Dec 20, 2009
Today was perhaps the most important moment in my life. My glycine recovery having made the rounds I knew that my recovery from the neuropsychiatric aspects of tardive still under study had to as well. They just did. I recieved correspondence (no further details will be provided as I respect confidentiality) from one of the authors of the criteria "tardive dysphrenia" (please note this a clinically detailed criteria that was documented inconclusively by standard psychiatric and neurological researchers decades ago and being part of the medical model thankfully never ended up in the wrong hands of people who were anti-treatment). I still experience it and in one dissociative dream I had yesterday there was a whole shelf full of old textbooks that I couldn't open. The symbolism was obvious. I had to do my "home work". So I did. Now my neurological recovery is in the rights hands. As to what happens from here that will only be posted with specific permission.
I remember the two worst moments of my life. One Christmas (the reason that holiday was celebrated in addition to Hanukah was because my stepfather was Protestant). I felt dull and dead to the world and had stopped enjoying life and lost all my friends. I was 13. That was when I first acquired schizoaffective disorder (that specific symptom is anhedonia). Medication of course improved that. Then another one was 2 years ago. Having recovered with glycine, there was a seperate psychosis and feeling "dead to the world" and "lost in the cold" (thus the "match girl") with dysphoria and dissociation that was accompanied by dysphagic choking spasms and tic like vocalizations (direct quotes from my providers). No one knew what that was. Having done some research of my own and testimony I was referred to a neurologist who was an expert and professional in the field. I worked with my neurologist and psychopharmocologist to help identify what was going on. Now we all know. But who else would? In one short day and an email, I made sure others would. So thanks for everyone's supportive advice and ideas. As I am homebound (which I am advocating to change with supports and services) I'll still be here. But the more important question is where are all the other people with tardive psychosis/tardive dysphrenia/tardive dysmentia (please remember these are clinically unconfirmed criteria and when done so will be extremely adverse side effects and should not be thought of as reasons to be afraid of treatment)? Well now that question may very well be addressed on a higher level (and remember I am literally the first recovery with Vimpat, its approved use is for seizures). I remember as the schizoaffective disorder advanced when I was 17 in advanced biology class quiting the class and having to hand back my text book after I could not process ideas or thoughts (the cognitive symptoms of schizophrenia) and staring at a blackboard with the respiratory cycle on it which I could neither process nor understand. But some part of me thought that things could improve. And that somehow I could help advance research. That part of me was correct. As I always say if you don't give up hope and actively seek it you will find it. And now I leave the stage (this old movie still is exactly what the dissociation from tardive dysphrenia looks like) and the curtains close and behind the scenes the researchers will be hard at work. I look forward to a successful production...