Dear Phil , Sherilyn and Sandra,
I have been taking sinemet for 16 years. We have had our ups and downs, b=
ut I
would not give it up for anything - except the cure. Because , for me it =
has
worked. I have had to supplement it, and as the various supplements have =
been
developed, my treatment has been fine tuned, and very often the sinemet
portion proportionately adjusted. But basically, it is sinemet that has b=
een
my saviour. Thus far

At first I took only sinemet.  Then when I came to the States, an over-ze=
alous
neurologist added both amantadine (symmetrol) and bromocriptine (parlodel=
).
Over the next couple of years I developed tremendous swelling in the legs=
, my
migraines became horrendous, and I also developed a form of Reynaud's (or=

something very like it)  I also becamep regnamnt, and gave birth to a
wonderful little girl who is now 13.

At this point in time, my neurologist, who was NOT      a movement specialist,=

confessed he didn't know what he was doing, and I moved to a wonderful do=
ctor
in Maryland. She pulled me off amantadine and bromocriptine straight away=
, and
then put me on eldepryl, which had just come out on the market. It was
miraculous. My sinemet dose went down to about one third of what it had b=
een.
THen this doctor said she was going to Boston to study some other aspects=
 of
Neurology. =


I was distraught at losing such good care, but we found another doctor, i=
n
Northern Virginia - closer to home  - as good, if not better.  My present=

doctor is famous for her ability to fine-tune and balance the different
medications available,  She has an uncanny knack of finding the correct
medications, and then being able to balance them individually for each  o=
f her
very many patients. Whether this is a skill or a talent, I'm not sure, bu=
t I'm
very grateful for it.

However, over the last couple of years, my dyskinesia was getting more an=
d
more out of control.
I have taken permax, and rejected it, and now I am on mirapex, but it was=
 not
enough. Finally, my doctor decided it was time to look into the possiblil=
ty of
surgery. We had already set up the appointment to make a vidoetape to sen=
d to
the surgeon in New York, so that he could make a preliminary  assessment =
of
whether I was suitable for the DBS program, when I saw something posted o=
n the
list which caught my attention. And I asked the doctor about it: =

"Can I try taking amantadine again ? - someone on the list did, with grea=
t success!"
The doctor was open to suggestion:  "Sure, why not give it a try, and see=
 what happens?"
The results were nothing short of miraculous. Two days later, I came in t=
o do
the video to show my extreme dyskinesia.  "Sorry", said my doctor. I can'=
t
send this tape to the surgeon. You hardly have any dyskinesia at all. He =
will
just laugh at us for wasting his time."

That was in September.  The effects of the amantadine are beginning to we=
ar
off, and I'm beginning top exhibit slight side effects. But I have had se=
veral
good months, and that is all time won, bringing us ever closer to the cur=
e,
and at least in the meantime there are always newer medicines available -=
 and
the longer I can put off surgery, and the closer we come to the cure with=
out
the need f0r surgery, the happier I am.

I guess what I am trying to say is - there comes a time when sinemet is
necessary. If the other medications cannot bring you back a certain amoun=
t of
comfort and mobililty, then that is what sinement is there for. Take it, =
use
it, and improve the quality of your life. Why suffer now - if your life h=
as
reached that point when you are suffer ing - take the sinemet. =E5nd beli=
eve in
the cure - by the time the sinemet becomes ineffective, or its side effec=
ts
outway the good, there will be something else to replace it, even if it i=
s not
the cure.  =


I hope I have made sense. If you want to contact me directly, please do.

hiLary bLue ( 50/33/24)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~=
~~~~~~~~~~~~~~~~~~~~~~~~

> >not diagnosed (properly) until the age of 28 because of being so young=
=2E  At
> >the time of diagnosis I really wasn't concerned about the whys and
> therefore
> >of taking Sinemet.  At the time I was finally dx'd I was in a wheelcha=
ir
> >totally dependent on my parents for my quality of life.  At Bowman Gra=
y
> >Medical Center in Winston Salem, N.C.  I was given my first dose of
> Sinemet.
> >To me, the effect the Sinemet had on my body was miraculous.  Within a=
 30
> >minute time frame I was up out of the wheelchair and walking, very slo=
wly