Monthly Archives: March 2009

Spirit Heart Sound

Swami Sarvagananda & Party

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Parvardigar- Pete Townsend

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Innocence mission

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Ah- nee mah: Spirit of the Southwest

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Blind Faith

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Filed under Free Music, JN-Building 50, mp3, Music, Ramakrishna, Spirituality

Mostly the teachings of a Mad Man

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Moon not exactly full

Last nights show was great, though a week late. I’ll get the MP3 up as soon as possible for the archives. Only 3 callers who hung on (several hang-ups when lines were busy). Enough on that topic.

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My Friend, Senor Ref. C. on Ward 34D

Yesterday I saw a man at the “hospital” where I work. Of course, the term hospital is not a true description of what happens to people there. So much suffering, so much torment. but enough of that- this is the story:

(For those of you who are unfamiliar with my work, I am a loose cannon patient support person at a “Forensic Mental Health Facility”- read: a place where people are kept who have been judged by the courts of Oregon to be “Guilty but Insane”.)

So, this guy, I’ll call him “Mr. Castle” for the purpose of confidentiality; I met him the first couple weeks I was there at a time I was doing Hospital Improvement Surveys as a tool for getting to know the place and it’s people. He live in a gero ward, 34D, with other older and physically limited folks. I really enjoyed talking with him. He is smart and very thoughtful, insightful (despite his current diagnosis of dementia and organic brain disease). He is a deeply spiritual man.

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He transferred from the Oregon State Prison a few years back when they could no longer care for him adequately. He is serving a life sentence, convicted of a “terrible mis-deed”  (his words), or, conversely, “Murder” according to his chart. (I once asked him about his treatment in prison compared to the Hospital- he said that Prison was where God had opened his eyes to the world of the spirit and the true purpose of his life. Here he was just surviving and trying to keep devotion to “God and The Mystery” while watching what he realized was a progressive condition that will eventually take away his mind.) In his former life he was a father of 9 children, a US war veteran and a social worker. He has studied psychology and is extremely smart. His memory sometimes fails him. He has had strokes that have affected his mobility. He has PTSD and traumatic brain injury from his military service.

I used to go see him every week the first few months I was working there- I enjoyed our talks. His religious devotion along with a penetrating insight is a joy. Lately I haven’t seen him in at least 2 months. I’ve been busy as I’ve had to work toward a balance in my efforts to be useful to the over 600 patients who live in that island of  Mental Hell Treatment.

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I decided to go see Mr. Castle yesterday in the morning after I finished some paperwork. I didn’t think he would remember me. I did not call ahead. I walked to 34D, across “campus” about a quarter mile or more from my office.

I walked into the downstairs lobby. Mr. Castle was with a small group of staff and patients waiting for the elevator to go back to the ward from “crafts class”. He saw me with a puzzled look. I said, “You might not remember me. Can you recall my name?”

He said, “Of course, Mr. Rick. You have arrived just in time. I will only need a small amount of your attention. We can be through in about 20 minutes.” I had a very strong feeling he was seeing me for what he considered an appointment and that he was glad I was not late. “This will work well because I have lunch in about a half an hour from now,” he added.

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We went up the elevator, through the locked doors that get us eventually into 34D. He said, “It will only take me a few minutes to get my papers together.” He walked down the hall (with his walker) and gestured for me to follow him.

In his room, he rummaged through papers he had been keeping, seemingly for his anticipated discussion with me. The papers included print-outs from a group he had attended and some writings of his own (in Spanish, but he translated).

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First he read to me the key points in his recent writings. Part had to do with a topic we had discussed before- the “purpose of Man in God’s plan and the Ultimate Penetration of the Holy Mystery”. As he translated his own writing he came to several places where he could not find an English equivalent. The most simplistic summary would be: Man is composed of 3 principles- Spirit, Soul (to this he included mind, emotion, habits, attachments) and Body (simply the physical form and it’s basic needs for survival- not the physical desires, which he insists are attributes of Mind). “So, these 3 things make a man. They are all required for Man to fulfill his purpose and promise in the world. One can not outweigh the others or there will be problems, illness and “mis-deeds”.

Then he pulled out a handout from a group he had attended on the ward. He said, “I am a college graduate with much training in psychology. So, you see, I am capable of focusing my mind in the study of this information. I have applied my concentration to understanding what is here.” He had marked up the pages in various parts- mostly underlines and asterisk.

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“Psychology is a great and powerful science”, he said, “but it is flawed and does not have a complete understanding of who we are and why we are.” He went on to critique the handouts, respectfully but completely. I won’t go into detail.

In summary, Mr. Castle explained that too much emphasis on the mind and it’s needs and habits is detrimental to a Man in the fulfillment of God’s purpose. The Spirit and the Body must receive appropriate nourishment. Without proper sustenance of each element of our being we cannot penetrate the mystery. He told me a story from his life, the gist of which was that his mind had led him into “terrible misdeeds”. His eyes became red and he began to cry. “I have been locked up for 30 years and suffered great remorse because I did not know the proper balance of my whole being”.

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Then he stopped crying. His eyes cleared. He said that everything that had happened was part of his education. He said, “Man always wants to blame God or blame anyone else for their own mistakes. Adam blamed Eve and God, Eve blamed the serpent and God. Ever since then all Man wants to do is place the blame on someone else.”

Then he said it was time for me to go. His lunch would be arriving soon.

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Study 15

From the Washington Post:

A Silenced Drug Study Creates An Uproar

By Shankar Vedantam
Washington Post Staff Writer
Wednesday, March 18, 2009; A01

 

The study would come to be called “cursed,” but it started out just as Study

15.

It was a long-term trial of the antipsychotic drug Seroquel. The common wisdom

in psychiatric circles was that newer drugs were far better than older drugs,

but Study 15’s results suggested otherwise.

As a result, newly unearthed documents show, Study 15 suffered the same fate as

many industry-sponsored trials that yield data drugmakers don’t like: It got

buried. It took eight years before a taxpayer-funded study rediscovered what

Study 15 had found — and raised serious concerns about an entire new class of

expensive drugs.

Study 15 was silenced in 1997, the same year Seroquel was approved by the Food

and Drug Administration to treat schizophrenia. The drug went on to be

prescribed to hundreds of thousands of patients around the world and has earned

billions for London-based AstraZeneca International — including nearly $12

billion in the past three years.

The results of Study 15 were never published or shared with doctors, even as

less rigorous studies that came up with positive results for Seroquel were

published and used in marketing campaigns aimed at physicians and in television

ads aimed at consumers. The results of Study 15 were provided only to the Food

and Drug Administration — and the agency has strenuously maintained that it

does not have the authority to place such studies in the public domain.

AstraZeneca spokesman Tony Jewell defended the Seroquel research and said the

company had disclosed the drug’s risks. Since 1997, the drug’s labeling has

noted that weight gain and diabetes were seen in study patients, although the

company says the data are not definitive. The label states that the metabolic

disorders may be related to patients’ underlying diseases.

The FDA, Jewell added, had access to Study 15 when it declared Seroquel safe

and effective. The trial, which compared patients taking Seroquel and an older

drug called Haldol, “did not identify any safety concerns,” AstraZeneca said in

an e-mail. Jewell added, “A large proportion of patients dropped out in both

groups, which the company felt made the results difficult to interpret.”

The saga of Study 15 has become a case study in how drug companies can control

the publicly available research about their products, along with other

practices that recently have prompted hand-wringing at universities and

scientific journals, remonstrations by medical groups about conflicts of

interest, and threats of exposure by trial lawyers and congressional watchdogs.

Even if most doctors are ethical, corporate grants, gifts and underwriting have

compromised psychiatry, said an editorial this month in the American Journal of

Psychiatry, the flagship journal of the American Psychiatric Association.

“The public and private resources available for the care of our patients depend

upon the public perception of the integrity of our profession as a whole,”

wrote Robert Freedman, the editor in chief, and others. “The subsidy that each

of us has been receiving is part of what has fueled the excesses that are

currently under investigation.”

Details of Study 15 have emerged through lawsuits now playing out in courtrooms

nationwide alleging that Seroquel caused weight gain, hyperglycemia and

diabetes in thousands of patients. The Houston-based law firm Blizzard,

McCarthy & Nabers, one of several that have filed about 9,210 lawsuits over

Seroquel, publicized the documents, which show that the patients taking

Seroquel in Study 15 gained an average of 11 pounds in a year — alarming

company scientists and marketing executives. A Washington Post analysis found

that about four out of five patients quit taking the drug in less than a year,

raising pointed doubts about its effectiveness.

An FDA report in 1997, moreover, said Study 15 did offer useful safety data.

Mentioning few details, the FDA said the study showed that patients taking

higher doses of the drug gained more weight.

In approving Seroquel, the agency said 23 percent of patients taking the drug

in all studies available up to that point experienced significant weight

increases, compared with 6 percent of control-group patients taking sugar

pills. In 2006, FDA warned AstraZeneca against minimizing metabolic problems in

its sales pitches.

In the years since, taxpayer-funded research has found that newer antipsychotic

drugs such as Seroquel, which are 10 times as expensive, offer little advantage

over older ones. The older drugs cause involuntary muscle movements known as

tardive dyskinesia, and the newer ones have been linked to metabolic problems.

Far from dismissing Study 15, internal documents show that company officials

were worried because 45 percent of the Seroquel patients had experienced what

AstraZeneca physician Lisa Arvanitis termed “clinically significant” weight

gain.

In an e-mail dated Aug. 13, 1997, Arvanitis reported that across all patient

groups and treatment regimens, regardless of how numbers were crunched,

patients taking Seroquel gained weight: “I’m not sure there is yet any type of

competitive opportunity no matter how weak.”

In a separate note, company strategist Richard Lawrence praised AstraZeneca’s

efforts to put a “positive spin” on “this cursed study” and said of Arvanitis:

“Lisa has done a great ‘smoke and mirrors’ job!”

Two years after those exchanges, in 1999, the documents show that the company

presented different data at an American Psychiatric Association conference and

at a European meeting. The conclusion: Seroquel helped psychotic patients lose

weight.

The claim was based on a company-sponsored study by a Chicago psychiatrist, who

reviewed the records of 65 patients who switched their medication to Seroquel.

It found that patients lost an average of nine pounds over 10 months.

Within the company, meanwhile, officials explicitly discussed misleading

physicians. The chief of a team charged with getting articles published, John

Tumas, defended “cherry-picking” data.

“That does not mean we should continue to advocate” selective use of data, he

wrote on Dec. 6, 1999, referring to a trial, called COSTAR, that also produced

unfavorable results. But he added, “Thus far, we have buried Trials 15, 31, 56

and are now considering COSTAR.”

Although the company pushed the favorable study to physicians, the documents

show that AstraZeneca held the psychiatrist in light regard and had concerns

that he had modified study protocols and failed to get informed consent from

patients. Company officials wrote that they did not trust the doctor with

anything more complicated than chart reviews — the basis of the 1999 study

showing Seroquel helped patients lose weight.

For practicing psychiatrists, Study 15 could have said a lot not just about

safety but also effectiveness. Like all antipsychotics, Seroquel does not cure

the diseases it has been approved to treat — schizophrenia and bipolar

disorder — but controls symptoms such as agitation, hallucinations and

delusions. When government scientists later decided to test the effectiveness

of the class of drugs to which Seroquel belongs, they focused on a simple

measure — how long patients stayed on the drugs. Discontinuation rates, they

decided, were the best measure of effectiveness.

Study 15 had three groups of about 90 patients each taking different Seroquel

doses, according to an FDA document. Approximately 31 patients were on Haldol.

The study showed that Seroquel failed to outperform Haldol in preventing

psychotic relapses.

In disputing Study 15’s weight-gain data, company officials said they were not

reliable because only about 50 patients completed the year-long trial. But even

without precise numbers, this suggests a high discontinuation rate among

patients taking Seroquel. Even if every single patient taking Haldol dropped

out, it appears that at a minimum about 220 patients — or about 82 percent of

patients on Seroquel — dropped out.

Eight years after Study 15 was buried, an expensive taxpayer-funded study

pitted Seroquel and other new drugs against another older antipsychotic drug.

The study found that most patients getting the new and supposedly safer drugs

stopped taking them because of intolerable side effects. The study also found

that the new drugs had few advantages. As with older drugs, the new medications

had very high discontinuation rates. The results caused consternation among

doctors, who had been kept in the dark about trials such as Study 15.

The federal study also reported the number of Seroquel patients who

discontinued the drug within 18 months: 82 percent.

Jeffrey Lieberman, a Columbia University psychiatrist who led the federal

study, said doctors missed clues in evaluating antipsychotics such as Seroquel.

If a doctor had known about Study 15, he added, “it would raise your eyebrows.”

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Not this week

The usual lunar cycle of Mad Liberation by Moonlight radio is suspended this month. Instead of tomortrow night, the show will be broadcast/ webcast on the night of March 20th at 1 a.m. There will be a regular announcement next week. Note, however, that the recording of last month’s show (and others) is on this site on it’s own tab above.

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Mad Poetry from the Asylum

Introductionwish

Poems are by JN- a patient in the 50 building on Ward F. Printed with his permission but anonymous because he didn’t want to mess with all the written approval red tape- which has to be approved by the hospital and somethings just don’t find there way through the process.

JN is a big man- over 6’6″ I think. He wears suspenders and has very broad shoulders. My first impression on meeting him was “Paul Bunyan”. He never hurts anyone- no record of him assaulting staff or patients that I could find.

(JN has published a book of poetry. He has no copy but knows some libraries where it is available. He wrote it in the 1990’s.)

Still, staff are afraid of him. Especially small, female staff. He has a temper and when he’s angry he raises his voice. Usually, it’s over some small issue of arbitrary rule compliance.

Example: the soda machine in the hall outside the ward was out of product in the morning at 10 a.m. when it is on the ward schedule that they can go in the hallway with staff to get a soda from the machine. The machine was filled by noon. At 2 :00 p.m. JN asked to be able to go out to the hallway (6 feet from the ward door) with staff to buy a soda. He was told “No. The time for buying soda is 10 a.m.” JN said, “But the soda machine was empty. We didn’t get our soda at 10 a.m. Why can’t we get something now?” Staff: “That’s the rule. You know the rule. No soda. Wait until tomorrow.” JN raises his voice, red n the face, pointing his finger at the staff person,  one more minor indignity piled on top of so many others, “I am so sick of your rules! I’m sick of being treated like a child!” Staff: “That was a verbal threat. I’m putting it in your chart that you threatened me.”

Being charted as making a verbal threat means that he will have no privileges- sometimes it can mean “ward restriction”- meaning that even some of the small spaces available to sit with others or by yourself, are off limits. Sometimes it means they won’t let you go with other patients to the “yard” for fresh air. There are levels of privilege given within the confines of what is already an extremely restricted space. Level zero is the worst.

JN has not been above level zero in the year or so he has been locked up this time around. He does not expect to ever be above level zero. He has at least 8 more years in the hospital as assigned by the PSRB (the Psychiatric Security Review Board- an agency of the state courts).

Sometime I’ll post JN’s description of how he ended up in the hospital- it will blow you away. It started with a psychotic break, being told what to do by voices. No one was harmed.

BTW- not all of JN’s poetry is as heartbreaking as this- some is inspiring. You know how great it is when you are dreaming and find out you can fly? Sometimes reading his poems I feel like crying and flying at the same time.

I will be posting more of JN’s work over time. Maybe we’ll get permission to show his name- he’d like that. The guy that does the hospital newsletter (which never has patient-produced content since I’ve worked there) says he will print one of JN’s poems in next month’s edition. I’ll be waiting.

love_heart1Girlfriend

written 2/21/09 6:25 p.m.


We watched a butterfly be born into the world

Held hands at a scary film

Thought silly jokes were funny

Smiled with our eyes

I love you was spoken a lot

Mingled with other couples

Broke up once or twice

People talked about our relationship

She wrote when I was gone in jail

This is where we failed

My time was longer than her love

Have a picture of her I can’t tear up

It looks like she is shaking her finger at me in the picture

Wish I wouldn’t have made my mistake

Stakes were too high for me

Alone again with 40 men

Contemplation

written 2/21/09, 5:30 p.m.

The sentences flowed with suicide contempt

Depression is in the suggestion note

He was a perfectionist in writing what was said

It started with “To Whom it may concern”

It was the sadness in-between that will catch your heart

It wasn’t his dear concern that frightened me

It was the truth of his light that shined through

He was the only one feeling

Feeling like life wasn’t much living worth

More of his emotional turmoil churning the past

At last he was drained and insane

Mentally whipped- to no return to serenity

This is was his suggestion

Void was full of that dark stuff

Nothing to carry him to the next moment

At this second he was dead

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All blessings to you, JN, with your deep compassion for the pain of others, your courage in the face of utter dark, with your warrior spirit-heart that lets loose the birds of language you call poems.

I love that you have new poetry for me every time I see you in your prison even though you hadn’t written in years before we met.

My thanks, my prayers for your trust and faith.

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New Song

Inspired by a patient (or 2 or 10 or 600) at OSH- poorly performed, sadly pathetic production values, my voice doesn’t work, the words are after- here it is:

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My name is Robert

I live in Oregon State Hospital in building 35

I can’t say much about my live before this place

I’ve been locked up 40 years, don’t know if I’ll get out alive

You may think worse of me to know I hear spirits in the night

As they walk the narrow halls I hear them cry

Nameless Men and Women who lived out their days in here

Maybe I will join them by and by

Chorus:

Me, I get up early every single day

Look out on the ward and wish that I was far away

But if my life has been wasted you don’t need to see

The only one who knows I’m here is me

When I was young my life here was a nightmare

I was raped by other patients and tied down by MHTs

[Mental Health Technicians- the bottom rung of ward staff]

Then left in the seclusion room while staff would sit outside

Catching up on their reading, just as distant as you please

It’s not so bad here for me now it’s just an awful boring place

We go to groups, the same day after day

And if staff don’t give a damn they mostly leave us all alone

Sometimes we get good ones, they won’t stay

Chorus

I don’t just sit around all day

I’d go crazy if I did, I’ve seen it happen to a few

I used to work on grounds but now we’re locked down pretty tight

It seems as though there never is enough for me to do

My IDT gave me my Treatment Plan last week

[Interdisciplinary Treatment Team- the primary instruments of Ward Rule]

All my goals right there for me to read

It always just amazes me they know me so damn well

Without ever asking what I need

Chorus

*

I’ll put this on the music page later- after I do a better recording of it.

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