Wednesday, April 29, 2009
A Knowledge is Necessity exclusive.
In a surprise move expected to be announced shortly, the American Psychiatric Association's Task Force responsible for overseeing the revision of the DSM - psychiatry's diagnostic bible - has come up with the new diagnosis of "Asshole."
Unlike other disorders, episodes, types, and specifiers listed in the DSM, the diagnosis of Asshole fails to mention any symptoms. Nor does it offer a description of the illness.
"Let's put it this way," said E Pontius Paella MD, director of the Darwin Awards Treatment Center at Johns Hopkins and member of the working group that came up with the new diagnosis, "you know one when you see one."
The new diagnosis is the result of heated discussion throughout the Task Force's many working groups, in particular the one responsible for updating the bipolar diagnosis. According to bipolar group member S Belinda Humphries MD of the University of Northern South Dakota, speaking strictly off the record: "We were sick of hearing from our bipolar patients about the bad rap they were getting as a result of Assholes who had mistakenly been diagnosed as bipolar."
Leading bipolar patient advocate Phil Toogood was ecstatic over the news. "It's about time," he commented. "Since the dawn of history we've been putting up with their shit. Every time someone does some asshole thing, people automatically assume the jerk must be bipolar. Maybe now the public won't confuse us."
It isn't just bipolars. Reports Charles Manson from his prison cell: "For years, assholes have been giving us sociopaths a bad name."
The illness is considered chronic and untreatable. When asked to give an example, Dr Paella commented, "That's easy. Rush Limbaugh. Say no more." Dr Paella did add that Assholes can go on to lead productive lives. "Look at all those idiot commentators on Fox News," he observed. "See, there is hope."
When advised that not every Asshole can aspire to a position on Fox News, Dr Paella replied: "No problem. They can always become antipsychiatry bloggers."
The new diagnosis of Asshole is expected to become official in 2012, when the American Psychiatric Association is scheduled to publish the fifth edition of the DSM.
I just got off the phone with Sue, a fellow journalist who is interested in what other journalists need to know about reporting on mental health. Surprisingly, considering that this is what I do full-time, I had never given the matter much thought. I kind of hemmed and hawed. Then I recalled an example of execrable reporting by the NY Times and Boston Globe, and suddenly I was babbling a mile a minute:
Two years ago, the NY Times and Boston Globe broke the story of the tragic death of Rebecca Riley, age 4, who died from a drug overdose after being diagnosed with bipolar disorder. Rebecca's parents are awaiting criminal trial, and civil action has been taken against the prescribing physician.
In the initial stories and follow-ups, it became apparent that if the journalists involved had actually interviewed the parents of kids with bipolar, they certainly hadn't listened. The first duty of a journalist is to listen. This is what we have been trained to do, and virtually all of us excel at it.
In fact, we do a much better job of listening than psychiatrists (who tend to have major issues concerning their self-importance).
For a model example of listening, check out the film, "The Soloist," now in theaters. In one memorable scene, Robert Downey Jr as real-life LA Times columnist Steve Lopez encounters a strange man on the streets playing a violin with two strings. Intrigued, Lopez initiates a conversation.
The strange man, played by Jamie Foxx, appears to be rambling incoherently. Most of us would walk away at this point. But by encouraging the strange man to keep talking, Lopez is able to lock into coherent fragments of this man's side of the conversation. He learns that the man's name is Nathaniel Ayers, that the streets of LA is what he calls home, and that he had attended Julliard.
The idea of a Julliard education stands in complete contradiction to the appearance and behavior of this strange man, and no one would have blamed Lopez had he chosen to end the conversation then and there. But Lopez took the trouble to investigate the man's seemingly delusional assertion. Bingo!
Back to the NY Times and Boston Globe: The idea that young kids may have severe mental illness runs counter to our beliefs. It is easier, instead, to believe that innocent kids are suffering in the hands of bad parents and overzealous doctors. That's the story the media ran with. It wasn't that the reporters were pandering to the public's prejudice and ignorance; they were merely writing their stories according to the dictates of their own.
Had the journalists actually listened to the parents, their realities would have shifted. They would have reported the facts of Rebecca Riley's death in a way that acknowledged the tragedy of innocents being robbed of their childhoods and the terrible burden this places on their families.
Instead, the Times and the Globe chose to frame early-onset bipolar in terms of a "controversy," as if the diagnosis does not have wide acceptance by expert clinicians and as if psychiatry were medicalizing types of behavior that others would call normal.
This is absolutely not the case. Expert agreement on early-onset bipolar is by no means unanimous, but most of the debate stems from boundary disputes between the ADHD specialists and the bipolar specialists. Most of the rest involves academic food fights over where to set diagnostic thresholds.
It is conceivable that the experts may come up with an entirely new diagnosis to describe bipolar-like behavior in young kids, but - listen to the parents - the phenomenon, however one chooses to define it, is horrific and real.
Lesson: Watch for stories that report issues as "controversial."
The true controversy concerns medical intervention, but again the media botched that part of the story. We read - over and over - that these kids are being prescribed "powerful" medications. Reality check: Next time you are being prepped for surgery, ask for a "weak" anesthetic.
The media also mentioned that these meds had not been approved by the FDA for use in kids, a trap journalists tend to fall into when reporting other types of medical stories. What the media forgets is that off-label use of meds often constitutes best medical practice.
The FDA regulates the sale of medicine, not the practice of medicine. The process of approval for any drug is initiated by an application from its manufacturer, which in turn arises from clinical trials based on marketing decisions. Thus, Eli Lilly and others initially sought FDA approval for their SSRIs as antidepressants rather than as anti-anxiety meds (which had a bad reputation at the time).
So, imagine if the drug companies had not - a few years later - sought FDA indications for different types of anxiety for their SSRIs. And suppose you have anxiety, but can't tolerate a benzodiazepine. Is your psychiatrist supposed to give up on you?
The Times and Globe missed this completely. Instead, in their reporting, they raised the innuendo of overzealous doctors recklessly and illegally endangering our kids. What they failed to report was that two major psychiatric treatment guidelines recommend the use of medications for kids with bipolar, including one put out by the American Psychiatric Association, and another published in the Journal of the American Academy of Child and Adolescent Psychiatry.
(We can debate the merits of these recommendations, but that is another discussion entirely.)
I did make it clear in my conversation with Sue that for the most part I am very happy with the way mental illness is reported in the media (leaving out those shock-horror stories involving deranged people on killing sprees). Health journalists work very hard at getting vital information out to a concerned public under extremely difficult conditions, and I am proud to consider myself one of them.
In my experience, when it comes to reporting on mental illness, to a person they "get it." The Rebecca Riley story happened to be one of the unfortunate exceptions.
Tuesday, April 28, 2009
A few days ago, Beyond Meds "reprinted" a 2000 tract by clinical psychologist and author Ty Colbert PhD, entitled, NAMI Parent’s False Hope: Blindly Disabling Children for Life.
Dr Colbert has participated in NAMI, where he has observed parents achieving at best mixed success with their kids on meds. According to Dr Colbert:
"Even though these members (parents) are dedicated to helping their children, because they have been falsely convinced that mental illness is a biological disorder, they are blindly helping to disable their children, many for life."
Clearly Dr Colbert struck a chord, judging by the post's numerous spirited comments, some virulently anti-NAMI, but many from individuals who feel that long-term meds treatment has ruined their lives.
Dr Colbert cites the case of Gary, the son of two NAMI parents who became depressed shortly after being turned down for an athletic scholarship. He was examined, then sent home (this would have been more than 30 years ago, so we are presuming no meds were involved). Then, when Gary's thinking grew disordered and delusional, he was diagnosed with schizophrenia and prescribed medication. Despite this, his condition deteriorated, and 25 years later he is still struggling to reclaim his life.
According to Dr Colbert: "His paranoid thoughts and hallucinations were his mind’s way of trying to deal with all this pain." An insightful therapist, Dr Colbert contends, "could have helped Gary deal with his strong feelings of failure. In this way, Gary could have successfully worked through his pain and not lost his life to the disabling effects of the drugs."
It is a long stretch to claim that Gary lost his life to meds rather than schizophrenia or that talking therapy could have helped, particularly in describing events that occurred a quarter century before Dr Colbert ever laid eyes on Gary, but we get the point.
Indeed, at this year's International Congress on Schizophrenia Research I learned that 4 percent of the US population experiences psychotic symptoms without having schizophrenia. Clearly, then, we can make a case for extreme caution before slapping a label on someone and telling them they will need to be on meds the rest of their lives.
So what is Dr Colbert's clinical track record? Curiously, the one unequivocal success he cites in his piece involves helping a kid through his "dark spot." No mention was made of any symptoms approaching schizophrenia. Dr Colbert does say he has helped young people through their "psychotic breaks," but the best he can show for his efforts is Jerry, age 28, who is only just beginning to put his life together after 10 years on meds.
Dr Colbert points out that psychosis doesn't just come out of nowhere, but this is hardly news. The "diathesis-stress" model has been in circulation in psychiatry for at least three decades, the DSM refers to psychosis linked to stress, and research across a wide array of disciplines strongly supports the notion that our brains mediate how we respond to our environment. Dr Colbert contends that "the mind is actually functioning very creatively to protect the soul or self," but in reality he is describing a physical and biological organ very hard at work.
But, yes, we badly need Dr Colbert's voice in the conversation. Over the course of two decades he has been speaking out against the blind faith patients and families have placed in very imperfect and frequently disabling meds, and the terrible things that can happen when frustrated patients inevitably go off them without other therapeutic supports in place.
Having said that, it is appropriate to end on this cautionary note:
Some time back, an individual I know fairly well entered a program inspired by (but hardly modeled on) Loren Mosher's Soteria House. He was taken off his meds and underwent talking therapies designed to get him in touch with his feelings. (Soteria House would never have taken this individual off his meds.) While still in the program, he experienced a psychotic break and entered a restaurant brandishing a BB gun. He was arrested, criminally prosecuted, and served two years in a locked psychiatric unit, along with murderers and other violent offenders.
This individual is now on meds and is working part-time in an academic setting. The doctors in charge of taking this individual off his meds refused to take responsibility.
Monday, April 27, 2009
At age 11, it was evident that Nathaniel Ayers had a special gift. Beethoven was his idol. The cello was his passion. He attended Julliard on a music scholarship. He was on the cusp of realizing his dream ...
In 2005, LA Times columnist Steve Lopez happened to encounter a middle-aged homeless man playing a violin with two strings. Intrigued, Lopez pulled out his recorder and started asking questions. The homeless man's name was Nathaniel Ayers. He had attended Julliard ...
Two separate worlds. We see a homeless person - a stinking, babbling, and potentially menacing annoyance that we cross the street to avoid. What we don't see is someone's precious son or daughter. Someone who may have attended school with us. Someone who may have been doing well in school, was dating, looking forward to college.
Someone not too different than you or me.
Then - out of nowhere - catastrophe. The brain quits, no longer cooperates. Someone's world - theirs - falls apart, disintegrates.
Same individual. Two worlds.
But in the just-released film "The Soloist," we also see two people from their respective separate worlds, seeking common ground. The movie stars Robert Downey Jr as Steve Lopez and Jamie Foxx as Nathaniel Ayers, based on the book of the same name.
Lopez' major problem in life seems to be racoons infesting his lawn. For Ayers, rats scuttling across the patch of sidewalk he rests his head on is a mere minor annoyance. Lopez tries to help. He uses a cello - with all its strings, you might say with strings attached - as bait to lure Ayers into a shelter on LA's notorious Skid Row.
Ayers responds positively to his new environment, but then worlds collide. Lopez naively assumes that Ayers can be helped simply by being medicated, but soon receives the education of his life. You see: Ayers may hear voices, he may have difficulty perceiving reality, he may have problems figuring his way around in our world. But to integrate him into our world, first one has to meet him on his own terms in his.
This is the essence of humanity. Appearances are deceiving. Strip away the surface stuff, strip away the preconceptions, strip away judgment and pre-judgment, and there stands a human being, proud, dignified.
There is Ayers - mighty, like a rock - telling Lopez in no uncertain terms where to get off with his paternalistic do-gooderism. The scene is highly disturbing. Ayers has successfully stood his ground - in his own world - but at what price?
This is not going to be one of those movies, we realize, where the person with severe mental illness gets a concert hall gig at the end (as in "Shine") or wins the Nobel Prize (as in "A Beautiful Mind"). This is all about scaled-down expectations and baby steps, and eventually Lopez wises up by embracing Ayers as his equal and by validating his reality.
For now, it is enough that Ayers is living indoors and off the streets and playing music. We may mourn a life lost and a dream shattered. But "The Soloist" forces us to come to terms with the fact that Ayers himself does not necessarily share that view.
We are learning, all of us.
Call it a conditional healing, an uneasy acceptance, the type of ambiguous conclusion that Hollywood notoriously refuses to trouble itself with. This time, it is different. I loved "Shine." I loved "A Beautiful Mind." But our understanding has come a long way since then. We have matured and so has Hollywood. An uplifting ending would have been a slap in the face to all of us. Hollywood has acknowledged this, and in so doing has met us on our own terms in our own world, the same world - it turns out - that we share with Nathaniel Ayers.
This is a terrific and complex movie, bound to stir both your passions and intellect in equal measure. Please - please - round up a crew of friends and head out to the cineplex.
Sunday, April 26, 2009
There is a time for everything,
and a season for every activity under heaven:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.
Yesterday, Saturday, early morning: I head out to an isolated resort on the high desert for my weekly game of water volleyball. This is my "play" time, where I and a pool of co-conspirators have given each other permission to act like five-year olds. In a recent series of blog posts, I observed that taking time out to play - play like the experts, namely kids - is critically important to maintaining good mental health.
It is the end of the week, a time to play.
Part of my play includes chilling out in the hot tub between games and at the picnic table area of the resort. The sight of Frank at one of the tables was always a good sign. This meant that his partner Sandi could be counted on to materialize with a tray of deviled eggs or stuffed mushrooms.
But no more. Eleven or twelve days earlier, Sandi was put on life support following a motor vehicle accident. Last week, her family made the decision to remove her from the life support. She died peacefully very soon after.
10 AM: Time to play water volleyball. Frank is in the pool with us. As always, he is the sneakiest server in the pool. It is a time to play.
Noon: I'm sharing the hot tub with Pat, a water volleyball buddy. A very serious topic comes up: The ultimate hamburger. Hold that thought ...
2 PM: More water volleyball. I had missed the previous week and am exceptionally rusty. I've been blowing easy shots all day and my fellow five-year olds have been showing me no mercy. I've been returning their playful put-downs in full measure. Our final game of the day is into the closing minutes. I'm in the front row. From our back row, the ball floats into my airspace. With perfect coordination, I jump, I spin. My arm sweeps around like the wrathful weapon of an avenging deity and next thing the ball is cleaving in two the water on the other side of the net.
In two years of water volleyball, this is by far my best shot ever. The equal of the best shots of our best players.
Yes! Yes! I did it!
It is a time to dance.
5 PM: We're gathered in the rec room of the resort for Sandi's memorial service. It is a time to mourn, but also a time to celebrate. Frank gets up to speak. His throat catches, his voice cracks. I look around. Eyes are misting up. Lips are quavering.
It is a time to weep.
After the service, I approach Frank. I have been in the pool with him for three hours today, but then was not the time. Now is the time. I offer my condolences.
It is a time to embrace.
6 PM: Pat approaches me. The ultimate burger has been on his mind ever since our hot tub conversation. Improbably, there is a great place not far away, in the middle of nowhere, that knows how to make one. With his wife and another water volleyball buddy we head out.
6:30 PM: We're at the Spa restaurant in the town of Jacumba, on the Mexican border, in the middle of nowhere. The food is always great. I know exactly what I want: Their Spa burger - half-pound of Angus beef, cheddar, bacon, and mushrooms. Michelle, my favorite waitress of all time and occasional water volleyball buddy, announces the choice of sides - fries, onion rings, cottage cheese ...
Suddenly I'm cracking up. Michelle and my dinner mates are looking at me quizzically.
"I'm on a heart-healthy diet," I announce. "I better have the cottage cheese."
It is a time to laugh.
Today, Sunday morning: I am writing this blog piece, contemplating the sharp contradictions of the day before, the sharp contradictions in life. Is there a reason? Who knows. Is there a connection? Yes definitely.
In the words of The Teacher:
The sun rises and the sun sets,
and hurries back to where it rises.
The wind blows to the south
and turns to the north;
round and round it goes,
ever returning on its course.
All streams flow into the sea,
yet the sea is never full.
To the place the streams come from,
there they return again.
A time to heal ...
Friday, April 24, 2009
On Friday, "The Soloist" went into general release. The movie, starring Jamie Foxx and Robert Downey Jr, is based on a book of the same name by LA Times columnist Steve Lopez. The book and movie chronicle the unlikely friendship forged on Skid Row between Lopez and Nathaniel Ayers, a gifted cellist who lost his mind to schizophrenia while attending Julliard.
I will be seeing "The Soloist" with a friend on Sunday, and plan to have a review here for Monday. In the meantime, here is a random sampling of newspaper reviews:
NY Times: The film is imperfect, periodically if unsurprisingly sentimental, overly tidy and often very moving. It works hard to make you feel good, as is to be expected, even as it maintains a strong sense of moral indignation that comes close to an assertion of real politics.
SF Chronicle: "The Soloist" finds success in one area, however, in director Joe Wright's subjective depiction of schizophrenia as experienced from inside an afflicted person's mind. In several memorable sequences, Wright creates a soundscape of imagined voices, all competing for attention, and through subtle, imaginative camera work, he conveys the dislocation of a person receiving reality through a distorted and frightening filter.
Chicago Tribune: We get only a drive-by sense of who Nathaniel Ayers, the former Juilliard music student plagued by undiagnosed schizophrenia, really is underneath the agonized surface. The film's poster lets you know who the movie's about: It's about the star Los Angeles Times writer Steve Lopez, played by Robert Downey Jr., whose influential columns on Ayers and his downtown L.A. skid row existence led to huge readership, political reform, a book deal and a movie sale.
Minneapolis Star Tribune: "The Soloist" is pitch-perfect, a sensitive rendering of challenging social and emotional themes. What could have been a maudlin exercise in sentimentality — the unlikely relationship between a homeless street musician and a Los Angeles Times metro columnist — becomes a soul-stirring tribute to the power of music and the importance of friendship.
When it comes to raising public awareness, Hollywood has no equal. For a short time at least, the general population will be receptive to our message and we're fools not to take advantage of it. So I urge you, please see the movie. Then tie in whatever pet beef you may have about living with your illness to the movie and start advocating. And then advocate some more ...
"The Soloist" trailer
It was supposed to be a quick and easy campaign. But British military incompetence blew the element of surprise. On April 25, 1915, British allied forces - including a large contingent of Australian and New Zealand units (ANZACs) - landed on the beaches of the Gallipoli Peninsula in Turkey only to encounter waiting Turkish forces dug in on the heights.
The intention had been to quickly knock Turkey out of the war (World War I), thereby rendering Germany vulnerable to invasion from the south. Instead, the allies found themselves on the defensive, clinging to the small bits of land they had gained in the early days of fighting. In one desperate battle, 17,000 ANZACs held off 42,000 Turks.
Several months into the campaign, ANZAC troops spearheaded an offensive to seize the high ground. New Zealand's Wellington Brigade managed to fight its way to the summit of Chunuk Bair, only to be swept off the top by a force led in person by Mustafa Kemal, who would later become known as Ataturk, founder of modern Turkey. Of the 760 ANZACs who made it to the top, 711 became casualties.
The campaign ground down into brutal trench warfare. The troops, exposed to the heat and appallingly unsanitary conditions, were mowed down this time by dysentery. By the end of summer it became apparent that the campaign was a failure, but it took until early January 1916 to organize and complete an evacuation.
More than 10,000 ANZACs lost their lives during the Gallipoli campaign, which ushered in a coming of age for both nations. In the wake of that senseless bloodbath in distant Turkey, men and women in a far-flung corner of the British Empire came to regard themselves as Australians and New Zealanders rather than mere British subjects.
ANZACs also saw service as cannon fodder on the European front, where they suffered more casualties per population than the other forces in the war.
It is dawn in New Zealand right now, one day ahead of the US. New Zealanders of all ages right now are gathered at the war memorials that grace every town there, large and small. Simply counting the names of the dead inscribed into those memorials is a sobering exercise. The ceremony is simple and solemn.
I lived in New Zealand for 11 years, Australia for 5. As well as my US citizenship, I also hold New Zealand citizenship. My daughter was born and raised in New Zealand. She resides in Wellington with her husband, another New Zealander. Any children they may have will be New Zealanders.
The sun is rising in New Zealand right now. A bugler is about to sound Last Post. It is time for two minutes of silence, a quiet remembrance.
Thursday, April 23, 2009
On May 28 last year, Newsweek published a cover story, entitled, Growing Up Bipolar. Reported Newsweek:
"Max Blake was 7 the first time he tried to kill himself. He wrote a four-page will bequeathing his toys to his friends and jumped out his ground-floor bedroom window, falling six feet into his backyard, bruised but in one piece."
Commenting on the article in a blog piece I did for HealthCentral, I wrote: "My God! I thought. This reporter actually gets it!"
Just about every parent of a bipolar kid I have talked to has told me a similar story. A number of parents have related to me stories of their kids trying to jump out of moving vehicles. Sadly, Max's story is all too typical.
Predictably, the story did not go down well with the antipsychiatry contingent. Philip Dawdy of Furious Seasons had this to say:
"It is also one of the worst pieces of journalism on the alleged disorder that I have ever seen."
In a later post, Philip Dawdy wrote:
"For those of you who want to read the thoughts of a defender of the disorder in kids, you can do no worse than John McManamy's post over at Health Central. He's been an extremely harsh critic of anyone who questions bipolar disorder in children, and his tone is often one of religious conviction."
In the year preceding the Newsweek piece, the media had been running accounts relating to the tragic death of Rebecca Riley, age 4, who died of an overdose of medications after being diagnosed with bipolar. The parents are awaiting trial for first-degree murder for allegedly overdosing their daughter with the sedative clonidine, and the prescribing psychiatrist is being investigated for malpractice.
The NY Times, 60 Minutes, and other outlets used the tragedy to discredit the diagnosis of early-onset bipolar. The following from 60 Minutes is fairly typical of the coverage:
Katie Couric (to Rebecca Riley's mother, in prison): "Did you ever think, 'Well, she's two and a half years old.' There's this thing called the terrible 2's. Did you think this could, in fact, be normal?"
In response, in a blog piece I wrote:
For years, parents of kids with bipolar have been fighting battles reminiscent of the first generation of NAMI parents. Back in the bad old days, psychiatrists blamed schizophrenia on bad parenting. Mothers were simultaneously lectured to love their kids more and discipline their kids more. Then the schizophrenia would go away.
Parents of bipolar kids have been getting the same treatment. Recently, thanks to books such as "The Bipolar Child," and the establishment of organizations such as the Child and Adolescent Bipolar Foundation, parents have been able to make headway with their clinicians and the school system. Many of these kids, and their families, now have hope in their lives.
Thanks to the sensationalism surrounding the Rebecca Riley tragedy, however, we now see the revival of stupid talk about child bipolar being a fad diagnosis, and that it is overdiagnosed. Worse, so-called pundits are claiming that what is being called bipolar is just normal child behavior.
Back to Philip Dawdy:
"I've noticed that tone to be consistent in late-diagnosis bipolars, as McManamy is. You've got to wonder what's driving that."
Where did that come from?
Last week, I was in Seattle for a four-day conference put on by the Association of Health Care Journalists, of which I am a member. During a luncheon, the AHCJ recognized "the best health reporting in print, broadcast and online media." Taking first prize in the large magazine category was Mary Carmichael for her "Growing up Bipolar" story. According to the judges:
"From the first sentence, this riveting story escorts readers into a nightmarish world of a young boy's mental illness. The writing soars with observational detail that shows, rather than tells, creating a narrative of survival and, ultimately, one of hope. Layered with multiple perspectives - the product of original reporting - the story tackles controversial issues that resonate long after the final sentence."
Say no more ...
Further reading from mcmanweb:
The Bipolar Child - What to Look For
According to Martha Hellander, Executive Director (as she then was) of the Child and Adolescent Bipolar Foundation, the problem is not overdiagnosis of bipolar in children. "To the contrary, we receive reports daily of families with children evidencing clear symptoms of being told flat out that 'children can't get bipolar disorder.''
The Bipolar Child - Treatment
An article in the South Florida Sun-Sentinel describes one family’s journey through hell, but finally - after finding a psychiatrist who made a correct diagnosis and treated their kid accordingly, mother Tina was able to say of her 13-year-old son: "I don't know this kid. He's a different kid. He's fun. I enjoy being around him ... Steven was getting A's where he used to get F's ... I never bonded with Steven. Now that he's stable, I'm learning to love him. I'm catching up on nine years."
The Bipolar Child - An Historic Book
Right off the bat, parents started using "The Bipolar Child" to educate their children’s clinicians and educators. A sampling of reader reviews on Amazon:
"With this book in hand, I approached my son's first psychiatrist who had been treating him for ‘generalized anxiety’ for over a year, regardless of our input about his therapy and meds not working. I told him that my son was a dead ringer for bipolar and that we had a history of Bipolar within our family. He insisted that our son was NOT bipolar. I immediately sought out another child psychiatrist that primarily treated BP children and we eventually had our suspicions confirmed. Without this book, I could not have done it."Are We Overmedicating Our Kids?
Still, when it comes to antidepressants and mood stabilizers and antipsychotics, the best that psychiatrists can do for now is cite their own clinical experiences with these meds. Parents are entitled to take a skeptical approach and hold the doctor or psychiatrist to account for any medication he or she may recommend.
Tuesday, April 21, 2009
My favorite parent advocate, Louise Woo, shares a new concern about the fate of our kids. Louise, please tell us what's on your mind ...
Thank you, John.
The world of high-anxiety, achievement-oriented American parents is abuzz this week about Margaret Talbot's grimly-reported New Yorker article, "Brain Gain: The Underground World of 'Neuroenhancing' Drugs."
(For those of you who haven't read the article yet, here it is: http://www.newyorker.com/reporting/2009/04/27/090427fa_fact_talbot?currentPage=all )
The initial premise of the article wasn't particularly shocking. Most parents already know that teenagers and college kids have been abusing ADHD stimulant medications for over a decade now.
What was sobering was Talbot's revelation about the growing number of studies showing that prescription stimulants do indeed provide measurable improvement in cognitive abilities for people who do not have ADHD. That, and reports of drug manufacturers like Cephalon (makers of Provigil) who have already been reprimanded for efforts to subtly market the drug for "neuroenhancement" purposes.
Why should this bother me? Isn't it a good thing that relatively safe prescription drugs can help people be smarter and more productive?
On the face of it, it's hard to oppose it as a bad thing. Certainly many bright, highly-productive researchers think it's just fine as evidenced by a 2008 survey of readers of the scientific journal Nature, where the majority of respondents said healthy adults should be allowed to take medications for cognitive improvement.
But in our household, we face an ironic dilemma. Both of my sons are diagnosed with ADHD and mood disorders. And while the mood disorders (bipolar and depression) have been successfully stabilized with medication, neither teenager can take standard ADHD medications.
We've done a trial of every common ADHD medication in the book: Ritalin, Concerta, Adderall, Strattera. These medications make my son with bipolar disorder go manic and the one with depression irritable and nasty. So their ADHD must be left untreated, which puts them at a distinct disadvantage in a highly-competitive, above-average school district where ALL kids are expected to perform at peak ability from middle school onwards.
I have a sickening feeling in my stomach as tide surges forward. Clearly if scientists and doctors think it's OK and the research supports it, most high school and college students will be taking "neuroenhancement" drugs in the near future.
And where does that leave kids who can't take these drugs? Or the kids whose families don't have health insurance? Or the kids from uneducated families in less-competitive (i.e. poor) public schools? I don't know. It threatens to create a Cognitive Abilities Gap, where the bright get brighter and everyone else just has to drink more coffee.
Here in California, where the public schools are already slaves to the No Child Left Behind law and the curriculum is skewed to have children focus on annual statewide standardized tests, things will get ugly.
Teachers are already under tremendous and unrealistic pressure to improve their class's test scores every year. For high-scoring schools, this is a bizarre challenge. How much better can the scores get?
Can the scores be improved if more kids are on "neuroenhancement" drugs? Maybe. Will there be (more) pressure placed on parents to "do something" about their "only average" kids? Probably.
Will parents, rich and poor alike, become alarmed by this? Absolutely. But how do you fight the incoming tide?
In the past 20 years, we have already been swept out to sea by the tide of Higher Achievement. It is standard practice -- NOT a luxury -- in "good" school districts that we hire after school tutors for our elementary school kids and put our teenagers in private SAT prep courses.
Teenagers are encouraged to take Honors and Advanced Placement courses in high school, discouraged from having jobs (because it takes time that could be used for academic work) and assigned hours of homework -- even over school vacations.
And for what? To make the grade so they can be accepted by colleges which don't have enough seats for every qualified applicant anyway?
I don't know where the end of this will be, but I certainly don't like where I see things going.
Every year the competition gets stiffer for good grades, good colleges and finally good jobs. As Talbot noted in The New Yorker article, even middle-aged workers are feeling the pressure to take these drugs to keep-up with younger colleagues.
Will this ultimately change the meaning of the question: Does he or she have "the right stuff?" Yesterday, having the "right stuff" meant having intelligence, perseverance and bravery.
Tomorrow, it seems, it will just mean having a prescription for Adderall.
Here's me in a virtual operating theater on the University of Washington medical campus performing a brain examination on a patient I'm about to send into cardiac arrest.
I'm taking a break today from my usual blogging to reset my brain after four days of the Association of Health Care Journalists conference in Seattle. One of the reasons I went there was to expose myself to health issues outside my usual mental health beat and to learn from the people who cover these issues. Just to give you some context, immediately prior to the virtual operating room visit, I was in a lab with top TB and malaria experts. Immediately after, it was the wonders of long distance medical operations over the internet with robotics and functional robotic hands to attach to patients.
There was also lots of stuff on general health issues, such as universal health care coverage and how the environment (which means whatever life throws our way) impacts on our health.
Trust me, every little thing I picked up from the conference gave me new perspective on the issues I cover here at "Knowledge is Necessity" and mcmanweb.com. TB and malaria may seem a long way from mental illness, but I came away with valuable insights on medical research and drug development that would have eluded me otherwise. On and on it went.
Also, I learned a lot simply by hanging out with fellow health journalists. These are people who provide a very vital public service under extremely challenging conditions. Their role generally goes unappreciated, but when you read about how doctors are performing unnecessary liver transplants or that statins may bring down cholesterol but don't actually significantly reduce heart attacks or what a family with a kid with bipolar has to go through - well - you are finding out only because a journalist has bothered to dig out the facts in the first place and report them in plain English. (These were actual stories that received top awards at the conference.)
Anyway, barring something unforeseen, I'll be at the next AHCJ conference.
In the meantime, back to pretending I'm working ...
Monday, April 20, 2009
Late afternoon, San Diego: I step out of the airport terminal into brilliant surfer dude weather. I strip off my sweater and jacket, but even with a tee shirt and jeans I feel way overdressed. This is definitely shorts and flip-flop weather.
San Diego was unseasonably brisk when I left for a health journalists conference in Seattle five days before. The bracing Seattle spring - with some actual sunshine - was just my style, and I was very impressed by the parts of Seattle I saw, but I know I could never live there.
Way back in the mid-70s, I lived for a year in Vancouver BC. Beautiful city, lovely people. But the whole time I was there we had maybe 20 days where the sun made an appearance. Back in those days, people didn't know what seasonal depression was. I never knew what hit me. Now that I do, I would never expose myself to that situation again.
I collect my car, and an hour later I'm 3,500 feet up in the mountains in an environment that has nurtured and healed me the last 28 months. (The picture you see is typical of the views I get when I take my daily walks.) Generally, our surroundings get thrust upon us. I found mine serendipitously after my marriage broke up in late 2006.
I know the climate of the Pacific Northwest is a tonic for a good many people, and there are days here where I wish I could import some of that in short bursts. SImilarly, anytime I'm in New York, I feel I have been re-equipped with fresh batteries. Never underestimate your environment. The right job with the right income in the right relationship in the right neighborhood in the wrong part of the world for your particular psyche may be a disaster for you.
Me, I'm staying put.
On a similar note: My Seattle trip was my first air travel in nearly a year. I may have moved to a nurturing environment, but I nearly blew it in 2007 by going on the road 11 times, including four cross-country trips. By late summer I was showing clear signs of brain fatigue and by the end of the year I was running on fumes.
In 2008, I cut my road trips to one, not counting going to New Zealand to attend my daughter's wedding. For the first part of that year, I also pretty much stayed put on "my mountain," keeping my local and regional travel to a bare minimum, with a reduced work and social schedule.
I'm pretty much back up to full strength, but I would be crazy to go back to my 2007 killer routine. There's a conference coming up in San Francisco next month and another one in Pittsburgh in June. I will have to think very carefully about what else I want to include on my schedule. There are many things I want to do, but my brain clearly has limits.
Environment matters. Know thyself. Live well ...
Sunday, April 19, 2009
Early Sat Morning: A session on autism. The reason this illness is on the agenda has to do with the considerable media coverage over the years regarding whether vaccinations cause autism in kids. The expert panel informs us this is not the case. The jury is in, the panel informs us, in the form of at least six studies. No causation has been found. Paul Offit MD of the University of Pennsylvania, vaccine expert and author of “Autism’s False Prophets,” reminds us that with scientists in virtual unanimity, the issue can hardly be written up as a “controversy.”
I experience a flashback to the less-than-stellar reporting in the NY Times two years ago in a series of articles similarly describing early-onset bipolar as “controversial” (as if it could be argued that these kids’ behavior were normal, that they were the victims of bad parenting, and that certain researchers in cahoots with Pharma were disease-mongering). Don’t get me started ...
Ignore that last sentence. At lunch, the AHCJ awards Mary Carmichael of Newsweek first prize in the large magazines category for her terrific story, “Growing Up Bipolar.” Had she been in attendance I would have given her a hug. But I’m getting ahead, and I’ll save this for another blog piece. Back to autism ...
Parent advocate Alison Singer informs us that the media has been pitting parents against science, which is “not so.” The studies have been done, she lets us know. “The questions have been asked and answered.” Scarce research money, she concludes, needs to be applied to searching for the underlying mechanism of action for autism and its treatment, not in yet more vaccine investigations.
Late morning: I wander into a sparsely-attended session on “healthy environment,” expecting something along the lines of clean air and clean water. But what the panel means by environment is exactly what the brain science researchers mean by environment - namely, anything out there that impacts health.
Stephen Bezrucha MD of the University of Washington lets us know that mortality rates in the general population actually go down during economic hard times. One reason, he said, may have to do with people having more time to connect with their friends and families.
Naturally, this raises the whole stress-mental illness issue, together with whether work is “tonic or toxic.” Well, actually, I’m the one who raises the issue at question time.
Brief sidebar: In two sessions from Friday, at question time, I mention in passing my diagnosis (as it happened to be germane to the discussion). So for two days fellow journalists are coming up to me and congratulating me on my courage in disclosing.
I feel a bit awkward about this. I’ve been “out there” for 10 years. It’s not like I had been agonizing over the last few days on whether or not to come out. But the conversation serves as a forceful reality check. Our population has good reasons for not disclosing. The stigma out there is fierce. I’ve created a comfortable world for myself as a bipolar “expert patient” journalist. But the world that my fellow patients deal with tends to be a lot harsher. I’m supposed to know that, but how easy it is to forget.
Back to “tonic vs toxic.” Michael Hayes PhD of Simon Fraser University reminds us of the famous “Whitehall Study” that investigated British civil servants, which found that those high up the managerial food chain - in “high control/low demand” - positions fared a lot better on just about all health measures than the worker bees in “low control/high demand" positions.
Lunch: Oxymoron time. I’m rolling in the aisles listening to a “funny economist.” Uwe Reinhardt PhD of Princeton flashes a slide of a confused Alan Greenspan juxtaposed with “Atlas Shrugged,” and I’m experiencing a Seinfeld moment (think Kramer’s famous one-liner in “The Contest”).
As a financial journalist, I used to write that economists were full of crap (but was never smart enough to prove it), so it’s reassuring to hear one of the world’s leading economists enthusiastically own up to the fact that “my profession has been a complete and total failure,” that “what we say adds up to zilch,” and that economists “build models that only make sense on the planet Vulcan.”
A very sizable percentage of my fellow health journalists have either been business/finance journalists or currently are, so the aisles are clogged with rolling brethren. Health care is as much a business and economics story as it is a medical and health story. Virtually all of us are straddling two fields.
As if to reinforce the point, one of the afternoon sessions involves statistics.
Late afternoon: A panel of AHCJ award winners share with us how they researched and wrote their prize-winning stories. Their presentations amount to mini-masters classes in rooting out hidden information and activity and exposing it to broad daylight. These are extremely hard times for the journalism profession. Even in the best of times, you have to be crazy to enter the field. But listening to the presentations, I am experiencing an outbreak of “rational.”
Yes, I reflect. Now I recall why I became a journalist. I’ll leave out the preaching. You fill in the blanks.
Sunday Morning: Plane to catch. I’m outta here ...
Friday, April 17, 2009
But first more “toots” from Tooter:
Thursday Evening: I wrap up yesterday’s blog piece and head down to a conference buffet social. There must be 300 journalists in the room, which is a scary thought only if you don’t know that at least half must be “a little bit” bipolar. Crazy goes with the territory. Seriously, no sane person would ever choose to be a journalist. I grab some food and in nothing flat I’m right at home.
Friday Morning: I head for a session on reporting about disasters. A spokesperson from the Dept of Homeland Security and the local port security director are on the panel. I’ve never been an “on the spot” reporter, but with mental illness location and time are no restrictions. A disaster in Florida, for instance, may cause extreme distress to someone watching it on TV in Kansas, who may not realize something is wrong for another six months.
Later Morning: My second session is on mental health. About 50 other journalists are in attendance. I say hi to Randy Revelle as I walk in. We’ve run into each other at two DBSA conferences. Randy is a prominent area politician, openly bipolar, and was the driving force behind mental health parity in the state of Washington. State parity laws, he said, can only apply to about a third of the people who need coverage. You need a federal law for the other two-thirds. Problem is, he says, the legislation that became law last year is riddled with exemptions and loopholes.
Elizabeth McCauley PhD of the University of Washington talks about adolescent mental health. We used to think that the brain was set for life at ages 3,4,5, she relates. Now we know that “everything changes” beginning in early adolescence. This is the time expectations ratchet up, along with increased risk-taking behavior, plus depression, bipolar, and schizophrenia start rearing their ugly heads.
Meanwhile, the brain is laying the foundation for more sophisticated executive function and problem-solving skills. This includes the completion of brain cell genesis, newer myelination, and dendritic pruning.
Jennifer Stuber PhD of the University of Washington talks about stigma, and how the media can report stories that do not play into the public’s fears and misconceptions. I’m heartened by the high level of questioning from the audience. All the reporters here want to do their job better.
Lunch: Sen Ron Wyden (D Ore) is the speaker. He has 14 senators from both sides of the aisle signed on to a bill that would combine private and universal healthcare into a multi-payer system. It you take the $2.5 trillion US taxpayers currently spend on medical treatment, he said, and divide it by the US population, you would be able to hire a doctor for every seven families.
The biggest challenge for reform, he said, is to unpack that 2.5 trillion and redeploy it.
Sen Wyden is addressing a very tough audience, hard-boiled health journalists who have heard it all, but I see lots of pens scratching across lots of notebooks. Lots of nodding heads and knowing smiles. The Senator is clearly making a very good impression.
Late afternoon: A nice long walk along Seattle’s harbor front, a cheeseburger in a local dive, and back to the hotel for a soak in the hot tub. To bed ...
Thursday, April 16, 2009
The present, 6 PM, Thurs: Just woke up in my hotel room from a much-needed nap. To recount:
Yesterday, 3 PM: On the airport shuttle headed into Seattle, I meet two journalists headed for the same conference I will be attending - the Association of Health Care Journalists conference - and a Biblical Studies teacher. Somehow, talking about journalism fits right in with the Bible, not to mention mental health. You have to be crazy to be a journalist - we’re simply recycled Biblical Prophets living out of time.
3:15 PM: I ask the other two health journalists what is the big story on their beats. Without hesitation, health coverage. Twenty-five percent of the people in the state of Texas are without insurance, Jason from Dallas tells me. Add to that all those with crappy coverage, I reply.
3:20 PM: I’m just getting going. You know, I say, some people from Canada may opt to get operated on in the US, but you never hear any serious conversation in Canada along the lines of: Let’s switch to US-style health care. You never hear in New Zealand: Let’s switch to US-style health care.
Don’t get me started.
Today: 6 AM. I get out of bed to answer my wake-up call. Suddenly, I realize I executed the maneuver without my lower back screaming out in pain. Then, on cue, I feel moderate pain. I can work with that.
7 AM: I register for the conference. At the table, I run into a journalist I met at the American Psychiatric Association annual meeting three years back. Over breakfast, he tells me of a cardio conference where the attendees were eating cheeseburgers.
8:30 AM: 40 or so journalists take off on a bus for a day-long field trip.
Fifteen minutes later: We get out at the Seattle Biomedical Research Institute, a nonprofit organization with Bill Gates and Paul Allen money in it. Among other things, the Institute is working on vaccines for TB and Malaria. Unlike Big Pharma, this is “discovery-based,” research moving toward “translational” research. Big Pharma only gets interested much further down the development path.
TB has never gone away from the global scene, with 16 million active cases in the world. Two billion people actually carry live TB, which amounts to a ticking time bomb, Dr David Sherman, who heads up the Institute’s TB research, tells us.
A little later: We learn that the Institute has a malaria vaccine that has been successfully tested on rats and will be tested on humans soon. Dr Stephan Kappe, who is developing the vaccine, tells us that many malaria parasites have developed a resistance to drugs. In his opinion, the only way to eradicate malaria (there are 3 to 5 million cases a year, worldwide) is with a vaccine, like smallpox).
Late morning: I’m in a virtual operating room on the medical campus of the University of Washington applying my stethoscope to the skull of a virtual (robotic) patient. (What is wrong with that sentence? Not telling.) We are about to apply anesthesia to the “patient,” who is to be operated on for an ankle injury. The doctor (a real one) asks the patient how he hurt his ankle.
“I was dancing,” the patient replies.
“What was a white man doing dancing?” I ask.
“I was trying to get a groove on,” he replies. This robot is good.
Later, we send the patient into cardiac arrest. I perform a magnificent job applying the paddles backward.
Lunch: Another part of the UW campus. It’s all about surgical robots and performing surgery over the internet. A doctor live from Munich moves small objects from pegs in a room two stories down from us. Way cool.
A little later: MacArthur Foundation “genius award” winner Yoky Matsuoka shows us the robotic hand she and her team have in development. Super way cool. More Paul Allen money
Late afternoon: Last stop, the Allen Institute of Brain Science. Yes, that Paul Allen. I get to see brain tissue for the first time. I’m about to get out my camera, then put it back. This is not just tissue. The others in the room sense it, too. Cameras go back in the bags.
The scientists here are mapping out the human brain, along with the genes expressed in the brain. Last year, they finished mapping the mouse brain. They’re looking to finish mapping the human brain in 2010.
Back to the hotel, nap, function right now.
More “toots” later ...
Wednesday, April 15, 2009
Today, Wed, 11:50: I’m 30,000 feet over Reno, midway between San Diego and Seattle, en route to a conference put on by the Association of Health Care Journalists. I’m used to attending conferences where I’m the journalist among patients or psychiatrists or researchers. This time, I will be an attendee amongst journalists. I have no idea what I’m in for.
Yesterday, Tues Morning: I wake up with every muscle in my lower back fused together. To paraphrase Bill Clinton, I feel my pain. I’m booked for a flight to Seattle tomorrow to attend a conference and this does not bode well.
Later, Tues Morning: Last week, my friend in LA Louise ordered me to plant tomatoes. Five days later, my tomato paraphernalia is still sitting in the spot where I left them. It’s now or never. Despite my back, I get the seedlings into four large pots, along with potting soil, which I am told is vital to the endeavor. It is my intention to nurse the things to their inevitable death, then proclaim with a clear conscience my best intentions to Louise. (“See, Louise. I tried. I really did, but plants hate me. Even basil hates me.”)
Tues Afternoon: Packing decisions. If I don’t pack any underwear, I can get everything into one bag. Just kidding. Every trip I always leave one thing behind. What will it be this time?
Tues 5:30 PM: I’m checked into a Quality Inn near the airport. This is a strategic decision My intention is to wake up rested for tomorrow’s flight. The potential for messing up my sleep and not being able to recover on the road poses serious risks with my illness. With my back acting up, I’m starting to look prescient. Unfortunately, it looks like someone filled the hotel’s hot tub with Metamucil, so I give a warm soak a miss and take a short nap instead.
Tues Evening: I’m in the lobby of UCSD Hospital, ten minutes from my hotel. The previous day, someone I know a little bit - a loved one of one of my water volleyball mates - was admitted to intensive care following a motor vehicle accident. I’ve already been up to the ICU. Now I’m waiting with some of the water volleyball crew and other friends from the resort where we play for our mate to show up. Last week, I did a blog piece on water volleyball and the benefits of play and acting like we’re five years old. Suddenly, in the same company, life is very serious.
Early Wed morning: I’m up at 6:30. My back is still killing me, but not nearly as bad as the day before. I’m reasonably well rested. I can leave my car at the hotel. The hotel will drive me to the airport, ten minutes away. I’m relaxed, ready to go.
10 AM: I’ve survived the ordeal of airport security and am boarding my flight for 10:30 take-off.
10:50 AM: I’m nodding off.
11: 50 AM, the present: I wake up and rifle through my bag for my iPod. No earphones! So that’s the thing I must have decided to leave behind when I packed.
This is John McManamy for Tooter. Keep posted for more “toots.”
Tuesday, April 14, 2009
Kay Jamison PhD is without equal in articulating the points of view of both an expert and a patient, with the co-authorship of the definitive text on bipolar and the leading bipolar memoir to her credit. But what makes Dr Jamison truly worth listening to is the simple fact that she is leading a successful life.
My friend Cristina Romero was present last year when Dr Jamison addressed a DBSA group on the east coast. Over to you, Cristina ...
Thank you, John.
Dr. Jamison spoke about many thought-provoking subjects as they relate to mental illness, one of which I’d like to share with you here. The subject here is getting treatment to develop a stable ecosystem within a brain that suffers from mental illness.
Dr. Jamison read from her classic memoir, "An Unquiet Mind," in which she recalls her pre-lithium highs:
"The ideas and feelings are fast and frequent, like shooting stars, and you follow them until you find better and brighter ones. Shyness goes. The right words and gestures are suddenly there, the power to captivate others a felt certainty."
But when the mania turns into manic psychosis, she wrote:
"The fast ideas are far too fast and there are far too many. Overwhelming confusion replaces clarity. Memory goes. Humor and absorption on friends’ faces are replaced by fear and concern. Everything previously moving with the grain is now against. You are irritable, angry, frightened, uncontrollable and enmeshed totally in the blackest caves of your mind. You never knew those caves were there."
“I don’t know that anybody really knows how the brain mutates and changes over the years," Dr. Jamison acknowledged in response to a question from her audience.
"I would say at the most simplistic level is that if you took a scan of your brain on one manic episode, you would prefer to have that brain than the brain on five or six or seven manic episodes."
The cumulative effect on the brain of repeated manias, she said, is "one of the most compelling arguments for staying on your medications and being aggressively treated."
"You can’t keep having heart attacks," she emphasized. "You can’t keep having strokes. You can’t keep having depression and you can’t keep having manias, without paying a biologic cost.”
The longer the brain is stable, Dr. Jamison went on to say, the longer it stays stable:
"The brain is like a pond. It’s like an ecosystem. You want to get the ideal ecosystem and then you don’t want to disturb it very much. So you don’t want to be messing around with drugs. You don’t want to be messing around with sleep. You don’t want to be messing around with alcohol. You want to really create a stable environment."
Dr. Jamison said the early manias "were absolutely intoxicating states.” “It took me far too long to realize that lost years in relationships cannot be recovered. The damage done to oneself and others cannot always be put right again and the freedom from the control imposed by medication loses its meaning when the only alternatives are death and insanity.”
“The major problem in treating bipolar illness from a clinical perspective is not that there are no effective medications, because there are. It is, rather, that patients so often refuse to take them. Worse yet, because of lack of information, poor medical advice…or fear of personal or professional reprisals, they do not seek treatment at all.”
“But once you’ve figured that out – the combination of medications, psychotherapy, lifestyle routine, and so forth – then you have a real shot at having a stable life. It’s really very frustrating, because that initial period has a level of difficulty.”
Dr. Jamison takes lithium. For many years, because she was on high doses of lithium, she suffered serious side effects. Standard practice is now lower doses, on which she has fewer side effects now. Her first two rules of her "Rules for the Gracious Acceptance of Lithium into Your Life" are: “1) Clear out the medicine cabinet before guests arrive for dinner or new lovers stay the night. 2) Remember to put lithium back into the cabinet the next day.”
Monday, April 13, 2009
Last week, the LA Times reported that College Hospital in Costa Mesa, 40 miles south of LA, "dumped" Steven Davis, whom they had diagnosed with schizophrenia, bipolar, and schizoaffective, outside of Union Rescue Mission located along LA's infamous Skid Row.
Literally, the hospital loaded him into a van, drove him 40 miles north, and dropped him on the street. This is what they call a "dump." College Hospital dumped Steven Davis the way some people dump their excess garbage in shopping mall dumpsters - surreptitiously, with hopefully no one watching.
But the Union Rescue Mission was watching, and when they complained, the van returned - and dumped Steven outside another shelter.
The city attorney reported that College Hospital was responsible for dumping 150 mentally ill in this fashion over 2007-2008. Steven Davis was a key to the city attorney's office making its criminal case. As part of a settlement, the hospital will pay $1.6 million in penalties and charitable donations.The hospital denies any wrongdoing.
In case you are experiencing deja vu, Michael Moore's 2007 documentary, "Sicko," showed security cam footage of a 63-year-old homeless and disoriented woman, Carol Reyes, wearing only a thin hospital gown, dumped in front of the same Union Rescue Mission by Kaiser Permanente's Bellflower Hospital.
Criminal charges were filed against the hospital's officials, and Kaiser paid a large settlement. LA authorities have been cracking down on dumping.
Doing something about Skid Row is far more problematic, an approximate 4x4 square block area where 7,000 to 8,000 homeless - many of them with mental illness - sleep on filthy streets, conveniently out of sight and out of mind to the rest of the world.
On April 24, Hollywood will be giving the area a lot more visibility. That is the day of the much-anticipated release of "The Soloist," starring Jamie Foxx and Robert Downey Jr, based on a book of the same name by LA Times columnist Steven Lopez. The book and movie chronicle the unlikely friendship forged on Skid Row between Lopez and Nathaniel Ayers, a gifted cellist who lost his mind to schizophrenia while attending Julliard.
We see only the homeless. But Nathaniel's story is all too typical. Think of schizophrenia as a developmental disease. Kids are leading normal lives. Then - at say age 17 - something happens. One minute they're doing well in school and looking forward to college. Then they start acting a bit strange. Then - bam! - all at once, they are robbed of their minds, their humanity - everything.
Just like that it's over. The illness has a poor outcome, made much poorer by our appalling health care system and the unconscionable way our winner-take-all society turns its back on people they view as losers.
I'm sure "The Soloist" will bring this out loud and clear. I loved "Shine." I loved "A Beautiful Mind." I'm sure I will be profoundly moved by "The Soloist." But if nothing changes for the better in this country as a result, then there will be no feel-good ending.
The Soloist trailer.
Sunday, April 12, 2009
Play is a vital element in our recovery. So much so, I contend, that if you are not spending at least part of your time acting like a child then getting through adulthood is going to pose a major challenge.
Today I woke up with the bright idea of making a podcast based on my previous four blog pieces on the very vital topic of play. This is my first-ever podcast. It's a fun piece that takes only five minutes. Simply click on the title link to enjoy. Then click the "Back" button on your browser to return here. Enjoy ...
Friday, April 10, 2009
As you can see from my previous three blogs, I take the subject of play very seriously.
I am one of those rare people who love my work. But I tend to fall into the dangerous trap of confusing work with play. Work - even when it's fun - is all about deadlines and responsibilities and no end of stresses. Play - even serious play - is not.
So what about hobbies? Beneficial, yes, but I tend to engage in mine in "adult" mode. I love to cook, but working a knife with four burners going and something in the oven is not the time to get in touch with my inner child.
Socializing? Getting out with others? Same thing. Adult mode, especially when I'm networking, even when I'm cracking jokes. Certain social norms are in play - or, more accurately, at work. Fart jokes, for instance, are off-limits.
Kicking it up a notch? As in white men dancing? Your honor, I rest my case.
Robert Putnam's 2000 book, "Bowling Alone," is a metaphor on our increasing social isolation and lack of community - from dwindling civic involvement to not getting together to have fun. Participation in organizations such as PTA is way down, as are bowling leagues.
Is bowling play? Close enough. Well - guess what? - we've just about eliminated it. Hardly anyone bowls in regular groups, anymore. It's as if someone said to us: You're adults now. No more recess.
Oh, and by the way, no more recess for your kids, either. We're gonna turn them all into humorless industrious drudges.
Hmm, child bipolar on the rise, along with ADHD, various conduct disorders, depression, anxiety, fatigue, and obesity. Could there be a connection?
The pressure is always on. Our way of relieving stress is to work even harder. We experience temporary relief at nailing a deadline, only to face our next one with a worn-out brain, not a fresh one. Trust me, our brains weren't built for this.
If I bowled, I would make sure to put on a funny shirt at least once a week and find a tribe of like-minded people to share fart jokes with. I happen to play water volleyball, so shirts, even funny ones, are not allowed in the pool. But fart jokes rule.
Fart jokes is my metaphor for playing like the true experts - five-year olds. If I were to write another book, I would want to call it. "Fart-Joking Together." But my publisher would probably insist on changing it to "The Wisdom of Being Five." I can live with that.
Or maybe "The Stupidity of Being Seven." Really, I have no idea how I survived age seven, but that's when I mastered kickball and learned an important life lesson in the process:
I arrived at school that day determined to kick a home run. No doubt about it. I could visualize it perfectly in my mind. All morning, when I was supposed to be learning multiplication and cursive handwriting, I was focused on my game. Finally, my moment came.
The ball rolled toward home plate. I ran to meet it. I lined up my shot and aimed my kick as hard as I could in the direction of right field ...
The ball skittered off the side of my foot. A girl in a pink dress picked it up and touched me out.
A week or two later, I got my home run. I trotted slowly to the ball and gave it a controlled kick. My foot hit the ball's sweet spot and the thing sailed over everyone's heads in center field. Even in my wildest dreams, I could never imagine kicking the ball that far.
All these years later, I vividly recall watching that ball take off like a rocket. No, I take that back. This was 1957, the year the Soviets launched Sputnik. Their rockets worked. Ours blew up on the launching pad.
Anyway, here I was, standing at home plate, surveying my handiwork sailing higher than our best rockets could fly, too surprised to even start running. Then I collected my wits and headed for first, then second, third ...
And they want to take that away from kids? Guess what? They're not going to take it away from me.
Sign up now: World Adult Kickball Association.
Thursday, April 9, 2009
A number of years ago, while researching for my email Newsletter, I came across reports of "laughter" groups in Germany and India.
What? I thought. You actually had to teach - or at least encourage - people to laugh? Apparently so. Two years ago, at a national NAMI convention, I encountered a bunch of people who had gathered for a group laugh. There is even an organization that conducts laughter workshops.
Laughter comes wrapped in play. In a recent blog, I noted:
"Play is a vital element in our recovery. So much so, I contend, that if you are not spending at least part of your time acting like a child then getting through adulthood is going to pose a major challenge."
Let me assure you, I have acting like a child down pat. I cultivate a playful spirit, which has not only served me well, but is directly responsible for me not quitting on life. But a playful spirit is not the same as play, as I learned when I first started playing water volleyball two and a bit years ago.
I recall driving home from that first outing with my good friend Paul, who introduced me to the game. "You know," I said, "I haven't felt like this since I was five."
Okay, maybe nine or ten, but five was a very good year for me. Try to recall life at five. If you are having difficulty, you really need to be reading this:
Four or five years ago, Kay Jamison (who needs no introduction) published "Exuberance." The book did not sell nearly as well as her previous books, which is a shame, because what she has to say is vital to our well-being.
In her book, Dr Jamison mentions the disturbing trend toward eliminating recess in schools. Play is critical in the development of kids and young mammals, she says, from ensuring a fully-functioning nervous system to acquiring the intelligence and skills they will later put to use as adults.
When I talked to Dr Jamison about this, she told me that over-regimenting kids’ lives can have enormous consequences for our society.
Kids have the luxury of play under the protection of adults, Dr Jamison explained to me. Later, it becomes their turn to provide that same level of comfort and protection to their offspring. Nevertheless, some adults manage to retain their childlike capacity to respond in wonder to the world around them the rest of their lives, and Dr Jamison's book is full of these examples (such as Teddy Roosevelt).
But these are people who bring a certain lust for life to their work. Work! What about play?
More later ...
Further reading from mcmanweb:
In our phone interview, Dr Jamison stressed that exuberance comes in degrees. The people in her book tend to experience it in supersized dimensions, but even those who are depressed can catch it like a contagion. "Joy infects," she writes. "Expressive individuals strongly influence the moods of those who are unexpressive."
Notwithstanding her observation of exuberance as a temperament, the author cites a 1980 study of hers where 35 bipolar patients reported positive benefits to their illness, including increased sensitivity, sexuality, productivity, creativity, and social outgoingness. Virginia Woolf, who is best remembered for her madness and suicide, tends to be forgotten as the person who lit up London’s Bloomsbury group. Said a colleague: " I always felt on leaving her that I had drunk two excellent glasses of champagne. She was a life-enhancer."
Wednesday, April 8, 2009
Saturday morning water volleyball: The server is lining up her shot. She is poised to fire a cannonball down the left side when Paul on the other side lets out a vocal operatic rumble.
The server reloads and composes herself.
"And the next one will be real!" Paul shouts.
The entire pool cracks up. People in their 50s laughing at fart jokes. It's like we were five years old, but that's the point. Read on:
"Play" resumes. The ball is being slapped from player to player at pinball speed. We're all in the zone, fielding impossible shots. A rocket is returned to our side of the net. One of our guys manages to get a hand on it. It bounces off at an unexpected angle into my airspace in the front corner, headed high and out of bounds.
No time to think. I lunge backward like a painter who has fallen off a ladder and extend the only arm I seem to have available, praying for Inspector Gadget powers. I manage to get my fingers on a piece of the ball, just enough to send a high floater arcing parallel to the net. The players in the front row on the other side are licking their chops in anticipation.
Oh oh, one of them is about to make me look like an idiot.
But just then, the earth unexpectedly stops rotating. Gravity is temporarily suspended. The ball simply hangs in the air on our side of the net. Then it starts its slow descent to where our best player is lurking.
"Oh, crap!" I hear from the other side. Our best player leaps out of the water like a dolphin at Sea World and effortlessly dispatches the waiting orb on its mission of doom.
Suddenly, the atmosphere on our side of the pool erupts in the loudest display of group noise in recorded history. The Ross Ice Shelf breaking into icebergs at three in the morning is the nearest equivalent sound. Even those on the other side are nodding their heads in silent appreciation.
What a volley! You can see it on every face in the pool. Life doesn't get any better than this.
Yes it does. It was my "assist" that set up the kill. Who cares if it was dumb luck? A shorter person would have missed the ball completely, and everyone in the pool is shorter than me.
I did it! I did it!
Before we know it, our allotted 90 minutes of pool time has elapsed. Time to take down the nets and floating boundaries and vacate the pool. There will be another game in the afternoon.
My good friend Paul introduced me to water volleyball two and bit years ago, shortly after I moved from New Jersey to southern California. At the time I was hesitant about joining him. I'm clumsy, with bad eyesight. In school, I was the smallest kid and always the last one picked on a team.
Last thing I need is an activity that brings up all those bad memories.
Instead, the game casts me back to an earlier and far more pleasant time in childhood - ages five, six, seven, eight, nine - when we played with other neighborhood kids in backyards, driveways, pieces of empty street, and vacant lots. Baseball, kickball, dodgeball, football, badminton, hide and seek ...
There were no adults organizing the game for us, much less kibitzing from the sideline. We improvised our own rules as we went along, with no one in authority to correct us. Sometimes it was baseball with two bases. If someone was trundling along a little brother, we suspended play to give the little brother a turn at bat. The play was the thing.
PLAY was the thing.
How on earth, in our transition from childhood to adulthood, did we ever forget that? Where - where - did we go wrong?
Much more to come ...
Monday, April 6, 2009
My good friend Therese Borchard at Beyond Blue has been urging me for some time to do a blog piece on the benefits of play. Her piece today, Do Something You Love, serves as a timely reminder why I need to get crackin'. Therese writes:
Last summer, when I was going through a bout of depression, a friend told me to do what made me happy as a kid. So I tuned up my mountain bike and headed to the trails for a few hours. Afterward I treated myself to an ice-cream cone: mint-chocolate chip with LOTS of chocolate sprinkles on top. That was exactly how I spent so many summer days as kid.
My brain recalled it, because I could hear a voice say, "Oh yeah. I remember this. It was fun ... before your dad put you on treadmill and a diet and you were afraid to eat ice-cream again."What happens to us when we get older? Are we programmed to actually forget how to be happy?
Remember what it was like when you were five? When you and your friends had that feeling of never wanting to stop? Until your moms called you in for dinner?
Why can't we bring back some of that?
Trust me, I will be writing an awful lot on this. Play is a vital element in our recovery. So much so, I contend, that if you are not spending at least part of your time acting like a child then getting through adulthood is going to pose a major challenge.
In the meantime, in case you have forgotten what play is like, here is a video from my two resident experts, Rocky and Bullwinkle at age six weeks. Enjoy ...
Sunday, April 5, 2009
Last week, I spent three days at a schizophrenia conference listening to some of the smartest people in the world, and I have the autograph of a Nobel Laureate (Arvid Carlsson) to prove it.
But the people I learn from the most is you - patients and loved ones - and I have this month's latest survey to prove it.
"What is holding you back most in your recovery?" I asked you over the month of March. Readers were free to check off as many of the nine answers as they wished. (169 respondents accounted for 490 answers, averaging 2.9 answers per person.) You could have knocked me over with a feather with the results:
Only 35 percent of you checked off, "Unresolved illness symptoms." In other words, a full 65 percent of you felt that your illness no longer posed an obstacle to your recovery.
Does this mean psychiatry has a high success rate? Um ... not exactly. In my January survey, only 14 percent of you told me that you "were back to where [you] wanted to be or better than [you] ever could have imagined."
What is going on here? Could it be that we have other stuff we need to deal with? This is where it gets interesting:
Fifty percent of you (representing by far the largest total) responded that the thing holding you back the most is "fears/difficulties in dealing with people." Very closely related (at 35 percent) is "bad living/work/etc" situation.
Clearly, we have major interpersonal issues that need addressing. Without doubt, our respective illnesses play havoc with our ability to get along with people. But you are telling me that people problems have taken on a life of their own, and it's not hard to imagine why.
Often, we can't go back to our old relationships or work. As we become isolated and cut off, our social skills atrophy. We lose confidence. We are overwhelmed.
Half of you are telling me that you see the world as a threatening and hostile place, and this does not bode well for recovery. We tend to judge personal success by how well we get along with others. Unfortunately, there is no magic pill to help us. But there exists a lot of therapeutic and social help. You have identified this issue as your top priority. Please do not hesitate to act.
Also related to this (at 32 percent) is "inability to manage fears, impulses, etc apparently unrelated to your illness." Maybe you don't attribute, say, anger, to your illness. Maybe you talk too much or are afraid to speak up. Maybe going with an irrational thought makes you feel good. These are common problems that the general population also experiences, but you have added this twist - your sense of lack of control is holding as many of you back in your recovery as unresolved illness symptoms.
Your clinician may have overlooked all this, but clearly you haven't. You know what you need to do.
We all have "bad personal habits" (even those with good personal habits), but 36 percent of you felt they were impeding your progress. Likewise, 30 percent of you report that "making excuses" constitutes a major problem.
Congratulations at setting out a recovery agenda: You need to change; no excuses. But do keep in mind: Change does not come easy. Set modest goals, forgive yourself when you mess up, and make full use of peer and professional support.
Finally: Meds side effects (24 percent), addictions (21 percent), and physical ailments (21 percent).
Take home message: There is no such thing as "just depression," "just bipolar," "just anxiety," and so on. A lot of other stuff is going on. Whether wrapped in your illness or independent of it, it all needs to be addressed, because if it isn't - recovery is simply not going to happen
I can say this with great authority, because this is what you - my valued readers - have told me. Be smart. Live well ...
Previous survey results:
Have Our Treatments and Therapies Failed Us?
Meds and Wellness: Like Rolling a Rock Uphill?
Friday, April 3, 2009
Antipsychiatry dogma contends that because science has failed to show any link between underlying brain dysfunction and psychiatric symptoms that mental illness is a myth and psychiatry is a fraud.
Antipsychiatrists have been getting away with this for years. Mental illness, after all, is highly complex, which doesn't lend itself to gift-wrapped causes and effects the way a simpler brain illness - say Huntington's - does.
Wait - I take that back. Last night, at my local NAMI here in San Diego, I heard Neal Swerdlow MD, PhD of UCSD talk about obsessive-compulsive disorder (OCD).
OCD is a failure in the brain to screen out certain thoughts. People with OCD, for instance, may drive themselves (and others) crazy obsessing over whether one's pet poodle has succeeded in picking three sets of door locks and is now being carved up for lab experiments.
The thought is ridiculous, but the consequence is deadly serious. Literally, the victim cannot stop the thought. The thought takes over to the point where the victim may feel compelled to leave work and drive home. Should that happen enough times, the victim becomes both unemployable and a social leper.
Dr Swerdlow opened with a short clip of a Huntington's patient. Individuals with Huntington's experience uncontrollable movement. The brain, literally, fails to screen out certain movement impulses. The area of the brain responsible, the cingulate, is the same area of the brain most implicated in OCD.
With Huntington's, of course, the symptoms are obvious (uncontrollable movements). Of course something mechanical in the brain has to be wrong. Uncontrollable thoughts and inner torment, on the other hand, are invisible. Of course psychiatry is at fault for creating a mythical illness out of thin air in order that Big Pharma can sell more drugs.
Forget about the victim.
The problem with OCD, Dr Swerdlow explained, lies in "gating." I have discussed gating on this blog numerous times in relation to schizophrenia. The victim is overwhelmed - too much sensory input, too much thought, too much emotion. The brain can't filter out the irrelevant stuff, cannot focus, cannot function, cannot cope.
In a normal brain, on a cellular level, the neuron essentially makes a "yes-no"decision in response to a neurotransmitter message from another neuron. Air conditioner noise? "No." Not relevant. Tune it out. Instructions from your doctor? "Yes." Very relevant. Pay attention.
On a systems level, the thinking and reacting areas of the brain - and areas in between - are organized around processing and prioritizing all the "incoming." These circuits are referred to as "cortico-striatal-thalamic-cortical loops" and similar-sounding names. Self-correcting feedback is both top-down and bottom up and exists in interdependent relationships with parallel loops.
Neurons that specialize in gating tend to exist in the mid-brain regions, such as the cingulate. In a famous set of experiments performed two decades or so ago, OCD subjects (ones obsessed with cleanliness) shared a brain scan machine with a "dirty" sweat sock. Their respective brain loops lit up like a Christmas tree (much like the image on the right). When exposed to a "clean" sock, their brains quieted down (much like the image on the left).
We know that with Huntington's the neurons in the cingulate die off. There is no gating function to regulate excess dopamine signaling related to movement, and the brain fails to compensate by recruiting gating neurons from other areas of the brain.
Similarly, with OCD, we know that the cingulate is operating below capacity, with about 15 percent less neurons. In some cases, serotonin antidepressants may enhance cingulate function. Or the brain may be successful in recruiting gating neurons from other areas of the brain. This is why CBT and other talking therapies can work so well for OCD and other mental illnesses - often, we can literally train our brains to lay down new roadwork.
Because of our knowledge of cause and effect and our ability to pinpoint an exact location, brain surgery to treat OCD is not only feasible, it is being performed, albeit very rarely and only as a last resort for severe cases on treatment-refractory individuals. Capsulotomies and cingulotomies essentially compensate for lack of gating by surgically turning off the flow of certain brain circuits.
In February this year, the FDA approved deep brain stimulation (DBS) for OCD. DBS has a history of use in Parkinson's and is showing promise for depression. A lead is inserted near the affected brain area. Electrical pulses travel up wiring from a pacemaker device implanted below the brain. For OCD, the signaling from the lead has the effect of interrupting the thoughts that the cingulate is supposed to be screening out.
Brain surgery for psychiatric illness, of course, raises a whole host of ethical and other issues, and you can expect antipsychiatry to add its unmodulated voice to this conversation. But in the context of this blog piece, think of surgery for OCD as the icing on the cake.
Mental illness is indeed, unequivocally real. We can point to the brain systems. We can link breakdowns in these systems to behavior. We have treatments based on this knowledge.
In the face of such overwhelming evidence, why would antipsychiatry think otherwise? Hmm ... defective thought gating?