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Old 11-21-2009, 11:27 AM   #11
Clodfobble
UNDER CONDITIONAL MITIGATION
 
Join Date: Mar 2004
Location: Austin, TX
Posts: 20,012
Sorry, I don't know how I missed that video earlier.

The purported severity of her seizure 48 hours ago doesn't raise any red flags with me, because the very nature of seizures is that they come and go and can vary in severity. More damning would be the idea that she is perhaps a typical epileptic rather than a new case of dystonia, because a real epileptic will tell you that they can be hit out of nowhere with a seizure severe enough to cause them to lose bowel control, and mere minutes later the seizure might be over and they will appear normal. My understanding of dystonia is that the seizures are more low-level and constant, but the severity can come and go there as well, as discussed by the dystonic patient in the video jinx posted earlier.

We're basically at an impasse, here. I find her story credible, because I have seen similar symptoms in other people starkly reduced in a similar manner with similar treatments. I'm not going to make a definitive proclamation one way or the other about her specific medical condition, because I haven't seen her lab tests (both before and after treatment,) and I don't know her or her doctor personally. Is it possible the whole thing is a huge scam? I suppose it is, but that would be silly, because there are hundreds if not thousands of other patients out there who have received similar, documented relief from these treatments. This one just happened to get picked up by the media. Not everyone wants to have their life thrown out there, you know--just last Thursday, I was sitting at a table with a dozen other women with autistic children who are in the process of recovering or are already completely recovered, and we were talking about the fact that I have been posting progress videos of my son on YouTube. As I was surprised to learn that night, I am the only one at the whole table who has done this. The rest of the women felt that they were so exhausted by just living with the process, they didn't have the time or energy to deal with showing anyone else what they were seeing. They felt it was enough that they had demonstrated results to their own relatives, and their children's individual teachers and therapists. The vast majority had stopped going to see their pediatrician and neurologist at all, because there's only so many times you can be called delusional to your face. I sent my videos to my pediatrician. By her own admission, she did not watch them. Desiree Jennings is not the only one this has ever happened to, she's just one of the few who's willing to become a huge target by putting her evidence out there.

My life experiences indicate to me that her experience is a credible one. Yours indicates to you that it is not. But you must admit that you do not have experiences to indicate that hers is false--you don't know anyone with dystonia who has been unable to improve with these treatments. You simply lack any corroborating experiences. Which is fine. But if you find yourself inching over from healthy skepticism into vilification and accusation, then you will only help make it more unlikely that others will come forward with their stories.
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