I'm brain dead, dead, in respiratory failure, or I am semi-vegetative.

I'm brain dead, dead, in respiratory failure, or I am semi-vegetative. It's all the same to me. "Vegetative" is a coma, even if the eyes are open. See why I was called this? "Semi-vegetative" isn't even a proper term. It's made up. 

If I stopped breathing while I was asleep, and then started breathing again when awake, shouldn't I have been tested for sleep apnea? Isn't that what on-going 'Acute Respiratory Failure' is? It was made my diagnosis because it kept happening. I was never tested, though. I've since taught myself to sleep on my side, and I hope that I wake if there is a problem. Hopefully brain-growth has happened and I am now passed it.

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The state may finally realize that I am not brain dead in a coma, but the federal government does not.

Someone from a state contracted nursing agency visited. They saw I am not dead or in a coma. This is the state's program. What is seen is reported.

Let the state take it up with the federal government. (Citizens have to voice concern to their politician.)

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I'm not doing anything. People have to do it.

  

Just because I am conscious does not mean that I am a functional person in society. I have deficits. I don't get up and go. Stop with the "you need to do this" comments.   https://thoughtfulveg.blogspot.com/2019/01/i-have-issues.html

What I accomplish now is through motivational writing- one letter at a time with one finger. What I get done comes from good communication skill, not magic.

"How do you get on here?"

"How do you get on here?" I was asked. "Carefully! " I wrote back."Ha! This has taken me yrs. I do have 1 finger to use now. My head is full of knowledge."

Watch how the boy points at letters. I am doing the same except with a computer keyboard. I don't have any of those behaviors.

I can move my left arm as I want. I worked a long time and have refined my ability to hit and press a key. At first, I took days to write an answer. Now it might be 10 minutes if not too much is needed. 

                                                        

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I said that I didn't have the behaviors in that video. I didn't have any behavior. In the following video, see how the man sits and stares until his father puts music on. I don't require music, but the lack of behavior is the same.  

This movie is based on an Oliver Sacks case.
The man has a brain tumor.

Communicating In a Coma

I'm not as scary as this video clip,

I posted the following in a group:

Before I talked n only moved my head some, I was at Santa Clara Valley Medical Center Rehabilitation. This is in the middle of Silicon Valley. It was 15y ago n Steve Jobs was amazing. I was put on a computer.

A dot of some mylar-type material that was sticky on 1 side was cut out n placed on my forehead. I controlled a cursor. It was only yes/no at this time.

I found a commercial headmouse. It even had the dot, which is put on glasses in the video. It was close to a thousand dollars! After shipping and tax it would be more.

Headmouse

 

I did yes/no games with that headmouse.

 This is not a game I played but it is to 

give you an idea. The equipment has to 

be learned, so games are simple.
I also had a brain injury. You need simple games.

The computer was stopped when I started moving a hand. Hand switches are much cheaper.

To think that I was probably one of these people in a coma that understood, and the US government lost their chance. This is very likely, just look at my diagnosis, Semi-vegetative. "Vegetative" is still a coma, but the eyes are open. You don't add "semi" when a person starts to communicate (speak in my case). That's Minimally Conscious State (MCS).

Helping Brain Science

Comment:  "I wish we knew more about the brain back then." (Back when I had my brain injury less was known than now.)

We still don't know.

The government cut off my feeding tube supplies in Dec 2016 and I didn't get it all back on until Feb 2017. People in the government may have seen YouTube videos and the logic goes, 'you can talk, therefore you can swallow.' I don't swallow (enough for a test). I was tested and didn't pass. I never had speech therapy. A therapist works on swallowing as you go along. They don't usually get this problem. So I taught myself how to speak enough without swallowing.

I didn't realize I was supposed to be swallowing until a year ago. Long ago I did infant intervention as a home teacher. A few kids had problems with their swallows and I remember the OT recommending lollipops. (Only speech does swallowing now for those who remember.) My thought was, 'I'll teach myself to swallow.' If those babies could do it then so could I. So you see me with a lollipop a lot.

There's more to this brain rehab than just swallowing. I'm still in a coma because I don't swallow. B.S.!! I wrote this thing while I was in a coma? https://thoughtfulveg.blogspot.com/2013/04/i-want-ass.html This needs to be looked into.

Going back to when I was first diagnosed as vegetative, I may not have been vegetative, but totally Locked-In with diminished cognitive capacity. This is why a brain-computer interface and communication software is being researched. The process is slow and has not reached the common household. Some of the beginnings of this research has in the form of 'mind controlled toys,' if you want to look for these, they are now available to the public.

The government's classifying me as in a coma prevents any study of me. "Vegetative" is a coma and one can not give consent. This is a major factor in that slow research. A lot of vegetative could probably answer "yes/no" if given the chance vegetative-state-patient-communication. It wouldn't be instant. The brain injured person has to learn the program.

I was lucky because I had movement in my head at the time. I was in Silicon Valley at the hospital I was at. I could hit a switch with my head that was hooked to a computer for "yes/no." Learning was not instant, and took a few speech therapy sessions. This technology was only available at this particular hospital. It has been 15 years now. I'm seeing the technology more wide-spread, but the typical household isn't there yet. The toys have hit faster.
 

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By the way, I found a back door to this not being able to study problem- Open Science. Basically, keep it all public.

I have obviously progressed far enough not only to answer yes/no questions, but I can give entire descriptions.

Does anyone else see a problem with the diagnosis of "vegetative"? How does a  person give yes/no responses if that person is not conscious?

The Fish Who Didn't Climb Trees

"I was in the hospital, unable to speak or move, diagnosed as vegetative, yet I could pay a bill on time and not the payee. (That is not vegetative. Obviously I was communicating with someone to get that task done.)" http://thoughtfulveg.blogspot.com/2015/11/misdirection-is-norm.html

I tell how I communicated.

In the hospital, I assume I was tested with a communication board. I couldn't see one. Since I couldn't see a communication board, I failed the test. The hospital couldn't communicate with me so I was labeled vegetative (PVS). This is unconscious.

A communication board can simply be the alphabet on a piece of paper. It can be mounted on a board.

Adjustments weren't made for special needs. Educators are familiar with this and the general population is becoming more aware. I am low vision. Vision is now better than in the beginning of my recovery, but it is still low.

Imagine a 3x5 card. Only one letter is on it taking up the whole card. My mother didn't use a communication board. She had a stack of cards. My eyes weren't good enough to see the boards, yet. Of course I failed that test.

Flashcards used to teach the alphabet to young children are the same thing. She would hold up one card and I would blink yes or no for it. She would do this for every word. If a word had 5-letters, then she'd be going through that stack of cards five times. That would be 130 eye blinks from me just to get a single word out. As time progressed, my eyes got better. I could see the letters on a communication board. I was able to now use one! (Around this time, physical therapy had been getting my left arm able to propel a wheel chair. I started pointing to letters on the board with that same arm.)

My mother is the only person who would do this style of communication. Later, after I could say a  word, I was at a hospital where I saw a recreation nurse using a communication board to communicate like this with a patient. That hospital unit soon closed. The patient would have been moved to a nursing home and that style of communication wouldn't ever occur again.

I could speak a word by then and went home. It was figured I would die. I didn't.

 

I Write

I am not using facilitated communication. I think all this stuff up myself. There isn't a second person here. I type all of this myself. I use one finger and I must look at the keyboard. I am including a video of facilitated communication. This uses mostly people with autism, but head injury is mentioned at the end. Interestingly, it mentions that the keyboard must be looked at if only one finger is used. I never used facilitated communication. I rehabbed my left arm enough for one finger to press a key on a keyboard. It took many months and many marbles. (OTs, I used marbles as transferring objects in containers.)

I have already written a lot. I maintain two active blogs. You are reading this in the larger blog. Writing as much as I do is considered a compulsive behavior. Compulsiveness is not illegal. The behavior can be.

This person is compulsive about his art. Watch the first 3 minutes. He had a stroke.

(There may be similarities. I'm literary art, though. It would be hard to make those comparisons. I can see similarities with the brain injury, though.)

Strangely enough, the following video brings together visual art, literary art, and brain injury. 

Paralyzed Hand Isn't Paralyzed

I move my "paralyzed" hand consistently. It does sign language (ASL) in the video. I wonder if me doing sign language is related to the bit on Foreign Accent Syndrome. 

Beyond ‘Foreign Accent syndrome,’ ‘Foreign Language syndrome’ https://www.wisconsinmedicalsociety.org/professional/savant-syndrome/whats-new-2015/ 

Beyond ‘Foreign Accent syndrome,’ ‘Foreign Language syndrome’

There have been two instances recently of young men emerging from coma fluently speaking a foreign language.

Ben McMahon had studied Mandarin early in his schooling but never mastered the language. However, in 2014 he emerged from a coma speaking fluent Mandarin as seen in this Mirror online post. Likewise, a British football player awoke from a coma after a serious auto accident speaking fluent French. Again, he had some exposure to French in the past but never spoke it fluently.

Cases of what has been called “foreign accent syndrome” have been reported, wherein people recovered from head injury with a foreign accent, but these cases exceed that with an entirely new fluency in a foreign language. Since these individuals had some exposure to the foreign language in terms of learning, they do not represent genetic memory as such. But the phenomenon of gaining fluency in a foreign language following head injury goes beyond foreign accent syndrome and joins the “acquired savant” category.

—Darold Treffert, MD
 

"But the phenomenon of gaining fluency in a foreign language following head injury goes beyond foreign accent syndrome and joins the “acquired savant” category." I had exposure to sign language prior to any brain injury. I did not use it. I remember it really well.

Before I could say anything, I'd sign letters with my other hand. Nobody knew sign language and it was assumed I was cognitively impaired. There was no sound and movement was seen as reflexive. Don't make assumptions. This isn't reflexive anymore. (I'm using that first hand to poke keys on the computer keyboard.)

You Talking to Me?

Imagine...a patient goes into the ER with her own equipment and her doctor's cell phone number. (The doctor was on vacation, and it was a Sunday also.) I had everything. I just needed skilled labor. It's okay that they didn't know what to do. I did.
 

It was worse when I couldn't talk. The Stooges was the norm. People knew what to do, but they didn't know they were supposed to do it. (Like when I coded but then opened my eyes. "Do you still want to be intubated?" I said "no." First of all, you don't intubate a conscious, talking person. Second, I coded? That was never addressed. Why did I open my eyes? Did these people also need to be told what to do? They were a specialized team.
 

Now I see what was needed...direction. Having the proper tools also helped.

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"Talking to me" was a shock. My speech hasn't been that great. It was once non-existent. I listened to my daughter describe how I used to point out letters on a board (Speech Therapy, that's what this is...pointing out and pressing letters on an electronic communication board.) Before pointing, I'd blink.

I didn't have the behaviors. 

She says she was wired wrong.

I wasn't even wired.

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I speak now, although there are times I am difficult to understand. Loved ones will take the time. Sometimes they will have me repeat it correctly. I was surprised when the GI Specialist called and wanted to speak to me.

I don't talk to people I don't know on the phone. There's a joke with my family that I speak Spanish. A person called once from my daughter's union to give the topic of the up-coming meeting. As soon as I opened my mouth, "Oh, let me go get someone who speaks Spanish." So now I speak. It's just a different language.

If you understand me, remember there were many takes, this was a good day,

and you took the time to listen to me talk slowly.



Me Feisty?

  "Have you always been this feisty?"

 

The word "feisty" stuck-out to me. I had never used it. I'd always say I'm different. I never fit in. 

When I was in high school, and people were getting black trench coats, I went and got a trench coat...but it was blue. I didn't exactly fit in. (My hair didn't fit either. My head was shaved on one side.) That blue trench coat didn't fit in to the wildest fad.

"I fight authority"...authority says I'm unconscious. What would you do?

________________________________

All the ideas and everything I want to say...

"I have so many things in me that you can't even guess them all."

At least I can do this now and get most of it out...

________________________________

I have scientific ideas. Sometimes I write them down...

"A better term [for PVS or sometimes vegetative]  is "unresponsive wakefulness syndrome", Gary Williams. This is a better term than vegetative. It describes what's happening. Someone like me can't come along and stick a picture of a tomato butt with it.

This really got me thinking, "Moreover, if this person is typing full fledged sentences with complex thoughts they have moved beyond the minimally conscious state and into something akin to "locked-in syndrome" or what might just be called severe paralysis," Gary Williams. "Something akin to "locked-in syndrome" or what might just be called severe paralysis" makes sense to me. Years ago,  friends and family thought I had Locked-In Syndrome. I'd go through a process of blinking yes or no for every letter in  the alphabet in order to spell a word. That's how I communicated with my mother and close family. As I gained movement, I'd point to letters on a board. That's the paralysis. All this is now, is that I point to and press a letter on an electric letter board, the computer keyboard.

Thanks to the internet I can get everything I press out, out to the world. I talked about communication and technology a long time ago, http://thoughtfulveg.blogspot.com/2012/03/dualism-mind-and-brain.html  As technology advances, the  mind/brain issue will become clearer.

The vegetative man in Canada who communicates he's not in pain http://scitechdaily.com/canadian-man-in-vegetative-state-communicates-that-hes-not-in-pain/  screams of this "something akin to "locked-in syndrome" or what might just be called severe paralysis." In  my case and this case we're trapped in unresponsive bodies. I have just been lucky in that I got one finger to move faster.  He communicated because of the technology. I communicate because I use technology. (Try this, use a pencil without an eraser and type a sentence. You have to spell all words correctly and make capitol letters. If the computer freezes, you must hit CTRL, ALT, DELETE. It's not easy. The pencil has no eraser and doesn't stay. Also..."how do you hit three keys? Two is bad, but now there's three?") If you can do that, you either used technology, another person, or your fingers. I guess you could have used your tongue, but I'd hate to see your computer.

Am I really fighting authority? Or am I just telling you how it really is? Is this feisty? 

  



updated video 6/26/2018

No Pain

"A Canadian man who was believed to have been in a vegetative state for more than a decade, has been able to tell scientists that he is not in any pain. It's the first time an uncommunicative, severely brain-injured patient has been able to give answers clinically relevant to their care."


This is part of a post I made on a social network. I was like this a long time ago. Interest wasn't taken in me. I could blink for yes and no. Eventually my mother figured out that if she spoke and showed me a letter, I could blink yes or no for the letter and a word could be spelled.

When I came home from the hospital 4 years later, there was a white board that had been written on with the wrong kind of pen I found in a box. It  was like a permanent marker and the word wasn't coming off. It said TYLENOL.

I was in pain...in a hospital. Days went by before my mother got there. She was the only one who would take the time to go through the entire alphabet, a few times, so I could blink yes or no to each letter, eventually spelling a word. Hospital staff tried it once, I failed, and that was it. They didn't do one thing my mother did-present it visually.

This is strange, but he says it here (3:48), "central auditory agnosia..."

So this was going on. 

To top it off, "Savant syndrome, both in the congenital and acquired types, provides compelling evidence of remarkable brain plasticity." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ I've been able to progress (rapidly in the eyes of brain injury) because of this. Now I am able to write this...even if it is with one finger.

There is an important thing to remember with that man. He may not have been in pain at that time he communicated, but what about tomorrow? We don't know.

Failure to Communicate

What we've got here is failure to communicate. Some men you just can't reach, so you get what we had here last week which is the way he wants it. Well, he gets it. And I don't like it any more than you men.

 

That I am still "vegetative" is questioned by science...not the government.

Governments and religions have changed their positions, but it happens far less often. Hopefully my situation changes before  I'm dead.

 

 

Updated 8/5/2015