 |
 |
Brian, Ever hear the one about the guy who was brilliant, but had no common sense? I wish medicating oneself for PD was as black and white as you describe. Anyone with PD knows that fluctuation of symptoms is the norm. There is no possible way to accurately predict the amount of levadopa reaching your brain from one hour to the next. There are too many variables ranging from protein intake, amount of food taken with medication, sleep etc. that ultimately determine your physical condition. Even stress will effect symptoms. Until a human being can be regulated like a precise machine I think the whole concept is a crap shoot. Greg 47/35/35 > ** Original Subject: RE: Pergolide without Levodopa > ** Original Sender: Brian Collins <[log in to unmask]> > ** Original Date: Sat, 25 Mar 2000 14:42:48 -0500 > ** Original Message follows... > > t is good to see the debate on the merits or de-merits of Levodopa opening > up. It is fortunate (and I don't mean this in any derogatory way ) that we > have at least 2 MDs on the list. (and doubly fortunate that they happen to > take opposite sides in the debate. This enhances the impact of the arguments > in a way that numerous e-mails from little old me have failed to achieve in > the past 12 months or so. > > Of course I agree 100% with Jorge A Romero's arguments, and so naturally I > disagree strongly with Hans van der Genugten. I also believe that I can > define a viewpoint on the whole affair which could find acceptance with > both parties. > > The first thing that I bring to the discussion is that I have arrived at my > conclusions NOT by reviewing the reports from both sides and awarding > points for technical merit (I am not trained to do that). What I am trained > to do is think logically, to form hypotheses, to test the hypotheses > against the available data and after numerous attempts perhaps arrive at an > undestanding which allows us speculate a bit further forward in some new > direction. > > ) It seems to me that both groups are missing a vital point in the way that > they use the data, and especially the hated Dyskinesias. They seem to > regard Dyskinesias as rather like icebergs floating around in an ocean, > just waiting to sink us as we try to navigate through the day, but on a > random basis. This is nonsense. > > A far more meaningful relationship can be defined, which I used in my > analysis program about 6 years ago. This requires the patient to define > his 'Condition' as a continuous function through the day. This condition > is expressed as an arbitrary number, ranging from -2 to +2 , and is > calibrated (at the crudest level) as follows: > > -2 - Fully 'off', resting tremor, falling, freezing etc (Chose the > most appropriate as it refers to your condition > > -1 - Similar symptoms as -2 but at a level that you could live with. > > 0 - The target! Zero is how you used to feel before you were > diagnosed. Remember that ? > > +1 - Mildly overdosed e.g. light dyskinesia, possibly cramps, > difficulty walking, etc > > +2 - Unacceptable dyskinesias, rigid legs .. > > > The point of that table is not to define a series of steps, but to define > points on a continuously varying scale. I found that with practice, I > could define my condition as ,say -0.6 , or +1.2 (And to give a good > analysis it is desirable to resort to 1 decimal place accuracy ). > > Now, if you can accept the concept of the condition scale (I do, because > I've done it) you are now talking computer language. The next question > is: What do you plot it against? Answer: The levodopa flow rate expressed > as milligrams of levodopa per hour. > > If you are still with me you will see that I have defined or assumed a > relationship between the tablets e.g. as we take them by mouth, and > condition, which is how that tablet affected me. What goes on between > those two points? Well, that is why I wrote a program (And it works) > > The point of the above (and I apologise for the length of it) is to > introduce you to the concept that there is a specific rate of intake of > levodopa which, if you can hit it with accuracy and maintain it with > accuracy will result in you feeling just like BP (before Parkinsons). > > DYSKINESIAS: > ARE NATURE'S WAY OF TELLING YOU THAT YOU HAVE TAKEN TOO MUCH LEVODOPA > > I am writing too much (sorry) I will try to summarise the rest of my > argument in a sequence of Banner headlines: > > MOTOR FLUCTUATIONS: > OCCUR BECAUSE THE 'WINDOW' AT WHICH YOU ARE AIMING YOUR LEVODOPA DOSE > GETS SMALLER BECAUSE YOU CONTINUE TO LOSE DOPAMINERGIC CELLS. IF YOU > CONTINUE TO THROW LARGE ROCKS INSTEAD OF SMALL PEBBLES OF LEVODOPA YOU > WILL GET UNPREDICTABLE MOTOR FLUCTUATIONS. > > > And finally, to demolish the fuzziest piece of logic I have seen in many > a year, which says: If you delay the introduction of levodopa for several > years, you MAY find that the levodopa retains its effectiveness longer > in the later stages. (Note the use of MAY find:. They are already padding > their backsides in case they are wrong) > > Here we go for the last time: > > THE CONVERGENCE OF THE DYSKINESIA LINE AND THE DEMAND LINE IS A FACT, AND > THERE COMES A TIME WHEN YOU CANNOT TAKE ANY MORE LEVODOPA. HOWEVER, THIS > ALSO IS DUE TO THE ON-GOING LOSS OF DOPAMINERGIC CELLS AND HAS NOTHING TO > DO WITH HOW MUCH LEVODOPA YOU TAKE > > > -- > Brian Collins <[log in to unmask]> (59/39/34) >** --------- End Original Message ----------- ** >