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Old 01-24-2008, 05:29 PM
arthurhlevine
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arthurhlevine
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Default for the future PCS cases

Quote:
Originally Posted by Nancy F View Post
Arthur,
The only good reason I can see, in continuing to keep appts. is the learning that they get from your experience and your intelligence. It is for the future PCS cases down the road, whether the very distant road or not so distant who will gain from any new therapys or treatments. Hang in there and continue to believe in yourself enough to plow forward with your brain, however scrambled. I personally like my eggs scrambled!
I have considered just that point on more than several occasions.....
There are these neuro research doctors who want me to let them put me in the hospital for 2 weeks, all the while wired up to an EEG lead harness that I cannot stray more than not too many feet from the "terminal", so that they can "get a better idea of how and why you function the way you do". They have spoken with me several times regarding this request.
I have refused, and will continue to as I have no intention of spending two weeks as a "captive" with little or nothing to do and nowhere to go......Oh Yeah, and they want somebody to pay in full for all that time too.....
I did however on several occasions make them what I consider to be a really good offer......
I told them that the technology exists, and even told them who at their sponsoring University could tell them the "what" that would allow them to hard-wire me and my scrambled egg brain up and record in "real time" all the data acquired thru either a transmitter to a remote recorder or to a flash memory device that could be downloaded and the data sent directly to them. Wouldn't matter what I was doing or where I was doing it, the data would be real-time and what is really happening with and to me when and where it happens.
I found, and still find it rather hard to believe, that this offer (and IMHO it's a really good offer too) was each time turned down faster than a dog can eat a hamburger. This that and the other about control and equipment and monitoring and and and and.........
They have told me on more than several occasions how important it is that those who show unexplained rehabilitative abilities allow the research folks to delve into the mysteries of ones inner workings.....I agree whole-heartedly and am more than willing to participate......But, it is going to be on MY terms and no one else's, or it ain't ever gonna happen.....Call me selfish or whatever you wish, but, that's just the way it is, and that's just the way it's gonna stay.....

They, "the research doctors", all seem rather upset that I am no longer a willing participant in any of the tests or "treatments" that they want to try, one of them even having told me that "you read to much, you just need to let us do what it is that we do"
I am not, as the sincere and mis-guided young doctor soon found out, very well disposed to anyone, and I don't care who it is either, ever telling me that they know what is a) better for me than I do and b) how I "need" to do anything that I have determined is not in my best interest to do....

And though selfish may be exactly what it is, I really have no problems with being a guinea pig, as long as it's on my terms...

I like eggs too, scrambled, and, hard-boiled.... go figure.............
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