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Keeping Hope Alive, Last Day of Chanukah, Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia Recovery Noted

Dec 18, 2009 - 0 comments
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chanukah

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Recovery

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treatment

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Tardive Dysphrenia

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Tardive Dysmentia

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Tardive Psychosis

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tardive dyskinesia

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Tardive Dystonia

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Tardive Tourretism

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Tardive Akathesia

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Vimpat

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Movement Disorders Specialist

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Psychopharmacology

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Consumer Advocacy



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  I knew I had missed something. I had always seen my mother light the Hanukah candles since I was a child and say the recitation/prayer but this year I had not. But today was the last day of Hanukah. And I visited her. And for an important reason as I was seeing my neurologist who is a movement disorders specialist. And it was the first time he had seen me on the Vimpat. And he was quite satisfied with the results (remember this is the literal first time it has been used for people on dystonic spasms). And with my uncle who is a researcher  having found the original animal research online and me presenting it to my neurologist and psychopharmocologist months ago and working to document the neuropsychiatric aspects of tardive (they both were handed a seperate case write up today, its just become part of how I do things, it helps documents unknowns that cannot be objectively noted), in many ways it was a group effort. And Monday I will be going to my psychopharmocologist who is noting the mood stabilization effects (again a literal first). But there has been much unhappiness in the family. My aunt just found out she has insulin dependent diabetes. My grandmother is alone in the house (with my grandfather having passed on months ago) and can be unsafe at times physically. And I was denied for many accomodations I need for my physical safety. My mother was having trouble adjusting to the idea of treatment for cyclothymia (mild bipolar) and discontinued treatment. So there was much emotional stress today. But as the Hanukah candles were lit for what was the last time this year and were almost burning out and my mother was a bit distraught I pointed out to her "Think about it. Remember the meaning of the candles. Its about survival. We have to unite and work together. All of us." and she said "I never thought about that." Perhaps it was time to. Well my aunt is taking proper steps towards living with diabetes (seeing a nutritionist and endocrinologist). My mother agreed to take my grandmother to her neurologist to be evaluated for a home attendant (I will be helping out with the pragmatic aspects and research) which is the first of many steps. We will be working to have a lawyer assist me as regards the accomodations. And she agreed it made sense to go back on treatment. But her recovery is her life.
   My recovery is mine. But as I explained to my neurologist as the Vimpat was being adjusted I had one near death episode from dysphagic choking spasms and dissociation/dysphoria what they are categorizing as tardive dysphrenia. I knew to immediately take the prescriptions but I took the Vimpat first (to see how its effect was specifically) and as it was efficacious on all aspects of what it was treating. So this is the first use of it for dystonic spasms. The first use of it as a mood stabilizer. And the first clinically noted case of tardive dysphrenia (a very specific clinical criteria that was inconclusive until myself). So out of a very bleak darkness came a very real light and new paths towards recovery. And what they do to help others will be their decision. But if I hadn't advocated for treatment those paths would never be open. Hope may often seem distant but at all times it must remain alive and the more you strive for it for yourself and others the more lives you will keep out of the very real darkness of this time of year.  

Something To Be Thankful For/Happy Thanksgiving To Everyone!

Nov 25, 2009 - 9 comments
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Thanksgiving

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Recovery

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treatment

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Research

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NMDA Receptor Modulates

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Tardive Dysphrenia

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Tardive Dysmentia

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Tardive Psychosis

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family

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support

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Disability Accomodations

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Schizoaffective disorder

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ginkgo

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glycine

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Vimpat



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  Today started off as a day where I was on the brink. And within a short time it reminded me of exactly why life is worth living and why I need to be around and how other people are actually kind and will help you and why you should provide that very same help in return. When I woke up I was having dysphagic choking spasms and dystonic reactions. I could hardly speak. During those times, neurologically I lose the will to live and I have a feeling of hatred towards others. I don't really "feel" this way. Its neurological and what they are defining as tardive dysphrenia. But being homebound and isolated and seeing other people enjoying life does make me feel burnt out. I did make one real world mistake. I went out to pick up some groceries. In doing so I left the keys inside the apartment mailbox. That "mistake" was from the loss of cognition from tardive dysmentia. But being mentally recovered I didn't panic. I rang all the apartment bells but no one answered. I bought the newspaper from the local store and got some quarters. I called the super on a payphone but only a fax tone went off. So I thought again. I went to the pharmacy that prescribes my medications. They asked me what medication I needed (Methocarb) and they gave it to me. They asked me for the phone numbers of my family. I could hardly speak. They said "calm down". I couldnt' physically and explained it was akathesia. Gingko is not a prescription but I am authorized to take it by my providers so I bought some and took a pill. It stopped all the aspects of tardive dyskinesia (its in clinical study). The pharmacy called my mother and she was on the way. I went back home. But having done it before I tried again to ring all the apartment bells. A person let me in. I called my mother on the TTY and let her know I was safe and sound so she could drive to my grandmother's house (who does need help on a daily basis). I went out to pick up the wash (making sure to bring the keys and any medication I needed for the day as well as the doctor's letters that explain what I have and what I take) and when two next door neighbors came in the door with heavy packages made sure to hold the door for them. Everyone had come through for me so I knew that despite any neurological feelings I could not control that any mental feelings of antagonism or self loathing must be cast aside. I reminded myself why I am thankful. I am thankful to be alive. I am thankful that my providers worked with me to identify what was going on (tardive psychosis, tardive dysphrenia, tardive dysmentia) and find treatments for it (so far Vimpat is really working out) and for the oppurtunity to have it be identified so others can be helped and having other people, as I have, recover from a new generation of antipsychotics that won't cause tardive (NMDA receptor modulates). I am thankful for the neighbors who opened the door. And I am thankful for my close friend who as it turns out will be visiting for Thanksgiving. I have every reason to be alive and everytime I experience very real pain physical I should remind myself I helped identify treatments with the help of my providers. And think of the others who could be treated.
  So to keep it short within a short time I recieved a very real world lesson on why the world is not an antagonistic place and there is good in people you may not know is there if you look for it. And to everyone, whatever you may be coping with, I wish you well and a very happy Thanksgiving.

"Pictures on My Wall" Into the Outside World, Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia Recovery Advances

Nov 20, 2009 - 2 comments
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Tardive Dysphrenia

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Tardive Psychosis

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Tardive Dysmentia

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Schizoaffective disorder

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catapres

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glycine

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NMDA Receptor Modulates

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Research

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treatment

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Consumer Advocacy

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Disability Accomodations

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Recovery

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Vimpat

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tardive dyskinesia

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Tardive Dystonia

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Tardi



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   It was good to have an out and about day which is rare for me but I want to increase as regardless of a severe neurological disability, self isolation is not healthy. However, my accomodations are physical and factual. I took Access a Ride and a family member accompanied me. I am still in appeal for a home attendant. There were some good exhibits. The new exhibit on the artworks of Tim Burton was interesting as I had seen his films but it was interesting to see his creative mind extend to artwork (which had dysphoric aspects, something I experience). Another exhibit was on new photographers and a third on the Bauhaus movement (German expressionist artwork of the 20's before a very infamous leader had it discontinued). Then onto another exhibit on El Greco. El Greco is an interesting artist not just because his artwork foreshadowed expressionism but because according to historians, he, like Van Gogh may have had temporal lobe epilepsy so to some extent a famed painting such as "View of Toledo" (a city which I visted before the tardive became this severe) may have literally looked that way to him.
  There are always difficulties and set backs from the public. One of the museums had set up accomodations for my disability. The other being a small gallery had not and a security guard kept asking me to lower my voice (I couldn't, I had dysphagia and tic like spasms, if I did I would choke). I asked my mother to explain and she said "he has problems" (the wrong thing to say because it could indicate a mental illness). I finally said "I have choking spasms" and then he understood. The Vimpat taken before dinner (at the same place which had Greek food) mitigated the dysphagia and enabled me to swallow dinner. Of more importance before eating I couldn't look at the candle on the dinner table because it created tactile hallucinations of burning. The Vimpat stopped that. The dissociation of the "match girl" is the same thing. Variances in cold (yesterday it occured and I realized I had to put on warmer pajamas). Light and dark (especially sudden darkness). And synathesia occurs as well. That is what they define as tardive dysphrenia. As well when looking at the paintings, which had the arms in fixed positions from various religious scenes my arm would physically jump to the same positions. The same thing occurs when I "experience" the persona of Napoleon. That is called echopraxia (mimicking motions uncontrollably, that can occur in catatonic schizophrenia). "Dissociation ranging to psychomoter agitation" is exactly like the awakening from a catatonic state before anti-psychotics existed as well. But of course I am recovered.
  But the aspects of losing orientation, space time relations and cognition are defined in me as tardive dysmentia (the Piracetam treats it, one day when it was very bad, I noticed a pill by the bed I had forgotten to take). Piracetam is an anti-convulsant from Europe that is in clinical studies for tardive. My neurologist wanted me to try Depakoate (which treats tardive, as well as being a mood stabilizer and an anti-convulsant) but my psychopharmocologist had on record (which I asked him to locate) the notation that it caused negative personality alterations in me but he will continue to research treatments. And although the spasmic activity and neurological alterations can be severe I have spent a very successful year advocating for these criteria to be noted in me. Now the accomodations must progress. And a very good friend is visting for Thanksgiving. Let's say I am prepared. It was a good day. Now as its the last day of the Catapres application (which is used for dystonic spasms) the tardive dysphrenia which causes dissociation and dysphoria has returned. In a short time I will apply it again and it will mitigate. The music is playing from an early album by a post punk band from a while back Echo and the Bunnyment "Pictures on My Wall" "Pictures on my wall are going to swing and fall". And everything does feel uneven. But it will soon regain itself. The question is how other people with advanced tardive can regain that balance. And I believe other people on a higher level are now asking that question as well....

"An Understanding", Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia Recovery Advances..

Nov 05, 2009 - 2 comments
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Research

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Consumer Advocacy

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treatment

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Mood Stabilization

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Recovery

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Schizoaffective disorder

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glycine

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NMDA Receptor Modulates

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tardive dyskinesia

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Tardive Psychosis

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Tardive Dysphrenia

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psychosis

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Tardive Dystonia

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Tardive Myoclonus

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Tardive Tourretism



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  Recently I saw (on two occassions) a red tailed hawk diving as it was hunting pigeons. That interested me as someone who enjoys bird watching. But it was what else I was noting that was important. Before the glycine recovery, when I was psychotic in a standard sense (this was clinically noted, as part of my self documentation of my recovery) I saw a red tailed hawk and thought (as when I was psychotic birds were "symbols") "a red tailed hawk is a regal symbol. that means something important politically will happen". The answer is of course no. After the glycine recovery I would know that was magical thinking. But what happenned recently? Well when seeing the red tailed hawk I knew something would happen. But to me. Feelings of dissociation overwhelmed me and my arm went up. That was tardive dysphrenia. I didn't "believe" it. As of now there is an understanding that I meet the exact listing for tardive psychosis, tardive dysphrenia and tardive dysmentia. As to where it will be discussed and noted that I can't say. But it has been identified in me.
  But what was "it"? Well let's think back. "Dissociation concordant with spasmmic activity". My hand was "holding" a falcon as in "the falconer". My hand went up in a tourrettic motion that was uncontrollable. The feeling was a mood disruption (grandiose as in controlling people and somewhat psychotic) and dissociative. The other aspect of dissociation was the "knight" which is "self humbling and fights for others at all expenses" (again grandiose but also the "armor" concordant with Parkinsonian motions). That's concordant with dissociative identity disorder as both aspects of me are "split" (a normal ego has both feelings of concern for others and feelings of self protection). But I am not diagnosed with dissociative identity disorder and I never had it before treatment or when I lacked the self awareness and stopped it in 1993 (with predictable results, psychosis and hospitalization). Tardive dysphrenia is a very specific clinical criteria that was studied and until myself found inconclusive. The "dysphoria" is noted as the mood is vague and negativistic. The "tic like motions" are the involuntarily motions of the hand. The "obsessive" quality is obvious. But I was doing more than advocating for an adverse side effect I experience. I was also asked about my personal life (just any person's standard visit to a psychiatrist) The normal gender/age thinking of the dissociation had been regained so within that aspect there is clear personal improvement (as the family member that caused those feelings is now under treatment as well and no longer being controlling due to their own recovery). As well the Vimpat is showing promise as a mood stabilizer (as noted a literal clinical first that will require much further research if clinically noted).
   I also have thought about people's reactions to me. I know longer have paranoia or phobias of course. However, once when I forgot to bring along the gingko (which clearly helps on tardive dyskinesia in me and in clinical studies, although its side effect profile is of concern) and these children made a hostile remark "that man's face looks like a mask". I thought back. "Mask like faces" was the first description of Parkinsonism. Tardive dyskinesia was named as a criteria in 1965. The unknown criteria of tardive psychosis tenatively and inconclusively identified 14 years later. Tardive dysmentia and tardive dysphrenia (seperately) a decade after that. But the results were of course inconclusive (these were standard psychiatric researchers, this is apart from anti-psychiatry misinformation). As well there were no medications that didn't cause tardive dyskinesia. Then Clozaril was developed, and would be used more except for the adverse side effect profile, but is clearly quite helpful for some people (and statistically rare results aside, can't cause tardive dyskinesia). And tardive dyskinesia was hard to treat. But now with myself they are identifying new treatments (please remember I am literally the first person to be helped with Vimpat on dystonic spasms, if clinically noted it will take much further research).But when the NMDA receptor modulates are FDA approved (years from now as they are in Phase II FDA study) at least with antipsychotics, tardive dyskinesia may very well be a thing of the past. The knowledge of my glycine research is making the rounds. And likely the neuropsychiatric aspects of tardive dyskinesia may as well. So as I always say people can have the mental recovery I did without the neurological disabilities and the neurological disabilities be treated. And the more researchers that note that in the same way I "noted" my reaction to the hawk, the more mental health consumers are likely to benefit. We all look forward to beneficial results. For us all.