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How I Came to an Understanding of Treatment and My Disability And Working With Treatment Providers

Sep 12, 2009 - 0 comments
Tags:

Disability Rights

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Consumer Advocacy

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Research

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glycine

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Glutamate Antagonists

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Schizoaffective disorder

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tardive dyskinesia

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Tardive Dystonia

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Tardive Tourretism

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Tardive Myoclonus

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Tardive Akathesia

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Tardive Psychosis

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Tardive Dysphrenia

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Tardive Dysmentia



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  Let's do a brief rerun of my life as a person with schizoaffective disorder and focal dystonia that developed into advanced tardive dyskinesia. In 1991, after a psychotic break in my first year of college I realized that I needed treatment. I also realized I had "bad thoughts" (which were of course psychotic thoughts) since I was 13 but it had gotten to a full psychotic break with episodes of mania and suicidal ideations. Unfortunately, I self diagnosed (never a good idea) with ocd and presented it that way and after being given Anafranil became further psychotic and ended up in the psych. hospital. Then I was given a mood stabilizer and an antipsychotic which was what I needed all along. That much I've said. In 1993, I went off medication and naturally end up in the psych. hospital but the question is why. The reason is because I had fallen in with a group of anti-psychiatry folks (who can be cult like and should be avoided) who told me I didn't need medication and said I'd do okay with Bach Flower remedies (which had a mild anxiolytic effect, they certainly are not antipsychotics). I was having full psychotic episodes and I ask them what to do and they said they couldn't help me. I remembered that. They didn't have any answers. And their meetings led to little more than rants because some of them had been off medication for years. It was time to move on..
   But then although I certainly realized staying on treatment was neccessary in learning of the independent living model I thought of it differently. As there to help. But I continued to ask questions. But questions of a different kind as to what exactly was being treated, how the medications helped and what were their side effects. I remember one psychiatrist I saw when I asked about lithium orotate was told it "didn't exist". That's untrue. The answer is it does exist, its not "natural lithium" and its highly dangerous. I wasn't responding to many known medications and that's when I switched to my current psychopharmocologist. I was told from the beginning about the statistics and specifics of acquiring tardive dyskinesia. Once I knew the facts I accepted them. Naturally I wanted antipsychotics developed that didn't cause tardive. Who didn't. Psychiatrists included. I didn't realize I'd play a part in that as well. I remember as I put the IL model into place, providing testimony in 1998 as regarding a public hearing regarding the implementation of assisted outpatient treatment (AOT). The anti-psychiatry crowd were baiting the psychiatrists and being irrational and outright confrontational. The only question that asked that made sense was that the then new atypical antipsychotics might have long term side effects. The psychiatrists didn't doubt that but nor did they ever. I asked one question that did make sense. I said "before we talk about forced treatment let's talk about proper treatment". The psychiatrists said that was a "very good question" and elaborated and the anti-psychiatry groups shook my hand. For one brief moment there was a consensus. I wondered if that could be on a larger level. I was doing well. What I didn't realize that my ideas would indeed see fruition.  
  Then my mental and physical functioning declined over the years. No one knew why. Now they know. I did advocate to get on glycine, which of course is a calculated risk but a carefully supervised one in Phase II FDA study and will be the basis of whole new treatment modalities (NMDA receptor modulate antipsychotics). I would have never brought up the three neuropsychiatric aspects of tardive dyskinesia. But once it was clear I met the criteria for it I did. And at first no one knew how to help me. But once I advocated for treatment at that point, there was a clearer understanding of what these disabilities were (and again its still a clinical "finding" not a fact). I most certainly don't know more than my providers but when things didn't work out I asked questions that could help me. And help others as well. And I recieved truthful answers. And that's how I came to realize and understand the term "partnering on recovery" and why it made sense. I learned a lot at independent living centers, how to refer to myself as a person with a psychiatric disability and now a physical one and how to advocate for the supports and services I needed. But IL centers always worked with psychiatrists and other doctors (without providing medical reccomendations of course but when we needed documentation for supportive housing or Social Security representation or the like). And now, hopefully temporarily, I am physically homebound (except for short excercise walks a day). But I will continue to advocate for new treatments (my providers of course have the final judgment) and for the suppports and services I need. So yes its okay to ask questions. It depends what kind of questions you ask. If they are there to help you most certainly do. In my case they were to define an unknown mental recovery and for previous unknown neurological disabilities to be identified, prevented and treated. And after I asked them once they were answered in myself researchers became interested in asking the questions on a higher level. We all await the answers.,,,

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