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Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia, Atypical Catatonia Recovery Continues: "Relativity" Attending the Concert of "Einstein on the Beach"

Sep 25, 2012 - 1 comments
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The revival of the 1976 Philip Glass opera "Einstein on the Beach" was a one time only event that due to the age of the performers was stated wouldnt happen again. It was also a good chance to track my recovery. Before the concert I would hear a voice (auditory hallucination) stating "now you are going to meet Einstein". I was aware of course that this was a delusion. The problem is it was clearly seperate from what had occured before because every time it happened my hand would make a physical motion of shaking someone's hand that if stopped would be physically painful (these changes occur during episodes of atypical catatonia, the specifics of the neurological disability I have are still in clinical study). The concert space I went to (with a family member to assist) was more than helpful as regards disability accomodations I needed (of course I contacted them first to inform them which is the best thing to do if you need disability accomodations anywhere).
  Anyway back to the concert. The idea of minimalist music was not invented by Philip Glass but he became the most noted name (this was at the time, his compositions after that changed in style). The creation of the opera has an interesting history. Much of this information is online elsewhere. The most interesting part (that is less discussed) is the libretto (which is not sung in conventional operatic style) most of which comes from the poet Christopher Knowles who has autism. It would to many people sound random in nature. However what you could pick up from it was repetition of what would have been on the radio at the time (echolalia) and word fixations. I encountered the same concerns when I first had the manifestations of schizoaffective disorder.
   The subject of Albert Einstein was not plot based but in some manner focused on his decision (as a pacifist) to voluntary disclose the means to build an atomic bomb to the government at the time. One could see that in light of what might have happened he clearly made the right decision. One could also see that far beyond him the creation of this idea lead to what later became a global nuclear arms race which he himself was clearly opposed to. What is more important to me was his ability to make such a decision in a clear light as well as of course his work to not just advance but in many ways initiate nuclear physics. However his life had other aspects as well such as difficulties in interpersonal relations. It has been speculated that he may have had a psychiatric disability (I wont post the links to the articles because they although fact based dont have a disability positive tone, also the idea of a "savant" is a myth that in itself is stereotypical and derogatory). In fact a friend of a relative had met Einstein (without realizing it). They were in an elevator with what they thought was a homeless man that unnerved them. In fact they were told later it was Einstein. So as with historical figures who were diagnosed with (known) psychiatric disabilities he had aspects of his life that he could carry on with very well. And other aspects that were impaired. So it is not as simple as overcoming a disability but as being able to cope with it, note where it effects your life and to do so often treatment is needed as well as talk therapy.
   Some of what Einstein theorized is not something a person could understand literally. The idea of space and time being the 4 and 5th dimensions can be understood scientifically but are not within the human mind as space and time are something we accept as a given. However of course everyone knows what space are time are. That would not be true if a person has a disability that affects space time perception. When I encounter episodes of dementia (which has been noted as the criteria in study tardive dysmentia) and atypical catatonia I lose space time awareness and cannot process or comprehend the idea of time. Unlike mania (which of course I experience as well) where I feel sped up it seems like everything around me is sped up because in reality my thought process and ability to perceive things slows down. I also cannot process the concept of every day tasks such as picking up objects or washing dishes. Anything that falls down (simple items such as change) will seem like it "flew at me" (this can be a common tic like utterance I have). However what I have is responding to treatment but as there are continuous breakthrough episodes and my psychiatrist is trying to help me be able to be part of a clinical study for transcranial magnetic stimulation which is FDA approved for treatment refractory depression but has shown in tentative studies to be helpful for schizophrenia, tardive dyskenesia and in some individual studies catatonia (regardless of cause).
  When Einstein gave a speech at the 1939 World's Fair as it had started raining he made what either was a joke about it or scientific notation (or both) by saying "its only water". What we note besides being a scientific phenomena is also something we emotionally respond to. Every thought we have is an exchange of synapsis by neurons in the brain. However its of course a lot more than that. The blunting of the emotional process I experience has a variety of causes some clinically complex. Experiencing emotions can set off movement disorders or atypical catatonia. However there are common causes as well (I have never been able to state directly refer to the name of my psychiatrist or any of my other doctors as well as some other people, this is a negative symptom of schizophrenia). All of this overlaps.
    The concert was an indescribably amazing experience. As it was a co production with the performance artist Robert Wilson the stage sets and lighting and basic effects could easily convey ideas with a short statement that were profound and in some cases somewhat disturbing. The way to listen to minimalist music is not to approach as something to consider as each segment as a whole but as an experience. One can relate this to the continuing metaphor as part of the stage set up of a train (relating to the theory of relativity,  you can note this for yourself if you take a train, if two trains are going at the same speed they appear to be still, if two trains are traveling in different directions they appear to be moving faster). When boarding a train the main concern is to get to the intended destination, not to concern yourself with each stop. This had been the main concern in my life both literally and metaphorically. Life had come to a halt, metaphorically in that I wasnt doing much and as regarding trains in that I could physically could no longer use them because of dystonic spasms and atypical catatonia. Recently I had used the train more times to go to the city to museums. And of most importance to go to my psychiatrist last time. Something that hadnt happened in the 4 years since I became what was at the time physically homebound due to advanced tardive dystonia. What was working on the tardive conditions, atypical catatonia as well as standard mental concerns and exactly how was something my psychiatrist and neurologist could decide. The fact that it was happening was what was crucial.  Life was moving forward again.


New Poem I Wrote About Concert I Attended

Jun 13, 2012 - 4 comments
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history

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Tardive Dystonia

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Phrasing: (in 3 Parts)

Crescendo
It was just last night that I saw the ensemble by the musician Jordi Savall
He was one of a few musicians who had breathed life into medieval music
Before I entered the concert I was distressed
My life not being what it had been made me want to close
what had been the past
At the Metropolitan Museum of art where the concert was
my mom asked me if I remembered when I was a kid
and my piano teacher spoke to someone who showed us
the museum on a day it was closed
and if I could remember the Temple of Dendur (Egyptian art section)
I said I did want to bring up memories
they had been taken from me as I had dementia and catatonia
  So I sat down in trepidation and within moments
the audience had faded into the background
and at center stage were 3 musicians
who breathed life into the past
Medieval dances and songs
by long past writers
some known some anonymous
and instruments that would otherwise
have been lost to history
such as the rebec and ud
that evolved into the instruments we know of today

I let my mind drift
one could see courtesans and common people both
and their lives long since gone fleshed out
the past the buildings I had seen when I visited Spain
a decade ago
churches and castles gain inhabitants
It was a time when the different cultures lived together
and shared ideas and brought together
a society where people could live equally
but like all things it came to an end

and then there was a pause

Lament
  Then there was a break
He told us of the instruments
have been lost to history
such as the rebec and ud
that evolved into the instruments we know of today
and their history and he then said
he was going to perform a requiem
for people who were no longer with us
People who had lived in fear
Such as conversos(term meaning Jewish
people who in historical times could not practice their religion)
and noted that he himself having performed for 45 years
had himself not always lived in freedom (in recent times)
and was thankful he could now
the music had a wailing tone for lost souls
that could not breathe free
and perhaps for others elsewhere
still alive who could not as well

He then played a piece for his wife
another musician
who had passed on
He played a recording of her singing
and the group played instrumentation
that carried her intentions to fruition
One could hear a lost voice brought to life
He said that if people were still spoken about
That their memory was still alive
and that they were still with us

I then spoke to my mom
Things had changed
I could now remember
the museum the day
I was allowed to see it
as a young person
when it was closed to visitors
Everything appeared so forboding and strange
but yet tangible

could remember my piano teacher
and how he had taught me to love music
and how at a time in my life
when people had left me he had suddenly passed on
and the sudden sense of loss

Improvisation
  
  I thought back to a few days before
when I had walked through the east village
where I used to feel accepted
and how much things had changed
and how I felt quite so alone
I no longer wanted to be different
I just wanted to be accepted
but as I could no longer physically speak coherently
and slipped in and out of catatonic states
as if dreams had taken possession of me
time had taken its toll

What was genuine had disappeared or was vanishing and
What was commidified and gentrified had taken root instead

I walked into one of the last remaining record stores
the cd's were stacked to the ceiling precariously
The owner of the store was hesistant
and somewhat edgy and the cd's could at any moment
with one motion fall
I realized he could not help but think otherwise
This was his world
He said with a sense of accomplishment "I just put them in order"

I could not speak clearly and my voice was choked
but I asked him about a few jazz recordings
I might want
"haven't had that one in a while" he said
taking an interest and going through the collection
I said thank you as best as I could and left
Not many people went to that store anymore
He seemed glad someone had taken the time

The way my life had been over the past few years
with the people I knew leaving me
was like a series of doors
closing one after the other
with no chance they would ever open again
I thought back on what was a new chapter
in my life and realized that
it was me that was in the wrong
because I had forgotten to leave the door open



Attending Jazz Concert, Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia, Atypical Catatonia Recovery Continues

Jun 11, 2011 - 4 comments
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NMDA Receptor Modulates

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Jazz

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Disability Accomodations

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  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"..

Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia, Atypical Catatonia Recovery Continues: Simplicity

Jan 11, 2011 - 1 comments
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  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...