Hello Brian,
I was hoping to hear from you.
I was so tired last night when I was trying to write that I could
hardly think, so to answer some of your questions....
My friend is 57, and was diagnosed in 1991, so he hasn't been dealing
with PD nearly as long as you.
He was diagnosed by a movement disorder specialist whom we all loved.
Every thing was fine until our specialist moved to Vancouver in the fall
of 1996.
At that time another neurologist, (not a PD specialist) took over the
drug study and the patients involved. This neurologist, though a very
nice man, seemed to start the ball rolling as to increasing Sinemet
dosages. My friend was still working at this point and I think he
'pushed' the neuro for more Sinemet in order to him to keep working. So
at this point he was taking Mirapex (I don't know how much) and the
levodopa climbed so high. He got so bad (I don't know if he was going
"off" or dyskinetic or both) but he had to be driven home on several
occasions and finally HAD to go on disability.
This spring a new movement disorder specialist arrived on the scene. I
thought he would surely think that my friend was in trouble, but during
the first visit he told my friend "If all my patients were doing as well
as you after 10 years, I would be happy." I have to tell you, when I
heard this, alarm bells started ringing.
> 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...<
You didn't lose me. This is my philosophy, too. I suggested to my friend
that he go back to regular Sinemet to get a handle on how much levodopa
his system really needed, but while under the care of the second doctor,
he was told not to use regular Sinemet because it was too hard on the
system.
> 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 neuro who saw my friend in the hospital yesterday morning said they
are having all kinds of problems with patients who had to come off
Tasmar, but he didn't elaborate. I should mention that the movement
disorder specialist is away and my friend was admitted under the neuro
"on call" and as a result may be seen by a different neuro every day
until the specialist returns.
I'm going to the hospital now, so there may be more news later. Thanks
for replying...I'm looking forward to Part 2.
Janet - I've read your letter, also. Thank you, and hopefully some of
your questions have been answered here.
Judith
--
Judith Richards, London, Ontario, Canada
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^^^
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