I'll Say Congenital

Most know that I had a devastating  stroke, but I now write.  I can do other typical, and not so typical, things after the stroke. The things are amazing. What I am about to write is amazing. A person might say Savant Syndrome is involved. That disorder was never confirmed in diagnostic manuals.

My current diagnosis is "Semi-Vegetative." Vegetative is basically a coma, but the eyes are open. In my case, "Semi" was added when I started saying words. So, I am writing to you while I am in a coma.


Writing while being in a coma is amazing! Someone goofed long ago. I say long ago because the disorder Savant Syndrome was proposed long ago. It wasn't approved. A person with a disability could do something way beyond skill level. Now medicine is better. Something as menial as writing is astonishing when performed by someone "saved."

I once was in a full coma. That was years  ago. I was slow to open my eyes. That warranted the word 'vegetative.' Speaking, as I do now, does not.

I, and others, have disagreed with the government's diagnosis. I am in a pseudo-coma by their standards (which is currently not swallowing barium). Locked-In Syndrome is the appropriate name. My speech continues to be about simpler things, and writing contains more complicated ideas. I have noticed some change on video, so this is coming.

Writing occurs after a stroke, which can lead one to believe Savant Syndrome, Acquired.

You can acquire Savant Syndrome from a brain injury or CNS incident. I had a stroke and a car accident. This is the acquired form. There is another form. Some are born with Savant Syndrome. In this case the disorder is congenital.

I had my mother describe to me my early development. "...you had a foot that was more dominant and one foot that turned and dragged. You had to have a special shoe." It goes on. "Also your eyes didn't focus well and one eye drifted. You also used to bang your head on the wall purposely," Myra Metz.

That's a special needs child being described. There was a previous brain bleed. I hold a degree in Early Childhood Special Education. I ran a home-visiting program just for this type of baby. Identifying the special needs child is second nature.

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Growing up, I'd hear the horror stories of my birth.

My mother died during labor and had an out of body experience. Forceps had to be used to pull me out. If you never heard of these things, they were these giant salad tong things invented to grab and pull a baby out of the birth canal. These things aren't widely used anymore. There were too many complications. My mother now suspects these things in creating the AVM anomaly in my head that bled 32 years later.

"You were born much too early." I am almost 50 and still hearing about it. "You were induced."

Then it clicked. That description of my early childhood was of a baby that had a CNS incident. I was induced, most likely due to fetal distress. Doctors didn't tell patients crap back then. Of course it was a horror story. 

If those forceps had caused the AVM in my head, there also would have been gore and I wouldn't be here to hear the story. Forceps would have had to squash my head nearly flat to create an AVM that deep. Sorry Mom, but the AVM was already there. They are congenital. It would also be the cause of your pain. Bleeding caused fetal distress and set off your whole cataclysm of events.

Everything resolved nicely. I went on to play piano, and then excelled academically. Now I had a stroke and am writing in a coma. This last sentence doesn't sound right. Maybe Savant Syndrome should have been made a disorder.

I Still Haven't Woken Up

When I opened my eyes 5wks after my bleed I was made vegetative. This is still a coma, but open eyes. I never woke up. 

-Angela 10/11/2019

Pseudo-coma/Locked-In Syndrome definition.

Can be clicked.

It's a rare disease.

 

I haven't returned to work yet because I'm still in a coma. I will explain. The government plays up death, mine anyway, so hence my diagnosis is semi-vegetative. "Vegetative" is close to death. "Semi" was added when I didn't immediately die and started recovering abilities. You now get this from someone who is semi-vegetative. I doubt a vegetative patient can do this.

"Work" was a Behavior Specialist for a county mental health. Before that I ran an early intervention program for kids under 5 who were at risk of having a disability. Yes, I was in charge. It served 5 counties and took care of a big piece of northern California. When I went to Mental Health up in the mountains, I ended up as that particular county's vice president of First 5. (http://first5sierra.org/sierra-county-children-and-families-commission/ My county was Sierra.)

 

I already had a background rich in dealing with trauma. Disability is no stranger to me. You can see that my current network was full of professionals. These people were my friends. I got the best and brightest info as advice.

Now, how am I still in a coma?

I had an AVM in my head that bled (AVM stroke) in 2002.  I ended up in a closed eye coma for 5 weeks. This is the coma I never woke from. I never woke up! In 2003 I started opening my eyes. The government made me Vegetative- I was just in an open-eye coma. (How do you wake up if your eyes are already open? I just didn't speak.)

I did something at that time that is unheard of. I COBRA'd my work insurance and used my Social Security to make the COBRA payments. Do what you have to do and I did. I skipped all bills and used the private insurance to go to rehab. I was almost dead. The dead don't pay bills. 

Some called the thing in my head a brain tumor, but there wasn't any tissue. It was a blood vessel. Usually these things burst when they bleed, but mine hadn't. I still had a thing in my head that could kill me...like a tumor.

I did a second surgery at Stanford. It was experimental. The government never recognized this. That should have been when I "woke up." I think it's funny. If you ask the government what happened to my AVM, what will they say? Stanford removed it.

So "do what you gotta do." I've had a big loss, if you say me dying was the biggest. (My heart stopped in the beginning.) I just keep plodding forward. I keep telling myself to think about it later. We know those thoughts are the downfall. Dwelling on the past leads to depression.

I think this coma business is stupid. I was in a closed-eye coma 16 years ago and opened my eyes the following year. Look up pseudo-coma. It's more likely that was what followed the closed-eye coma. I went from coma to pseudo-coma. (I would think that these are  the people that understand in coma.) Only a few have come out of pseudo-coma. (Pseudo-coma is also known as Locked-In Syndrome.)

Idiocy

It now approaches idiocy to continue saying that I am vegetative, or not conscious. Now that I get ideas across, it is extremely difficult to say that I am not conscious. What is vegetative in me then? Nothing. The quality of being "Vegetative" exists in your perception of me. As time goes on, I adapt and technology improves. Your perception of me changes.

In this next video, if you take away the man's computer, what do you have?

Oh my!

When I left the hospital I was not typing. I did not have the hand dexterity to hit a selected computer key. Computers existed and so did trackball mice for computers, so there's no excuse for the technology not being there. A mouse can select characters, and I had enough movement for a mouse.

A trackball mouse works opposite of the standard computer mouse. The mouse is stationary, and the hand or thumb moves a trackball. The ball controls the cursor on the screen of the computer.

I plan to order this for my right hand.

The person who knows this technology is lacking in most places. Traditionally, this role has been filled by the Occupational Therapist (OT). I don't think the OT at that last hospital I was at knew much about computers.

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I think it's funny that I got, read, and responded to an e-mail explaining to me that I am in a coma, http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html

http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html

This will happen in a pseudo-coma. Yes, pseudo as in fake. People, doctors, were fooled. I came back to tell them.

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Pseudo-coma is also called Locked-In Syndrome. That diagnosis was ignored at the beginning, and now there are problems. I have limited speaking which continues to slowly improve and I write a lot.

First, the writing, speaking, and increasing limited movement I am showing are all products of me coming out of Locked-In Syndrome. Second, I write. This appears to be Savant Syndrome, but it is not yet established as a diagnosing disorder.

This secondary condition is harder to prove, for the condition. At times it appears paranormal. The behaviors can't be explained, but they shouldn't be ignored. It will be hard to say that this writing doesn't exist. This condition needs to be made a diagnosing disorder. Then it can be studied. Even I am overwhelmed into believing I have paranormal powers. People unrelated to the situation need to look at it.

This is from the movie Michael. 

The actor is hiding angel wings under his coat.

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.

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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.

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 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!

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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.

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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.