Aug 21, 2008
The truth is when you have tardive dyskinesia from the way many people feel "its the end". Many people with advanced forms of tardive dyskinesia are misdiganosed as "psychotic", treated in abusive conditions and can be put in long term insitutions. Not me. After my full recovery from schizoaffective from glycine and treatment for the tardive conditions from my neurologist I decided to approach it a different way, the independent living way. I wasn't going to put any effort into self pity or blame or who caused it, it was all going to converted into advocacy to make sure it didn't happen to anyone else again and that the glutamate antagonists would be fast tracked through studies (as I am advocating to have done) so that there would be safer and far more effective treatments. But how? Well the term "tardive empowerment" to me means accepting this disability but using it to gain leverage but not to take advantage or seek damages in lawsuits (as that only makes lawyers rich) but as an "in" to the system to help advocate for change and it worked. I went to my neurologist today and he was concerned about me speaking about the exact chemical mechanisms the medications he was giving me was something I as a "patient" couldn't understand. That's true. A "patient" couldn't understand but a "consumer" could. But I had "given" him something. In dealing with him before I had jucidiously settled some issues with the pharmacist when they was a confusion and a conflict between the two of them. This is called "partnering on recovery". I approach the system with what I need in a firm, knowledgable but non confrontational manner and they respond. My neurologist understood why at this moment I wasn't ready to accept Tetrobenezene and I had asked him about Tizanidine and he prescribed it. I never say "they put me on medication" or I am "compliant" but I take treatment all the same. I had found out about the rhodiola and he was interested in how it was helping me and I explained and discussed it and he accepted it because I had found out from a clincial research neurologist who presented before a Parkinson's group. And as for tardive psychosis which my psychiatrist is still researching and identifying I looked up some information on a book (not anti-psychiatry) that described tardive psychosis with aspects of psychotic depression and he is going to look it up to get a better understanding. When I had psychosis from schizophrenia it was terrifying because it took over my whole mind. Tardive psychosis once clinically identified, is something that emerges only during spasms and I do not have dissociative identity disorder and my psychiatrist has confirmed that. And since as I've learned from neurologists "dopamine increases the pleasure drive" it would stand to reason that a reduction in dopamine could cause depression and dissociation but after I wrote up what happenned in my terms as a recovered consumer let the researchers be the judge. But the one tardive "persona" of "the little match girl" is interesting in itself because the author of the children's story from what I've read in his biography had mental illness himself and a feeling of depression, self doubt and self loathing and his mother had actually begged on the street. So the story was really about his own inner sadness as well as his mother's tragic story. And the picture I posted as an icon shows a further aspect not in the story. Why does the girl have a crutch? She wasn't disabled in the original story. But that's how society felt about people with disabilities and often does now. Well as soon as feelings of self doubt or self pity emerge or those tardive personas the first thing I do is to reach out to someone else. Not to ask for help but to help them. And with all the energy I've put into doing something to change their lives for the better I forget about anything going on in my own that I physically can't change. Once during a state of dissociation from tardive psychosis I said "I have no happiness in life. The only happiness I have is through making others happy" and then I "caught" myself and started laughing and said "happiness is happiness and if it comes from valuing others rather than self obsessing than actually its from recovery, not the opposite". I saw my cousins recently whom I hadn't seen in years and they were college age and I could relate to them well as I engage people well these days since recovery but after sitting for a while I walked out into the other room and dropped to the flloor and had full monoclonic spasms. My mother said "just tell them you have to go" but I told them the truth. Not too much but enough. They appeared a bit distressed to see how bad it could get but I had nothing to hide and people shoud know. I explained it briefly and wished them well and they accepted it. My psychiatrist will be on vacation in late August as most people's will be but I spoke to my neurologist and said "well since its neurological if there are difficulties I'll call you" because my psychiatrist's alternate would not be familiar with all this. But I won't be worrying about all my issues that are bottled up until my psychiatrist returns as I was years before. I'll be waiting for any chance to advocate, to make a diffference and to further the research as much as, I a consumer advocate can. After a year of recovery on glycine the difference is day and night. Now its time to give that oppurtunity to recover back to other people.