Jul 17, 2010
This week an event occurred that otherwise would have been a minor follow up. My teeth were in pain as was my mouth. The obvious answer would be to go to the dentist who is nearby to my apartment.. The problem being that the dysphagia has proven treatment refractory at this point and I can't speak coherently without choking. At first I was at a loss. But then I remembered that there was one given. If I didn't go to the dentist things would only worsen. And that I had previously given the dentist a list of needs and accommodations (which he had entered into my case file). As I didn't have the communication device yet (that will be an Iphone) I would just have to write on pen and paper and have the dentist note things down I could not communicate coherently. He was very respectful in accommodating my needs (he cleaned my teeth only with hand tools for example) and said the documentation I had given him was helpful for him to understand this. And it was worth it as a cavity was noted that needed further follow up. I did however explain to the dentist (in writing) that the reason I had not gone in a year and a half was due to the dysphagia and lack of accommodations. And that the reason that I might have accidentally scratched my teeth with the plaque scraper was because of the dystonic spasms affecting motions in my mouth, teeth and hands. The dentist treated me as a rational person with a physical disability which I appreciated. And I focused on what was needed but I did note I had a "neurological loss of cognition" (what they are defining as tardive dysmentia) and he wrote down a letter explaining the needed follow up which I will do when I have the Iphone. As much as I have discussed researchers, one must never forget the doctors one sees all the time that go out of their way to help you. They are just as important.
The follow up with my neurologist was requested by my psychiatrist and at the appointment I discussed some standard issues like accommodations (that I require for the advanced tardive dystonia, some are in application and some in appeal). I focused on some standard issues such as side effects of medications (taken later in the day the Vimpat causing psychosis, this I monitor for) and on the first day of the application the Catapres causing some mood disruptions and low blood pressure (it is monitored at a 4 day titration because it has become less effective over the years). The criteria of tardive dysphrenia (a more clinically conclusive aspect of tardive psychosis) and tardive dysmentia is being understood (within standard clinical study) in me. The aspects of what appear to be catatonia from what they state may or may not be and are in discussion as to cause and etiology. But it was agreed that the videotape of the extreme convulsive activity I experienced (that was catatonic like) in reaction to a standard stimuli (a bird song) that was mitigated by ginkgo (under research to treat tardive) that we had mailed a dvd to them would potentially be discussed. And with my psychiatrist I discussed standard psychiatric issues and how there was a potential differentiation between those and the neuropsychiatric aspects of tardive (which do disrupt functioning on their own but I can discuss and analyze them as separate that's why they appear to be neurological). It should be noted that in not causing tardive dyskinesia, glycine and the NMDA receptor modulates antipsychotics would not cause unknown aspects of tardive dyskinesia under clinical study either.
But my goal more and more is to focus on my own recovery. Thus as I have handed them the dvd I am "handing" them back those criteria for further understanding. Its now within the province of noted researchers. There was a family member whose life was saved by a researcher (decades ago). As a child they had some form of coronary dysfunction. They received an operation from a researcher in the field with what was then groundbreaking research. However, the chance for consumer to interact directly with researcher has not occurred before. But its time for me to continue with my recovery and as much as I trusted the dentist as regards my needs and accommodations, I trust the researchers to continue with the work they do to bring a further understanding of safer and more efficacious treatment modalities and their results will benefit countless others...