Hi! Kathleen:
    I agree with your statements completely.  You have pointed out the
importance of learning PD-like comlications which have perpelexed even
medical professionals for so long.
    When I first read the quoted comments, I felt it was rather cold and
discompassionate.  I am sory to say this.  But, that was how I felt.  And
then I felt sorry for the individual who made this comment and forgot about
it.  Charity begins a home!  I do find it wrong to help one of our own kind
who was through thick and thin with us for so long.
    Raj
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----- Original Message -----
From: "Kathleen Cochran" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, August 25, 2002 9:17 PM
Subject: What I have learned: for John C. and list


> John Cottingham wrote:
>
> << All of this banter about Chiari is entertaining and enlightning but it
> > is off the topic of living with and being about Parkinson's.
> >
> > I am sure it is distressing to be unsure about your diagnosis but this
> > forum is governed by the Parkinsn Charter/Guidelines at:
> >
> > http://parkinsons-information-exchange-network-online.com/parkinsn.html
> >
> > Appeals for funds no matter how urgent and worthwhile are beyound the
> > scope of our Guidelines.
> >
> > We have shown our kindness and concern daily since our inception about
> > 9 years ago. I am sure those without Parkinson's but who have something
> > else will find a forum somewhere where they can find support. If any
> > list members wish to keep up with the current saga can do so by email
> > rather than by posting to Parkinsn. >>
>
>
> Just returned from a business trip...I am perplexed and troubled by this
> latest dictum. There is nothing in recent posts re Chiari and/or Deborah
that
> I would remotely characterize as banter or entertainment.
>
> The last couple of weeks have been most informative to me, a PWP. Thanks
to
> Deborah Setzer, I have learned:
>
> - There is something called an FDOPA-Pet scan that yields a picture of
what
> your brain is doing, dopamine-wise. Where diagnosis is unclear (e.g., PD
meds
> don't work), or when considering surgery such as DBS, having this test can
> yield valuable, indeed indispensable, information.
>
> (This test is one basis on which claims for neuroprotection are staked. To
> learn more and see what the scans look like, go to this URL:
> http://www.parkinson.org/slowpropd.htm)
>
> - Something called a Chiari malformation can cause symptoms like
Parkinsons.
> This can occur due to congenital malformation or injury/trauma.
>
> - It is always, ALWAYS a good idea to follow up with a phone call to the
> doctor whenever blood work is done and/or tests are run. Doctors miss
things,
> sometimes big things.
>
> - I also have a much better idea of what DBS surgery looks like and feels
> like, thanks to Deborah's willingness to post photos of her procedure.
>
> All of this, for me, is extremely helpful, and I am grateful to Deborah
and
> Robert for their generosity and openness.
>
> About who's welcome on this list: Parkinsons, as we all know, is a
"designer
> disease" of mysterious etiology, which means that at some level most of us
> are unsure of our diagnosis. If only those who are "sure" were welcome,
then
> the list would shrink to a fraction of its current membership. But of
course
> this is not the case. Many posters and mostly-lurkers have no definitive
> diagonsis or do not have PD.
>
> And regarding the phrase "the current saga": this is not a soap opera, any
> more than are Ivan's political activities or Don/FLASH's trials and
triumphs.
>  Maybe some do not like Deborah's "saga" -- too messy, maybe, or not
> sufficiently self-effacing. Well, that's immaterial, isn't it? It's
Deborah's
> story; she has opened up to all of us; and those of us who appreciate her
> candor and care about her outcomes deserve to keep up with it. For those
who
> don't, the ever-ready delete key can take care of any unwelcome intrusion.
>
> Regarding appeals for funds for Deborah, this is occurring not via the
PIEN
> list but through Tom Berdine's web site, youngparkinsons.com.  IMO,
telling
> people that this mechanism exists is not the same as spamming them with a
> solicitation.
>
> If Deborah is cut from this list, it bodes ill for all of us. Information
is
> easily accessible on the web. Understanding, friendship, support -- these
are
> harder to come by. If PIEN tips too far towards "just the facts, ma'am,"
then
> its reason for being becomes tenuous.
>
> Regards,
> Kathleen
>
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