BRIAN, you wrote (in this neverending story):
Aha - it may be a language problem that we have after all: The text
bookdefinition of Dyskinesia is 'Random, uncommanded , spasmodic
movements.
THERE IS NO SUCH THING AS OFF DYSKINESIA the movements associated
with theoff condition (which means insufficient levodopa) are the
classic Parkinson Tremor - the key difference being that the off
tremor is rhythmic and usually of fairly small amplitude, while the
On Dyskinesias are typically quite large movements.
Dear Brian and David,
I started writing this some hours ago. In between I read the new post and
the article which was send by David. That is exactly the same thing,
what I am writing about. It is not too redundant to send this mail anyhow.
It might function as an illustration of that article.
The sentence from your text, Brian, which I wrote in capitals, is the
core of the confusion, the hart of the matter. THERE IS OFF DYSKINESIA.
I'll describe my first two med's cycles during the day. I don't use any
med. at night. In the morning after waking up I have classical PD symptoms.
Tremor and walking with very small steps and freezing sometimes. I take my
first med's and have to wait for about one and a half hour before they free
my movements. Those one and a half hour are not realy difficult to go
through. I read the paper or a book, drink coffee etc. However if I try to
be more aktive too early, which is after the influence of the med's has
started but is yet too weak, I get symptoms which fit into the concept of
dyskinesia. But mostly they stop when I am going to sit again. I can do
things like taking a bath, but have to do it slowly. Just before the med's
will give me a good time, the first unavoidable dyskinesia shows up. It can
be quite strong, but is of short duration. Because it is the sign a good
time is ahead, I love it as the dog of Pavlov loved the bell, I suppose.
Two or two and a half very good hours are following. The only risk I run is
a light "overdosis" dyskinesia. That happens if I don't use my possibility
to move. When this period ends the serious trouble starts, the off dyskine-
sia. It can be heavy. The most eye catching thing I do is kicking. If I try
to do something that needs coordination my muscles make every movement
except the one I want. It is most bearable if I can get myself stuck and
instead of making kicking movements, can press with my feet against
something unmovable. If the dyskinesia is not that tough, it may be impor-
tant to find a specific posture and concentrate to have some control. This
phase may stop very abrupt. Relaxation may start. That is how it should be.
But in stead of relaxation, it may be "top med's dyskinesia" that takes
power. The third possibility is: the end of med's dyskinesia does not stop.
If that is the case it is wise to take just a little bit extra sinemet. And
that is why it is important to be able to discriminate the two dyskinesi-
a's. If the diagnosis "the end of med's dyskinesia does not stop", is wrong
and so the dyskinesia is of the other type, that little bit extra sinemet
can do much harm. In the past it happened more often that I had to gamble,
than it happens now.
This dyphasic thing is a neglected topic. In mild form however I have seen
other patients suffering of inability to sit relaxed without moving when
their time to take pills is near. My neuro told that he often sees in
hospitalized PWP's, who are not invalidated, a behaviour which we call
"ijsberen"'( litteral: to polarbear) and the French: "faire l'ours en cage"
( do bear in cage) and the German most funny "Teppich fressen" (eat the
carpet).
I had PD symptoms many years before I was diagnosed. I did not suffer from
them till about 8 months before diagnosis. The thing that made me suffer
was not a mere enlarging of existing symptoms but mostly an impossibility
to relax, with tiredness and sleeplessness. Next time I'll write about
that.
As I wrote before, I don't agree with David on the incompatability of this
with Brian's system. It only makes it more difficult to apply. The goal
always is to flatten the curve of Sinemet-inflow into the brain.
If the combination of David's article and my text still leaves confusion
and questions, make that as clear as possible. I will again give it a try.
Ida Kamphuis, Holland, 52/12+
