Important New Precautions about PROPULSID

["Tebay, Wendy M" <wendy.m.tebay@xxxxxxxx>]

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Thanks for the info.  I really haven't kept up with following the
discussions here for a while, so I wasn't even that familiar with what
PROPULSID is, but I still found the info useful and now I knoq to do some
research on it or bring it up with my Neuro.

I just read an interesting statistic in today's paper.  It said that
prescription medications now rank about fourth in the list of the leading
causes of death in adults, just behind cancer, heart disease, and something
else.  That is scary to me, especially as I credit the drug Compazine as
likely playing a role in doing much of the damage which led to my pd, as
well as the fact that now due to this situation, I will be most likely be
regularly taking drugs the rest of my life.  The long term effects of this
on other body organs (liver, kidneys, etc.) concerns me.

An uncle of mine nearly died after a heart attack that he had, and it wasn't
due to the heart attack, but rather to some sort of allergy to the drug that
they gave him afterward.  It's a fairly standard drug for this purpose, and
the incidence of this sort of reaction is very rare (basically, all of his
organs were systematically shutting down).  It is so rare in fact that the
hospital staff had never seen it, and really didn't know how to handle it
very well.  It also bothers me that since my own severe reaction to
compazine, I have seen it freely given to others to treat mild nausea, etc.,
with what seems to me to be a very casual attitude, considering my own
reaction.  I have wanted to run over and yell, "Don't do it!", but didn't.

Still, if prescription drugs are the cause of so many deaths (or other
permanent physical problems), even more reason to pursue and put research
into typically less harmful alternative treatments and/or preventative
measures.  Not that there aren't some alternative treatments too which can
cause problems, but in general, my guess would be that since they are more
focussed on helping the body to heal itself, rather than merely treating
symptoms, the percentages of those adversely affected by alternative
treatments would be far less.  Not to mention the fact that since alot of
alternative treatments have been around for many years (e.g., acupuncture),
and have been used on many people over the years, there would be less heavy
duty research required.  Most of them too, due to their nature, would more
suited to mainly human research, vs animal research, thus bypassing alot of
the reasons (safety) drugs are tested on animals first.  My ultimate goal is
still to eventually beat this thing, not by high-tech treatments, altho'
I'm not against using them when necessary, but by my own will to do so
(mind/body, etc.).  I'm stubborn, and since all I generally have heard that
PD is incurable, fatal, etc., I simply must do the opposite, and prove them
wrong.   Frankly, I'm also worried about the long term effects of all of
these drugs which I am now taking.  I also hate the idea of being dependent
on any sort of human creation, whether it's drugs, glasses, technology, etc.
This might be naive, but I prefer the thought that if I really had to, I
could get by by totally "natural" means, or perhaps a better way to put it
would be by more naturally "friendly" means.

Wendy Tebay

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Date:         Tue, 30 Jun 1998 18:30:52 -0500
Reply-To:     Parkinson's Information Exchange <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sender:       Parkinson's Information Exchange <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
From:         Jim Cartwright <jimc@xxxxxxxxxxxxxxxx>
Subject:      magazine article

This will be my first time on. Have been reading the letters for about 2
weeks. Saw the
one about having pd written up in magazines. Today I got our FDA
Consumer
magazine in the mail & there was an article about pd & had the parkinson
net list
address in it too. Here is what it said. "SOCIAL NET'  For Parkinson's
disease patients,
both updated information & social interactions are key factors in
battling the disease.
Though patients seek these through traditional means such as their
doctors, families
& friends, many are turning to the internet.
Patients can compare notes on pd issues & stay in touch with others with
the disease
by subscribing to an internet parkinson's mailing list. Some of these
list deal with pd
as one of a number of neurological disorders. Others focus on
caregiving. One list
that is an open forum just for parkinson's patients is called
"PARKINSIN"
Maintained at the University of Toronto, PARKINSN gives patients a place
to
pose questions or just let off some steam. A recent scan of the list
revealed
messages about exercises that can relieve some pd discomfort, surgery
success stories
reviews of books about the disease, poems, even some pd jokes. ONe list
member
announced that he is marrying his doctor, & he invited everyone on the
list to his wedding
To join PARKINSN send an e-mail message to LISTERV@xxxxxxxxxxx
in the body of the note, write: subscribe PARKINSN (your first name)


(your last name)
End of that part of the message in the magazine. There was 6 pages about
pd Had
pictures of Muhammad Ali, Billy Graham & George Wallace. I was thrilled
to see it.
Now a little about my husband & me  Jim has had pd for 3 years now. It
is till in the
early stages. only has a little tremor in lest hand. Went to get an eye
exam. Nurse put
in eye drops to dilate his eyes, then he could not see anything. She
called in the dr.
He said he had dry eyes. ask Jim in he shook a little? He said yes he
did. Dr said he
may have pd & he was forgetting to blink his eyes, & this was the
problem. He sent
him to a neurologist, we didn't get along very well. So went ot a
movement disorder
neurologist out of town. He is great, doesn't believe in giving too many
medicines.
We have really enjoyed the conversations, has helped us a lot.
Betty cg of Jim