Apr 21, 2009
Tommorow I will be having a visit for a representative to evaluate me for home attendant service. I need that to travel on Access A Ride. As I said "homebound" doesn't mean "self isolating" but I do want to get out into the outside world. Here's another accomodation that will help. The TTY is already in place and I'm explaining to people how to use it. It essential for me and not so hard for other people to learn how to use. And I'm working to try to find more medications that the movement disorders specialist I see could try me on. I was allowed to start the ginkgo again but although the bleeding stopped there is some prostate irritation and I would of course want some standard medications. Of course they will be looking for me as well. But although there are studies on medications for tardive dyskinesia there are none for tardive psychosis, tardive dysphrenia and tardive dysmentia. I am advocating for those. But in the meantime I've found what helps tardive dyskinesia helps the "hypotheticals" as the researchers agree. And once again due to the increase in bleeding ginkgo causes I wouldn't suggest it. It does help tardive dyskinesia though. Markedly. As the (standard clinical) studies are bearing out. And perhaps they will develop medications from it.
But am I the only person in the world? No. No matter how bad things are I still have to think of others. My grandmother of course. I had to visit her today. She was of course upset with my grandfather having died. And it was hard for her to see how I was. I spent most of the time talking to her about my grandfather and his meaning in all our lives. But I appear to be someone who can hardly communicate physically. But I explained to her the disability was physical (tardive tourreticism, tardive dysmentia) that was affecting my speech and cognition and that I understood what she was saying and due to my mental recovery from schizoaffective (due to glycine) more so than before. And she did understand. And I said "I don't feel sorry for myself so no one should have to". And she certainly understood that. I was there for her. Not me. And I did try to be supportive but she needed some time for herself. And my mother is still approaching treatment for the bipolar and is beginning to understand why "factual" as a concept makes sense. Why put excess emotions where there need be none? But a person can't control it on their own. It needs treatment.
So what is this photo? Well a still shot from a turn of the century short film. And the most common dissociative hallucination from the tardive dysphrenia I have. As in the story (in the author's mindset) there is dysphoric mania with dissociative depression. And "lost in the cold" feelings of hypothermia but in me tactile hallucinations. And changes that are triggered off by lights or sounds but having been ruled out for epilepsy and treated with anti-Parkinsonian medications they know what they are. And of course the knowledge that when I see my psychopharmocologist or movement disorders specialist I am working on recovery goals that are not just myself but for others. I can't say for the tardive conditions "there is no way back". They are treatable. But as for helping advocate for new treatments yes I do always intend to work with the system. I am not alone. I am not "lost in the cold". And as for having "the mental recovery I did without the neurological disabilities" all interested parties can find out and when the new treatments (glutamate antagonist anti-psychotics) are FDA approved medications people will be able to perhaps experience what I did firsthand. We are all working on this and the researchers lead the way and I do my best to illuminate their path. Knowledge is empowerment and in a scientific sense is what enables one tentative result to become a fact. We are all staying factual now which in recovering and understanding life is a very good idea. For everyone.