Re: What I have learned: for John C. and list

["Nancy K. Porter" <nkporter@xxxxxxxxxxxxx>]

Kathleen,
I think I accidently posted a Re: copy of your post without adding a
reply.
I'll try to keep my finger away from the send button longer this time.
AS OPRAH MIGHT SAY "YOU GO GIRL" BRAVO!
 I quite agree with your re-cap of the Deborah/Chiari thread.
Additionally, I do not see  discussions about Chiari as anything like
"banter" and certainly not as entertainment.

Enlightening, yes.  We have had an opportunity to learn about yet
another condition  that exhibits Parkinson-like symptoms. After reading
and participating on a small scale on this list for less than a year, I
have learned that almost no one has "typical" Parkinson's. Denying
Deborah contact with people who have become friends and who have come to
respect her tenacity and courage in the face of more adversity than most
of us have had to bear is simply unkind.
Nancy K.  Porter
On Sunday, August 25, 2002, at 05:17 PM, Kathleen Cochran wrote:

> 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:
> >
> >
> > 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:
> )
>
> - 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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