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 [log in to unmask] *************** ----- 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 > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn