Today was an important day for me because with encouragement and assistance I took some steps to return to society. I attended a jazz festival (some of the concerts) and in reflecting on it it reminded me where I have been in life and others as well. The music was free jazz not meaning "free" but as in highly improvisatory and discordant. Free jazz has a fascinating history (I'll put search phrases for the youtube footage of the various musicians). Free jazz has a character of expression of longing, of liberation, of the civil rights movement and indeed of spirituality. If you google "John Coltrane, A Love Supreme Live"(the two movements of it "Resolution" and "Acknowledgment" there is footage of the actual performance live and that and the song "Alabama" (commemorating a tragic event in the history of the civil rights movement) and the character and expression of the music take on spirituals as well as other music and incorporate it so it is a further exploration of what jazz is. There is more to it than that and much of it worth reading about and listening to.
    Now as for the concert I attended (which was one day in a week long festival). The main musician I saw was Sonny Simmons (if you put his name and "live" as a search phrase you can see what the concert was like the concert itself was being videotaped by some people and may be uploaded at the same time as is traditional every year an artist was doing an expressionist painting to capture the feel of the event but also portray the musicians. The space itself had some history and was a community center on the Lower East Side of Manhattan. Of course at the time that it was built, jazz basically didn't exist but there were some innovators who originated the genre who were still around (one essential figure is Louis Moreau Gottschalk who was incorporating some of the elements of Creole into classical music, he himself was of partial Haitian descent, another worthwhile listen). The concert itself (the show I went to see) was brief and to the point but also had a more reflective moment at the end where the main musician played on oboe (to play this instrument free jazz takes great skill).
   The free jazz scene for a while had been dormant. Spaces were gone due to gentrification. Musicians had stopped playing and some were even homeless. However those who cared got the scene back together again and worked to have the musicians who had fallen on hard times have a network of support so this wouldn't happen again (from non profits and other agencies as well as donations and of course people attending shows, one musician even set up his own venue for other musicians who might well have otherwise not had a chance to play). So I thought about that for a while. And reflected that my ancestors who lived in that area had worked together as well to get where they were in life. And later on as my family worked that way as well. One didn't know what would occur in life but one knew not to give up (the image is a sketch my grandma did of jazz musicians, that was before she even met my grandfather, now passed on who as I've said played with the big bands in the 40's, at that time individual musicians didn't receive recognition on recordings so although he could name what recordings he might have played on we didn't know for sure).
   I reminded myself how I never would have gotten into enjoying music if he had never introduced me to it. And I said to myself that was the best course of action for me. I had put together my accommodations. The people at the concert space after I contacted them had accepted them. I communicated by Ipod (as I cannot speak coherently without choking due to dysphagia) and received some help finding a seat (as I become disoriented during episodes of catatonia and dementia) and I was very appreciative. And so it reminded me that despite a new marked series of limitations that with the appropriate accommodations (and physical and mental recovery) I could through working with others be able to be a part of society. But I needed (as my psychiatrist told me) to take some time to enjoy it as well. As Miles Davis said "I'll play it first and tell you what it is later"..

I was very depressed today. Things have not been well in my family. My mom is finishing a series of tests after a a minor operation for melanoma. I have been supportive of her but from what she has informed me there is not much we can do until the tests are over (so far they are showing that they were able to stop it in time but that still has not been confirmed completely) Other family members have not obtained the recovery they sought for their disabilities or those of their own family members. Some family members have been affected by today's economic climate. I have been isolated and aside from a daily walk physically homebound and as some people have left my life, increasingly cut off from society. Best I could do is take a long walk to the local botanical gardens and although it was a pleasant walk there wasn't much there. To obtain community integration and social functioning I require accommodations.
  However today was an important day even though nothing major happened. I went to the supermarket and encountered an attack of atypical catatonia. I had put all the items I intended to purchase into a small cart that I could carry but as I become physically disoriented in crowds had lost the cart and was about to drop breakable items. One of the people who worked at the supermarket rushed to help me from not dropping anything and brought what I was going to purchase to the line. After purchasing what I needed to I then thanked them but they were polite and not condescending about it.
  I did decide to think about things and it made me feel better. Firstly I should focus on those who had helped (for example a relative's friend is researching assistive technology for me, I was able to use that temporarily at an appointment with a dermatologist and it went fine). Another relative is asking around about home attendants who people could recommend. I should be appreciative of them and thankful for the people who didn't understand my disability before who do now once I explained. I also should continue to help and to advocate for other family members who need it as I have been. And I am trying to return (and have to an extent) with some of the advocacy I do in general. Sometimes things can seem (and sometimes be) very depressing. I always pass by a man who is homeless and could benefit from housing, treatment and other needed supports and services and am frightened that I will end up in that position. I thought that over and reminded myself that that was just negativity, that if people worked together perhaps that man could have the help he needed. The truth is I had descended to self pity which is the worst mindset. I know that I am thankful for the help that person gave me because I was in a physically unsafe situation. But I am also thankful for what they gave me to think about. And I intend to work with that and continue to change what I know I can with my situation which is my outlook and mentality. And with that approach perhaps further things will change from there....

  Today I went to my neurologist who is a movement disorders specialist after having gone to my psychopharmocologist last week. I was very concerned about the symptoms of the atypical catatonia (what it has been officially classified as) as were they. I was given some up to date clinical literature by my psychiatrist on catatonia in general and at this time there are not that many options (nor is catatonia as a whole entirely understood). One option that interested me was trans cranial magnetic stimulation (which is in clinical study for tardive as well) but that's still in clinical research  (although showing promise). However my concern was what was the cause since although they had agreed that it was neurological there was no specific diagnosis. However I did find some worthwhile clinical literature online (a clinical finding within a psychiatric journal of temporary neuraleptic induced catatonia). A family member who is a researcher (although not within medicine) opened the study for me (as only researchers can access it) and it was faxed to their attention. I asked if there was the potential of this occurring as a long term side effect and of course although this has never been documented as it is responding to treatments that are showing efficacy on tardive (for myself as like that study a clinical finding, which means it was noted in one person and not conclusive as to whether it could occur as a whole) which include VImpat and Lovaza as well as treatments that help tardive in standard use (Catapres, Klonopin) if a Pet scan could be conducted to understand if this might be the cause. The idea came under consideration. Then I had some work to do of my own. There was a very hard first step. Respect boundaries.
   Truth is so much of my ideas, the thought process and goals were grandiose and inflated before. As well as the way I conducted myself in the office that I knew that it was time to settle down. In general in life as well. And to set more realistic goals. One realistic goal was to track standard recovery issues as well as potential clinical unknowns and of course the fact that at times certain medications and treatments could cause mood flare ups. The answer which they were receptive of and helps me as well was to put together a spread sheet (many of these clinical concerns people generally don't experience so would not be in a standard mood tracker such as catatonia and dementia) with symptoms and what they responded to and when and the potential causes. And to do this each day. I looked back and before some of the mental recovery I could not have done a spreadsheet on a computer. But of course I could tie my shoes. Now with the tardive dysmentia I cannot and require shoes without laces so I wear shoes without laces as an accomodation. But as part of my recovery goal at all times I would discuss standard psychiatric concerns as well (and what might cause mood flare ups which I noted as occurring today, timing of treatments and medications is key, some of them when taken later cause mood lability). And now that my mother is following up on her own mental recovery that we would respect each other's boundaries and as my psychiatrist directed not comment on each other's disabilities but as was my idea and within the family as a whole understand and advocate for each other's accommodations.
   People within the family who have disabilities in general understood I did have knowledge and was willing to help out. So two things occurred. Firstly I found my place in society which was equal to that of others, the way I wanted to be treated. But in return I had to treat others that way as well. And the loss of this tone of superiority also helped me to lose this feeling of apartness. Both were part of the same poor coping mechanism. So although in some areas there were marked deficits which required accommodations with those addressed (which will take some time) I could get back into the world. And at the same time something else happened (and the causes were multiple some were neuropsychiatric some may have been mental). I began to gain my emotions back. And the last goal that was crucial was self control. Self control meant having a defined sense of self. To return to society. And reality as well. And the year was off to a good start...

  Today was a better day than in a long time. My psychiatrist had prescribed me Lovaza as a mood stabilizer a few weeks ago. It also in augmenting the glycine, as a mood stabilizer just like any standard antipsychotic for a person with schizoaffective was working on standard psychosis. Psychosis along with standard mood swings that were effecting thought and judgment. Paranoia, grandiosity, inflated sense of self importance. However I didn't see my psychiatrist yet although I updated him by phone. I had followed up with a blood test (at his encouragement, this was facilitated so I could have this done as a person who is physically homebound at my apartment, my doctor set this up from the blood lab he is associated with). I saw my neurologist who is a movement disorders specialist. The Lovaza was treating tardive dystonia. This is a clinical first and one that was within potential since it is related to fish oil which has been shown to treat tardive dyskinesia is some studies. But there was something else I was there to tell him. The truth.
   In all these times before I had discussed physical symptoms and had explained what might be neuropsychiatric. I had failed to discuss what was obviously psychiatric. Withholding information is manipulative regardless. However this was a symptom in itself. This time I did things correctly. With that aside we then discussed what could be neuropsychiatric. The catatonia was classified as "atypical catatonia" and stated as neurological. I had recognized that the Lovaza was helping on psychotic thoughts. I could feel it. The world outside didn't appear in some way frightening and falling apart (there has been a tornado and they were clearing the trees afterwards, that had been highly dangerous but it had nothing to do with my physical symptoms such as dysphasia that could be unsafe for me at times . Linking the two was vague and tangential). I had experienced that help before with convential treatment. However there was another effect. I awakened out of a catatonic state. That I had not experienced before and although I could describe it at the time, I could not step out of it. With that treated the "death like" effect and the slowing down of space and time (also part of the tardive dysmentia which it is treating as well) responded began to clear. As well as the tardive dysphrenia, which is a very specific clinical criteria in study, meaning that tardive dyskinesia has spred to the limbic (emotional) system so that when I experienced emotional thoughts or memories it set off convulsions. That has began to mitigate as well. And standard issues such as returning to normal bedtime hours with rapid cycling not interfering. Please note all of these criteria and beneficial effects although noted with standard researchers until clinically documented is still tentative and even then would be a clinical finding not a fact.
   So with my neurotransmitters in touch with it each other it was time to be in touch with the outside world. To go back to seeing family. To see my remaining friends. And to make more. And to get back to advocacy and other issues that have meaning in my life. And to remember where I was until then being that fall and especially Halloween was the onset of a very frightening anniversary date (a standard term where an emotional of an unpleasant time creates flare up symptoms) of when this all started a few years ago. Well thanks to the treatment and follow up I received, the anniversary date has been cancelled. Its time to see what real life events will take its place and plan them...