My Letter to the Office of Civil Rights in Boston

Dear Keisha Edwards,  JFK Boston Office Of Civil Rights

I am appealing to your humanity to please read this and if you cannot help me to show it to someone at the OCR who will. In GOD’s NAME  I am suffering from an extreme traumatic reaction to what they did to me, both at the IOL, which case you dismissed, and from my recent stay at New Britain General. How can your office simply ignore this sort of abuse, especially when I tell you that it is routine and SOP there, even though what they did to me may have been worse than the norm by virtue of its excess.

Michael E. Balkunas, MD, chief psychiatrist of the W-1 unit of the Hospital of Central Connecticut in New Britain, deliberately misdiagnosed me, who have been on Social Security Disability and SSI since 1980. I was admitted to his unit with a decades long dx of schizophrenia, as well as PTSD since 2009 (largely due to in-hospital care-provider abuse of seclusion and restraints), but he immediately secondarily  (though he made it clear that he considered it primary) diagnosed Borderline Personality Disorder, against all the evidence, which he took pains to gather from my family and outside providers. I believe he did this in order to justify treating me with isolation for three weeks, an inhumane Behavioral Treatment Plan, multiple uses of four-point restraints and ordering me forcibly dragged into a horrific supermax seclusion cell, into which I might have to run to avoid being propelled there bodily by the guards (who were actually given carte blanche as the RNs informed me to inflict physical pain in order to subdue me quickly, because the nurses themselves were not permitted to lay hands on a patient!).Once there, I was then stripped naked of all my clothing "for safety's sake.” 

In the Supermax cell, HOCC's invarying protocol demanded that no matter how calmly or how voluntarily I went in, I would be injected with three "punishment drugs,”  drugs which at times were not on my normal list of medications, e.g. Prolixin, which I haven't taken for decades and to which I have a terrible reaction. My Advance Directive, which I gave them on admission, states that i was not to be given any such “typical neuroleptic” like Prolixin/fluphenazine because of this reaction..Also, despite my repeated assurance that I would "take my punishment drugs” voluntarily and without resistance, I was often pushed onto my face, prone, on the mattress, and held down by several guards until I couldn't breathe, and forcibly injected.

Note that although the Centers for Medicare and Medicaid require "imminent danger of causing severe bodily harm to self or others, or even property"  before any patient is put into seclusion of four point rsrtaints,  I was routinely secluded, stripped naked by male guards, and four-point restrained in a spread-eagle maximum exposure position, for being a nuisance and a disruptive presence to the appropriate unit "milieu." Once, when I told the guards these requirements, the "rules" for secluding a patient, they seemed surprised...and even reluctant to continue, though of course they had to follow orders and did so. They were always willing to inflict pain on me to ensure my rapid compliance, even when I verbally assured them I would do so. 

You may be surprised to hear that in point of fact, when I actually was in acute danger of self-harm, due to command hallucinations, and was observed by many nurses slicing my face with a sharp piece of plastic, drawing blood that streamed down my face and left open wounds, this behavior was actually ignored and even savagely mocked! So it was clearly not the case that their secluding me or stripping me had anything whatsoever to do with concerns for my physical safety...

In addition, Dr Balkunas, quite despite his apparent belief in the accuracy of his diagnosis of a personality disorder, never treated me for it, not with anything but antipsychotic drugs. Although he charged Medicare more than $300.00 per session each morning,  he saw me for a one-sentence  “How are you?” drive-by Q and A each morning. He largely ignored my presence on the unit. Worse, whenever I was put in seclusion or four -point restraints I would BEG for my 1-hour face-to-face interview for evaluation of the appropriateness of the intervention, but they routinely denied me that right, saying that they had 24 hours before I needed to see anyone…!

His whole rationale for committing me to the State Hospital was that "antipsychotic drugs take time to work", so I will send you there until  yours do...Mind you, he never changed my meds. so I stayed on the same meds and the same dosages I came in on and that i had never stopped taking,so what was it that he thought “needed to work? Just torture? 

Please help me, I cannot go on this way. NO ONE in Connecticut is charged with assisting me. NO LEGAL Agency has  any interest in me…NONE. Believe me I have tried for years to find some help with this sort of abuse, but there is absolutely no one. Not even the Dept of Protection and Advocacy for the mentally ill or those charged with protecting the elderly!

Sincerely,

Pamela S Wagner

PLEASE NOTE that I have trouble speaking, and while I can take a phone call i am using text to speech software. This is effective but it takes a little time for me to type and allow the iPad to speak my words. PLEASE be patient if you call me in the next day or so...

TELEPHONE: 860...

ALSO you might be interested, Dear Reader, in my Google + review, written shortly after that hospital stay of Dr Michael Balkunas. Either the link or the review itself should appear here.

https://plus.google.com/109362057307724485552/posts/ak5CU7s3qL1

 #Torture

 

Just wanted to link this to my recent blog post in which I fake thank the doctor for his torturing me at New Britain General Hospital this past spring 2014 and then accusing me of lying to him about what was happening there...since he was not on the unit most of the time, he never knew!

Pamela Spiro Wagner

 reviewed:

Dr. Michael E. Balkunas, MD

100 Grand St, New Britain, CT 06052

Michael E. Balkunas, MD, chief psychiatrist of the W-1 unit of the Hospital of Central Connecticut in New Britain, deliberately misdiagnosed me, who had been admitted with a decades long dx of schizophrenia and PTSD since 2009, with the secondary diagnosis of Borderline Personality Disorder, against all the evidence, which he took pains to gather from my family and outside providers. I believe he did this in order to justify treating me with an inhumane Behavioral Treatment Plan, four-point restraints and the use of a horrific seclusion cell, into which I might run to avoid being dragged there bodily by the security guards. I was then stripped of all my clothing "for safety's sake." Once there, procedure demanded that no matter how calm, how voluntarily I went in, I would be injected with three "punishment drugs" which at times were not even on my normal list of medications, e.g. Prolixin, which I haven't taken for decades and to which I have a terrible reaction. Despite my insistence that I would "take the punishment drugs" voluntarily, I was often pushed onto my face, prone, on the mattress, and held down until I couldn't breathe, and forcibly injected.

Note that I was never secluded or four-pooint restrained for "imminent danger of causing severe bodily harm to self or others, or even property" as the Centers for Medicare and Medicaid require, but for being a nuisance and a disruptive presence to the appropriate unit "milieu." Once, when I told the guards the "rules" for secluding a patient, they seemed surprised...and even reluctant to continue, though of course they had to follow orders and did so. They were always willing to inflict pain on me to ensure my rapid compliance, even when I verbally assured them I would do so.

Also, Dr Balkunas, quite despite his apparent belief in the accuracy of his diagnosis of a personality disorder, never treated me for it, not with anything but antipsychotic drugs. In fact his whole rationale for committing me to the State Hospital was that "antipsychotic drugs take time to work", so we will send you there until they do...Mind you, he never changed my meds. I stayed on the same meds and the same dosages, of the very same ones I came in on, the entire time I spent there...

Dr Michael Balkunas and the entire W-1 unit staff of Hospital of Central Connecticut (New Britain General Hospital) need to be re-educated, or better yet, lose lose their jobs and their licenses to practice.

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Pamela Spiro Wagner

5:50 AM

 

 

Here is the link to the blog post http://pamelaspirowagner.com/2014/10/23/thank-you-michael-edward-balkunas-md-for-everything/

Avatar Therapy Cures "Hearing Voices" Symptom in Schizophrenia: Does it Work?

Novel 'Avatar Therapy' May Silence Voices in Schizophrenia

Deborah Brauser

July 03, 2014 - From Medscape (see link below)

LONDON ― A novel treatment may help patients with schizophrenia confront and even silence the internal persecutory voices they hear, new research suggests.

Avatar therapy allows patients to choose a digital face (or "avatar") that best resembles what they picture their phantom voice to look like. Then, after discussing ahead of time the things the voice often says to the patient, a therapist sits in a separate room and "talks" through the animated avatar shown on a computer monitor in a disguised and filtered voice as it interacts with the patient.

In addition, the therapist can also talk by microphone in a normal voice to coach the patient throughout each session.

In a pilot study of 26 patients with treatment-resistant psychosis who reported auditory hallucinations, those who received 6 half-hour sessions of avatar therapy reported a significant reduction in the frequency and volume of the internal voices ― and 3 reported that the voices had disappeared altogether.

"Opening up a dialogue between a patient and the voice they've been hearing is powerful. This is a way to talk to it instead of only hearing 1-way conversations," lead author and creator of the therapy program Julian Leff, MD, FRCPsych, emeritus professor at the Institute of Psychiatry in London, told meeting attendees.

"As the therapist, I'm sharing the patient's experience and can actually hear what the patient hears. But it's important to remind them that this is something that they created and that they are in a safe space," Dr. Leff told Medscape Medical Newsafter his presentation.

Two presentations were given here at the International Congress of the Royal College of Psychiatrists (RCPsych) 2014 the day after the study results were released in the print edition of Psychosis.

Regaining Control

According to the investigators, 1 in 4 people who hear phantom voices fail to respond to antipsychotic medication.

Dr. Leff explained that this program started a little more than 3 years ago, after he had retired "and could start thinking clearly again." He had been interested in the phenomenon of phantom voices for more than 40 years.

"Our mind craves meaningful input. That's its nourishment. And if it's deprived of nourishment, it pushes out something into the outside world," he said. "The aim of our therapy is to give the patient's ego back its mastery over lost provinces of his mental life."

The researchers used the "off-shelf programs" Facegen for the creation of the avatar faces and Annosoft LIP-SYNC for animating the lips and mouth. They also used a novel real-time voice-morphing program for the voice matching and to let the voice of a therapist to be changed.

In fact, Dr. Leff reported that one option the program provided changed his voice into that of a woman.

After a patient chose a face/avatar from among several options, the investigators could change that face. For example, 1 patient spoke of hearing an angel talk to him but also talked about wanting to live in a world of angels. So the researchers made the avatar very stern and grim so that the patient would be more willing to confront it.

Another patient chose a "red devil" avatar and a low, booming voice to represent the aggressiveness that he had been hearing for 16 years.

For the study, 26 participants between the ages of 14 and 74 years (mean age, 37.7 years; 63% men) were selected and randomly assigned to receive either avatar therapy or treatment as usual with antipsychotic medication.

The length of time for hearing voices ranged from 3.5 years to more than 30 years, and all of the patients had very low self-esteem. Those who heard more than 1 voice were told to choose the one that was most dominant.

Pocket Therapist

During the sessions, the therapist sat in a separate room and played dual roles. He coached the participants on how to confront and talk with the avatars in his own voice, and he also voiced the avatars. All of the sessions were recorded and given to the participants on an MP3 recorder to play back if needed, to remind the patients how to confront and talk to the auditory hallucination if it reappeared. 

"We told them: It's like having a therapist in your pocket. Use it," said Dr. Leff.

All of the avatars started out appearing very stern; they talked loudly and said horrible things to match what the patients had been reportedly experiencing. But after patients learned to talk back to the faces in more confident tones, the avatars began to "soften up" and discuss issues rationally and even offer advice.

Most of the participants who received avatar therapy went on after the study to be able to start new jobs. In addition, most reported that the voices went down to whispers, and 3 patients reported that the voices stopped completely.

The patient who confronted the red devil avatar reported that the voice had disappeared after 2 sessions. At the 3-month follow-up, he reported that the voice had returned, although at night only; he was told to go to bed earlier (to fight possible fatigue) and to use the MP3 player immediately beforehand. On all subsequent follow-ups, he reported that the voice was completely gone, and he has since gone on to work abroad.

Another patient who reported past experiences of abuse asked that his avatar be created wearing sunglasses because he could not bear to look at its eyes. During his sessions, Dr. Leff told him through the avatar that what had happened to the patient was not his fault. And at the end of 5 sessions, the phantom voice disappeared altogether.

Although 1 female patient reported that her phantom voice had not gone away, it had gotten much quieter. "When we asked her why, she said, 'The voice now knows that if it talks to me, I'll talk back,' " said Dr. Leff.

"These people are giving a face to an incredibly destructive force in their mind. Giving them control to create the avatar lets them control the situation and even make friends with it," he added.

"The moment that a patient says something and the avatar responds differently than before, everything changes."

In addition, there was a significant reduction in depression scores on the Calgary Depression Scale for Schizophrenia and in suicidal ideation for the avatar participants at the 3-month follow-up assessment.

A bigger study with a proposed sample size of 140 is currently under way and is "about a quarter of the way complete," Dr. Leff reports. Of these patients, 70 will receive avatar therapy, and 70 will receive supportive counseling.

"In order for others to master this therapy, it is necessary to construct a treatment manual and this has now been completed, in preparation for the replication study," write the investigators.

"One of its main aims is to determine whether clinicians working in a standard setting can be trained to achieve results comparable to those that emerged from the pilot study," they add.

"Fascinating" New Therapy

"I think this is really exciting. It's a fascinating, new form of therapy," session moderator Sridevi Kalidindi, FRCPsych, consultant psychiatrist and clinical lead in rehabilitation at South London and Maudsley NHS Foundation Trust in the United Kingdom, told Medscape Medical News.

Dr. Kalidindi, who is also chair of the Rehabilitation Faculty for the Royal College of Psychiatrists, was not involved with this research."I think it is a novel way of approaching these very challenging symptoms that people have. From the early results that have been presented, it provides hope for people that they may actually be able to improve from all of these symptoms. And we may be able to reduce their distress in quite a different way from anything we've ever done before."

She added that she will be watching this ongoing program "with great interest."

"I was very enthused to learn that more research is going on with this particularly complex group," said Dr. Kalidindi.

"This could be something for people who have perhaps not benefitted from other types of intervention. Overall, it's fantastic."

International Congress of the Royal College of Psychiatrists (RCPsych) 2014. Presented in 2 oral sessions on June 26, 2014.

Psychosis. 2014;6:166-176. Full text

Original Article From MEDSCAPE:

http://www.medscape.com/viewarticle/827797?nlid=60566_2051&src=wnl_edit_medn_psyc&uac=63563AN&spon=12

THE BITTEREST PILLS ARE ANTI-PSYCHOTIC DRUGs but if they work...

and they really work for you, then don't listen to me, keep taking them and the more power to you.

Do you work at a job and earn a living while you take anti-psychotic drugs? Do you support a family or take care of one while your wage-earner partner can keep her or his job without worrying about your sanity? Good, then the "anti-psychotic" pills you take (or I'll add in for good measure, god help us all, the "anti-depressant" pills) are doing what we were always told they were supposed to do. Or if you don't work or care for a family, if not, do you at least live a fulfilling single's life, with good capable friends and family and a worthwhile occupying activity that keeps your mind free of craziness and despondency the preponderance of the time? Terrific!Then those pills, whether they be antipsychotic or anti-depressant pills actually function and you are one lucky dude or chick. I say to you, whoever you are, All Cheers and GO FOR IT! Please do not worry about anything further I say in this or any other blog post. Whatever I write from here on in, whatever I say that you do not agree with, IT IS NOT INTENDED FOR YOU. Why? Because by your report, YOUR PILLS WORK and they do a bloody good job of it. So who's to tell you to change anything? You have no complaints and aside from the possibility that your brain might sustain a little shrinkage, if  research about such things proves correct, you have nothing to worry about. In truth, most aging brains shrink and sustain bits of damage along the way. Lots of things can happen...most of them not drug related at all. One simply cannot worry about a "what if" future, when the present is so bright.

So I repeat, IF you happen to be one of those lucky ones I have described and actually have no complaints, IF, better than that, if you find that your anti-psychotic drug or anti-depressant pills work terrifically well, you have had no relapses, suffer no terrible trade-offs in terms of side effects, then stop reading this blog post right this minute. Why? Because I have nothing to offer you and nothing to say to you. Okay? You don't need me, and you won't want to hear what I am going to say to the others of us out there whose experience has been somewhat to radically different.

But this is a SHOUT OUT to you, there, who don't like your drugs and don't want to take them. Or find them minimally helpful, or wonder frankly whether they really do any of what the docs tell you they do,  forewarned is forearmed...This post is going to be about the charade of anti-psychotic drugs, for the most part, about the fact that they do not in fact function in the anti-schizophrenia fashion that you have been told.  (I likely won't have the time or energy at this point, being on AP drugs myself, to get into the appalling farce of what are called anti-depressants...You could turn to MAD IN AMERICA by Robert Whitaker for a take on those -- just check out his chapter on Prozac for a taste...) It isn't that AP drugs do nothing at all. They do attack the brain's neurotransmitter levels, in some fashion or another. And not just the vaunted dopamine and or serotonin levels either. No, most atypical antipsychotic drugs have effects on histamine, glutamine, noradrenaline and acetylcholine and likely a whole host of other brain chemicals we haven't even scratched the surface of, in the sense of knowing their function in the brain, or in any part of the brain for that matter.

Do you know, did you know, that the Dopamine Hypothesis, the fundmental reason why there are antipsychotic drugs out there now in so many burgeoning numbers was always bogus? It never held water, ever. There was NEVER any reason to believe that dopamine caused schizophrenia, or that a dyspfucntional level of dopamine lay behind the majority of schizophrenic symptoms. It was a bold-faced and bald-pated lie, that's because it is as old as the hills and as tiring. You don't have schizophrenia the way one has diabetes, because you have a chemical imbalance in your neurotrnamitters that these neat little AP drugs resolve and rebalance. Sorry, folks, but that has been baloney ever since we all started developing parkinsonism and KNEW, just KNEW that something was terribly wrong with these miracle drugs that made us feel so terrible.

Did you know that it used to be the criteria for a true neuroleptic, the only way they knew they had a functioning adequate drug, was because it successfully induced parkinsonism in patients. That is, if it induced adequate BRAIN DAMAGE, then they knew it would "work" against schizophrenia. Because the theory was, both in ECT and insulin coma,  as it was in early AP drugs like Thorazine and Haldol that you had to induce brain damage to get a therapeutic effect in the illness. Crazy no? No, not at all, not when you stood to make ZILLIONS and Gazilliions of dollars on these drugs. Not only could you treat a hospialized crazy person with these drugs, and make them "better" and push them out of the hospital, but you could set up a plan for future care, AFTER CARE, that specified that JUST like diabetes, a person had to keep taking these drugs. You never just recovered from an illness like schizophrenia, no. The drugs were miracles yes, but not like antibiotics, They never cured you. they just were a treatment that you had to keep taking. The Gift that keeps on giving...at least for the Pharmaceutical companies who dreamed up the protocol. If they could get a person onto the AP drugs, once, and mandate legally or via a persuasive mental health system that the patient stay on them for life, well then, what a system, and what a money maker!

Oh my eye! What a load of hog wash. All they ever did was dream up neuroleptic ("brain seizing") drugs that physically subdued people and made them more amenable to nursing. So the hospital nurses could be more nursey nursey and kinder, and more kindly disposed to patients who were now drooling and dulled and seemed much genuinely sick, and the patients could be seen as more ill and less hostile and unpleasant to be around, less difficult to treat qua patients..

But it was a strange transformation, because the more sick the patients were made by taking these neuroleptic drugs, the less they were treated like the troubled and suffering PEOPLE they were to begin with. Once a patient, they assumed that role, and the whole cycle began and has never stopped to this day. "Schizophrenia is an illness just like diabetes." That was the canard I was told in 1980 -- we are still being handed the same disgusting lie! -- when I was first officially diagnosed with the condition, or told the name to my face at any rate. "You'll never recover, and you will likely have relapses, but you won't be a back wards patient if you take these pills like a good girl, and do as I tell you. No schizophrenia isn't a death sentence these days but it IS a life sentence..." So what did I do? I swallowed my 500mg of Melleril, yes i did, and I told the doctor I was feeling much better, yes I did. Because frankly I didn't know how I felt and I felt OBLIGED to tell the doctor what he wanted to hear. How else was I going to get out of the hospital and get off those horrible pills that made me put on 20 pounds in three weeks and made me feel so dull and sluggish and tired all the time? Besides, how could I possibly, in those conditions, KNOW how I felt, when the nurses themsevlves colluded to tell me how much better I looked and was doing? I knew I couldn't read or think for myself any longer. But they told me that that was my negative symptoms and had nothing to do with the drugs. It was a problem I would have to come to terms with by talking with a therapist...which was a good thing, that they suggested I see a therapist. Back in those days, it was often frowned upon that ANYONE with schizophrenia actually do any talking to anyone at all. After all, if you talked about yourself or your illness, you might upset yourself or the whole applecart...You might actually go crazy again, you were that UNSTABLE! No talk therapy was usually frowned upon for "schizophrenics." It was seen as not good for them, and destabilizing. What we needed was daily meds and mouth checks and maybe day treatment with a hours job to do each day, like capping test tubes for the lab to keep us busy. Lucky was he or she who could function as a bus boy or table setter. Most of us barely made it to day treatment on time, before sacking out on a couch somewhere for a long snooze to let the morning's dose of thorazine 1000mg or Melleril 800mg wear off a little before coffee hour or lunch time.

Some of us actually turned blue on high doses of Chlorpromazine, and she eventually died, at the age of 28. There was a lot of relapses and some suicides, but NO ONE actually went out and got a job and quit the hospital and got better. No, because the whole damned system was set up in such a way that once you were set up on anti-psychotic drugs, with a diagnosis of schizophrenia, you were put on social security disability payments for life,..and drugs for life followed, and the trap ensued that meant your whole life was a rolling down hill of poverty and more drug taking and relapses...until maybe something amazing happened to get you out of the systematic rut the psychiatric system had placed you in.

MAYBE you found someone you fell in love with, someone who not only would take care of you, but who hated to see you dull and passionless and sexless on the drugs and encouraged you to SLOWLY wean yourself off of them. And maybe it happened to a few of us that it was a success, because love can really conquer all, even the notion that schizophrenia is a life-long hopeless illness. If you got off the drugs in the right way, slowly, and stopped seeing the doctor who told you you would definitely relapse, maybe just maybe you didn't. Maybe your sex life came back and you found out it was better than Haldol and thorazine, and better than being dulled by the system's poverty and being sick. And once in a while that person's husband was so loving and encouraging that they got married and moved away and she stayed well enough to take up a hobby that turned out to make a little money by itself. So she turned it into a business, and miracle of miracles, she didn't fall into the trap of SSDI  after all but stayed well without the AP drugs and became a businesswoman without enough time to think about being schizophrenic again...

But alas, that didn't happen very often. Not nearly often enough. There were far too many tragedies compared to the rare success story. Too many people getting diagnosed with schizopohrenia, and then when the fads for multiple personality disorder came, with that, and all the other fads that had to happen because the drug companies had drugs that they needed to sell use on people and they had to have diagnosese to fit the pharmaceutical picture so they could sell the drugs they had on hand. ADHD, autism are only the latest two...

But I digress, I digress, so let me tell me my own story, if I have the time and energy.

I got sucked in. I did. I was hospitalized in 1980, and even before them. But in 1980, as far as I can now recall, I was up late at night, for the third night, in the hospital kitchenette in an absolute sweating panic about my hands. Why? Because I had this strong delusional belief that they were not my own, but that my twin sister had taken them over and controlled them. I could feel them, and in a sense I could see this process happening. And I heard voices telling me that I was in danger. A nurse came in, and asked me why I was up, and in a panic, i told her. I said, somethings wrong with my hands! They aren't mind, my sister has control of them! And I can't sleep, I can't sleep!

Now, the nurse was a kind woman and I think she meant to help, but she couldnt do anything for me but tell me she would call the doctor, who came, in his fashion, running. I was sweating bullets by then, sitting at the empty lunch table, mumbling about my sister and my stolen hands. What could he do, given his own pharma-company training, but offer me some drug assistance and promise me that it would help, that it was what I "needed" in the throes of my illness?

I believed him, I did. And when he came back the next morning, after I had been dosed three times that night with increasing amounts of Melleril until I finally slept, he pronounced that I suffered from the mental version of diabetes. schizophrenia...The rest, well, if it isn't everyone's history, it is a version of it. And  it involves SSDI and even SSI because I had never been able to work a full time job even before then. And none of the many drugs I took after that ever did anything for me but disable me more than before. And I would stop them and be hospitalized again with what they now suspect is withdrawal psychosis, or could have been. And I would be started back on the drugs, or a long-acting injection that was supposed to prevent hospitalization. It never did much good...I was a basket case, a basket case. I never washed or changed my clothing, or even took off my shoes, not even to go to bed. NO I wore those hiking boots for a good year and a half before they even saw me take off the socks I wore underneath them...

So how much did the AP drugs help me? And when they started to restrain me for paranoid fears and trying to escape a locked unit, did I then say Enough is enough,  you cannot torture me, I have schizophrenia? No, I accepted mechanical restraints for three days at a ttime as a form of treatment. One doctor actually told me that schizophrenics don't respond badly to being tied to a bed for a long time, it helps them, he said, by reducing stimulation...So they did that, and they kept me in seclusion for weeks at a time...until finally I would cry Uncle and take the drug they wanted me on, and go home again, prepared for the next certain relapse, because what else was there....I had a life, yes, but it wasn't much. It was just hospitals and restraints and drugs that never helped me and cruelty from nurses that didn't know they were hurting me. And doctors who were damaging me without thinking twice about it. And I didn't even have the mental wherewithal to know that the drugs were the prime offenders. The PRIME offenders.

It is now 5:30am and I have been up all night. My shoulder hurts, from where i have a slightly torn rotator cuff and frozen shoulder tendonitis... I don't have a bed, only a recliner I should not sleep in...I am a mess, and  I am also NOT going to continue to take my Abilify and Geodon much longer...I cannot. I cannot. I do not know what will  happen, but I am too afraid of what will happen if I take it, to take them, though I have never felt they did me more harm than good. I just don;t know what real GOOD they do me.

More later, or on another day. Sorry this was so impassioned.

.

Daniel Mackler's Amazing Movie About Recovery from Schizophrenia

If this video embeds as it is supposed to, it is am amazing hour and fifteen minute movie narrated by Daniel Mackler. I believe it is legally allowed to be embedded since I got it from Mackler's Youtube site (with the embed button). Please watch it. You won't be able to stop...All about recovery from schizophrenia without medications, not to mention the harm that medications do in terms of impeding recovery... The film features, among others, Joanne Greenberg of I NEVER PROMISED YOU A ROSE GARDEN fame, and Catherine Penney, RN who also recovered from severe schizophrenia largely without psychiatric drugs, with the help of Daniel Dormand MD.

Mental Hospital Treatment in 2013: Seclusion and Restraints

Restraint Chair: Not for Prisoners but...

The Devil's Chair | The Progressive

After reading this article, please go to my other blog at wagblog.wordpress.com for a post that will deal by the end of Jan 4th with how they used a chair like this on me at Connecticut's Manchester Hospital in the general psychiatric unit. I was not a forensic patient, I committed no crime, never have. I was simply there because of a diagnosis of schizophrenia. For the life of me I do not know, and frankly am horrified to so much as speculate, where they obtained such a chair; no one I talked to since who has worked in a psych unit has ever seen such a contraption anywhere on a regular psych service unit...But as I said, I am working on a post dealing with this, and it should be up by the end of tonight.

Jill Bolte Taylor's stroke of insight | Video on TED.com - a must see for everyone!

This is an amazing video that I may have posted here before or else at Wagblog at some point. However I think it has so many terrific things to say about the brain and what a person can do despite adversity, that I wanted to post it again. Also it simply astounds me each time I watch it how clearly Ms Taylor makes the case for letting the left brain rest and the right brain take over for a while. But it is difficult for me to make the case better than she does in the brief 17 minutes or so that this TED Talks video lasts. Do watch it. It could change your life. I mean it.

Jill Bolte Taylor's stroke of insight | Video on TED.com

Schizophrenia Medications - My Experience with the Atypical Antipsychotics

Although the first time I ever took a neuroleptic antipsychotic was in 1971 at age 18, I was prescribed them regularly starting in 1978 until 1993. I have taken almost every one available and they were almost universally awful, mostly because of devastating side effects. If they were effective, it was difficult to know because of these side effects, which made me refuse to take any one of them for long.

When Clozaril came along, the first atypical antipsychotic drug, I was one of the first Medicaid patients in CT to be put on it. Alas, I have to admit that I am unable to evaluate its efficacy in my case, because I experienced once again such side effects that despite 3 or 4 serious trials on it, I was relieved when my white cell count dropped so low that I was forced to stop taking it. I know that other people said I "did better" on clozapine, but they'd said that about Haldol and Thorazine and Prolixin yada yada yada when I'd suffered the agonies of hell on those. So whatever they thought, that it was worth it for me to suffer such side effects, meant little to me in the end. They were not in my body, and it never seemed to matter to them ("them" being largely the psychiatrist and various mental health "officials" supervising me) that I was in exquisite pain on any of the drugs so long as I took them.

As a result, when they told me that it was worth the side effects to continue taking the clozapine, I finally told the doctor I was seeing to "go soak your head." At which point, she summarily dumped me! Fine, fine. That wasn't exactly copacetic, as they used to say, but I got another and finally I was able to stop taking the drug when agranulocytosis seemed imminent. Then it was back to Prolixin for a few years, which was bad, but frankly not as agonizing as the Clozaril had been.

But what side effects did I have? Well, it turns out that I would have those same side effects some years later on Seroquel: after taking the drug at night I would within a half hour have  unbearable feelings of impending doom, the sense that if I closed my eyes to sleep I would without a doubt die that very night. It sounds trivial but it was one of the most horrifying feelings I have ever had to deal with. Then I found I could not swallow my own saliva, which was copious and spilled out onto my pillow by the "pailful" -- when I did fall into that deathly sleep I was so terrorized by, I would wake with slimy sheets and pillowcase. Did I mention sedation all day long, and weight gain? No? Well, there were those as well. It isn't just Zyprexa that is guilty of causing obesity and diabetes. Long before I took Zyprexa I had already started to gain weight, and I believe that was because of taking Clozaril for so many trial runs for so many months.

But then, after waiting until 1996, Zyprexa, that miracle drug for me, that drug from hell as it turned out to be as well, came out and changed my life for good, and for ill. I loved it, and I still do. But I would never take it again. If you have not read about my journey with this medication scroll down to earlier posts and look for "Schizophrenia and My Conflict about Taking Medication" which tells the tale.

After Zyprexa came Seroquel, and then Risperdal which had all those side effects and then some, including sedation so extreme that a friend considered me nearly comatose. In fact, every time I agreed to another trial on it and I took it for longer than two weeks at any dose, even as little as a half milligram, I ended up catatonic. The last time led to a hospitalization so traumatic that was it for risperidone.

Have you guessed by now that I have tried most of the atypicals available in the U.S. if not all of them? I am now on Abilify and Geodon which I will tell you about at the end of this post, but first I need to give you the lowdown about how I did on 1) Saphris, 2) Fanapt and 3) Latuda.

Saphris was from the start one of the most deadening drugs I have ever taken. Yes, the voices were drugged up and deadened. But it seemed to exacerbate all possible negative symptoms I ever had. I simply had no drive to do a thing but watch television all day long, smoke and look out the window. I did nothing else, barely even bothered to eat. In fact, I am going to do something I rarely do here, which is to post a poem that I have not yet published, despite the fact that it might mean I cannot do so elsewhere in the future, because I wrote it about the experience of taking Saphris, and the dullness and negative symptoms it induced.

DISTEMPER

A new pill for distempered minds leaves me myself,

untempered. Not that being less prone to tantrums

is a bad thing. For instance, I no longer snap and seize

at the fluorescent shatterings of daily living.

But this placidity borders on clinical torpor

so that even daytime television

seems like a worthwhile invention,

as good a way to spend sixteen hours as any other.

I’m awake all day and all night, too conscious --

thinking, thinking, not bored, but not quite interested enough

to put my hands or mind to any enjoyable task

while a K2 of necessities goes undone:

dishes, laundry, cat litter—all insurmountable molehills.

The ancient cathode ray flickers and the talkies chatter on.

Deep in my chair, smoking away five years of sobriety,

my drugged eyes fix six hours on “America’s Top Model”

and then on a woman heavy with twins who smiles

on her "Nineteen Kids and Counting."

A dozen should-dos fog me into lumbering up.

and I aim myself towards too many goals to count on,

but quickly all recede into a cave of twilight.

Time for “Junkyard Wars” on channel 101.

I sit back down, light another cigarette

and press on the remote.

 
Fanapt? I scarcely recall why I did not like the drug, but I do know that I barely took it a week before i nixed it. I think I could tell it was making me eat too much, which was the kiss of death almost before I could see if it helped me . One of my biggest phobias now, after becoming obese on Zyprexa, is that I will never let that happen to me again. It was simply too hard to get the weight off again, and I will not repeat that struggle or go through what it took to do so. Not if I have any say in it, which I damn well intend to.


Then we have Latuda, of which I once sang praises. You should know that I have had second thoughts and changed my mind about this drug. Oh, it did stop the voices and such very quickly, but it too induced a kind of grayness to life, an indifference and colorlessness that was painful. I could do nothing, even if I wanted to. I felt like nothing interested me. The only difference between Latuda and Saphris was that on Latuda I understood what I was missing, I knew that I wanted to want more, whereas on Saphris I simply didn't feel like doing anything, and forgot that life could hold much more. The latter state was much worse, but luckily someone picked up on it, and the dangers it held, and I got off it before it became a pattern.


When I was in the hospital this past summer for 6 weeks I might have been ready for discharge earlier, had I been willing to take either Zyprexa or Latuda, but I refused, because I knew perfectly well that once discharged I would adamantly refuse to continue either drug,As I pointed out, what was the point of getting started on a drug only to cease taking it the minute I got out of the hospital? It made no sense, especially were I to leave below my baseline, with the assumption that thte drug, being administered on the outside, was what was going to help me recover from the on-going psychosis. It simply made no sense to get me started on a drug I would refuse to take. 


Luckily the attending doctor, a very nice older woman from Rumania, got the point and even agreed with it, so though the stay was rough, largely because we had to deal with a lot of my reaction to the trauma I had experienced at two other hospitals the previous year, I was able to stay on Geodon and Abiify without adding another drug I wouldn't continue taking.


Now, as to those drugs, the combination of A and G: I consider them to be my "output" drugs, compared to Zyprexa, which was an "intake" drug. On Zyprexa I take in and attend to everything: reading, learning, and also food. I gobble everything down and retain it. I learn a great deal and I also become obese. On Abilify and Geodon, I do a lot, get a lot of work done, for they are my "output" drugs. I can control my appetite and do not feel as driven to eat. On this combination I write and write like mad, and I do art like there is no tomorrow. In fact, sometimes I cannot let go of my pen, but must write until my hand hurts...But taking in is of less importance. In fact, though, I have to force myself to read or eat and to read a book becomes a chore of the first order. This not good, but I have had to make the choice and it has been acceptable to me. 


All my life I have not been productive, due to schizophrenia. I have been an unproductive, non-functioning citizen. Finally, I can produce art and writing, and I revel in it, even though due to the horrible financial strictures of Medicare,  Social Security and Medicaid, and my own needs for housing, medical coverage, I am unable to get off any of them. This forces me and most disabled people to remain poor, essentially non-productive. Maybe I produce, but uselessly as I cannot earn a living. So I produce ina vacuum. I produce,  but I give everything away. I donate my sculptures to good causes, not a bad thing, and I save my "flat" pieces until such a time as I may be able to sell them, or trade them for useful items I need for my art or apartment. What else can I do, since I cannot earn income? It is a terrible bind, once which President Obama wanted to repair, but will not be permitted to do,  due to the politics of our time.


So, here is where I am now. I take Abilify with Geodon to temper the over-activating effects, the temper and irritability Abilify alone tends to induce, plus Lamictal, a mood stabilizer that I frankly use only to control what I've been told are temporal lobe seizures in the form of olfactory hallucinations; Topomax to reduce the frequency of migraines; Ritalin and Xyrem to treat narcolepsy, the second to increase delta sleep in order to reduce the need for the first. And Zoloft, to which I suspect I am addicted and need less for major depression than because I cannot get off it without rebound depression and suicidality..


All in all, these seem to work fairly well, however. If I have relapses, mostly I have to live with them, and wait for them to burn themselves out, because I won't take any other meds to stop them, and because increasing any of these drugs only adds side effects without actually helping the psychosis.


If my readers have any further questions, feel free to comment and ask them in your comment. I will reply personally or in another post.




TTFN (tata or good bye for now)

Meaning and Madness: Is Schizophrenia Real?

 Rossa F (not real name) asks in the comment on my previous post some fantastic questions, which just happen to be of particular interest to me at the moment. The link to the fascinating interview with Gail Hornstein below is an introduction to other ways of thinking about the subject of madness-not-as-a-mental-illness or at least not-as-a-chemical-imbalance. That last has always puzzled me: how on earth could anyone tell me that I suffered from a "chemical imbalance" when 1) they do not even know what chemicals are actually out of balance, if they are, in "schizophrenia," and 2) they do not really know what a truly normal level is in the first place. 


I have long argued that "schizophrenia" from all my observations, close and rather not so, can hardly be called an illness. I believe it can only be termed a syndrome, as in a collection of similar, by far not, identical symptoms, but not a single, or singular illness with specific core signs and symptoms. The very fact that out of dozens of medications it remains a set of symptoms that is treated largely hit or miss, and by trial and error, a med that is a miracle for one person, being useless for another. Moreover, I have known dozens of people, many of them friends, who have been dx'd with this "illness" and every single of one of them was singular, "uniquely unique" and shared almost no symptom or trait or characteristic of the illness with anyone else. 

Oh, sure, we may have been dx'd paranoid, some of us, but none was paranoid in the same way. One guy who believed he wrote a certain famous rock groups' music (a delusion) was certain that people were out to steal his music manuscripts, even though these looked to us like nonsense written on scraps of scratch paper. Not to him, to him they were pure gold and he was terrified...The "paranoid" delusion of another person with this same illness schizophrenia had to do with something entirely different and took an entirely different form:  Witches were out to get him and he had to confuse them so they could not get into his mouth...The fact that he could not speak without confusing everyone, that he scarcely said a sentence that made sense, makes all too much sense now.

But the fact that all of us were stuck with the same diagnosis struck me as rather bizarre even then, since logically we ought to have had more in common than the fact that we took the same class of medications: anti-psychotic drugs which we more or less hated in common, and which many to most of us either cheeked or refused outright. But I could discern very little that bound us together, beyond the label and the unpleasant, and undesirable class of meds they -- the medical establishment -- plied us with.


I want to continue this later, but I need to finish a speech that I am giving tomorrow evening at a meeting at the State Hospital in this state. So I need to leave this unfinished for now. I hope you get a chance to listen to the interview, and will return here to read and maybe contribute a comment to the discussion.


Gail Hornstein Interview on Madness and Meaning

Interview with Dr Manny

My twin sister and I did this interview for Foxnews.com last year. While I generally consider Fox network as the "enemy," in this case I must tell you that the interviewer, Jessica Mulvihill, was one of the most prepared, and the interview itself one of the most interesting for me and thoughtful that I have undergone since the books came out. Also, while the interview is a little over a year old, the information is not really that dated, though some of the facts are inaccurate. For instance, DIVIDED MINDS is a memoir, not an "autobiographical novel," and I was not asked to leave medical school, as Dr Manny relates. Instead, I was hospitalized. When discharged  6 weeks later, I was given a leave of absence, but promised that I could return after a year off, if I had medical, which is to say, psychiatric "clearance," so to speak.

Interview on the Dr Manny Show

I want to add something to this post, which came to me after watching the interview another time. Although the incident alluded to again , the one about Kennedy's assassination being the start of my schizophrenia, is mentioned in my poetry book as well as in Divided Minds, my new psychiatrist has a take on it that I found immensely -- I dunno -- reassuring, and somehow right on the money. Dr C suggested, and it feels right to me, that although I heard voices and deeply felt responsible for JFK's death, highly sensitive pre-adolescent children can be impressionable and emotional, and often they may get so involved in a tragic event such the assassination that rocked the entire country, that they may indeed begin to blame themselves. She feels that instead of the incident indicating that I was in the prodrome of schizophrenia, that it was instead an extreme emotional state, but more or less "normal" for a sensitive kid going through a terrible time.

I cannot tell you what relief this take on the event gives me. Why, I do not know, but I feel better being able to see my childhood through this other lens. To be able to say that indeed the illness maybe did start later, rather than to have to try to figure out why there was such a long break between 6th grade's psychotic episode and 10th and 11th grade and certainly the breakdown in college. To see the Kennedy episode as something altogether different, and not prodromal at all, puts another spin on things. It is not that I think that childhood mental illness is something to be ashamed of, only that I did well in those days in other ways, though not in all ways, so to date schizophrenia from age 11 always felt a bit shaky, compared to later years when my ability to cope was so diminished.

Schizophrenia and My Conflict about Taking Medication

Okay, I admit it, I have had my conflicts surrounding the issue of medication -- whether to take it, when to take it and what, if anything, I will take. In fact, I admit that this remains an issue, though less of one so long as there is a medication that I find inoffensive. But more on that later. First let me address the problem of that conflict itself.

In the "old days," which is to say, during the 1980's and early 90's, I was treated with the so-called "typical" neuroleptics like low-potency Thorazine and Mellaril (in doses as high as 1500mg) and high potency, lower dose drugs like Haldol, Trilafon, and Prolixin, either orally or by long-lasting depot injection. Although I was compliant with these meds for a while, I eventually found them so troublesome that while hospital doctors insisted they "helped" me, more often than not I would take them in order to be released from the hospital, only to stop them again. This became a pattern that led, familiarly, to what was called the revolving door in and out of psychiatric units. While I understood this only vaguely, I found the dulling side effects, not to mention the physical discomfort of these medications so terrible that even if not taking them meant yet another hospital stay, nevertheless I often refused -- in fact I could not bear to take them despite the psychosis that resulted. Had anyone bothered to ask me why, I would have told them that the drugs' side effects were simply worse than the illness; they were hell and there were no two ways about it. 

All the hospital staff and outpatient doctors and nurses believed that no one could possibly wish to choose "madness" over mere drug side effects, but I was someone who frankly preferred the former to the agony of the latter.

Now, while I speak as if I knew I was psychotic, that is not altogether true. All I knew was that I was being hospitalized a great many times, that I had been told that if I took the pills I was given, I would be able to stay out. I did not at the time believe that I had any illness at all, and did not for a very long time believe it. However, what I did want was to avoid the often brutal treatment of various hospitals, esp in the 90's , and that was what sometimes persuaded me to take them, not the understanding or agreement that I was ill.

But surely I was not alone in feeling that the side effects were worse than the consequences of not taking the prescribed pills. There would not be so many people with schizophrenia who like me refused them, if so. Whether I believed I was ill and needed to take medication or not, it hardly matters when the pills I was given caused unbearable pain, or so deadened me, I felt, that my life was scarcely worth living...

I know those meds in particular-- the older drugs both lower potency and higher potency, at almost any dose, caused me physical side effects and physical suffering. That alone was enough to make me ambivalent about taking them. What I never knew, and still do not really know for certain, was whether the drugs themselves emotionally deadened me, or whether what I came eventually to appreciate might in fact have been illness after all was the cause of my feeling deadened. Did I lack enthusiasm and passion because of the illness or because of the medication side effects?

Through the early 90s, I was on Prolixin as the least distasteful anti-psychotic, and having been more or less forced to take the long-lasting depot medication, I could not "stop" taking it, not once my weekly injection had been given. Then finally, Connecticut's Medicaid program started paying for Clozaril, and I was among the first people in the state to try it. All went well at first, and I seemed to be off to a good start. But unfortunately, once discharged to home, "all hell broke loose" with devastating side effects that were if anything worse than anything I had experienced on Prolixin or any other older neuroleptic. This may have been unusual, I do not know, but I had horrendous and immediate side effects: sensations of impending doom that made me afraid of falling asleep; then an inability to swallow even my own saliva; a kind of uncontrollable jerking, seizure-like while I was conscious; and when I was awakened -- nearly forcibly -- in the morning, I experienced an unbearable sedation that took hours to wear off...

I gave the drug several trials, but I was not disappointed when I developed a very low white cell count and was no longer permitted to take it. After that, it was back to Prolixin, and back to what had never really lifted, not even with the so-called awakening miracle drug of Clozaril: the deadened feeling. I felt hopeless, as if nothing would ever really work better for me, but then again, why should it when I didn't really suffer from an illness like schizophrenia to begin with?

My therapist, the one who had tried me on Clozaril so many times, left her practice, and I was shunted to a nurse-therapist at the Clinic, one who took an immediate disliking to me. I felt a similar antipathy for her and so with no love lost between us, it was a huge surprise to me when, after she gruffly suggested I try this  new drug, called Zyprexa, that I woke up only 3 days later feeling, well, not only awake and better, but awakened. Awakened, alive, even reborn. I could read, I could remember what I read, I could study and I felt enthusiastic about it all in a way that before then I could only dream of. 

Oh, I knew that I wanted to feel that way, but it had literally only been a dream or a wish before then. I had been vaguely hungry for this, but until I took Zyprexa, it seemed that I had been completely unable to grasp or fulfill my wish to do any of it. On the drug, I could pay attention and concentrate for longer than I had in decades, and learn things and retain what I learned. I felt that I had a whole lifetime to make up for, and started to make up for lost time. What is more, I was so confident in my ability to read and study now that I had found a drug that helped me, it seemed entirely possible to do so.

Why do I tell you this? Because while Zyprexa was the real miracle drug, a medication that did not so much give me back my life as give me a life I truly never had, it was, as I may have said before, also the side effect drug from hell. As I would soon discover, my weight started to increase almost from the first week, and it kept going up and up, despite my longstanding history of strict weight control and a vegetarian diet. Also, it is a very sedating drug, so that I had to fight off sleepiness that added exponentially to my narcoleptic tendency to drowse off whenever I sat down. 

Luckily my psychiatrist soon thereafter was also a sleep specialist; she had no problem treating this with the appropriate meds, and so it was not the problem it might have been, but the weight issue was, and is in fact,  one of the reasons I have on-going conflicts over taking that particular medication.

Side effects of any sort remain 1) the major reason I will not take a given medication, and 2) the major reason I do take the medications that I take. If this surprises you, let me explain. First the latter: Of my present medication regimen, the salient ones for this discussion are Abilify, Geodon, and Lamictal, and I take all three not for the reasons my psychiatrist may have prescribed them, but for their "side effects," at least as I perceive them. For instance, it was only once I started taking Abilify combined with Geodon -- I could never tolerate Abilify by itself -- that I found myself able to do art, and to write so fluently and so abundantly as to be unable to stop once I start. In fact, I call these two my output combo, medications that make my creative productivity enormous, whereas Zyprexa is just as literally my input drug, my intake drug, insofar as I can read and absorb information, and also eat, eat, eat. (Abilify, if anything, tends to cut my appetite.)

For the same reason, though, I will not take Zyprexa because of its intensely dispiriting side effect of causing obesity and with it diabetes and and the concomitant conditions that go along with that. I wish I could take it: I miss reading terribly, miss the heady feeling of intellectual confidence and the ability to learn and remember and such.

Unfortunately, despite my early paean of praise for Latuda, I have to admit I have reconsidered it, as I found that while I was cleaning my apartment regularly, I had slowed down on my drawing and writing, and at the same time had not found myself interested in reading, nor even in watching my usual documentaries...It felt like a kind of straitjacket. I had weathered the psychotic crisis, but after that its usefulness seemed to be limited, and limiting. I agreed to take it, if necessary, in a crisis, but aside from then, I did not find that it helped beyond attenuating the worst symptoms. I wish I could say otherwise, but...

In truth, given my druthers, in a crisis and forced to choose between one hell versus another, I might prefer Zyprexa over Latuda, since the benefit of the first outweighs the complete lack of any positive benefit from the latter. Which is to say, both treat the psychosis, but only the Zyprexa has any positive side effect in addition to that, whereas the Latuda only has the negative side effect of strait jacketing me in the process.

One other "benefit" from taking Zyprexa, discovered within just the first week or so, was the realization that a medication made a difference, a huge difference. The conclusion I began to draw from this was not so sudden, and it was reluctant, but eventually I had to decide that perhaps, if a medication made such a radical difference, and a medication, Zyprexa, supposedly "treated an illness called schizophrenia" perhaps, whether it was schizophrenia or not, I did have some illness. Surely, if this medication, which did not help most people, made such an enormous difference for me, it must mean something...

I was reluctant for a long time to answer that further, and still cannot say a lot more without cringing. But if indeed there is a real entity, a real singular illness of schizophrenia, as opposed to a syndrome, and if Zyprexa really is a treatment for it, an effective and appropriate one, then god bless it, I will accept the diagnosis. I might still refuse to take the drug, but I would accept that I have the illness and continue to say that Zyprexa was the best miracle drug from hell I ever took!

I fear that I may have ended this discussion before I have really finished the thought, so to speak. I have to go to sleep now, and will be leaving for DC tomorrow, without my computer. But I will be back in five days and hope to catch up with this then. TTFN