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).

A Psych Classifying Herself?

How would psychologists who study the impact of brain injuries on individual behavior most likely classify themselves?

I don’t and I refuse to. I’ll leave that up to someone else. Which means doctors are screwed. This is why… While I was in coma- closed eye, then open, I was given Persistent Vegetative State. A bit later, I am communicating with the doctor by blinking for "yes/no." They already said I was vegetative and had submitted forms. I was made vegetative, and a payee paid my bills. Communicating with the doctor in this way was Minimally Conscious State (MCS) and I was most likely Locked-In.

I understood what was told to me, but it was difficult to give any response at all, even blinking. I have a BA in psychology. This area was covered. I was familiar with terms. More amazing. I have an MA in Special Education from San Francisco State University. I specialized in neurologically impaired infants.

I knew what a brain bleed was. I knew what lobes of the brain were. I knew that when a bleed as bad as mine kills off all the cells in all four lobes that I shouldn't be understanding. I knew I was dying. I couldn't respond. I figured I'd die soon. 

The payee was late. Doctors didn’t get their money. They screwed themselves. I could blink to family members to pay doctor bills. They managed to drop the payee, so I could pay bills, but I’m left vegetative. I should have been diagnosed Locked-In Syndrome. I am flat-out in a stone-cold coma between the first and second hospitals. You don't diagnose that at that time. The blinking came a bit later at the second hospital. I get stuck with "vegetative".

Years later I’m still "vegetative". I now talk. My diagnosis should be quadriplegia with some movement. I answer tons of questions like this one. I am no where near short of knowledge. My cognition is not compromised.

   
My diagnosis can’t be changed. The diagnosis became permanent after 3 months. Now research can’t be done. You can’t get consent from a not conscious person. People in comas don't get much of anything. They don't ask for anything. Vegetative probably isn't coma, but it is classified that way.
  
I’ve pretty much always disagreed with how a diagnosis becomes a label. This is that MA in Special Education. I see the diagnosis as a starting point and you grow from it. This means it can change. I’m not vegetative anymore.

A Cartoon Reason

The cartoon describes discrimination. So easily putting it here means it's going on.  

People ask why I haven't been reclassified as conscious yet. I have my suspicions but I don't want to feed into any conspiracy theory. There was a very public battle over removing the feeding tube of a woman in a vegetative state. Her tube was removed and she died.

I was originally in a Persistent Vegetative State. A hospital changed my diagnosis to Semi-vegetative as I started making sound and had a few words. I feel this was an error, and it should have been changed to Minimally Conscious State (MCS). This usually doesn't happen. (This has recently happened and those cases may be private pay. I receive Medicare, public insurance.) Once vegetative, a person usually remains vegetative. This isn't to be confused with MCS, Minimally Conscious State. This state can progress to full consciousness. Throughout all of this removing of tube I keep my feeding tube. The state I live in doesn't agree with the action taken by the other state that person lived in.

Traditionally, a person does not go from PVS to MCS. Remember being told that there were a certain amount of brain cells, and if you did something like drink, you would kill them and they would be gone forever? Well, I had a stroke that killed my brain cells and they would be gone forever. Me writing this is a complete mystery.

I'm given the vegetative diagnosis. Like that woman I mentioned at the beginning, I am a candidate for feeding tube removal. I'm purposely not using her name or any articles or videos. Although some years have passed, it is still emotionally charged.

I was either misdiagnosed, or I have returned to full consciousness. Either way, the government has not changed it's diagnosis. I will have been in a coma for 15 years very soon.

_______________________________

I think an old Dr Seuss cartoon explains what happened and is happening. The intent is not to trivialize but to explain simply. Dr Seuss was a trained psychologist. He made up characters and stories to reflect real situations. He might have geared this for a strife in his life. The story is general, and I apply it to brain injury. In the following, stars on the belly represent people who have their whole brain. Characters with no stars had a brain injury.
 

Along comes the machine to make stars- That's rewiring! We don't use a machine. Usually, we rewire through programming and exercise. It takes time.

This is hilarious to me. At the end is a character with stars on his butt. That is me. I think differently.

Now why is it taking so long? It may be because...

They are so slow that I could die first...literally.
(I'm not associating this with any other case or conspiracy theory, but the length of time that has already passed makes me wonder.)

Are You Unconscious?

No. I'm pretending to be dead.

Of course I'm not unconscious! That's ridiculous. If you take what is on paper from long ago, I am unconscious. Paper was never updated.

I am frequently asked if I am unconscious and I wonder about the person asking. You cannot doubt your own consciousness as given by Descartes. Cogito ergo sum or "I think therefore I am." I've always thought, even when I couldn't speak. Thinking was probably for a short amount of time. My consciousness now is comparable to ADD, or Attention Deficit Disorder.

8-7-2014

August 8, 2014 at 9:08am

"Are u  starin' at the car?"

Huh? I have a car calander. She was talking about that. I was in la-la land.

I believe this to be remaining PVS. In the beginning, I was lucid long enough to pay a bill. It became longer lucidity, n moments of "staring" were thought to be seizures. Now "staring " is very shallow. It's less than daydreaming.

Knowing this. What is PVS?

I now will catch myself staring. It must be less for me to catch my own self. 'Lost in thought' we say. It's just annoying now.

So I've always been conscious. It becomes 'how long do I remain conscious.' Isn't that MCS, Minimally Conscious State? Again this comes up. http://thoughtfulveg.blogspot.com/2013/06/its-on-line.html

No Neuro Is No Concern

 

I'm surprised this issue doesn't concern people:  I do not have a neurologist, nor do I receive any neurological care.

I had brain surgery in 2004 to remove my AVM (arteriovenous malformation). This was the cause of my brain injury. My current medical plan was to leave it, treat it with medication, and wait for it to explode and kill me. This plan was not optimal. Stanford University offered something unusual but risky. They would try to shrink and remove the AVM. The procedure was not covered. It fell under research and was taken care of by the university.

I had been diagnosed as being in a Persistent (I think it changed to 'Permanent' at this time) Vegetative State, so I only received necessary daily care and general medical.

The surgery was successful. Instructions to follow-up with a neurologist never happened. The routine follow-up does not happen. I should get annual neurological appointments. I don't.

I was diagnosed as being vegetative way back before the surgery. The state was deemed 'Permanent.' Although my danger of dying was removed, and what I have gone through more closely resembled MCS (Minimally Conscious State), I am permanently vegetative.

The government has gone as far as to e-mail me and explain to me that I am in a coma. http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html
 

I don't get anything but general medicine. I get regular GI appointments because I have a feeding tube. I saw a neurologist once when I got out of the hospital only because I pushed for it. It was not routine.

Vegetative persons don't get much other than nursing home care and basic medical. I don't even get all that now, as I am not in care. I get basic medical.

(Why would a vegetative person not be in care such as family or care home? The diagnosis I have is not right.)

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

Extraordinary...

I do that. Actually, that’s being done to me. I can handle that better than other brain injury patients, though. Simple orientation is all that’s required, not a breakdown of complex theories.

Statistically, this was bound to happen.

"Far too often, patients ... 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/
 

How many people is that? Quite a few.

"Approximately 1 out of 1400 people with mental retardation or CNS deficits other than autism do have savant skills." https://www.wisconsinmedicalsociety.org/professional/savant-syndrome/resources/articles/savant-syndrome-2013-myths-and-realities/

I’d venture to say 1 out of 1400 people diagnosed PVS will end up regaining consciousness enough to be reclassified. I’m just applying the figures. I’m not doing any math, so that's where I get 1400. That’s an observation of that report. Now this is where I'm not too clear...1 of 1400 of those people would have many skills such as I do.

I recovered this far in skill and predict there will be more attained. Keen observation of myself and others and an understanding of developmental processes allow me to make this prediction.

I would be doing extraordinary things, so I'm extraordinary evidence. Now let me make an extraordinary claim...PVS (Persistent Vegetative State) is a form of consciousness. It's just lower than MCS (Minimally Conscious State). Think about it...there's brain dead, PVS, and MCS. PVS is not brain death. It's not conscious enough to be minimal (MCS). It's consciousness right before death. It can get better or it can get worse, just like anything else.
 
 

UPDATE 6/20/2015

New skill of movement can be seen in my other "paralyzed" hand...
 



UPDATE 5/15/2017

Note that a return to consciousness does not mean a cognitive return.

Is This Normal?

Not only am I still sleeping (not conscious), but I am still in a coma. “A "vegetative state” or “persistent vegetative state” (PVS) is the same thing as a coma."
http://blog.positscience.com/2014/01/29/what-does-brain-dead-actually-mean-and-is-it-the-same-as-being-in-a-vegetative-state-or-coma/
 

When I say I'm like Rip van Winkle... I've been asleep for years. Actually I'm listed as having my eyes open, but I'm not conscious. I'm sleep-walking I guess. I left the hospital as "semi-vegetative" so I remain "semi-vegetative." 

  
The local paper did a story, http://www.mercedsunstar.com/2012/02/04/2217293/mike-tharp-they-thought-she-would.html They were probably amazed. I think it's funny that since I'm vegetative, I'm still in a coma. I think that it's funny a vegetative person can live on her own. [The newspaper link doesn't work, but I copied the whole article when I copied an e-mail, http://thoughtfulveg.blogspot.com/2012/02/angela.html.]

A while ago I was referred to a specialist for pneumonia I think. This  doctor got my file and read it before he met me. He probably wondered what I was doing out of the hospital. When my appointment came, all he could do is ask "What happened?" and he stared at me. I'm not the person in the medical reports.

I don't remember what I said to him, but it was probably medical and philosophical. It was probably theoretical, too. I don't know how I do that, but I do. All of it would be with textbook jargon and terms.

Okay, so there's this person who was in a coma. It's obvious she isn't anymore. To top it off she's conversing with doctors and is knowledgeable about some difficult theories and concepts. This is normal? (Normal in the sense of average. I don't need lectures on "normal." I know this isn't normal. Does anyone else?)

Okay, lets say I'm conscious. What does this mean? I guess it means I'm not "semi-vegetative." Did I suddenly become conscious? When did that happen? Does "semi-vegetative" have some component of consciousness? If so, what makes "semi-vegetative" different from Minimally Conscious State? If you are a vegetable are you always a vegetable?  

[Updated 1/16/2015]

It's On A Line

I'm going to pick on this definition, because it is not possibly true since I am the one writing this.The definition I am using comes from  http://www.thefreedictionary.com/persistent+vegetative+state. There are many others, but this uses the word, "irreversible."

   persistent vegetative state

n

(Medicine) Med an irreversible condition, resulting from brain damage, characterized by lack of consciousness, thought, and feeling, although reflex activities (such as breathing) continue Abbreviation PVS

If this was "irreversible", then I wouldn't be writing this. I was thinking the definition of MCS, minimally conscious state could just be tweaked, but you will see this, too, will need major revision.


http://encyclopedia.thefreedictionary.com/minimally+conscious+state 

Minimally conscious state
Classification and external resources
MeSH	D018458

A minimally conscious state (MCS) is a condition distinct from coma or the vegetative state,^[1] in which a patient exhibits deliberate, or cognitively mediated, behavior^[2] often enough, or consistently enough, for clinicians to be able to distinguish it from entirely unconscious, reflexive responses.
Auditory processing can differ between MCS and PVS.^[3] fMRI response to the patient's own name has been suggested as a technique to distinguish between MCS and PVS.^[4]

Prognosis

Patients with severe brain damage may progress through stages of unconsciousness with eyes closed (coma), to unconsciousness with eyes open (vegetative state), to a stage of "inconsistent, erratic responsiveness" (minimally conscious state). ^[5]
It is not known whether patients in MCS can process emotion. MCS is thought to have a more favorable outcome than persistent vegetative state.^[6]
Doctors in the USA recently succeeded in bringing a man who had been under MCS for six years back to consciousness by planting electrodes deep inside his brain. ^[7]



I see PVS as occurring on a linear progression of consciousness. It occurred in me prior to MCS.

   CONSCIOUSNESS

_____________________________________________________________________>>> COMA               PVS                 MCS                    EMERGING CONSCIOUSNESS                              

What I experienced was closer to the diagram in http://www.coma.ulg.ac.be/inform.html. This lists Locked-In Syndrome (LIS) as a separate state. LIS can be separate, but in my case it wasn't. It was intertwined with the PVS and MCS states.

 

BOTH PVS AND MCS WOULD BE ON THIS LINE. They are not separate states of consciousness.