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Hello  Judith, I sat down at the computer today, having resolved to
write a 'Thank you' note to you, for the superb job which you have been
doing, passing on the important press releases and news items which I
would otherwise miss due to pressure of other committments. However,
having read your horror story today, I hope I might be able to make a
more important contribution. I will also copy this to the list members
in the hope that some others may find it useful.

PART ONE - GENERAL

I presume that the history which you described in your e-mail is the
combined effect of several neurologists coming along with their varying
views, fashions and predudices. ( If not, and one person is responsible
for all that, somebody had better shoot the poor fellow and put him out
of his misery !!).
   The one thing which you have not given us, Judith, is your friend's
number of years since diagnosis. I am assuming that it is quite lengthy,
like my own case, and I will probably be assuming that my experience
will be relevant.
  In my dealings with many PWPs I have reached the conclusion that the
average person's requirement for levodopa is about 1000 mg per day.
More than that, and you end up talking about dyskinesias at least some
of the time. There are those who really are more sensitive and who
require more or less than the 1000mg amount, but they are quite rare.
  Let's dispel a few myths about Dopamine agonists. The fashionable rush
to climb aboard the bandwagon for the latest and greatest agonist (
particularly if it has a suggestive name like 'Mirapex'), is largely
a waste of time (Provocative stuff, but I think the list needs a wake-up
call, judging by recent contributions! ). What I mean by that bold
statement is that most of these newer agonists do a pretty good job of
replacing dopamine without eating into the margin between the normal
operating line and the dyskinesia line.
   I may have lost you on that last point. Look at it this way: If you
start from zero levodopa, and gradually increase the dosage in terms
of mg/day, you eventually reach a point where dyskinesias set in. At
this point you must back off a little, and start adding an agonist,
because they have the merit of relieving the symptoms of PD without
provoking dyskinesias. You increase the dosage of agonist until
hopefuly you reach a point where you are shake-free and dyskinesia-free.
Any of the newer agonists will do this job, in my view: Where they
differ is that the agonists are capable of producing side effects that
make levodopa look like candy. The problem is that you cannot tell in
advance which PWP will react to which agonist. You just have to swap
around until you find one which agrees with you and then STAY WITH IT !
I am still on Permax, for instance, having just moved up to 4.5 mg per
day. I started this regime on the same levodopa dose, 1000 mg/day and
0.25 mg of Permax. I have gradually been forced to increase the Permax
to enable me to carry on normally, but generally I expect to get by
with no more than 1 hour of off time per day. (Usually due to food).
( I started this process 6 years ago. Casual aquaintances when they
see me comment that I haven't changed and that I must have things well
under control, but we know better. My problem is that above 5 mg/day
of Permax is not normally recommended, but so far, so good. (You know
the old joke about the man who fell off the sky-scraper building: as
he passed the second floor, he was heard to say 'so far, I seem to be
coping quite well'.
I will follow this with a part 2, to avoid an over-large e-mail.

Regards,

-
Brian Collins  <[log in to unmask]>