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

Mar 13, 2010 - 4 comments
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Tardive Dysphrenia

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Tardive Psychosis

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Tardive Dysmentia

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Tardive Tourretism

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Tardive Dystonia

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Tardive Myoclonus

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tardive dyskinesia

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Schizoaffective disorder

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Recovery

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treatment

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Consumer Advocacy

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glycine

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NMDA Receptor Modulates

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Vimpat



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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.

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by seashell888, Mar 15, 2010
Thank you for your feedback.  Your strength and intellect can get you through anything.  Has your DR mentioned the new improved shock treatment for dystonia?  Your attitude ROCKS!!!!!  Inspiration to my family :)  

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by ILADVOCATE, Mar 15, 2010
Thanks. I would believe you mean trans cranial magnetic stimulation. That is in clinical study for its use on tardive dyskinesia even though of course it has been FDA approved for use on treatment refractory depression in the same manner ECT is used and has a safer side effect profile as well. Once (assuming) trans cranial magnetic stimulation is FDA approved for tardive dyskinesia (they would of course have to determine exactly how it would be used in the studies) then I have discussed that with my neurologist who is a movement disorders specialist and we both agree it sounds promising and I would certainly consider it at that time as the tardive dystonia I have is now treatment refractory. I am however as of now completing the forms for a consult with a movement disorders specialist who is an expert in the field both to document my recovery with Vimpat and also to see if other adjunct treatments might work as well to replace or augment some of the treatments I use now that I have built up a tolerance to or no longer work as well as they did at first.

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by zsadia, Apr 25, 2010
remarkable article. When I sister came rushing to visit from me from FL after she heard of my suicide attempt and for the first time about my condition through a long email by my ex to my family, here's how she simply put it, "remember, the brain is the most powerful organ int he human body and if you let it tell you there's something wrong with you, you will start believe it". So always make sure you are in charge of your brain and can act rationally at all times. my co-worker told me, "well now you know tehre's a problem, so you can fix it". My mom said, "we're all a little bipolar at times, it's only human with all the emotions we face every day".

Physical disabilities can cause extreme negativity inside because of the feeling of loss of physical activity that one could do once. The important thing to remember is that you have supportive family around you taht need you and vice versa. Plus look around you and there's always worse off people. I now try to watch foreign dramas which are mostly based on true events and as depressive as they might be, it brings back the message that I actually have it pretty good here. Despite all that, i still have my horrible down days but I make sure to make regular appts with my PDoc and try whatever in whichever amount works for me. Bravo on your calm demeanor that particular day and making the best out of a difficult situation.

P.S. tasty indian food and a good indian movie always cheers me up too.......but then again I am from that region ;0)

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by ILADVOCATE, Apr 25, 2010
Thanks. Mentally as regards the psychosis from the schizoaffective disorder I have experienced a "relative recovery" but as regards mood swings my "affect is labile" (those are quotes from my psychiatrist and neurologist) meaning that I of course experience mood swings like many people here. They have noted a seperate series of changes in affect, thought process and cognition that are neurological in origin and that's what they are researching. The Vimpat (in myself at least, this is just one person, its only standard use is as an anti-convulsant) treats dystonic spasms, they have noted it "has mood stabilization properties" and also it appears to treat the neuropsychiatric aspects of tardive dyskinesia. It has been quite helpful for me because the Catapres application which treats both dystonic spasms and is used as a mood stabilizer (these are standard usages) has become less effective over time in myself. This is one reason, aside from a short exercise walk a day and occasional visits I am physically homebound. Thankfully my family is working with me to obtain the supports and services I require to be able to go places, especially for my safety as well as enjoyment and we are appealing some of the denials right now so I can return to the community and be a part of it as should be with all people with disabilities.

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