Oct 07, 2009
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..