Brian Collins wrote:
>Hello Ron. I am aware that some of you might think I have shares in Sinemet,
>the way that I keep plugging it, but I prefer to think of it as just being
>realistic. You ,Ron are doubly unfortunate, as not only do you have PD, but
>you have a bad reaction to the major drug in the treatment box.
> Now I fully accept that in the early stages, you and your neurologist have
>a large array of toys to play with,and there are numerous combinations of these
>peripheral drugs which can satisfy your requirements.
> The point that I feel you need to keep in mind is that you are at the start
>of a journey - one that will last for the rest of your life, and it is so easy
>to look down and worry about where your feet are treading right now, when you
>should be looking to the horizon, and planning your route. If you take this
>long term view, one drug stands out as the Only one to stay the course, and
>that of course is Sinemet/Madopar. Nobody is daft enough (That is somewhere
>between silly and crazy, Joao Paulo) to suggest that you should take let's
>say 7 mg of Permax plus of course your daily fix of Eldepryl, because everyone
>knows that the Permax would probably kill you, yet everone expects Sinemet to
>do the job. The message is : Sooner or later you must come to terms with
>Sinemet. I firmly believe that anyone can learn to tolerate Sinemet, either by
>gradually increasing the dose from zero, or, as Bob & Joy Graham pointed out
>recently, as a last resort, the anti- emetic drug domperidome ( or Motillium)
>will easily control the tendency to vomit. Also, just to pre-empt those who
>think early use of Sinemet affects its usefulness later on, wake up- you are
>in a a dwindling minority: It is not so.
Brian:
I believe that I am slowly coming to grips with my situation. If I find
myself in a situation where sinemet is the only logical course, I shall of
course take Sinemet. My current neuro encouraged me to avoid Sinemet (he
told me that the decision is mine, but I should be aware of the
controversy). He stands on one side of the controversy and you stand on
other. To me it does not matter who is "right" or "wrong" or what piece of
the puzzle is missing. I know that there is a POSSIBILITY that Sinemet has
long term, cummulative side-effects. Hence, why not avoid it as long as
possible. I am a fully functional, reasonably comfortable person without
it. When the (increasingly less) inevitable time comes to start using - so
be it. I shall avail myself of the accumulated experience on the listserver
and also make sure I have a neuro who knows how to handle the stuff. As one
man put it: "I may be ignorant, but I'm not stupid."
Now, let me get on my soapbox for a moment. My father was a doctor (a
psychiatrist from eastern Europe where MDs were revered). I loved and
respected him dearly, but have to confess that he (and his doctor friends)
were extremely narrow minded. I have learned to be somewhat wary of the
medical establishment's view of the world. I am especially distrustful of
pharaceutical firms who are in it for the money. They are responsible for
many unbelievable advancements in the recent past - but their motives must
always be questioned. If the world gradually came to realize that cancer,
PD and hypertension could be cured by Peanut butter, the phamaceutical firms
would do all in their power to quash this fact and, failing that, would
lobby congress to restrict its accessibility to the general public. Also,
motives aside, the recent exponential growth in medical knowledge by the
medical community does not mean that they know everything. It only means
that the still huge gap in their understanding of the human body is slowly
being nibbled away.
For these reasons, when a medical specialist tells me that Pycnogenol,
Melatonin, Peanut Butter or Acetyl-L-Carnitine is useless, I ask myself -
"What do they know?" They know about the standard treatments taught to them
in medical schools. Most rarely know anything alternative medicine and are
usually too proud to admit their ignorance. Also, the fear of malpractice
suits in our litigous(sp?) society make it inappropriate for a physician to
stray far from the party line. Hence, they simply dismiss Pycnogenol,
lipoic acid etc as "snake oil." One reason I like my current Neuro is that
he believes that there may be treatments beyond what the pharmaceutical
industry touts. He has his own pet theories. At least I know he shares my
hopes, he is open minded and has an imagination.
Sometimes, I wish that the AMA would endorse a waiver that patients could
sign saying that they would never sue over anything the doctor tells them
"off-the-record."
Ron
