I am "permanently" unconscious. It doesn't matter if I now appear to be conscious. The word "Persistent" had come to mean "Permanent" in PVS (Persistent Vegetative State). Once a "vegetable" is always a "vegetable." The word "Persistent"at least had hope.
"Vegetables" only receive daily care, usually in a medical facility. I live on my own. I do not receive that kind of care. I do not receive therapy. I do not receive rehab. I do not have a neurologist, nor do I receive any neurological care or follow-up. "Vegetables" don't get any of those services.
(PVS not MCS, Minimally Conscious State, in this case.) If you were called a "vegetable" at one time you were probably diagnosed as MCS. "Far too often, patients [PVS] ... are given up for gone, left to languish in nursing homes where no one bothers with physical therapy or even to check for glimmers of regained consciousness." http://www.wired.com/2013/02/searching-for-consciousness/ I've been able to get out of that situation, http://thoughtfulveg.blogspot.com/2014/12/vegetable-on-loose.html.)
That I talk and write now does not matter. I still have the PVS diagnosis. I have been unconscious for years. I have been writing for years. I couldn't write in the hospital. Time has passed. The diagnosis is "permanent" and therefore sticks. If anything is added, the primary is still there. I am permanently without consciousness.
(PVS not MCS, Minimally Conscious State, in this case.) If you were called a "vegetable" at one time you were probably diagnosed as MCS. "Far too often, patients [PVS] ... are given up for gone, left to languish in nursing homes where no one bothers with physical therapy or even to check for glimmers of regained consciousness." http://www.wired.com/2013/02/searching-for-consciousness/ I've been able to get out of that situation, http://thoughtfulveg.blogspot.com/2014/12/vegetable-on-loose.html.)
That I talk and write now does not matter. I still have the PVS diagnosis. I have been unconscious for years. I have been writing for years. I couldn't write in the hospital. Time has passed. The diagnosis is "permanent" and therefore sticks. If anything is added, the primary is still there. I am permanently without consciousness.
-there is no hope.
For my part, I'm not a neurologist, just a curious person who looks at the neurology section on Google+, and happened to see your comment. The term "permanently unconscious" is clearly a misnomer. If you can write, it means you can also think, too, in the same way as the rest of us. I just don't see how anybody could possibly call you unconscious, except when you're asleep. I would be inclined to disregard this 'title' as it is inaccurate, insensitive, & from what I see, a complete misuse of words. I wonder what idiot came up with such a term? As you can type with one finger, I don't see any reason why you shouldn't soon be typing with more fingers, and eventually doing all those other things. If it was me, I'd be inclined to see this awful term, as motivation to get well, and get it changed. Really, if you were genuinely 'unconscious' or a 'vegetable', you wouldn't even be able to understand the meaning of these insulting words. I feel quite incensed on your behalf. I'm quite positive, that if you are determined you can get your old abilities back. If you'd like me to write to anybody on your behalf, to get this term changed, please let me know, All the best. Lue X
ReplyDeleteHi Angela,
ReplyDeleteI'm a producer with National Public Radio (NPR) in DC who occasionally reports on science/health stories. I came across your blog and am really interested to learn more about your story. I can get a sense from scanning your blog but I'm having trouble (as a neophyte to this issue) piecing together your full narrative. The link to the Merced Sun Star article in your About Me section doesn't seem to work anymore. Is there a particular post on your blog that gives a good summary of your back story?
I'd love to talk more. If you have a chance, email me at cbenderev@npr.org.
Thanks,
Chris Benderev
A friend happened to have scanned the article in http://thoughtfulveg.blogspot.com/2012/02/angela.html He knew me as placed with "vegetables" n could see that was wrong. I did fit my diagnosis long ago. I no longer do.
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