“There is a view that jazz is ‘evil’ because it comes from evil people, but actually the greatest priests on 52nd Street and on the streets of New York City were the musicians. They were doing the greatest healing work. They knew how to punch through music that would cure and make people feel good.” (Garth Hudson, member of The Band)
The diagnosis is not just the death of hope
In memory of Jake, I would like to take up several of the excellent points that Suzanne Beachy highlighted in her guest post. Suzanne’s belief about Jake’s fate —that it, like many deaths in the so-called “schizophrenia” population, could be directly linked to the dismal diagnosis, is something that I hadn’t quite considered in that stark a way. She’s absolutely right. From my own experience, I know how the dismal diagnosis, the acceptance by the medical profession of the chronicity of schizophrenia, permeated our household. My husband and I were encouraged by the mental health system to see our son as hopeless. This led us to say the wrong things to Chris, to treat him like a child, to insist on the drugs that the doctors assured us were the only treatment, to cry over his lost opportunities, to get angry with him for constantly eating, to fight amongst ourselves.
One night, several years ago, a few months before he entered the psychiatric hospital for the third time, Chris got hit by a car. He was psychotic. Luckily, he was only grazed. I never told his psychiatrist about this because I was so against the drugs, having seen how little they had helped him, and I knew that the psychiatrist would insist that he go back on them. This was my ill-advised reaction to where the diagnosis had taken us. Chris could have been killed, but I was still in the dark about how to help him get better.
Parental divorce can also be one of the outcomes of the diagnosis. My husband and I, luckily still happily married, weren’t the only ones, apart from Chris, affected by the diagnosis. Try convincing your friends and relatives after you’ve finally seen the light that your relative will fully recover one day, and you may find they don’t share your optimism. They, too, have been affected by the diagnosis. Everybody “knows” that schizophrenia is incurable.
Let’s begin with the diagnosis of schizophrenia, which crushes all hope. Suzanne writes: I can remember when he was a newly minted mental patient, admitted to OSU’s psych ward at age 21. I and some of Jake’s other supporters were consulting with the people in white coats about his prognosis which was, in their estimation, either grim or grimmer. They did not want to give us any hope for his recovery. In frustration and wanting to inject some hope into the discussion, my long-time friend Drew, who had known Jake since he was two and had come to the psych ward out of love and caring, said, “Couldn’t it be that Jake has simply had a good old-fashioned nervous breakdown?” The resident snapped back, “There’s no such thing.”
So, a newly minted medical student who has been over-schooled in the psychopharmacology of the brain, but hasn’t been on this earth long enough to know about nervous breakdowns or the human spirit, becomes the messenger of doom, the thought leader on how we parents react to the diagnosis and shape our children’s lives (for the worse, I may add) for the next decade.
There is no such thing as a nervous breakdown today because, I strongly suspect, drugs had not been invented nor given for such a condition in the past. Best not to call it a nervous breakdown today. Call it schizophrenia, call it bipolar, call it depression, and we’ve got a drug now or in the pipeline to treat it. The medical student is too young and naive to have figured out that the tail is wagging the dog — doctors are now doing pharma’s work. (See my post on What ever became of the nervous breakdown?)
Suzanne writes: I have also been told by a psychiatrist/former schizophrenia patient that one of the worst places you can take a psychotic young person for help is the psych ward of a teaching hospital, which unfortunately was precisely where Jake landed.
(In the same vein, if you want to avoid a caesarean birth, don’t go to a teaching hospital.)
A teaching hospital (CAMH in Toronto) is exactly where my husband and I were coerced into losing all hope about Chris’s future. CAMH was about to give him electroshock treatment (no information divulged to us about the controversy), and if I remember correctly, my husband and I were disappointed that Chris was unable to participate in a research study. (He was moving to another country.) But now I know: Medical students could learn a lot from watching Chris’s electroshock treatment. Today, I thank my lucky stars that Chris managed to avoid both of these treatments. CAMH is ideally situated a stone’s throw from the University of Toronto main campus, and can therefore conduct research on endless streams of young treatment naive male students and their parents.
Suzanne writes: But let me inject some hope back into this story. In the past few years, I have met dozens of people who have fully recovered from “psychotic disorders.” All of them had to break away from mainstream psychiatry in order to find wholeness and healing.
What I appreciate about Suzanne is how positive she remains, in the face of much personal tragedy. If psychiatry refuses to give us hope, we, parents, relatives and psychiatric survivors, can make it our personal mission to show people where hope can be found. Suzanne and I have listened to ex-patients and arrived at the same conclusion — If you want to be fully recovered, you must break away from mainstream psychiatry and mainstream thinking.
In memory of Jake
What happened to Jake?
Seven years after being hospitalized in a psych ward, my brilliant, funny, sensitive, artistic, shining star of a son died as a homeless person after being struck by an Amtrak train in Santa Barbara.
Impossible, sickening, and yet it happened.
I can remember when he was a newly minted mental patient, admitted to OSU’s psych ward at age 21. I and some of Jake’s other supporters were consulting with the people in white coats about his prognosis which was, in their estimation, either grim or grimmer. They did not want to give us any hope for his recovery. In frustration and wanting to inject some hope into the discussion, my long-time friend Drew, who had known Jake since he was two and had come to the psych ward out of love and caring, said, “Couldn’t it be that Jake has simply had a good old-fashioned nervous breakdown?” The resident snapped back, “There’s no such thing.”
Really. And why not?
What I have learned in the time since Jake’s death is that despite what mainstream psychiatry likes to purport, people recover from psychotic disorders all the time, all over the world. I have met many of these survivors personally. I have also been told by a psychiatrist/former schizophrenia patient that one of the worst places you can take a psychotic young person for help is the psych ward of a teaching hospital, which unfortunately was precisely where Jake landed.
If, when Jake had his crisis, we had lived in northern Finland, where psychosis is treated in a radically hopeful way, he would likely not only be alive today, but also thriving. Sadly, we were living in the U.S., where young people who experience psychosis are told that they have some sort of debilitating brain disease for which there is no cure. What could be more hopeless?
But let me inject some hope back into this story. In the past few years, I have met dozens of people who have fully recovered from “psychotic disorders.” All of them had to break away from mainstream psychiatry in order to find wholeness and healing.
In a 2005 interview for MedScape, former schizophrenia patient Daniel B. Fisher MD, PhD, was asked about his own journey of recovery from schizophrenia. He said,
“I was lucky — I was able to find a psychiatrist who was able to provide me with many of the principles we find have worked in recovery. He believed in me. When I told him, several months after coming out of the hospital the second time with a diagnosis of schizophrenia, that I wanted to go to medical school and become a psychiatrist, he said he would be at my medical school graduation. And about 7 years later, he was there.”
In a 2009 interview for the U.K.’s Independent, former schizophrenia patient Eleanor Longden stated,
“My original psychiatrist told me I would have been better off with cancer because it was easier to cure. She still says that to people. What happened to me was catastrophic, and I survived only because of luck. If I had lived one street to the right, I wouldn’t have been referred to [innovative psychiatrist] Pat Bracken. That can’t be how people’s lives are determined.”
And so, dear reader, have you noticed the common ingredient in these two remarkable recovery stories?
For way too many people diagnosed with psychotic disorders, recovery depends on luck. We need to remove luck from this equation and replace it with faith and hope and the truth about the real possibility for wholeness and wellness, so that we don’t have to rely on dumb luck. In 2010 I gave a talk for TEDx Columbus about innovative psychiatrists who have successfully helped people overcome psychotic disorders. A link to that talk is provided here on Rossa’s blog. We as a society must demand a new paradigm (or rather, a return to an old one) that helps the mentally and emotionally suffering to get well and stay well.
Who’s with me?
Please listen to Suzanne Beachy’s message: TedxTalks What’s Next for the Truth?
Any diagnosis of mental illness results in a complicated and uncertain fate for those it strikes. When you lose a son as a result of such a diagnosis, it ignites a search for answers. Suzanne Beachy has gained a perspective on life as a result of her loss but is still asking, what is the truth?
I’m really tired of Yale University
Editor’s note: Yale University is a wonderful place to peddle the status quo while making money helping commercial interests fatten their bottom lines. We are all supposed to genuflect when we hear that someone teaches at or graduated from Yale! Yale and academia in general sold out long ago to the imperatives of business.
About the only thing I can agree with in the following interview with Mary D. Moller is her statement “We need to give people time to heal. We’re pushing people too fast. We have not done a good job of helping people cope with the psychological and emotional consequences of psychoses. Recovery is so much more than symptom management and obtaining meaningful work.”
Oherwise, I find the interview very disturbing. Prof. Moller has built her professional life around the biochemical model of the illness. Now, she is ensconced at Yale University, awash in research grants that promote recovery as a state of perpetual patienthood. Being a patient is stigmatizing, demoralizing, and unhealthy. But Ms Moller is a nurse first and foremost. She can’t be a nurse unless she has medicated patients.There is no incentive for her to connect the dots, and so she doesn’t. She does not believe in full recovery. She believes in exacerbations and remissions, and of course, meds.
Though no disclosure was provided for this interview, MEDSCAP discloses that Mary D. Moller has received grants for clinical research, served as an advisor or consultant to, and received honorarium for promotional talks, from AstraZeneca Pharmaceuticals.
NAMI Talks to Mary Moller about Post-Psychotic Adjustment
By Sarah Christen, NAMI Convention Manager
Mary D. Moller D.N.P., M.S.N., A.R.N.P., is an advanced registered nurse practitioner dually certified as a clinical specialist in adult psychiatric mental health nursing and a psychiatric rehabilitation practitioner.
We are looking forward to Mary’s presentation, “From the Couch, to the Mall, to Work! Understanding the Relationship of Post-psychotic Adjustment to Recovery,” at the NAMI National Convention on Wednesday afternoon, June 27.
NAMI recently talked to Mary Moller to get some insight into her life’s work and what she will be highlighting at the convention.
Can you tell us about your history?
I have been working in psychiatry since 1978. Prior to that, I worked in neurology for seven years. I had no experience in psychiatry when I started—I just noticed a complete parallel in behaviors and symptoms in psychosis that I saw on the acute neurology unit. I started providing the same kind of nursing care for psychiatric patients I did in neuro-rehab.
In 1992 I moved to Washington state because the nurse practice act allowed for autonomous prescriptive authority and independent practice. I started the first independent nurse-managed and owned outpatient psychiatric clinic to provide wellness-focused, one-on-one services and group psychoeducation for people living with serious mental illness and their family members.
When [the medication] aripiprazole came out in 2002, I noticed several individuals living with schizophrenia had a new level of awakening that hadn’t occurred with their previous medications. I started holding focus groups to develop a new rating scale I was calling “The Impact of Psychosis Questionnaire.” I was curious as to why some people seemed stuck in their ability to move forward with their lives. I wasn’t prepared for the often long-enduring anguish over the traumatic impact of psychosis that I was reading in the narrative section of the questionnaire as well as in the focus group discussions.
I realized that the consequences of psychosis was reflecting difficulty in adjusting to life with all the changes caused by a mental illness. I called the phenomenon “post-psychotic adjustment process.”
What is the Milestones of Adjustment Post-psychosis (MAPP) Recovery Model?
In 2003, there was nothing published on this phenomenon. My career has been spent attempting to understand the lived experience of psychosis from the person and the family experience. This was a new level to learn. I went back to school and studied this phenomenon for my doctoral thesis. The result is the MAPP Recovery model—Milestones of Adjustment Post-psychosis.
My research identified a four-phase process with 50 measurable cognitive, emotional, interpersonal and physical milestones that occur over at least a two-year period. Understanding this process assists both family members and the person living with mental illness to develop skills that will assist in meeting their desired recovery goals and aspirations.
We need to give people time to heal. We’re pushing people too fast. We have not done a good job of helping people cope with the psychological and emotional consequences of psychoses. Recovery is so much more than symptom management and obtaining meaningful work. I look at where an individual is along the trajectory and, with the help of the person, create an individualized set of goals and interventions to reach a desired target. The key to success in navigating the MAPP is the need for family support and medications that assist in managing symptoms.
How has mental health care changed in the last 30 years?
Science has shown us that psychiatric illnesses are very serious neurobiological disorders. We need to approach these illnesses as we do all other chronic health problems recognizing that there are exacerbations and remissions. They are very serious medical illnesses of the brain. Left untreated, they can cause very serious and lifelong consequences.
Stigma is still our major battle. The stigma runs so deep that it affects policy development and implementation. Politicians want to speak nicely, but dollars for community-based mental health care are still sadly lacking. We still have far too many people who are homeless or now being treated in jails. Housing and long-term services for individuals with psychiatric illnesses is still sadly lacking. Many excellent programs have been developed but had to close because of loss of funding.
Mary Moller is currently an associate professor of nursing at the Yale University School of Nursing, where she is director of the psychiatric nursing master’s program. She received the Case Western Dean’s Legacy Award for her research, “The Lived Experience of the Patient with Schizophrenia in the Post-psychotic Adjustment Phase of Recovery from Psychosis.”
First, do no harm
..Too Many Pills for Aging Patients
By JANE E. BRODY
April 16, 2012, 5:41
My 92-year-old aunt was a walking pharmacy, and a month ago it nearly killed her. The episode also cost the American medical system several hundred thousand dollars.
Overmedication of the elderly is an all too common problem, a public health crisis that compromises the well-being of growing numbers of older adults. Many take fistfuls of prescription and over-the-counter medications on a regular basis, risking serious and sometimes fatal side effects and drug interactions.
A series of research-based guidelines, recently updated and published in The Journal of the American Geriatrics Society, calls attention to specific medications most likely to have calamitous effects in the elderly. If adopted by practicing physicians and their patients, the guidelines should help to avert the kind of costly, debilitating disaster that befell my aunt.
A Crisis Among the Elderly
In early March, my aunt was hospitalized for an episode of extreme weakness, sleepiness and confusion. She was found to be taking a number of medications and supplements: Synthroid, for low thyroid hormone; Tenormin and Benicar, for high blood pressure; Lexapro, for depression; Namenda, for symptoms of Alzheimer’s disease; Xanax, for nighttime anxiety attacks; Travatan eye drops, for wet macular degeneration; a multivitamin; vitamin C; calcium with vitamin D; low-dose aspirin; a lutein supplement; and Colace, a stool softener.
Diagnosis at the hospital: low sodium, prompting a stoppage of Lexapro, known to cause such a side effect, and substitution of the antidepressant Viibryd. Noting her confusion, the hospital neurologist also added Aricept, another treatment for Alzheimer’s disease, although she is only suspected of having this condition.
Her cardiologist doubled the dose of Tenormin, stopped the Benicar and added another blood pressure medication, Apresoline. This caused a precipitous drop in blood pressure to 70/40 (120/80 is normal), leaving her completely disoriented and unable to stand or sit up.
After 10 days in the hospital, as she was being discharged, my aunt collapsed and started turning blue. CPR was administered (which fractured three ribs), followed by resuscitation in the emergency room and then transfer to intensive care, where she suffered three seizures. She was put on Dilantin to control them.
She developed double pneumonia, and the end seemed near. A do-not-resuscitate order was issued. One night, when she was too agitated to fall sleep, she was given a dose of Ativan, a sedative, that left her unable to wake up for 30 hours.
Miraculously, she responded to antibiotics and administration of oxygen, and she has since been discharged to a rehabilitation facility where she is steadily getting stronger, less confused and refreshingly feisty.
Older adults like my aunt are the largest consumers of medications. More than 40 percent of people over age 65 take five or more medications, and each year about one-third of them experience a serious adverse effect, like a bone-breaking fall, disorientation, inability to urinate, even heart failure.
With the support of the geriatrics society, an interdisciplinary panel of 11 experts in geriatric care and pharmacology has updated the so-called Beers Criteria, guidelines long used to minimize such drug-related disasters in the elderly. After reviewing more than 2,000 high-quality research studies of drugs prescribed for older adults, the team highlighted 53 potentially inappropriate medications or classes of medication and placed them in one of three categories: drugs to avoid in general in the elderly; drugs to avoid in older people with certain diseases and syndromes; and drugs to use with caution in the elderly if there are no acceptable alternatives.
For example, instead of a sedative hypnotic — like the Ativan given to my aunt — that can cause extreme sedation, serious confusion and mental decline in older adults, the panel notes that an alternative sleep remedy, perhaps an herbal or nondrug option, is safer. Many sedating antihistamines, in a class of drugs called anticholinergics, should be avoided in older adults because they can cause such side effects as confusion, drowsiness, blurred vision, difficulty urinating, dry mouth and constipation, the panel concluded.
Mineral oil taken by mouth can, if accidentally inhaled, cause aspiration pneumonia, and many commonly used anti-inflammatory medications, including over-the-counter drugs like ibuprofen and naproxen, increase the risk of gastrointestinal bleeding in adults age 75 and older, as well as in those age 65 and older who also take medications like prednisone and warfarin.
In adults over age 80, the team warned, aspirin taken to prevent heart attacks “may do more harm than good,” and any antidepressant may lower sodium in the blood to dangerous levels, as happened to my aunt.
The team said its criteria should be used by physicians and patients within and outside of institutional settings. But the experts also emphasized that the guidelines should not override a doctor’s clinical judgment or a patient’s needs and values, nor be used as grounds for malpractice disputes.
The Patient’s Responsibility
The geriatric society’s Foundation for Health in Aging has produced a one-page “drug and supplement diary” that can help patients keep track of the drugs and dosages they take. They should show the list to every health care provider they see. The form can be found at www.americangeriatrics.org/files/documents/beers/MyDrugDiary.pdf.
Too often, people with multiple health problems have one doctor who does not know what another has prescribed. A new prescription can lead to a toxic drug interaction, or simply be ineffective, because it is counteracted by something else being taken.
There is nothing to be gained, and potentially much to lose, by failing to disclose to health care professionals the use of prescribed, over-the-counter or recreational drugs, including alcohol. Nor should any chronic medical condition or prior adverse drug reaction be kept from your doctor.
Whenever a medication is prescribed, patients should ask about side effects to watch for. If a bad or unexpected reaction occurs or the drug does not seem to be working, the prescribing doctor should be told without delay. But patients should never stop taking a prescribed medication without first consulting a health care professional.
Nor should they add any drug or supplement to a prescribed regimen without first consulting a doctor. Even something as seemingly innocent as ibuprofen, acetaminophen, St. John’s wort or an antihistamine purchased over the counter can sometimes lead to dangerous adverse reactions when combined with certain prescribed medications or pre-existing health problems.
But just because a drug is on one of the lists in the Beers Criteria does not mean every older person would be adversely affected by it. The drug may be essential for some patients, and there may be no safer alternative. When all is said and done, a doctor must weigh the benefits and risks.
Life as it is
living within a family is individual and collective insanity
all children experience trauma in one form or another
all children are mentally ill, if a belief in Santa Claus and the Tooth Fairy offers any clue at all
families go to great pains to not project publicly what is going on privately – this is hardly news
most parents start out with good intentions – reality gets the better of them
real families are not sitcom families – I wish it were otherwise
Whatever became of the pill pusher?
The doctor in the tiny town in Northern New York where I spent my teenage years, was popularly regarded as a “pill pusher.” We all knew that when we left his office we would be holding a prescription. We just felt that these prescriptions were often unnecessary. (Of course, we filled them anyway.) The term “pill pusher” seems to have gone out of fashion when (a ) in the early 1970s recreational drugs took over the town’s teenagers, and (b) people began to go to doctors and demand prescriptions.
The journey and the labyrinth
On Easter week-end I was delighted to discover that there is a labyrinth within walking distance of our vacation home in Southern Germany. That could be Chris in the foreground of the photo. The labyrinth is just one interesting attraction in the Park of the Senses. It’s a replica of the famous Chartres Cathedral labyrinth, although the camera angle makes it look bigger than it actually is. I would say it took me about ten minutes to get to the center, and when I got there, I realized it would take me another ten minutes to go back to where I started. There are no shortcuts when you walk a labyrinth. The Chartres labyrinth has complex numerological meaning. I would love to see more labyrinths being built in public, residential and therapeutic settings. If you know of any in your neck of the woods, send me the links and I’ll add them to this post. If you live near Asheville, NC, check this one out.
The Labyrinth is a prayer tool, a divine imprint, found in all religious traditions in various forms around the world. By walking a replica of the Chartres Labyrinth; laid in the floor of Chartres Cathedral around 1220, we are rediscovering a long-forgotten mystical tradition that is insisting to be reborn. This labyrinth has only one path so there are no tricks to it and no dead ends. The path winds throughout and becomes a mirror for where we are in our lives; it touches our sorrows and releases our joys. So walk it with an open mind and an open heart.
There are three stages of the walk:
Purgation — a releasing, a letting go of the details of your life. This is an act of shedding thoughts and emotions. It quiets and empties the mind.
Illumination — is when you reach the center. Stay there as long as you like. It is a place of meditation and prayer. Receive what is there for you to receive.
Union — which is joining God, your Higher Power or the healing forces at work in the world. Each time you walk the labyrinth you become more empowered to find and do the work you feel your soul reaching for.
Guidelines for the Walk
We come to the Labyrinth walk at various stages in our spiritual journey and with a wide variety of needs and questions present in our life. Some people find it helpful to focus their minds and hearts on a particular question as they walk the Labyrinth. Others find it most helpful to simply clear their mind and become aware of your breath and open yourself to whatever the experience on the path has to offer. Trust your experience and the Spirit to guide you on your way. You may “pass” people or let others step around you whichever is easiest at the turns. The path is two ways. Those going in will meet those coming out. Use the pace and movements that feel natural to you. You should plan on taking at least twenty minutes to walk the Labyrinth.
Psychiatrist plugs medication adherence on NPR radio through scare tactics
ALT_mentalities has posted an NPR interview with psychiatric survivor Carmelo Valone. Please check out ALT_’s post and then listen to the NPR interview. If you’re still hanging in there (and believe me, it’s worth it), feel free to add your two cents to the discussion.
Valone’s story should give many people cause for hope! The psychiatrist who phoned in should give many people cause for dismay.
Land of hope and glory
Since this is a blog about a mother and son journey through schizophrenia, I try stick to the knitting as much as I can and offer up anecdotes about our daily lives. Lately, I’ve posted more about external news and events. I haven’t posted much personal stuff recently because Chris is in kind of a holding pattern. He’s out most evenings during the week rehearsing for H.M.S Pinafore, and has another upcoming concert in celebration of Queen Elizabeth’s 60 years on the throne. “Land of hope and glooooryy, da, da, da, da, da, da.” etc.
On the week-ends, Chris can be found building props for “the Queen’s Navy”. He’s really enjoying the physical work. He’s decided to drop the weekly voice lessons for a while because he feels he’s not progressing. Fair enough.
But, he seems too serious these days. A bit sad. A bit nervous. I’m not sure what this means. I know he feels that he is spinning his wheels, but I also know he’s not ready to make any big life changes. Taylor, our youngest, will be graduating from university in May and has a job lined up beginning in August. Time is marching on, and Chris is a worried that he’s not in step.
Just stay the course, I tell myself. Chris will figure it out eventually.