 |
 |
At 18:05 11-8-99 +0100, you wrote: While there are neurologists who have their own opinions, there appears to be such a lack of unanimity that we may even be able to make a contribution. I think that you must accept that, within certain limits at least, closing >ones eyes does stop dyskinesias. Judith Richards got a positive response, >I got a positive response although I limited my experience to mild to medium >dyskinesias because I have no results with heavy dyskinesias, when I have to account for the excess dopamine >which (I think) seeps into the basal ganglia, into places where it was not >expected, and maybe fragmenting the signal, thus producing the Parkinson >symptoms. Brian, I am intrested in working together with everyone who can help me to understand as far as it is possible to understand what is dyskinesia and espescially what is wearing off dyskinesia, because that is the only one I still have. What I learned from my experiences around my pallidotomy is just how uncommon my symptoms are. I told once that on my first visit to the hospital I had to wait longer than I had expected and had a full-blown wearing off dyskinesia that made any regular neurology examination totally impossible. The neuro asked my consent for making a video of the spectacle. My pallidotomy was done as part of a research project and so I have been hospitalised not only for the surgery but also for evaluation before and after. Being in the hospital I was sort of a tourist attraction for neuro's who had seen the video and also the nurses said they had never seen something like that before. After my pallidotomy I could diminish my sinemet to the point that I never had "top of meds" dyskinesie anymore and I am still convinced that is something quite different than wearing off dyskinesie. It feels differnt and the movements are different. Someone might remember I wrote about it, that it was my impression that the wearing off is a sort of "cold turkey". When I now search through the litterature I find, as I did not a few years ago, a few experiments about the difference between the two dyskinesias. For a person who never searched through litterature it might now seem simple to find something, but the difficult thing is that that litterature is written for people who already have much knowledge about neurophysiology which I don't have. Brian, you say neuro's lack unanimity. That is only partly true. All the unanimity they have is not written about, but is supposed to be known by the readers of their research stories, which are about things they don't have unanimity about. For example, when someone says dyskinesia diminishes by closing your eyes, I immediately think, because I studied psychology: that can be true but if it is true, what does it mean? I know that by closing your eyes the whole nervous system comes in a different state of arousal and activation (which are two different things) and that may influence dykinesia. So you can't conclude from the fact of influence allone that it is the influencce of a part of the visual system that does it. My conclusion is that, if we want to proceed with this project, we need a basic understanding of neurophysiology. I'll welcome any recommandation on how to acquire this knowledge. Ida Kamphuis -------------------------------------------------------------- Vriendelijke Groeten / Kind regards, Ida Kamphuis mailto: [log in to unmask]