Saturday, August 27, 2016

To-The-Point


Anne-Marie LaMonde wrote the following about me. I'll try to address some of it.
Permit me to say that to get to know Angela requires a bit of sleuthing (since Angela's thoughts are parsimonious albeit incisive since she only types with one finger).
Angela suffered a massive brain bleed that put her in a coma, followed by "Locked-in syndrome." She has been listed as PVS (Pervasive Vegetative State) or Semi-PVS (since even the bureaucracies are cognizant that they are not communicating with a "vegetable"), she continues her quest to have individuals pay attention to the following:
(1) the pernicious manner that the law chooses to define PVS and the horrific unfolding of a court decision that arose around making that definition a matter of life and death.
See: https://en.wikipedia.org/wiki/Terri_Schiavo_case
(2) the fact that her profession prior to experiencing a brain bleed/stroke gave her knowledge that was significant for her to make a recovery
(3) the "Thoughtful Vegetable" is tongue-in-cheek and informative for those of us who want to understand the brain insofar as plasticity and neuro-regeneration is concerned.
(4) she performed her own rehabilitation because the State wrote her off as a vegetable
(5) she is a savant (a condition that can occur after a brain injury) that only gifted neurologists who know her well have been able to recognize (save for those of us who converse with her often)
From my perspective, Angela is a great source of information. She's funny, smart, blunt, and has a wealth of knowledge you and I could only dream of having...she's someone to pay attention to and I would dearly love to be able to help her directly. But so far...I am just a schlepp who is gaining a lot of insight from her. Thank you Angela <3
Keep fighting!

First the word "parsimonious."
http://www.dictionary.com/browse/parsimonious
I am very short and to-the-point. Anne knows I'm this way in print because I am typing this all out with one finger. My voice isn't always clear and consistent. Dictation is out. I'm left with using this one finger. It gets tired.

Some said I was in Locked-In Syndrome way back when this started. Many now say I had to have been. Sounds like misdiagnosis to me. Funny, what's on paper is the same. Nothing there has changed.

I don't think PVS, or just Vegetative State, is a disorder of consciousness at all. That definition makes everyone working in this field a magician. There will be horrific cases like the one Anne stated above (the Terri Schiavo case). It is a neurobiological disorder. It is remedied when there is rewiring. Wiring may not exist and there are problems. PVS is a problem of biology and solved with science. Make it esoteric, like it is now, and you get witch hunts where innocent people are put to death.

"Tongue-in-cheek" brings the following essay to mind, http://thoughtfulveg.blogspot.com/2011/07/learned-non-use.html
No one would ever think to put that example with that term. (I have since learned there is another person who plays guitar with his feet. Now there are two people.) The things I come up with are off the wall, but pertinent.

Last, Savant Syndrome is not proven. I'm "not conscious" so how can that be? I'm only talking and writing after a brain injury when I shouldn't. It "demonstrates profound and prodigious capacities or abilities far in excess of what would be considered normal." https://en.wikipedia.org/wiki/Savant_syndrome


There are a few other things, but you be the judge. In that last video, where did I learn sign language? I said there were other things.




That looks like American Sign Language and NOT the reflexive hand movements it was said I was doing.

How do I make videos? Where did I learn how? Where did I learn sign language? How do I speak?

Monday, August 22, 2016

My Mission: A Mission Statement+




I search for consciousness. Where do I start? You see I don't have mine.




Long ago I was in a coma. When I opened my eyes. I was out of it. I was out of it for years. My conscious was taken away on paper.





The paper saying my conscious was gone has become as permanent as your Social Security card. It's something permanent given by the government - society-at-large. I am asked what document needs changing. Well it must be a government form. I can only refer you to government.

My mission is to find my consciousness and have it reflected by society.







*Comatose patients do not get therapy. I am in an open-eye coma. I am not conscious. I do not receive therapy.

Thursday, August 18, 2016

I Need A Strong Swallow


I have a feeding tube. You have to feed people in comas some way. I give you the following video not to gross you out, but show you how it can be done. I have the permanent g-tube that goes in the belly. A hole was surgically cut in my stomach. The following video shows the nose. I have only seen the nose used in hospitals. A hole is cut in the stomach for longer use. This diet is short-term.

Yes, I am on a g-tube diet. I have acid reflux, though. I have to use a formula that tastes good. The reflux will sometimes regurgitate formula into my mouth. I use Ensure. It's the same kind you buy at the store.
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What was thought to be permanent in me is turning out not to be permanent at all. I talk now.

Talking has been slow to come. That could be because I do not receive therapy. I only have general knowledge in this area.

This is where it gets sticky, the g-tube is prone to infection. There have been serious, life-threatening infections.

I do have a weak swallow now. The g-tube doctor wants me in speech in order to make my swallow stronger. Then I could regularly take Ensure by mouth. The g-tube wouldn't be needed.

Speech isn't offered to people in comas. Remember at the beginning I said it was thought I'd be permanently incapacitated? "What was thought to be permanent in me is turning out not to be permanent at all." So the coma that was put on paper doesn't really fit anymore.

People take one look at me and say there was misdiagnosis. Well that original diagnosis now impedes me. I can't get speech because I am in a coma on paper. The g-tube doctor can't coordinate with anybody on making my swallow stronger so I can take my food by mouth. In this case, speech becomes medically necessary.

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There was a time when there wasn't a swallow. Now there is.

I credit this device for giving me a weak swallow. I had no swallow. (This thing isn't even patented, yet...but I got one.)


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UPDATE 12/23/2016

When I say I have a weak swallow, I can sort of swallow, but the flap to my airway doesn't close. I swallow food to my lungs. This is why I still have the feeding tube. At first, I was unconscious and had to be fed. Now, there is something there, but is not right. What I have could be worked with through therapy, but Medicare denied that.

Wednesday, August 10, 2016

An Ode to my Telescope




 

I used to have a telescope. It went to storage with my other things. I was hospitalized for years. The storage lapsed. I wasn't expected to ever get out of the hospital alive. I did, but all those things are gone. I miss the telescope. Now I can't look at the stars.
 



I lost everything while there. Pictures were hard to lose. I had been saving some from childhood. They were gone. They were all gone.

I had a really good photo album. Remember when scrapbooking started? I did that. It's a very intricate way of mounting photographs. Each page of the photo album becomes a work of art. I give an example.

Scrapbook Example


Luckily, I could still get my children. A year after my hospitalization, they went to a sister. My boyfriend left the state. He had a new girlfriend. My girls were still available, though. They grew up with my sister. Years would go by.

I kept in regular contact. I followed every guideline... including I got better. The federal government said I was unconscious. Explain that to the worker. He gave me custody.

Medical science can explain why I got better. The law doesn't care how, just that I did. 

(The court cases were Superior Court of California, County of Sierra, case number 1966. They may be cited. I am disabled, total care, but living independently. The children were older and did not require personal care. Winning custody cases of a disabled parent are hard to find.)

The children have successful outcomes.