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Hello Yen,

Hi! This is Krishna Ayala. After reading your letter, I was amazed at
the similarities in our cases. I  was diagnosed with PD at the age of
30. My neurologist put me on 3 sinemet 25/100 a day and I was doing
wonderfully.....each dose would keep me going for at least 4-5 hrs.

I was ecstatic because that meant I could still work to my fullest
capacity. Four months later, I became pregnant with my first child. That
was the beginning of my downward slide. Don't mistake this statement to
think that I blame my pregnacy for it. Never once have I regretted the
fact that I was going to have a baby. I'm just stating facts as they
occurred to me. I did fine during the first trimester (1st three months
of pregnancy). During the second trimester, however, the sinemet
efficiency dropped down to 2 1/2 hours. That caused me great alarm. I
told my neuro about it, and he increased my dosage to 4 sinemet a day.
By the end of my third trimester I was up to 5 sinemet a day and each
sinemet was effective for only an hour! I was in a state of panic. I had
to do work in the office, come home and do the dishes and cook food for
me my husband. It was getting extremely dificult to carry out these
duties when my sinemet was good for only an hour. and, yes, I forgot to
mention the fact that I lived in new jersey and worked in new
york...commute time each way 1 1/2 hours, which meant I was on the bus
to or from the office for 3 hours a day and I always felt that whenever
I was 'on' while commuting, it was valuable time wasted!!somehow, I
managed to make it through my pregnancy and work at the same time. By
now, I was extremely depressed and frustrated. There is only so much a
person could do by being 'on' for 5 hours out of 24. Specially when the
'on' times were extremely dyskinetic and 'off's were extremely rigid.
This was in 1989. Fortunately at work, I had very good and understanding
bosses, and what the heck, call me immodest if you will, but I work fast
and produce accurate timely output, which meant that the projects I
worked on , were always delivered on time. I managed to drag on this way
for until april of 1992, when I felt that I was becoming rather
unproductive and then I informed my boss that I'd like to go on long
term disability. To which he agreed. That was the end of my job.

The days that followed, were equally miserable, because I missed my work
and my condition wasn't getting any better, only worse. All this time at
home caused me to think a lot about the whole situation from a different
perspective. I came to the conclusion that the cause of my quick
deterioration was because of the high dosage of sinemet taken in the
early stages of PD. I'm serious about this. It is true in my case at
least. But, it was too late by now. What was done could not be reversed.
I did however get down to 3 sinemet a day after my delivery.  But my
'on's and 'off's were either too dyskinetic or too rigid.

I did see 3 other top neurologists in the newyork, new jersey area and
all three concluded that my body was extremely sensitive to sinemet.
It's been nine years now since my diagnosis, and in the meantime , I've
had a pallidotomy performed (nov. '95) on the right side of brain
because my left side was far worse than the right. For about 6 months
after surgery, I can't tell you how good it was. I was able to sleep
thru the night after about 7 yrs of insomniac hell. But, I seem to be in
a no-win situation, for 6 months after surgery, my pd worsened and has
been taking a dip every 6 months following. However, I have never
regretted the surgery, for without it I'd have been worse off! I'm glad
I  had it done when I had it done.

Right now, I'm on mirapex but my response to it , tho definitely an
improvement over the sinemet/permax combination, is still not as good as
the others have reported it to be. I'm seeing my neuro again next wk too
see what can be done to improve the situation.

So, Yen, my advice to you would be....go slow on the sinemet.

In case u r interested, I  went thru a perfecly normal delivery and my
son was perfectly normal. He is now an active and healthy 8 yr old boy.
I thank God for that.

Feel free to ask me any doubts u might have. I'll be glad to help u.
good luck to u.

regards......krisayala

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