Advocating for Treatment for Tardive Psychosis and Starting the Recovery Process

Today is the first day in years that I have been in the "real world'. That's typical after you take an anti-psychotic. Except this treatment is not used for psychosis in schizophrenia. Zofran is however, being studied for psychosis for Parkinsons and since my psychiatrist is writing up that I had recovered from that and saying that I potentially had tardive psychosis (still not an official medical criteria) what I came out was similar to that book by Oliver Sacks "Awakenings" which I am reading. The effect on the myoclonic spasms and the respiratory spasms was welcome relief to say the least but I never believed I'd find treatment for the tardive psychosis. But I had thought of that as an idea and presented it to my neurologist. It is still in research for any form of tardive dyskinesia and he hadn't heard of it but after I presented him with information he looked it up and I started it. I may have to appeal for Medicare Part D coverage but I've dealt with this as an advocate (a good start is the Medicare Rights Center). But now tardive psychosis is beginning to look more like a reality and now that there are medications that don't cause it (glutamate antagonists) and a potential for treatment for it, its a matter of networking and advocating so that the researchers can better understand it. They still haven't caught up with the other study criteria tardive dementia but I remember at one psychiatric hospital, this woman who was a wheelchair user (can happen in extreme cases of tardive) who did have dementia of some form but somehow was in the real world (could respond to direct spoken instructions) but had changes similar to me before treatment such as difficulty at mealtimes (as I had due to dysphagia), not wanting to be touched or approached (hypersentativity of the skin) and what appeared to be anger and aggression but was something else (psychomoter agitation). I knew something was up because the nurses didn't get angry but just acted quieted and unnerved and just said "she can't help it.". I am not a diagnostician of course and it could have been any form of dementia but that's how tardive psychosis and psychomoter agitation felt, that you were in another world, that the world was rushing around you and an anger and irrational hatred towards the world and in myself a feeling of dissociation (fixed delusions or various characters and places, in my case the Victorian era, the little match girl, Cossette from Les Miserables, the photo shows one recurrent perceptual hallucination). So a few hours ago I was in and out of this state and speaking as someone did from that era uncontrollably in a different affect and tone ("that is horrid") and now I "woke up". Its different from schizophrenia. I can describe it now. But now its time for other people to be able to "awaken" and for the people who prescribe the current antipsychotics to "awaken" to the fact that they can cause them (once the studies on me are completed) but for people (including the anti-psychiatry movement who has stalled the research on this by misusing it to say people should not take medication, they are wrong, schizophrenia requires treatment, as a recovered consumer I can say it myself) to "awaken" to the fact that there are new treatments such as the glutamate antagonists (of which glycine is one and others in study as well) that will promote a full recovery without causing. Well let's just say I've got a lot of work ahead of me but I'm seeing my psychiatrist Thursday and when the phrase is used "you'll be working with me" its not just parlance. We've got a lot of work to do.. for everyone. So everyone can experience the mental recovery I did without the tardive conditions, so all of them (including tardive psychosis) can be identified and treated and so the new treatments can come out. And I'll be talking to him more about it. And now with the physical recovery getting underway I'll be in a far better state to continue the advocacy. So yes today was a "breakthrough" but not just for myself. Maybe for many people. But they still have to write up what happenned. But now that they are getting interested it shouldn't be too hard to accomplish that and then we can all take it from there.