Ida,

Thank you for sharing your results with the list.  What a roller coaster =
ride you have been on!  From joy to discouragement and back again several=
 times.  I know you are grateful for the benefits you did achieve.  Know =
that many on the list including me will keep good thoughts for you tucked=
 gently in our hearts.

Best wishes,

Claudia Goldberg,
A Learning Newbie

Ida & Andre Kamphuis wrote:

> 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 tur=
ned out to be much less positive than they seemed to be just after the su=
rgery. 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 clear=
ly when I tried to resume my work tanslating a book from English into Dut=
ch. Making a good translation demands something of one's memory, that was=
 beyond my capabilities of the moment. One has to "swallow " a certain am=
ount of information freeing it from the concrete words and than put it in=
to Dutch words. The translation I made was understandable for a Dutch spe=
aking person, but was not the real Dutch, but
> English with Dutch words. I was not awfully worried about it because th=
e doctors had predicted it. Symptoms, which are indicative of difuse dama=
ge are caused by a swelling of brain tissue which has been irritated by t=
he needle passing through it. These effects are temporary, so they said.
> The second problem manifested itself about a week after the surgery,I c=
ould no longer talk clearly. My voice was soft and my articulation deteri=
orated. Before my speech had always been unaffected by Parkinson and I co=
uld 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 r=
estricted to my untreated right side. The treated left side stayed remark=
ably 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 st=
imulation" could attack the new symptoms after some time. Besides, my sym=
ptoms as he saw them on the moment seemed to indicate that I was taking t=
o much sinemet. This was confusing, because the aim of the surgery was, s=
o 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 wa=
s unwise to reduce sinemet after the surgery. Doing so one made the effec=
ts 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 no=
t 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 o=
f 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 no=
t put one foot before the other and trying hard would result in wild dysk=
inesia. Now we walk without a weelchair. To walk when off is not very eas=
y, but always possible and being being on I walk better than I did in yea=
rs. 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 ag=
ain. A surprising thing was that those original symptoms also are clearly=
 affected by the surgery. My parkinson has not been totally unilateral. M=
y left side however was always most affected but now after the surgery th=
e symptoms on the left are less and the symptoms of the right side are no=
t 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 al=
l is well. One symptom throws a spanner. I do fall more frequently. It ha=
ppens 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 sta=
nd up by myself.
> I'm hoping to write to the list frequently again and to hear from you,
> kind regards,
> Ida Kamphuis
>
> --------------------------------------------------------------
> Vriendelijke Groeten / Kind regards,
>
> Ida Kamphuis mailto: [log in to unmask]