Dear Ida,

I've written and posted previously that I have experienced two-phasic
dyskinesia (meaning 2 different forms) in a total of three phases.  The
first phase I would describe as anticipated dyskinesia.  By that I mean
movement is caused through anticipation of the ability to move.  The true
second phase is experienced at peak dosage and usually is a form of chorea
or apoptosis with some posturing of the left arm behind my back.  The third
and final phase is very similar to the first phase only it is spurred on by
the fear of loss of movement.  Therefore, I believe there is only one true
phase of dyskinesia.  That may be an over simplification, but it is what I
feel.
I would also like to express my beliefs on people with Parkinson's and
medications.  I am convinced that the drugs react so differently in each
person that taking advice from another Parkinson's patient is tantamount to
lunacy.  Most of us progress at different rates and not only does our
physiological makeup vary greatly, but our diets and lifestyles are vastly
independent from those of others.  It takes extraordinary patience and
extreme dedication to effect any variation resulting in true uniformity.
That is not to say that this cannot be accomplished.  However, anyone whom
believes there scheduled regimen should work for others because they are
successful with it, is wishful thinking.  I mean that in a good way.
Obviously people have good intentions and want others to experience the
benefits they have.  I'm going to take a little of Janet's advice, and I
believe she's right.  I'm not going to blame myself.  I have tried for the
last six years every possible drug combination combined with every possible
schedule with every possible diet with every possible emotion.  Happy, sad,
stress to the limit, zero stress and the just about every other emotion on
the spectrum of human behavior.

Yes, I will push push push.  But it will have to wait till tomorrow.  I'm
going to bed now.
Good night and God bless,
Greg Leeman 37/7
-----Original Message-----
From: Ida & Andre Kamphuis <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Thursday, April 02, 1998 4:31 PM
Subject: Theories about two-phasic dyskinesia


>To Ron and other members of the two-phase dysk. gang:
>
>Ron Vetter wrote and quoted:
>
>>From: Alastair Wyse <[log in to unmask]>
>snip...
>> The first thing I read on PD after I was diagnosed was Dr.Harvey
>>Sagar's book " Parkinson's Disease " in which he explains dyskinesia
>>as occuring at max dopamine or peak dose i.e. too much dopamine but very
interestingly he says this occurs 1/2 hour after taking L-dopa.
>I don't believe in peak dose dyskinesia except where the first and
>>second phase have run together . I sometimes get this effect when I
>>do not take enough L-dopa . Too much L-dopa does not produce
>>dyskinesia but slight dizzyness .
>snip...
>
>
>Ron,
>You add a new theory to the existing ones about two-phase dyskinesia.
Alastair seems to say it is the only kind of dyskinesia that realy exists
and that the top of med's dyskinesia is in fact a two-phase dyskinesia in
disguise. The other two theories that have been discussed are the one of Bob
Martone, who said that in two phase dyskinesia the dysk. is provoked by a
certain level of dopamine, which one can't avoid passing through on the way
to the therapeutical level and again coming down from this, because staying
in the high therapeutic level is impossible. And my first theory, which was
that the end of dose dyskinesia was an abstinence symptom and the same thing
as a cold turkey of a heroine addict. This is founded only on my own
observation that my wearing of symptoms resembled so much the abstinence
symptoms of alcoholics and heroine addicts. This was especially so in the
first years of using sinemet, after that very heavy dyskinesia replaced
those earlier symptoms. I don't have enough expertise to assess, how much
the fact that all addictiveness has close relation with dopamine, supports
my view. A very weak point of my theorie is it has nothing to say about the
"start of med's" dyskinesia.
>Te theories of Alastair and Martone are closely linked, but a difference is
that Alastair says there is only one kind of dyskinesia and it is always
triggered by a higher than zero, but yet a too low dopa level. He says in
fact that too high doses don't exist and the theorie predicts that every
dyskinesia can be avoided by taking some extra sinemet. Bob Martone and also
my theory say that it is important to distinguish top of med's dysk from
start of dosis or end of dosis dysk. Top of med's dysk can never subside by
taking some more sinemet, while the short term effect of taking some more
while in the start or end phase can be expected to be getting rid of the
dysk. I have found (in the litterature about two-phasic dysk.) that sinemet
CR is contra-indicated for PWP's suffering from it. That supports the
Alastair or Martone theory.
>The supposed differences among patients in their reactions to dopamine is
greater in the theory of Martone and me than in that of Allastair. That
makes the last theory attractive, because more simple.
>I have experienced after my pallidotomy how much I can ameliorate the
effect of a dosis, when I first don't use no sinemet at all. I now start
using Sinemet 4 hours after getting up and that makes the effect better and
more predictable. After a short "drug holiday" of one day I can profit from
sinemet without any dyskinesia. I don't think this fact supports especially
one of the theories. But it supports in general the notion that the whole
matter is complex and the effect of one dosis is determined also by other
variables.
>I will end with a remark about the astonishment which I felt reading that
some PWP's take a sinemet to sleep. It sounds for me as absurd as taking
amphetamine to sleep. To be able to sleep I need absolutely first kick off
from sinemet.
>
>Ida Kamphuis, Holland
>
>
>--------------------------------------------------------------
>Vriendelijke Groeten / Kind regards,
>
>Ida Kamphuis mailto: [log in to unmask]
>