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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:
>>
>> 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
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
> mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
----------------------------------------------------------------------
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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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