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>             I hope we get some response from others who have good methods
>of coping with thermostat problems
>Best Wishes, Bill Olson  69/dx 1983..

Dear Dennis, Bill, Rick, Ivan and all others,

First of all I wish for Dennis the best possible results of his second
surgery. Do you know already when it will be?

I was thinking  about the problems of Dennis (and my own) and trying to
remember the name of a person who wrote to me when I was on the verge of
undergoing pallidodtomy: such a nice letter about his pallidotomy at one
and DBS at the other side.  That was you Bill, am I right?
My problems with suffering from sweating and having a to high temperature
have disapeared nearly completely after my one-sided pallidotomy (sept. 1996).
Before that I always provided warm pullovers for visitors to prevent them
freezing and could myself hardly stand any garment with sleeves. I stunned
people after my pallidotomy by asking for myself a pullover or socks. And
until this day the thermostat of our house heating can be set higher while
my intern one is lower.

Ivan, I did suppose that this high temperature together with dyskinesia and
high muscle tension caused, by using so much energy, the craving for
sweets. I knew this craving for sweets from my holidays in the mountains,
when I used much energy too. In both situations I could eat much sweets
while losing weight.

The results of my one-side palllidotomy first seemed te be two sided, but
in time my dyskinesia (wearing off) in my untreated side showed up again
and has increased. So I have still to be very carefull with the amount of
sinemet I take, but I am only able to prevent dyskinesia by taking no
sinemet at all. My symptom of rather heavy one side dyskinesia is not
nearly as spetacular as that of total dyskinesia but it is invalidating,
exhausting and tormenting enough
to be a real problem.
As for speech problems, after the surgery I could hardly or sometimes not
at all speak understandable. Now that prob1em has completely disapeared
when I am low on sinemet and even in my dyskinetic periods (when I am
"wearing-of" sinemet) and sinemet level is low, the only thing I can do is
to speak quite normally. In the morning too, before I have taken any
sinemet and can function  seemingly normal as long as I am not trying to do
something, speech is not a problem. But, espescially when I am tired and a
bit extra sinemet is helpfull for remaining "on", speaking may be totally
impossible. That is weird, isn't it?

I had from the start of my PD a kind of "black outs". Sometimes wile
talking, suddenly in the middle of an argument or even in the middle of a
sentence, I feel completely empty, and  don't know wat I am saying or what
is the subject of the conversation, but by asking and being told a few
words about what I said and in which context I was saying it, I know it all
at once again and can finish my argument or story. I have this symptom at
least 15 years, it is not getting worse. It seems more parkinson than med's
related.

All things considered I can still manage my life, but I think it quite
possible that I will need an other operation if things detoriate. But at
this moment there is no need to decide when, and what kind of operation,
that will be.

Regards, Ida Kamphuis

--------------------------------------------------------------
Vriendelijke Groeten / Kind regards,

Ida Kamphuis                            mailto: [log in to unmask]