Brian, and any others who read this,

I read your paper and even printed it out to give to my husband.  I am
afraid that Dorothy might be one of those few that can not take levodopa.
Let me give you some more details tha I got off her the other day.
I tell her husband and herself about what is on the listserv, but
unfortunately her husband is very wary of anyone on the internet.  Such as
the fact that there is no proof that anyone on the listserv even has PD.
He's sure that most of the people do but that there are also others who
might get on the listserv and just play with people's minds, dealing out
advice for a feeling of power with almost a professional tone to it.  Just
by using a medical journal.   I have told them about Barbara and how she
watches over this listserv like a guardian angel with an iron fist.  :)
But that doesn't seem to help his wariness.

Anyway, this is Dorothy's story.

She is wary of giving out her story because she is afraid that her dr can
sue her for slander or just refuse to see her.
Can this happen?

She was diagnosed with PD about 2 years ago but had probably had it for at
least 5.
Her dr put her on Eldepryl.  2 capsules mg a piece.  total of 10 mg a day.
The Eldepryl had reduced the most severe shaking because she was comletely
out of control with out it.  She had never been sick on Eldepryl even w/o
food.She usually took it 1/2 hour before breakfast and 1/2 hour before
lunch.  She takes the blue capsules.  She still has the trembling in her
hands mainly.  But before she was trembling so bad that she couldn't stay on
the toilet, or even sit still for very short periods of time.  She was
unable to eat w/o spilling her food especially her soup and anything she was
drinking.  But after the Eldepryl it is not as bad as it was, she can sit
still and can eat w/o spilling.  Her shaking gets worse when she is out in
public such as in the mall or getting her hair done.
One day her nerologist decided that she was ready for the sinemet to help
the rest of the shaking.
Dorothy wants to know what is the correct way to take the sinemet.  Do you
take it like eldepryl?  Do you stop taking the eldepryl and then go back to
both?
The reason she asks these questions that should be answered by her
neurologist is that she received two different stories.  This mix up almost
killed her.
They had put her on what is called a time release pill.  Anyone ever heard
of that and used it?
Anyway, she had taken only one pill of Sinemet CR when she got violently
sick.  She was vomiting every 15 minutes, she fainted and was vry weak.  She
thought that she was dying. Her Blood pressure dropped to very dangerous
levels. It lasted from 11:00 am to the next day at 12:00 pm.  Only from one
pill.
The neurolgist had her start taking the sinemet CR 15 (I think that is the
number on it) while still taking the eldepryl.
When she got sick she called the neurologist's nurse who told her to go off
the Eldepryl completely and take the Sinemet.
The neurologist called back also and told her to just go back to just the
Eldepryl.
Neither knew the other had called.
The neurologist had given her the time release pill because she thought that
it would be easier to take then taking it different times a day.
My sister in law who is a Nurse practitioner suggested that her mother try
the Sinemet in the smallest doses instead of the time release pill.
But now Dorothy is so afraid of the Sinemet and what adverse problems it may
cause, such as the vilonet drop in her BP, etc that she is very wary of it.
She brought the suggestion up to her neurologist but her neurologist just
said that it was up to Dorothy, but she would rather see Dorothy for another
year on the Eldepryl.
This neurologist only wants to see Dorothy once a year, which I find totally
strange and unprofesional.
Dorothy and her husband have read several books on PD.  In all of the
medical books they have read it states that the sinemet can stop working in
10 years.  Even the ones from the Parkinsons PROPATH (I think that is what
she called it).
Instead of seeing her dr., PROPATH sends her an evaluation paper to fill out
every 3 months.  They fill it out and send it to PROPATH then they send it
to her dr. and they keep a copy.Route to Better Management of PD - next to
PROPATH.
So Dorothy doesn't know what to do.
I have told her husband that the opinions on this channel are personal and
from experience not professional. And that everyne who gives out advice will
be the first to say so.
I personally feel that if there were some people on here that were giving
out just any kind of advice so that they could pretend to be a dr and mess
with eople that Barbara would have them out on their ear or at least expose
who they are.

I really enjoy this listserv and Dorothy likes me to read them to her over
the phone.
She would like your opinion on how to take the Sinemet, and if anyone has
heard of this strange reaction she had with her BP.
And any information about this time released pill.  Has anone ever
experienced adverse reactions to it atc...?

Please respond.

Laurie