All Journal Entries Journals
Sort By:  

Life Out of Balance?

Nov 03, 2009 - 0 comments
Tags:

Recovery

,

treatment

,

Research

,

Self Understanding

,

spirituality



134178?1257290024
  I have thought of this question for a long time. Right now I am listening to the soundtrack of "Koyaanisqatsi", a film directed by the film maker Godfrey Reggio who had originally been a monk. The music is by the composer Philip Glass (whom I briefly met in person once with the poet Allen Ginsburg in 1991 when they were performing together). It is an experimental film consisting of slow motion and time lapse photography commenting on this concept. The photo was one I took in time lapse photography a couple of decades ago inspired by the fillm.
  The title of the film is the literal translation of the Hopi words for life out of balance. I thought of that term then seeing people race off to work headed to Wall Street on the local train in the early morning (while I headed to school on my bike) at the time and somehow lose track of who they were. One sees as there is technological progress there often isn't societal progress and we lose track of our humanity. I went to vote today and with my physical disability having advanced to this point I could hardly speak and some of the people there were joking a bit, not knowing that I have a communication disorder from my physical disability. On the way back I saw a homeless man who lives in my neighborhood. Some people laugh at him. Some people are frightened by him. Some people occassionally give him money. But no one thinks to help him find a place to live or concrete support or treatment (which he is in need of). I thought of this myself a few months back having fallen down from a myoclonic spasm when I was in the city (with a home attendant ignoring me and talking on the cell phone, that is not usual, most are good people). Everyone walked around me. Some people were frightened. Some people were laughing. I had found myself in the same position. People have in a sense lost track of their humanity. I know that I have recieved letters of affirmative suppport and understanding from researchers into new treatment modalities (who have gained an understanding from my recovery from them) that will not cause my physical disability (as well as help for it to be treated). So I no longer believe it to be the powers that be. I believe the capacity is withim us to think of ourselves and our place in life first and not think of others who are less fortunate and whom within a moment we could easily change places with. And it is within our capacity to change that and reach out to others. But the more we don't question our life, if we have taken the right path and who we are, the more we are headed in the wrong direction..

"In a World We Don't Belong", Seeking Accomodations, Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia Recovery Continues

Oct 07, 2009 - 0 comments
Tags:

Schizoaffective disorder

,

Research

,

Recovery

,

glycine

,

NMDA Receptor Modulates

,

tardive dyskinesia

,

Tardive Dystonia

,

Tardive Myoclonus

,

Tardive Psychosis

,

Tardive Dysphrenia

,

Tardive Dysmentia

,

Tardive Tourretism

,

Adverse Side Effects

,

Disability Accomodations

,

Consumer Advocacy

,

treatment

,

catapres

,

Flexaril

,

Vimpat

,

dysphasia

,

dissociation



127588?1254959767
Today I went to my reassessment for Access A Ride. It was a year ago that I applied. I heard a phrase then and it struck a chord with me "in a world we don't belong..". Having auditory hallucination is psychotic. As is dissociation. However, in my case it was tardive psychosis (which is now in strong mitigation with a variety of treatments). How did they know? Well due to the glycine recovery"zero to little psychosis except during periods of spasmic activity". That's a quote from my psychopharmocologist to the writer of the book "Awakenings" (who I didn't see, any researcher I was in correspondence with would naturally not have their name printed w/o clearence). But was that specific psychosis? And loss of cognition? That's what tardive psychosis, tardive dysphrenia (which has a very exact criteria) and tardive dysmentia are being defined in me. In some ways things were worse this year. Due to me building up a tolerance to the Clonidine and Flexaril I had such marked dysphasia I could hardly speak. What was better? Well the Vimpat was helping on the dystonia and dysphasia and serving as a mood stabilizer (which I really needed in addition to the glycine as I had been rapid cycling, with the help on dystonic spasms and mood stabilization I am a clinical first so it will take many large scale controlled studies to understand them, glycine and the NMDA receptor modulates were already in Phase II FDA study before I started it). What did I tell Access A Ride about my disability? The exact truth. As I would tell my psychopharmocologist and movement disorders specialist. Or any doctor for that matter. The good part came in speaking to their staff psychiatrist. I explained to her about the glycine. And about the tardive psychosis. I certainly don't know more than any provider. But I do inform any provider I meet about the research on me. Which I did help initiate. Even the person functioning as a home attendant was interested as well. But its not "me" they are interested in. Its that I am helping advance research. And naturally, the researchers will make the final conclusions and it will take controlled studies to determine the results. And there is one definite "first". A consumer directed recovery. Hopefully that won't be unique. As with any system including community advocacy or the law,  I provide the information or testimony I know and they decide what action is proper. That's what a democracy is about. And the last collage I did was too horrific to post but I did a case study analysis of it and mailed it to my psychopharmocologist. And I also have been reading philosophy including Carl Jung. I am not just a series of neurotransmitters. But then again I am not just a "case". We all have our role in society and an ability to change things for the better. And working to advance recovery and research was my chosen goal. And my recovery is under discussion on a higher level. And I do look forward to positive findings. For all of us..  

We Can Change Things, Its Within Us..

Sep 27, 2009 - 2 comments
Tags:

Coping Solutions



124710?1254109659
I would like people to think about this quote. I politely avoided a religious or controversial work. But this is from a book by the famed Greek philosopher Plato that later defined our civilization as we know it. Much of it is still valuable to our society. But not all. Such as:
"Lunacy
Lunatics must not be allowed to appear in public; their relations must keep them in private houses by whatever means they can improvise".
Everyone here (and almost anywhere else) would disagree. But that attitude towards people with psychiatric disabilities pervaded our society up until very recent times. Much was done to change it. But if no one had spoken out people might still feel that way. Think about it. What you see in front of you as insolvable may very well be within your power (especially united with other people with like minds) to stop. Food for thought...

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

Sep 12, 2009 - 0 comments
Tags:

Disability Rights

,

Consumer Advocacy

,

Research

,

glycine

,

Glutamate Antagonists

,

Schizoaffective disorder

,

tardive dyskinesia

,

Tardive Dystonia

,

Tardive Tourretism

,

Tardive Myoclonus

,

Tardive Akathesia

,

Tardive Psychosis

,

Tardive Dysphrenia

,

Tardive Dysmentia



120911?1252819477
  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.,,,