<bigger>Dear listmembers,


I have been silent for about 4 months following a very positive result of
a pallidotomy. The reason was that the results of that pallidotomy turned
out to be much less positive than they seemed to be just after the
surgery. I had a very tough time to learn to accept that and felt a need
to cut myself off from thinking and reading about Parkinson. Now I am
over the worst and ready to tell the "post surgery story". The first days
were a revelation about how life can be, being able to relax. The first
blow came soon as a disturbance in concentration, that manifested itself
clearly when I tried to resume my work tanslating a book from English
into Dutch. Making a good translation demands something of one's memory,
that was beyond my capabilities of the moment. One has to "swallow " a
certain amount of information freeing it from the concrete words and than
put it into Dutch words. The translation I made was understandable for a
Dutch speaking person, but was not the real Dutch, but English with Dutch
words. I was not awfully worried about it because the doctors had
predicted it. Symptoms, which are indicative of difuse damage are caused
by a swelling of brain tissue which has been irritated by the needle
passing through it. These effects are temporary, so they said.

The second problem manifested itself about a week after the surgery,I
could no longer talk clearly. My voice was soft and my articulation
deteriorated. Before my speech  had always been unaffected by Parkinson
and I could not totally trust the prediction it would be temporary. It
was rather scary. Now it has turned out that it was temporary indeed.

This all was not enough to put me out of countenance. The next blow did
that. The symptoms of dyskinesia and dystonia came back not as severe as
they used to be but severe enough to be very disturbing. They were now
restricted to my untreated right side. The treated left side stayed
remarkably quiet. The symptoms on the right were heavier than they were
before surgery and seemed to grow every day. I had a consult with my own
neuro. He said that, if other measures had been proved to fail, a "deep
brain stimulation" could attack the new symptoms after some time.
Besides, my symptoms as he saw them on the moment seemed  to indicate
that I was taking to much sinemet. This was confusing, because the aim of
the surgery was, so I thought to lessen the side effects of sinemet,
making it possible to tolerate a higher dosis. One of the doctors in the
hospital told me it was unwise to reduce sinemet after the surgery. Doing
so one made the effects of the surgery indiscernable. But I was eager to
believe my neuro, I guess because it did gave a tool to do something. I
felt very lousy and did not take half measures. During two days I did not
take sinemet at all and build it slowly after that. The result is I do
take now 300 mg sinemet each day, besides I have reduced my permax intake
to 60% of what it used to be. In the future it will be replaced by one of
the new agonists. This has resulted in a condition that is better than it
was before the surgery. Especially walking is much better. Going for a
walk we used to take a wheelchair. Going off meant litterally I could not
put one foot before the other and trying hard would result in wild
dyskinesia. Now we walk without a weelchair. To walk when off is not very
easy, but always possible and being  being on I walk better than I did in
years. Reading the list it struck me that Dennis Green also told his
ability to walk ameliorated as a result of pallidotomy.

During the days without sinemet the old Parkinson symptoms showed up
again. A surprising thing was that those original symptoms also are
clearly affected by the surgery. My parkinson has not been totally
unilateral. My left side however was always most affected but now after
the surgery the symptoms on the left are less and the symptoms of the
right side are not more. So the net result seems to be that my Parkinson
has ameliorated! But sadly I can not end this story as a fairy-tale in
which in the end all is well. One symptom throws a spanner. I do fall
more frequently. It happens without any warning and the reflex, to
protect the face with one's hands is not functioning. What makes it worse
is that I'm not able to stand up by myself.=20

I'm hoping to write to the list frequently again and to hear from you,

kind regards,

Ida Kamphuis      =20


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Vriendelijke Groeten / Kind regards,


Ida Kamphuis                            mailto: [log in to unmask]