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PARKINSN Archives
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PARKINSN@LISTSERV.UTORONTO.CA
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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
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1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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