Sep 14, 2008
Today was my day to present. I wasn't officially part of the presentation but I made let's say I crashed the party and invited myself lol. Seriously this was an official presentation about treatment options but I mailed a letter to the director of the psychiatric hospital through my agency and my psychiatrist sent him an e-mail confirming my recovery with glycine "as good as or better than all FDA approved medications". The director was speaking about conventional treatments that exist now and their options and then he got to glutamate antagonists (officially NMDA receptor modulators) and he said "I believe there is someone in the audience who wrote to me who is on glycine" and I raised my hand to speak and detailed about how I had recovered from glycine and that within conventional treatment because I had tardive dyskinesia in various severe variants (including tardive psychosis, which I confirmed was in study by my psychiatrist) and asked that since the hospital had been known for initiating research in the United States into Clozaril and made it a reality, were they studying anti psychotics involving glutamate receptors and he said they were. I then asked him about studying tardive dyskinesia to identify it before it got as advanced as in me and he said that much progress had been made. I also asked another psychiatrist about research into the congregruity of bipolar with psychotic features, schizoaffective and schizophrenia and she said that there were identifying the genes and there were some overlaps between bipolar disorder and schizophrenia. And I did some consumer networking which I cant' discuss as its confidential as did my mother who accompanied me and interesting enough my mother is coming to terms with the fact that she has cyclothymia (a mild version of bipolar disorder) and we are both realizing what's going on with that. But yesterday the stress had worsened the tardive conditions and there were full attacks but having written under my psychiatrist's direction to the author of the book I discussed in the other entry though my agency its likely that the tardive psychosis which is markedly similar to the Parkinsonianism he identified from post encephalitic complications will get an official name. Its like the old cartoon "How a Bill Becomes a Law" so here its more like "how does the theory of tardive psychosis become a fact' Well stay tuned.. But the tardive conditions yesterday were at their worst. I was listening to some classical music on internet radio and I entered a dissociative state and had myoclonic spasms and fell down and in an episode of tardive tourretticism shouted "Shostakovich! Shostakovich! Shostakovich!" which is from a dissociative delusion of the composer Shostakovich visting the United States and being called by anti communist protestors to defect. That would be a delusion but since it occurs during motor spasms and only then its being classified as tardive psychosis. And I was in extreme pain as I was this morning but suffering? I was getting ready for a major presentation. Stigma? Considering that I was spoken to as an expert in the field I was an honored guest. And shame? For what. I was benefiting consumers and science. I had something to be proud of as an accomplishment. I remember when I first went to that hospital (it has changed administrations then as well as practice) when I was first diagnosed with schizoaffective in 1991 I started having a dystonic reaction and the nurse said to my mother in an irate manner "he was fine until you came" and they let me have a full dystonic reaction two days in a row until they could find a shot of Benadryl. And my mother said years later they said to her "your son may get tremors". Well unfortunately its a lot worse than that but if I hadn't been on antipsychotics I couldn't have functioned all these years but they did need to let me know how bad tardive dyskinesia can get. But now they let people know. And Clozaril is an option but with the blood dyscreias it can be risky and many people end up feeling sedated, sick and weak overall and having severe anti-cholinergic effects as I did. And in me which is a rarity it caused extra pyramidal side effects. And I ended up with suicidal ideations and was switched to Invega but I knew that would worsen the tardive. And that's when I found out about glycine. But for some people glycine is only an adjunct for negative symptoms but there are other glutamate receptors in study that will be primary (stand alone) antipsychotics. The director of psychiatry noted that today. And without me even saying it he said that the terms "compliance" and "adherence" were becoming outdated which was great to hear from a director of a psychiatric hospital. Because that's how I believe too. In "partnering on recovery". And just like science has shown that mitochondria were once seperate cells that integrated themselves into the cells of the body we know today I am now the "mitochondria" of the system. I didn't bend to it but neither did I abuse it. I integrated my ideas into it. And we're all working together. So unlike other times I had visited consumers at the hospital I didn't feel frightened that I would "get locked up" because of the recovery from the glycine and because I had nothing to fear and because I know no longer believed there was a "system" to fear. We were working together. But for a "cell" to function it has to duplicate. Its up to the researchers to duplicate the recoveries. But as for "science being asleep behind the wheel". Well they were. I just woke them up. But there's my part too. I want to incorporate the consumer/provider model into psychiatry. Well it seems they are understanding that too. But you can be a part of that as well. When you find out about new treatments speak to your psychiatrist, do expect to get treated like a human being but treat your provider with the courtesy and respect they deserve and let them know when things aren't working out and when you have side effects and when you are not doing well mentally. And understand what you are taking and why and how it helps. You like me are a person with a psychiatric disability. You are strong. In unity there is strength. And together we will work to advocate to make things better, as consumers with our own treatment or as a whole. And yes there were plenty of days when I was manic in the past when I thought I was part of some historical change. But today was a turning point in history in publicly identifying the first recovery outside of study from a new and innovative treatment. And even the psychiatrist said that "A Beautiful Mind" was getting there but a bit unrealistic and I agree. I am not inspirational nor do I want to stand on a pedastal. I can't change the world alone. People always say "I am the captain of my own recovery" except my ship is for everyone for all consumers, not just me and I'm making sure its heading in the right direction. Come aboard.