Judith, Al & List-family...
I'm in a state of confused mourning for a PD-kinsman whose presence
was SO strongly represented amongst our List-family thru your caring,
eloquent words.
I'm confused because it seems - from the information which was shared
with us about Joe's medical treatment over the past few weeks, his
passing NOW, after SO many varied drug protocols had been thrown at
him to try to find something, ANYTHING, that worked was untimely,
and possibly - PROBABLY - due to medical ignorance.
After following the painful history of Joe's decline over the past
few weeks, it appears the medical community treating Joe was like a
bunch of fumbling "Mr.. Bumbles," when it came to providing a
well-balanced and coordinated treatment protocol for a disease which
isn't THAT uncommon anymore.
It REALLY hurts to know that from all appearances, Joe didn't have a
chance once he entered the hospital.
I find myself questioning that because it simply defies reason to
think that in this day and age, when Parkinson's is more understood
than ever before in the history of the disease that someone suffering
from the disease STILL cannot get even an AVERAGE, much less GOOD,
and EDUCATED treatment.
Sadly, for Joe, it seems like treatment was administered by the
"Russian Roulette Method," i.e., keep changing things till by
dumb-luck SOMETHING works.
That "if some is good, more is better" attitude when it came to Joe's
drug intake is like waving a red flag at me, because it sure seems to
me that Joe was bouncing on/of, and having other, far worse symptoms
from a drug OVERDOSE, rather than from not taking ENOUGH.
Finally, that Joe's wife had kept a detailed diary of his illness
SHOULD have been seen as a WONDERFUL source of useful patient
information, and those physicians were FOOLS not to recognize it as
being a valuable tool for them to use in treating Joe's PD.
In rereading the above, I've noticed how angry (for me) I come
across. It's just that I feel such a sense of loss AND PD-related
frustration.
Barb Mallut
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-----Original Message-----
From: judith richards <[log in to unmask]>
To: Multiple recipients of list PARKINSN
<[log in to unmask]>
Date: Tuesday, January 19, 1999 10:34 AM
Subject: Death in the family
Dear list friends:
Our friend Joe died today after a three-week battle we thought we
were
winning.
You have read about Joe's problems which started right after
Christmas
after he had been taken off Tasmar and put on Requip. Later it too
was
removed.
The fatal problems started with severe freezing episodes right after
Christmas. Joe was released from hospital on Friday, after three
weeks,
when it appeared that problem had been conquered. At that time he had
been placed on Amantadine, in addition to his Sinemet.
However, he suffered psychotic episodes all night Friday and was
taken
to Emerg. His meds were reduced Saturday and he was sent home. He
suffered severe psychotic episodes again Saturday night and was taken
to
Emerg at a psychiatric ward where his neuro (movement disorder
specialist) would be on duty later Sunday.
He was admitted under care of the MDS and psychiatry staff and had
some
psychotic episodes during the night but appeared to be calming down
in
the morning. He was given his last dose of Sinemet at 6 a.m. and
stopped
breathing about 7:30.
The coroner, the PD specialist, and the rest of us don't know why Joe
died. Parkinsons is not fatal. But Joe's dead.
As soon as we know, we'll tell everybody why our fellow Parkinsonian
is
no longer with us.
There are many more details, such as swallowing problems and feeding
tubes and timing of meds, and dosages, and fear of the psych ward
which
he ended up in, but at this time we don't know how they were involved
in
Joe's death. Thanks for your caring messages.
Al Richards, cg for Judith
--
Judith Richards, London, Ontario, Canada
<[log in to unmask]>
^^^
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