Sherri C....
Sherri, you made a comment in your response to Bernard's post, see below,
>>I've often seen people on this list explain and identify
>>potential problems that doctor's, even specialists, didn't catch.
that started me thinking.
In the 20 or so years I've had PD, viewed from where I am today, I can see
that the internal medicine and/or general MD's I've been to over the years
showed an abysmal lack of knowledge about PD. Beyond Sinemet, their lack of
PD drug awareness simply appeared to be nonexistent.
Things got a little better with the average neurologist (those who are NOT
movement disorder specialists), yet those I'd seen - all within the last 14
years - pretty much seem to have very old fashioned views of PD, tho they DID
have a better idea of the available drugs for today's Parkie. Without
exception all were surprised to hear of anyone getting PD while in their 30s
as I did (which as WE know, ain't all that uncommon!).
There was a huge difference when I finally was seen by Dr. Iacono at Loma
Linda University School of Medicine, as HE is prolly one of this country's
pre-eminent movement disorder specialists. WHAT a difference that made in PD
treatment, plus knowledge and use of the very latest drugs and surgeries. I
believe tho Dr. Iacono was always honest and candid with me, it was a
"sanitized" candor. Partly I believe this is a "spare the patient" attitude,
and partly because he's very "up," and positive himself (which is a great
thing to have when the guy's operating on one's brain!) <grin> (don't want a
pessimist poking around in my noggin!) <'nother grin>
In all the years I've had Parkinson's, the ONLY place and the ONLY people who
have been absolutely and totally open and honest about this disease are
HERE... on this list. In addition, I believe the collective knowledge about
the disease and all that's peripheral to it - the things that NO doctor knows
'cause it's often fragmented and anecdotal - found amongst the members here to
be SO vast that it's astounding.
I don't know as I see the MDs not "catching" all the problems inherent with
having PD. Personally, I simply think that most dismiss much of what they
read about or hear from their PD patients as being unimportant to not only
their patient's welfare but to the welfare of the greater PD community. I
believe there's a gross lack of sensitivity amongst the GENERAL medical
community to all the miserable subtle nuances of this disease (and truthfully,
that includes many other diseases, too). Unfortunately it's often that a
collection of those individual subtle nuances piled one on top of the other
within our respective bodies that makes our life so often rather tortured.
It's that "no biggee" attitude frequently found amongst some MDs when they see
the PD patient who has come to them for relief of symptoms that drives me
nuts... because it IS a "biggee" when it's MY body. No one in this group EVER
dismisses anyone who needs to talk about their PD... not HERE.
Barb Mallut
"Lil_Honey" on the Parkie Chat
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----------
From: PARKINSN: Parkinson's Disease - Information Exchange Network on behalf
of Sherri Cave
Sent: Saturday, January 04, 1997 5:12 PM
To: Multiple recipients of list PARKINSN
Subject: Re: Cultural U-turn
RTK.NET Mail 246513 Jan 4 20:12:17 1997
Bernard, your observations are interesting, but I think the difference in
attitudes towards giving advice may be much simpler: those who offer
specific suggestions are often assuming that PWP's on this list will
consult their neurologist before making any major changes in their treatment,
particularly if the advice involves their Parkinson's medications. Perhaps
this needs to be stated explicitly a bit more frequently...after reading
your post I had images of people just starting on Sinemet thinking, "Hey,
I think I'll try mixing it up with orange juice tomorrow instead of just
swallowing the pills whole!"
Finding a neurologist who your trust and respect is essential, but even the
good ones often don't know the details that many of the people in this
group do. I would like to think that good doctors will never fail to see
potential drug interactions with patients on more than five medications,
start patients on new drugs with serious potential side effects and leave
town without giving instructions on what to do if there is a problem, and
always identify potential problems like carbidopa toxicity in patients on
high dosages of Sinemet and have handy books of Sinemet "recipes" for
those who might need different ways of taking their meds in order to
get the best, most consistent results. Unfortunately, that's not always
the case and I've often seen people on this list explain and identify
potential problems that doctor's, even specialists, didn't catch.
And you think we respect _lawyers_ here in the US?? Certainly not in
neck of the urban landscape (Washington, D.C.)
Sherri
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