 |
 |
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