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From: Brian Collins <[log in to unmask]> Subject: 2-phase dyskinesia and Brian's chart C To: Multiple recipients of list PARKINSN <[log in to unmask]> Hello folks This email started off as a short answer to some of Ida's comments in her email of 30 Jan., but as I dealt with each point, I began to wonder if there may be a greater area of misunderstanding in the way we take levodopa than I first thought. I really need to hear from you on this subject, so please write. On Thu 30 Jan, Ida Kamphuis wrote: > Brian, David and all, > Ida========================== > First I'll try once again to disentangle the misunderstanding about two- > phase dyskinesia. To say it quite plain: If one has serious two-phase > dyskinesia it is not always sure whether the movements at a certain moment > are the result of top or of dip of meds. If so, one can't discriminate > between +2 en -2 or between +1 or -1 on Brian's chart. Only to discriminate > 2 from 1 from 0 is always possible. This is the distance between reality > and wish. Brian========================== Hello, Ida. I am sorry that it has taken me so long to reply to you. I have had a busy few days. The first thing is, that I am sorry to say that your paragraph above left me confused about what you were saying. Are you saying that you are unable to distiguish between Dyskinesia and Tremor, or that the movements associated with 2-phase dyskinesia are different compared to both ordinary Dyskinesia and Tremor. I have encountered a small group of PWP who have different characteristics: In the Off condition they have stiffness and rigidity,which gets better as the dosage is increased. As the dosage is raised higher, instead of the dyskinesia which I would expect, they just go back to a stiff, rigid condition again, but this time with a lot of levodopa floating around. I have encountered 4 such people, and their story is so consistent that I have to accept it. This group pose a mjor problem for my program, because if they were sitting at condition=0, and they started to get stiffness, this could be caused either by too much or too little levodopa;- who can tell? Are you by by any chance one of this group? Ida============================== > Brian's charts, if I now understand it well, can only be used if this > discrimination can be made, which is for most PWP's no problem at all. > In the past this discrimination has given me much puzzling and trouble. Now > it is easier, partly by learning and partly because during the years the > off dyskinesia has grown more than the on dyskynesia and the difference > between them is more outspoken too. Brian============================= Aha - it may be a language problem that we have after all: The text book definition of Dyskinesia is 'Random, uncommanded , spasmodic movements. There is no such thing as off dyskinesia: the movements associated with the off condition (which means insufficient levodopa) are the classic Parkinson Tremor - the key difference being that the off tremor is rhythmic and usually of fairly small amplitude, while the On Dyskinesias are typically quite large movements. I don't want to confuse you with these 'random movements': They are random in the sense that you cannot be sure what is coming next, but for a particular person, it may be one of five or six movements, not literally anything. Now that that is (I hope) sorted out, could you please have another go at explaining 2-phase dyskinesia to me ? Ida================================= > So I can try to start with Brian's chart anyway and will do so within a few > days. > > I read this morning that about 10% of PD'suffer from two-phase dyskinesia > So it is important enough to give it some further attention. I once wrote > about it but can add something. This may be of special interest to some 150 > readers of this list. Some of them may be just as confused about this as I > was. That's why I will describe the symptoms in detail. > The end of med's dyskinesia is accompanied by high tensed muscles. The > movement is more in the legs than in the trunk. The tension in the muscles > is higher on the most afflicted side. The going together of forced movement > with tensed muscles is the most tormenting aspect of PD. > In the top of med's phase the movements are more in the trunk and shoul- > dres. The muscle tonus is lower and if this tension is still high it is on > the least afflicted side. Brian================================ Wait - You have lost me again. What are top of meds dyskinesias? In my book it simply means that you have taken too much sinemet. Do you always get them? The more I dig into this topic, the more puzzled I get! I can almost believe that most of you out there are running in what I called the Overdrive Region in chartC. If this is true, then you literally don't know what you are missing. If you take a bigger dose of Sinemet when you wake up than you normally take during the day (say about a Sinemet100/25 extra). If you use phrases like 'waiting for the meds to kick in', and 'coming down in the evening', then you are possibly operating in - The Twilight Zone. (Cue weird music ) Ida================================== > Unfortunately this is schematic representation of a more messed-up reality. > But for me it seems the best scheme to rely on. > The ends of med. dysk. stops when the new l-dopa arrives or else after some > time (about one and a half hour). The dysk. normally gives way to an on > phase. The only part of the day it has to stop without help is in the > evening. > I don't use any med's in the night and have to wait till my "cold turkey" > is over. > The mechanism behind the end of med's dysk. has yet to be found. A simple > overcompensation can't be it. The dysk. becomes worse when the disease is > more advanced and more of the dopamine producing cells disappeared. > Some other system seems to be activated. > > Ida Kamphuuis > Holland. > > -- Brian Collins <[log in to unmask]>