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Paralyzed, misdiagnosed Comatose, for 23 years

Medicine Misdiagnosis 2009

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#1 sierraleone

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Posted 02 December 2009 - 07:27 PM

Talk about a nightmare... its one thing to have your life pass you by and not be aware of it until you come out of a coma (which is bad enough), but another to watch it pass by in a crawl, from a hospital bed, for 23 years!

http://www.ctv.ca/se...ub=TopStoriesV2
Rules for surviving an Autocracy:

Rule#1: Believe the Autocrat.
Rule#2: Do not be taken in by small signs of normality.
Rule#3: Institutions will not save you.
Rule#4: Be outraged.
Rule#5: Don't make compromises.
Rule#6: Remember the future.
- Masha Gessen
Source: http://www2.nybooks....r-survival.html

#2 SparkyCola

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Posted 02 December 2009 - 08:30 PM

How on earth does a person not go out of their mind in a situation like that? :eh:

23 years effectively in isolation, you can't even move. I can't even imagine that.

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Able to entertain a thought without taking it home to meet the parents

#3 Rhea

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Posted 02 December 2009 - 09:43 PM

Apparently "locked in" syndrome has only recently become understood. I'm glad people with this problem are being helped - I can't imagine what it would be like to be trapped in your own body, unable to communicate, especially for as many years as he was.

I was a little taken aback by the pictures of "facilitated communication," where a "facilitator" holds the hand of the impaired person while they type. I've seen it used in children with autism, and it's not always clear whether it's truly the patient's communication or the facilitator is making choices that don't represent communication from the patient but rather what they infer or hope the patient is saying.

I was glad to see that he can communicate in other ways because it makes the facilitated communication more valid.

Edited by Rhea, 03 December 2009 - 09:03 PM.

The future is better than the past. Despite the crepehangers, romanticists, and anti-intellectuals, the world steadily grows better because the human mind, applying itself to environment, makes it better. With hands...with tools...with horse sense and science and engineering.
- Robert A. Heinlein

When I don’t understand, I have an unbearable itch to know why. - RAH


Everything is theoretically impossible, until it is done. One could write a history of science in reverse by assembling the solemn pronouncements of highest authority about what could not be done and could never happen.  - RAH

#4 Zoxesyr

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Posted 02 December 2009 - 09:46 PM

This is a complete FRAUD.  The "helper" is using a totally discredited system called "Facilitated Communication"  

http://en.wikipedia....d_communication

This particularly nasty form of delusion sent a number of people to prison on false child abuse charges.

Of course the right-wingnuts latched on to both stories and refused to accept the truth went scientific and medical evidence was against them.
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#5 Cybersnark

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Posted 03 December 2009 - 09:54 AM

View PostRhea, on Dec 2 2009, 09:43 PM, said:

I was glad to see that he can communicate in other ways because it makes the facilitated communication more valid.

Quote

Dr. Laureys said he discovered some degree of consciousness in Houben after putting him through a PET brain scan and other tests.

Members of Laureys' team have explained that one of the tests they use measures auditory perception by making the patient listen to a neutral sound, like a repeated "beep" and then saying their name.

If the brain reacts differently when the person's name is spoken, doctors can determine if there is some level of consciousness.

Laurey's team noticed from Houben's tests some brain activity, so they began attempting to communicate with him. They were finally able to break through when they realized Houben was answering yes or no questions by moving his foot.

But yeah, this is a nightmare no matter how you cut it.
"Hilarity ensues." --Seamus Harper

#6 gsmonks

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Posted 03 December 2009 - 11:10 AM

Oh-h-h-h-h-h-h . . . I thought this was a story about Ronald Regan.
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#7 sierraleone

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Posted 03 December 2009 - 05:06 PM

View PostRhea, on Dec 2 2009, 09:43 PM, said:

Apparently "locked in" syndrome has only recently become understood. I'm glad people with this problem are being helped - I can't imagine what it would be like to be trapped in your own body, unable to communicate, especially for as many years as he was.

I was a little taken aback by the pictures of "facilitated communication," where a "facilitator" holds the hand of the impaired person while they type. I've seen it used in children with autism, and it's not always clear whether it's truly the patient's communication or the facilator is making choices that don't represent communication from the patient but rather what they infer or hope the patient is saying.

I was glad to see that he can communicate in other ways because it makes the facilitated communication more valid.

View PostZoxesyr, on Dec 2 2009, 09:46 PM, said:

This is a complete FRAUD.  The "helper" is using a totally discredited system called "Facilitated Communication"  

http://en.wikipedia....d_communication

This particularly nasty form of delusion sent a number of people to prison on false child abuse charges.

Of course the right-wingnuts latched on to both stories and refused to accept the truth went scientific and medical evidence was against them.

Yeah, I didn't have time to go into it all before, which is why I didn't quote part of the article in my opening post like I usually do....

I was wary of it too. I have heard of this being deployed on autistic people too, and skepticism over it (healthy and understandable in these situations!).

I think there are two broad, overlapping, things to talk about in this case...


That this man was paralyzed for 23 years, and thought comatose, and he now knows people know that he is there....

And about facilitated communication.... so whether he is, or can, communicate with us in his current state.... Even if he has the comfort of being treated as a present person now... if he is not able to communicate with us (as communicate is two way - and I think its unlikely he can, if this facilitated communication is all the 'communication' being done), that still makes for a lonely, frusterating, experience. Sure people talk to him more, but its more like watching tv, I imagine, except when they take him places. And their responses to the facilitating communication possibly may as well be to another person! Granted in a similar situation to him, but that doesn't mean they'd say the same thing.

Edited by sierraleone, 03 December 2009 - 05:10 PM.

Rules for surviving an Autocracy:

Rule#1: Believe the Autocrat.
Rule#2: Do not be taken in by small signs of normality.
Rule#3: Institutions will not save you.
Rule#4: Be outraged.
Rule#5: Don't make compromises.
Rule#6: Remember the future.
- Masha Gessen
Source: http://www2.nybooks....r-survival.html

#8 Rhea

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Posted 03 December 2009 - 09:09 PM

^A form of communication where the person can independently respond is always preferred. Facilitated communication used with autistic children is highly suspect because it's always the parents or a caregiver (someone who's invested in the communication) moving the student's/patient's hand. It seems most often to be the parent or caregiver having the student "say" what they wish the student could say.

However, the Belgian patient has a better form of communication now:

Quote

Following intensive physiotherapy, Houben now communicates with one finger, using a touch screen computer attached to his wheelchair. The keyboard is designed so that it's activated with the slightest movement of his right hand.

That means it absolutely is a two-way street, so he can truly communicate now. Amazing, isn't it?
The future is better than the past. Despite the crepehangers, romanticists, and anti-intellectuals, the world steadily grows better because the human mind, applying itself to environment, makes it better. With hands...with tools...with horse sense and science and engineering.
- Robert A. Heinlein

When I don’t understand, I have an unbearable itch to know why. - RAH


Everything is theoretically impossible, until it is done. One could write a history of science in reverse by assembling the solemn pronouncements of highest authority about what could not be done and could never happen.  - RAH



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