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