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/

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.

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)