I Can't See Your Mouth

The NPR story on masks helped me put it together. I have been lip-reading all this time- even now. I know that sounds absurd and I need to explain.

The mask covers the mouth. You can't see lip movement and facial expression.  I must be using facial cues to communicate. The world is in the middle of a pandemic and every one  is covering their face!

This photo is from NPR.

There is a cut-out and clear plastic is inserted.

Where did I come up with the idea that I was lip-reading..... 

https://youtu.be/nPq3Qtjwsi8

Dr. Nicholas Schiff describes a patient and a 

problem with determining consciousness.

I was looking for videos on Persistent Vegetative State (PVS) vs. Minimally Conscious State (MCS). I found a video of a doctor describing his patient. She wasn't altered consciousness, but she had Central Auditory Agnosia and she was using lip reading. I filed this away because I knew I was conscious.

You can see the importance of being able to see the mouth. Not all people need this.

I Should Be Non-Vegetative

'Non-vegetative' is not an accepted diagnosis, like 'semi-vegetative', my current diagnosis. Use it Centers for Medicare and Medicaid. You are on a roll. -Angela 

A brain injury must get rid of your star.

From social media: "It's going on 17 years since my stroke. I'm still waiting to be rescued. What you see now I have done on my own. This is typed with one finger."

Shocking evidence shows people in vegetative states may be conscious

I'm vegetative. I thought that typing out my answers would change my diagnosis. I thought wrong. The reason for my diagnosis only changed. First, I was vegetative because I did not talk or make any physical response to people I did not know. 

When I started vocalizing, the doctor "did not understand me." I decided to rehab my hand so I could type it out. I knew how to rehab a hand enough to use it. I was an infant specialist years ago. I could at least rehab to a baby. 
 

When I started vocalizing, my diagnosis was changed to "semi-vegetative." The word 'vegetative' was kept. Whether it was for legality or discrimination, this was wrong. The error made in misdiagnosis was being seen. Instead of fixing the error, it is carried forward and the word "semi" was added. At this time, it should have been changed to "MCS, or Minimally Conscious State."

I'm able to now write full papers and make videos. A new diagnosis is in order.

No, now I'm vegetative because I can't swallow. I did not swallow barium during a swallow study. This usually is a 3-party test, in my experience. There are the x-ray technician, someone to administer food + barium (usually a speech therapist), and the test subject. The administer was lacking from the government when they ordered testing for diagnosis. A doctor wouldn't have missed this. They know what is involved with the x-ray. The hospital therapist stepped in during my x-ray. I did not swallow barium in applesauce.

Since the word 'vegetative' is being kept, I propose that my diagnosis is now made 'non-vegetative.' this should mean that I am conscious. I was conscious before, yet the word 'vegetative' meant I wasn't.
  

As far as disability, use the term 'brain injury.' "Quadriplegia" is not sticking. I'm using my left hand to type. There is no such thing as tri-plegia. 

I'm not using magic and a special changing machine. It is called time and growth, and the little knowledge I had of rehab.  (Well, maybe a lot of knowledge.)

Brain Injury Rehab 
in this case

People in comas like PB&J

I've been told I am in coma. I'm being serious. I'm diagnosed as being vegetative. Vegetative is not conscious. When I came out of a coma, I was still out of it. I was made vegetative. So my eyes are open but I don't know what's going on. I've been in a coma all these years and have never gotten better.

Swallowing is a criteria looked at. The test for this is a barium swallow. For me when I last had this test, some barium was mixed into applesauce. I did not swallow applesauce. If a barium lollipop existed the outcome might be different. (No one try to develop one. That just sounds gross.) After my test, I was approved for lollipops. That's improvement!

This is the stupidest thing I ever heard of, I am unconscious because I don't swallow. What's even more stupid are the countless times people have disagreed with me and have tried to show me my mental incompetence.

I'm going to go with it. I am vegetative and in a coma.

______________________

 My order from Lollies By Leah.

Peanut Butter & Jelly is in the middle.

Dear govt,

I like the Peanut Butter and Jelly lollipops from Lollies By Leah. Maybe all persons in coma should be given Peanut Butter and Jelly.

View this post on Instagram

A post shared by Ashley Moyer (@psnivy88) on Mar 4, 2019 at 1:08pm PST

Peanut Butter is on one side. 

Jelly is on the other side.
Video by Ashley Moyer.

_______________________

This is ludicrous! Do they even know what a coma is?

Why is it that vegetative was made an open-eye coma? The state must have some inkling of consciousness. It would be tiny; less than MCS, Minimally Conscious State. It's just a seed and my seed is growing faster. In another few years it will look even more stupid that I am still in coma.

It's sad, so sad (so sad)
It's a sad, sad situation
And it's getting more and more absurd

Gaps In Time

I opened my eyes after a coma, but I didn't talk or move. Almost 16 years later I write this. That's a big gap. When did I wake? Fortunately, or unfortunately, because of the government I haven't woken up yet.

Now you need to know what happened just prior to my long (eyes-open) coma. I had been in a deep asleep (eyes-closed) coma for over a month. Initially my GCS was 3. This is the Glasgow Coma Score and the lowest you can get while still being alive. I was still hemorrhaging when I got to the trauma center. They only stopped the bleeding. I was not expected to live.

The trauma center is the third hospital I was taken to on my eventful day. I first went to my town clinic. It is not a hospital, but it was the closest medical facility. I stopped breathing there. They intubated me and put me on an ambulance to the hospital. This took a couple hours just to drive to. That second hospital immediately put me on a helicopter to a trauma center. I was not breathing on my own. I was intubated and on a respirator for the entire ambulance ride. It was amazing that I wasn't dead yet. The trauma center was the third hospital. They did the initial surgery to stop the hemorrhaging. They only stabilized me. No brain repair was done here. That is not their job.

I moved again to another hospital for opening my eyes. This was the rehab. It is attached to a large hospital. Very few rehab centers are like that.

After opening my eyes, technically just one eye, I was made PVS. This stands for Persistent Vegetative State. No one had ever recovered from this state, but it was thought to be possible. Those who have previously recovered from a coma but became unresponsive were most likely made MCS, or Minimally Conscious State. Their responsiveness was very minor and barely picked up.

I moved a few times in my long stay. My placement was actually changed while I was having surgery at an unrelated hospital!

My diagnosis was changed to "Semi-Vegetative" two years after my bleed when I had surgery. I had brain surgery at Stanford University and Hospital. They even argued I was not vegetative. (I most likely was not vegetative and should have been changed to MCS.)

"Semi-Vegetative" has felt more like MCS. The term "Semi-Vegetative" is not in the usual diagnosing manual. I had to ask a friend what it was.

 _______________________________

I had been experiencing gaps in time.

Click

I'm glad I wrote this down. It's a note on Facebook. I used to have gaps of missing time. People around me didn't. Staring off into space for longer than a moment gets noticed.

In the hospital, the first after opening my eyes, I would stare for days, weeks even. When I went to a nursing home, (Yes I moved again.) staring was for a few hours. I remember that they took me to a hospital for an evaluation for seizures.  It was determined that I wasn't having any.

Staring off into space became less and less and I moved a few more times. This is when I had that surgery- AVM removal and neural repair. The surgeon explained that effects wouldn't be noticed immediately.

Staring must have appeared as daydreaming by the time I came home. Like the neurosurgeon said, effects wouldn't be noticed immediately.

_____________________________

 The man speaking (the younger man) was initially staring. Under advice from a Music Therapist
his father put music on. The man starts speaking.
You see the father wipe away a tear.

I received Music Therapy at the last hospital I was at during my long stay. It wasn't offered at any of the other places I went. The effects have never been investigated. That movie clip is based on a story the late neurologist, Oliver Sack's wrote. This man had a brain tumor. The effects can be close to the AVM I had in my head. There is a very possible link here.
 

     I am with the Music Therapist.

It is this Music Therapist who encouraged me to write my first e-mail. This in turn led to the writing that you see today.

___________________________________

My getting better is just another gap in time. The time from surgery to now when I write this was never tracked. Ask, "What happened Stanford?" because the surgery was them. Tracking was the government's job. (Here's another gap. You Only Had One Job) Everyone washed their hands from it. I'm the only one who tracks with these notes, and I am brain injured. (Shame on somebody.)

Touchy Subject

My diagnosis is Semi-Vegetative. It's never heard of n I write.   -Angela
 

People are still up in arms about the Teri Schiavo case. So I'll go one back. Who remembers Karen Ann Quinlan?

I was a  little kid, but I remember the warning. Don't do drugs, or end up like that Quinlan girl!

This video talks about guardianship. Guardianship is where a big mess up occurred with me. Keep that in mind. I will come back to it as the issue now has the potential to surface.

After I opened my eyes, I didn't speak or move. I looked like how Teri Schiavo was. I was made Persistent Vegetative State. This is just an extension of the coma.

So I progressed from a closed-eye coma to an open-eye coma to whatever I am now. Is now a coma that talks?

It seems to be political. The word "vegetative" has to be kept. That word is basically a coma.

I went to a rehab after I opened my eyes using my work insurance. I think they wanted to say I had Locked-In Syndrome. I was not Vegetative. I had to leave when my insurance ran out.

Before vocalizing, I too communicated with one eye. 

"The last time I saw Margaret Worthen was in November 2012. She was in New York participating in a study of patients with severe brain injury. As soon as I walked into her room, I knew something had changed. She was still immobile, but she noticed my presence, was more attentive and engaged. And there was something else: She at times was able to use her left eye to answer simple yes or no questions. That morning, she seemed to relish her new found fluency. She responded with verve, as if the determined downward swoop of her eye could signal an exclamation point." https://www.nytimes.com/2017/08/24/opinion/minimally-conscious-brain-civil-rights.html?smid=tw-share

This woman was reclassified from PVS, Persistent Vegetative State, to MCS, Minimally Conscious State. 

What happened in that woman's case never happened in mine. I can go straight from Vegetative to Conscious. I don't appear to be vegetative anything now, unless you use the government's reason of being unable to swallow.

___________________________

Now we go back to guardianship. When I was in a closed-eye coma, a payee was appointed. They were eventually dismissed, but my diagnosis wasn't changed. I was still a vegetable. I was made a vegetable that was able to handle money. (This just screams Locked-In Syndrome.)

I left hospital life. That was Dec 2002 - March 2006, but it's just easier to say 4 years. I know it is 3 years and 4 months. I was moved around so much that I'd have to give an itinerary.

I've gone on to start writing. That sounds uneventful and it should. I have a big problem now. I'm not a legal entity. That's why I can't be studied... I can't give consent while in a coma. There is no guardian.

What do I do if my story is picked up? Decline because I can't give consent is not an option here. Watch me think of something.

You Only Had One Job

All the government had to do was observation and documentation. Instead, they have tried to cover-up that anything ever happened.

The government is in control. It will control what it can. It's in a completely different mode of thinking. It doesn't think in terms of research. No, it's categorize and file away. That leaves school and church to give answers. Science in schools is diminishing and religion is less and less.

So the "gap" in my case was 15 years ago. You have to watch the video to see what a gap is. A gap is something inexplicable by science. It's easy to say God is the reason.

15 years ago it was easy to say that I was alive because of God.

I'm still alive.

15 years ago, the reason why I'd immediately would die was removed. This allowed my brain the chance to be in a healthy, safe environment. It wasn't going to be hit with another bleed.

________________________

Now we get into theory. I believe 2 principles are going on. First, all damage was wiped out. Second, the speed at which this "recovery" occurred and that I can write about it.

The first is a biological theory. I've seen video of Aubrey de Grey discussing it, in the area of Longevity, or aging.

Basically, age is damage that accumulates. If you want to erase age, then erase all the damage.

This particular type of stroke would have done that - erase everything. Go back and look at the medical records. I was dying. I was placed on artificial breathing, a ventilator. At one point, my heart even stopped.

I've seen evidence of this theory in my youthful appearance. I don't know how long this will last, but I have documented this.

As for dying any time in the near future, it looks doubtful.

If everything was wiped out, how am I still alive and able to communicate? That's where the second theory/disorder comes in.

This second condition is recognized by the media, but it is not a listed condition in a manual of disorders. To say someone has it would just be saying, despite any evidence.

I have evidence, though.

I'm either savant or very smart. The savant has incredible neuroplasticity. "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 continually have made progress. I have never "plateaued" as the therapists say, or my condition never reached no improvement.

http://thoughtfulveg.blogspot.com/2013/07/what-i-have-learned.html

At first I thought I must be hyper-plastic, or overly neuroplastic.

I have been "reprogramming" cells at an alarming rate. I can only say reprogramming as that is a guess. It has been too much time for recovery of old behaviors. I do have old memories, though. That would coincide with reprogramming from old blueprints. 

I say an "alarming rate", but it appears slow. There have been only a couple of cases where speech returned late after a brain injury. (These people were MCS, not the more disabled PVS.) On average, 20 years can be expected. How long does the typical child stay with it's parents? Countries vary, but the US education system uses 18-22 years as it's age of exit. I started writing in half the time. It sounds and feels long because we are now using years.

I'm extremely smart. That has always been the case. You get this, me communicating through literature. There is evidence. All documentation, or what little, comes from the brain injured person of interest, not who was intended. Research is poorly done.

Instead of drawing pictures, I am writing stories. No one has attempted to explain that.

_________________________

April 3, 2019

Proof I Talk

This is evidence of a talking vegetable. Something still doesn't  doesn't appear right with the look, but the sound is dead on. I definitely don't sound vegetative.

The look reminds me of a blind person. The look is dreamy. Blind persons don't focus on the speaker. I am low vision and I do treat vision as secondary. This may affect my look. https://thoughtfulveg.blogspot.com/2014/11/supersonic-hearing.html

Stop Calling It A Coma!

She wasn't in a coma for 20 years. She was MCS, Minimally Conscious State. Since when is MCS a coma?

Here is the longer video,

In this title, the woman was asleep for 20 years.

__________________________________

Look at the condition of her body. That is due to not receiving intervention for 20 years. There are things that can be done to prevent that leg from hiking up, or her head being bent to the side which seems to lead the whole body into being lopsided.

When you look into my background, you find out I worked in Early Intervention. I had settled in the "Early" part because I wanted to work with babies, but I had to learn development of the whole lifespan.

There are things that could have been done with this person's body before it had deformed. Proper positioning and simple range of motion could have kept everything symmetrical and moving.

__________________________________

 I say not to refer to this as coma. I am in this "coma." Since I am writing and my IQ is so high, I am making this look ridiculous. I'm not in a coma. I meet the same conditions as her, though.

Just so you know, this featured woman passed away, but the treatment she received is typical for MCS.

What I think is going on: The wire doesn't exist for rewiring. This lengthy process, sometimes 20 years, is the body growing a new wire. It's making a new neuropathway.   -NEUROGENESIS

Go to me, as I am documenting this as best I can without the biological information. You see I have slow progress in photos and writing samples. That is growth!

__________________________________

MCS is where it can mostly be seen. This is the "Minimally Conscious State" and consciousness is slowly emerging. Consciousness is strong enough to be seen by others, but the individual is not yet 100%.

It happens with PVS, but this probably is the pseudo-coma. The person appears to be in a coma, but really there are thoughts racing in the mind. The body shows no outward reaction.

You get to my diagnosis and everything gets messed up. My diagnosis is "semi-vegetative." I was trained to say that in the hospital. That term does not exist as a diagnosis when I look it up. I originally was PVS. I was probably really in that pseudo-coma. Instead of being made MCS, the V for Vegetative was kept and "Semi" was added. My consciousness was emerging.

It was thought I'd die and I was released home. That's the shocker. I didn't die at home. The surgery I had at Stanford took away my pending factor of death. I and my local doctors possessed the necessary skill and knowledge to keep me alive. Hospital super-bugs were more likely to kill me. 

I looked just like the woman in the video when I left that hospital. Like she soon did, I also was expected to die. Instead my consciousness continued emerging.

__________________________________

It gets difficult for me to predict what will be next now. All along I have stated there must be a secondary undiagnosed condition that allows me to write.

I now see this condition taking over.

This has been a chameleon...

it changes when you thought it was done.

Pride Made the Error

I was made semi-vegetative after surgery at Stanford. Developmentally, I was taking-off. Instead the diagnosis I had said I was dying, Persistent Vegetative State.

It looked like Stanford reversed the downward spiral and saved my life. This wasn't admitted. Instead of changing me to minimally conscious, MCS, I was made "semi-vegetative," a term that doesn't exist in diagnostic manuals. The government program had too much pride to admit Stanford's success.

Smiling: the first gesture in that description I give in http://thoughtfulveg.blogspot.com/2013/02/get-rid-of-word-semi-vegetative.html is apparent in the photograph taken at that hospital. (Ignore the dead body behind me. It took this place, the government program, a while to remove dead patients. I think this one was three days.) I exhibited all those qualities listed in the description.
 

The government had too much pride to bend over and admit to a small university that the university had the skill they didn't.

This essay could infuriate the government. I'd like that. They then would have to admit this essay exists. As now, I'm vegetative and can't write. Again, it will be pride.

The head of the government can be made into a Macy's Thanksgiving Day Parade Balloon. The government could easily provide hot air. It would win awards.

 (Is that Scooby Doo's body? 

*snicker, tee-hee)

It was a different president in 2004, but same idea.