to be locked in an on-again/off again thing. Not my business, except that Chris wants to talk to me about it, so, reluctantly, I’ve been dragged in, despite my protests that his relationships are his business. I’ve had a few rough sleeps that have actually had me praying for morning to come. If I step back from the drama of it all, using “conscious refocusing,” I can truthfully say that Chris may be going through a rough patch, but he is learning to take risks, to make decisions, and to live the consequences of his decisions. He is maturing.

Having a girlfriend has prompted him to realistically assess his marital prospects. His future earning ability is not promising, at this time. Here’s where we get around to discussing the need to go back to school to prepare for entry into the job market. “If you would like a future with Jenny or anyone else, Chris,” isn’t it time you got real about your education?” I think he may be finally getting the point.

Necessity, the mother of invention.

NIMH Director Thomas Insel’s latest thoughts on long term use of antipsychotics

Recently, results from several studies have suggested that these medications may be less effective for the outcomes that matter most to people with serious mental illness: a full return to well-being and a productive place in society. Read the full post here.

It was only a short while ago that the National Institute of Mental Health Director was singing a different tune, that schizophrenia and other mental health disorders were developmental brain disorders that needed better drugs to target underlying causes. He was describing the problem from a purely scientific perspective:

We must address mental illnesses, from autism to schizophrenia, as developmental brain disorders with genetic and environmental factors leading to altered circuits and altered behavior. Today’s state-of-the-art biology, neuroscience, imaging, and genomics are yielding new approaches to understanding mental illnesses, supplementing our psychological explanations. Understanding the causes and nature of malfunctioning brain circuits in mental disorders may make earlier diagnosis possible. Interventions could then be tailored to address the underlying causes directly and quickly, changing the trajectory of these illnesses, as we have done in ischemic heart disease and some forms of cancer. For serious mental illness, this is a new vision for prevention, based on understanding individual risk and developing innovative treatments to preempt disability.

So, his latest post shows an important shift in thinking in its questioning long term use of the drugs and acknowledging the neglected importance of what is needed to help people to achieve better outcomes – family engagement and education, employment, and therapy.

Neither first nor second generation antipsychotic medications do much to help with the so-called negative symptoms (lack of feeling, lack of motivation) or the problems with attention and judgment that may be major barriers to leading a productive, healthy life. Family education, supported employment, and cognitive behavioral therapy have all demonstrated efficacy in reducing the likelihood of relapse events, increasing the ability to function in daily life, and improving problem-solving and interpersonal skills.

He ends on a humble note.

These new data on the long-term outcomes for people with “schizophrenia” remind us that 100 years after defining this disorder and 50 years after “breakthrough” medications, we still have much to learn.

My next post will highlight the” Recovering our families” on-line course that I find, from my own experience, to be the best and the most innovative guidance one can find for helping family members transform and heal from the emotional distress associated with trauma and challenges surrounding mental health diagnoses.