Hallo park.subscribers,
The mailings of the last week about "on" and "off" referred to two
different questions. I hope I understood that correctly. The first was: what
can trigger an "off" and what can be done to cope. The responses dealt with
this question.
Anyone who put this question has obviously no problem to distinguish "on"
from "off".In other mailings it was exactly this question of distinguishing
that was raised. This question seemed in the responses disapeared. In
my view things become more clear whenn that question is reformulated into:
"how do I know whether at a given moment I am to high or to low on medicine",
In the past it happened frequently that I could not answer this question.
And even now ,after 12 years of PD, it is not always clear. Maybe someone
recognises the problem and knows other ways to cope with it. And maybe for
someone who is on this moment confused by it gets some clearness.
The problem is, I am much troubled by hyperkinesia, [involuntary
movements]. From books about PD I learnt, this is caused by too much L-dopa.
In my case however it is not only triggered by the peak of effect of
medicine, but as well by the end of medicine. This has been confusing in the
past. The and of medicine is something else than no meds. I use at night
no meds. Whenn I wake up in the morning I am captured by bradykinesia.This
is not difficult to tolerate knowing it will disapear soon.To make it yet
more complicate, the period of time I have profit by a dose of meds is not
constant. Among the things that influence this length of time, the amount of
body exercise is the most obvious: If I don't move at all, it happens the
meds do nothing too. Making myself too tired has the same effect but to a
lesser extent. To decide to take my next dose I need next to the clock other
cues.
An important difference between the two states of hyperkinesia is that the
end of meds one is combined with high muscle tension end the other much less
so. This makes the former the most troubling one. During the former walking
is more impaired or impossible.
During the peak of dose the hyperkinesia can sometimes be diminished by
moving on purpose. Some years ago I felt at the peak of medicine more muscle
tension in my right side and at the end of medicine in my left side. Both
forms worsen when I try to make any subtle movement for example typing. In
reality things are not as plain as they seem to be so written down. In real
life things more mixed up.
I am considering now pallidotomy but have not yet decided, It is said this
operation is the best conquering hyperkinesia. What I ask myself and am
asking now to you does this hold for both hyperkinesias. Maybe someone can
say something about this difficult topic.
My meds are each day: sinemetCR 125 1 X 1
4 X half
permax 0.25 5 X half
orphenadrine 50 5 X
=dissipal
eldepryl 5 2 X
Period between meds intake 3 hours. No meds at night.
I have experimented in the past a lot with doses and times.
Ida Kamphuis
