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Memorial Day Approaching: In Thinking Back

May 28, 2010 - 2 comments

  It is one of these rare days when I temporarily regain my sense of memory and awareness so I was thinking back to family members or friends of the family that had served our country during any era. I can remember Memorial Day as a kid and there was a parade, band music playing (there was a band shell, still active as is the parade) but to me, at the time, it was history as regards what happened. It was not within my mind as a child (and perhaps not in others as well) that there would ever be a war again. I do know that life was easier then and simpler but it is always that way when you are a kid. I still visit that town I grew up in for much of my life and visit my mom who still lives there. It has commercialized somewhat since then but the people still stick together.
Once 9-11 occurred that sense of ease that things would always be well was shattered for everyone and although the feeling of fear comes and goes it is still there. And it shouldn't be. I did have the opportunity to speak at length afterwards to a friend of the family about his experience in the Tenth Mountain Division in World War II. He was able to explain to me what it was like to be on the front lines, what occurred during the war first hand and why some decisions were made. He had come from Italy fleeing anti-Semitic persecution and was able not just to defend our nation but to go back and be one of the people who (fighting with the U.S.) liberate the country where some of his family lived (and witness the impact, many of them had not survived). He spoke of the experience as an accomplishment and the rest of his life had been successful as well.
   However, for my stepfather it was not the same. He had served our nation in the Korean War in the Air Force and been wounded under fire and received a Purple Heart. He would show us this medal once in a while and I knew not to touch it and that it was important (as a very small child) but I could grasp the significance of what it was at the time although I did later. However, although he later had a successful career he was not a happy person. He always had great ideas and would sometimes speak of them a lot and get worked up. At other times he would talk to himself. I asked him about that once and he became quite upset but I was trying to explain that I was experiencing somewhat of the same thing (I was  diagnosed and started medication soon after). On the night before he died, he told my mother (she only told me this years later) that he heard voices and couldn't cope with them, somewhat like me. The next day he died of a heart attack but I know if he had lived he would have sought help and life would have improved for him. As he was never diagnosed, we don't know what he had exactly and we do believe that it started early in life. However when I did peer counseling for people with disabilities, I did see people who had defended our country and acquired PTSD and did not receive the treatment they needed or the services or honestly even the respect. That should be changed. As well everywhere veterans should receive the honor, respect and dignity they deserve on Memorial Day or any other day for that matter. And although many do, some families who have fallen apart do not take the time to speak to family members who are veterans and ask them about their experience which is often something people can learn from. It was never an easy time for people but sometimes it was the most meaningful time in their lives and one we should all be thankful for...

Tardive Dysphrenia, Tardive Psychosis, Tardive Dysmentia Recovery Approaches Society. Not Being Able to Speak is Not the Same as Not Wanting to Be Listened To

Apr 27, 2010 - 3 comments
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glycine

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NMDA Receptor Modulates

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Disability Acceptance

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Its important to remember that I have dealt with any of my disabilities, psychiatric and now neurological in a rational way seeking treatment so I could recovery and accommodations for what I needed and was unable to (in order to remain a part of the community). I have had positive results with the providers I have dealt with. Unfortunately society has not always been that accepting. In the past it was complicated, Before recovery I would act psychotic and of course it is hard for anyone (especially when that's extreme) to deal with that. The difficulty is now the limitations are physical and factual. But sometimes people can't see them that way. Being that I have marked dysphagia and can hardly speak I use a TTY instead of a phone. But unfortunately another friendship dead ended (note there were no disagreements or conflicts at any time) because of the TTY itself. The call ended "Maybe we can have an actual conversation when you are over your problems". Let's stop there. A TTY conversation is a real conversation. I've called many people who were deaf or hard of hearing. That's an accommodation that enables a person to communicate. Some people I know accepted the TTY right away. Some people took some time to get used to it. Others couldn't. But all the time I physically needed it. And I made sure to keep in touch with people at all times. .
   As for what else is going on, its clinically complex. There are neurological changes I have affecting thought processing, mood, cognition and many other aspects of how I process the world. But yet mentally I am rational. The reason I know (and this is being clinically understood in this manner) is that these changes only occur during convulsive activity. Anyone would know what a seizure was. So the best way to react to these changes is as one does to a seizure (being that its not controllable and its neurological). So for myself what I am looking at is an unknown level of mental recovery and some neurological deficits under clinical study. I can explain the accommodations I need and they would all be defined as "reasonable accommodations" (very specific concept within the ADA) but people have to be willing to listen. And yes before recovery there were people I alienated when I was psychotic. That's different. This isn't a "problem", its a physical disability and depending on physical recovery rates I may never "get over it". And as for people with clinically known neurological disabilities, strokes, TBI's, Parkinson's, multiple sclerosis, Alzheimer's, whatever disability happens to someone you know, they are still your friend. Don't abandon them. In fact this is the time they need you most. When the main issue was psychiatric people encouraged me to stay in treatment. They were right. Now they just need to support me with a recovery as yet hard to define but once known may very well benefit others (as researchers begin to understand it). I accept who I am. I work with providers to define my accommodations. And in order to remain a part of society other people need to stop and think of what they are doing. I am the same person. And I will always be their friend. A TTY is a form of assistive technology. Learn what it means. Because you may find someone else in the same situation and although they cannot speak like everyone else they need very much to be listened to.

Defining a Day: Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia Recovery Continues

Mar 13, 2010 - 4 comments
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  Today was a day where I could truly say in some semblance of the word I gained my sense of self back. Through working with others. I was going with my mother to an exhibit of Japanese art. We could see among the various (quite artistic and imaginative wood block art) portrayals of philosophy and proverbs and especially the Samurai (who were very real and in power then) the sense of inner conflict and channeling negative energy. That last part of course has not changed. After we left the museum we had a real world lesson in it. The car was gone. My mother had accidentally parked in a commercial parking spot and the car had been towed. We were stranded. There was this sense of dread as if it was the worst thing in the world which I had always felt when this happenned all my life. Now, after recovery I knew It wasn't. My mother was having an anxiety attack that was going to sprial into an agitated mixed state. She still had her own mental recovery to work on. But it was my place to work with her to help her to stay calm and locate the car which only she knew how to drive. Because of the tardive dysphrenia I was encountering attacks of neurological dissociation but because of the mental recovery I was rational. And could use this recovery to help. She called the nearest police station. I calmed her down and explained to her how to speak to them. The police were very helpful and cooperative and said that I was doing well (remember I can hardly speak due to dysphagia, my speech is sometimes incoherent and unfocused due to tardive dysmentia). We took a cab to the tow pound and we discussed what was the best thing to do from there. After a reasonable period of time they found the car. I had to sit with the owner of another car. I was very polite to the woman but in explaining what I had done today (and asking about her life but keeping a respectful emotional distance) I was treated as rational. I had a sense of inner freedom. What is defined on paper is one thing. Or on internet dialogue. What occurs in everyday interaction (especially in emergency situations) is proof. I had no sense of fear or phobia or paranoia or social discomfort. All that was gone. That much I knew. But when I entered the car my mother and I entered the car my keys had fallen out of my pocket accidentally. The forgetfullness of things that were always easy to understand was from the tardive dysmentia. But I could understand that and define it. And we are now working more closely as a family for my accomodations. And in general. My aunt said that a book I had suggested from the local library on diabetes for her was quite helpful. As with any disability its not only how its affects you but what you do from there to help yourself. And work with your treatment providers as well.
   But the last part of course remains up to the researchers (and that one consult is a few weeks away) is to understand specifics in me of the three neuropsychiatric aspects of tardive. I kept track of that the whole day. The collages with the various movements of the Samurai set off echopraxia (automatically copying motions, an aspect of catatonia), the fall and winter landscapes dissociation (such as the one I posted). And there was a disjointed mania and psychosis that only occured during spasmic activity and was specific to it. And (of course before recovery I experienced mania and psychosis) dissociation, catatonia and dysmentia were never symptoms I had experienced. But the more important thing is the Vimpat is treating them. In one reoccuring dissociative dream, I am playing football. I am running towards the goal and then suddenly I wake up. That's a very normal dream. Wish fullfillment. Physically due to the neurological disability (that I always had that worsened into tardive) they are trying to understand further that caused gait tracking, dystonia and akathesia I was placed in adaptive phys. ed. so aside from earlier games that were basically tossing a ball back and forth and now due to the advanced tardive dystonia I will never play football. But what is the underlying meaning? I am trying to bypass some of the extreme negativity of the anti-psychiatry folks and "hand back" the 3 neuropsychiatric aspects of tardive (which I am under standard clinical study for) back to the medical model. But what happens after the dream? I wake up and am jolted out of bed due to myoclonic spasms and have a tic "hike!". That tic occurs throughout the day as well. Perhaps the dream itself is grandiose and somewhat obsessive and tardive tourretism is a known criteria. But the 3 together are part of the defining criteria for tardive dysphrenia. But what else does it show. I am a "team player". I work with the system to define my recovery. I work with my family to help each other. I worked to take what was a very realistically frightening day and turned it into an interesting experience (we had Indian food afterwards, my mother had also been upset because it would have been the birthday of her fiancee who died 6 years ago but ended the day on a positive note). I have met with some close friends as well on other days. Its time to get back into the world with accomodations, supports and services and continue to work to help others and help define my recovery. So as I've said the less you look for adversaries the less you are likely to find them. And working with others and networking is one of the essential steps of recovery.

Starting Manganese for Tardive Dyskinesia, Tardive Psychosis, Tardive Dysphrenia, Tardive Dysmentia

Dec 28, 2009 - 4 comments
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  Please note that before I even considered taking manganese as a supplement for tardive dyskinesia I asked my psychopharmocologist who then did some research on his own. He did find that it remained under current clinical study (the original study it was part of as well as the field of orthomolecular psychiatry has shown not be of much use, I know because it was suggested to me by a doctor in this field decades ago before my current recovery, I continue to take a full regimen of b vitamins and vitamin c, they may have been helpful supplements healthwise but they cannot treat schizophrenia nor any other psychiatric disability, it is however within clinical potential that since taking vitamin c I have less colds each year, no supplement of any kind or vitamin or mineral in a higher dose than reccomended by the FDA should ever be taken without a clinically approved provider's supervision and permission). It should be noted there are many scams and fraud online as well as offline, natural remedies are not regulated as they should be, however they have been researched and developed into medications from asprin to Lovaza (from fish oil) which is an anti-cholesterol medication but also an experimental mood stabilizer to Rozererm (from melatonin) which is of course a sleep aide. I was warned about maganese toxicity and although the dose I take is higher than normal it is well within the W.H.O. standards which in medicine are the standards for safety.
   The question is why dose the manganese work? That one is not hard to answer because just like many standard anti-Parkinson's medications that treat tardive it raises dopamine. That may be why manganese toxicity (so far found in industrial accidents but higher than W.H.O. approved doses could risk that possibility) have Parkinson like symptoms. The dose I take is well within the W.H.O. approved dose so that is not an issue. The manganese did work and on the neuropsychiatric aspects of tardive as well. There had been flare ups of tardive dysphrenia on Christmas that included thoughts that life was not worth it while walking by a graveyard. I knew enough to take the Vimpat which stopped that but adjunct treatments were needed as well. As for side effects, there was some nervousness and visual hallucinations. Those are exactly the same side effects I got from Mirapex which is a standard anti-Parkinson's medication used for tardive dyskinesia. What treats tardive dyskinesia (and the experimental criteria I am under standard clinical study for tardive psychosis, tardive dysphrenia and tardive dysmentia) can if it boosts dopamine potentially cause psychosis. So I remain on guard for that. If I start to experience that it will be discontinued and any calls will go to my psychopharmocologist (and of course I will not be posting, when psychotic its essential to use care online). What I am seeking to replace the Flexaril (which I have built up a marked tolerance to) and the Clonidine (which I have built up somewhat of a tolerance to) are of course more FDA approved medications to augment the Vimpat. What I am hoping for is the researcher of the criteria tardive dysphrenia (whom I had corresponded with) who is the director of a well know research university (which of course I won't name for confidentiality purposes) for a standard consult. Although of course I was advocating for these criteria to be identified, treated and prevented I also need to follow up with the people who are understanding them. That may or may not occur but a researcher such as that would know of the full range of treatment. And like everyone, I follow my provider's instructions and as well continue to avail myself of oppurtunities to continue to recover and with that and accomodations so I can physically improve and also enter the outside world more. I saw a small museum with my mother today and also am networking with the person I met with M.S. on the Access A Ride van and hope to continue to generate positive results.