Sunday, October 15, 2017

She'll Tell You (I Can Too)


All of a sudden an autistic girl can tell you what's going on by typing it onto her computer. Umm...that's what this is, only I have brain injury not autism. Instead of all those behaviors I am opposite. I hardly move at all. My face has been expressionless. This last one finally seems to be changing.


Girl with autism types on computer.



Carly, that girl, is in Canada. She is conscious. People can freely ask her questions. The US has deemed me not conscious. This is a political move bad for science. Most are unaware that I am able to answer questions.

______________________________

The government has me listed as unconscious. Although my eyes are open, the vegetative state is also a coma. When I couldn't speak, it was easy to say that I was still vegetative. I really was in an eyes closed coma. I didn't do anything when I opened my eyes. Talking and writing come years later, although I had some vocalizing during the first year post bleed. I am well beyond time limits.

I do speak some. One could still say they don't understand me, so I must be mentally deficient because my bleed was so bad. However, these essays exist. They are very clear. They are very public. It's getting hard to say I am not conscious.

I wonder why it is difficult for the US government to admit that I am conscious now. I know that if they did, they can open themselves to lawsuits, but I thought that new discoveries can exempt this. I keep going back to the thought that maybe something that we don't know about happened in the Schiavo case. I thought the case was very public, but we don't know everything.

 


______________________________

I think I found a back door for science. Everyone thinks I am in a coma. People who know me know that I am not. Yes I am disabled, but I am not in a coma.

I figure I can't go wrong if my situation is in the public eye. Open Science is the way to go. This is science, but everything is public access.


This man is from Elsevier magazine. They do on-line journal publishing. They are very transparent. This previous quote is from Twitter. Papers published by them are on-line. The journal Consciousness and Cognition may be the way to go https://www.elsevier.com/authors/journal-authors/submit-your-paper. [This journal is only suggested. It is not mandatory.]

Data for reports may be extrapolated from my blogs. Well over 300 essays are available to the public. A majority is in The Thoughtful Vegetable. I have a second blog for brain injury, Brain Injury Know How. I'm looking for writing analysis, NOT diagnosis. My current diagnosis is semi-vegetative. I believe this to be incorrect, but I will need viable reports.

I still have to work out details. If you have ideas, please message or email me. This also may not have to be done if a university picks up. Their work already is public.
 
The whole idea here is PUBLIC ACCESS. 

This makes my case accessible to all the other countries interested in my case without me moving there. Lay people may also participate. Private blogs may be self-published and even sent to me. You may get it shared.

______________________________

The girl I started with is older now and doing some interesting things. 
 



__________________________________

10-17-2017 I am obviously misdiagnosed. Instead of focusing on that, just look at the essays. Does the writing style change? Is there progression? I've noticed they are longer. http://thoughtfulveg.blogspot.com/2013/11/my-first-blog.html
(The MySpace blogs do not exist at all anymore. MySpace may have changed ownership, also.)






Sunday, October 8, 2017

I'm Not in a Coma


"(Just because savant syndrome never occurred so low before, doesn't mean it can't now. Medicine has advanced.)" http://thoughtfulveg.blogspot.com/2015/08/is-savant-syndrome-proper.html

...or maybe it was already there. The acquired brought out my congenital. I've said congenital is what kept me alive when I should have died. Think about it...why was my body still alive after being shuffled all day to three different places before "emergency" surgery took place? Also, why did I wake up? Now it's, why am I so smart?
Start answering questions. Don't shuffle me around. Why am I still in a coma?



I think it's pretty stupid to say that I am in a coma. I don't even remotely look like that anymore. Yes, I once was, and yes, you could get away with saying that for a few years. This just shows you how slow the healing process is. No one has kept track of the small neuronal changes that were pointed out years ago. ["Their quantification of white matter reorganization shows long-distance rewiring in posterior medial cortices, possibly reflecting axonal sprouting or neurite outgrowth, maybe even related to neurogenesis (known to occur primarily in associative cortices in normal primates)." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1483158/

I have this written elsewhere and it is much simpler, http://braininjuryknow.blogspot.com/2013/04/getting-there.html
"The nerve fibers from the cells were severed, but the cells themselves remained intact." Nerve cells that have not died can form new connections."
http://thoughtfulveg.blogspot.com/2016/10/disabled-or-idiot.html]

First, I stopped breathing at a clinic. I was intubated and put on a respirator. More than five hours and two hospitals later, emergency brain surgery was done. I should have been dead already.

Closed-eye coma followed. That can be expected. Five weeks later, I open my eyes. Actually, my left eye. I don't respond. I'm given vegetative. That is expected.

What wasn't expected is five months later I was responding to the doctor with blinking. There's no form. The doctor hand-writes a letter. I'm left vegetative, but the payee is removed... so I can pay my own bills on time. I get shuffled to a few more places and actually argue with a nurse that I am conscious.

Hand-written letter as there is no form.

Somehow in this, I retain the wits to have an independent university correct the condition that was supposed to kill me. I also can speak a few words now. None of that is tracked.

A couple years later I go home. I have no clue that the government never took me out of a coma because there was no form. My medical services were extremely limited. A very helpful reporter stepped in and we figured that I never woke from a coma on government paperwork. Basically, that letter was no good back then.

I've contacted The Centers for Medicare and Medicaid Services, CMS, and I'm Still a Vegetable That Handles Money and I let everyone know I still remain in a coma. A few years pass. The local paper does a story, newspaper article scanned into story. I'm still in a coma. Last December (2016) my food was cut off. I guess the government thought I didn't need to eat. I was tested at the hospital and it was seen that I can't swallow. I eventually get food reinstated.

No matter what I do, I am not found to be conscious. Now, it's because I can't swallow.

This was just coming home, "I thought...for a brain injured person to get out of the hospital and live on his or her own, they will need a photographic memory and have excellent math skills. They will have to be a genius!" To be made conscious when already not, I have yet to see that. It may not be possible. This means everyone with a brain injury can't get better. That would take a re-diagnosis, and most people aren't diagnosed again.

Who knows what I am now in, but it is not a coma.

Wednesday, September 27, 2017

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.)


Friday, September 22, 2017

Two Explosions of Talent


I'll fill in some holes.

"Most people did not know that I already exhibited signs of savant syndrome, congenital. I played piano at an early age. My first piano recital was at five years old. I got used to the word 'prodigy' and took advanced placement classes.

I got lost in the school system when I moved, so I left and started college at 16. An AA at 18, a BA at 19, and an MA later at 24
" http://thoughtfulveg.blogspot.com/2017/03/a-case-for-misdiagnosis.html


The first explosion of talent was when I was 5. I played piano. I didn't think it was some great, special thing, but other people did. My grandmother lived near and she was a piano teacher. I kind of shoved all that away when I moved a county away when I was 9. 

People here in this county were using words like "prodigy." No one knew of that where I moved to. I was starting all over again, minus the piano. Sure, I had one to practice on, but the structure of regular practice and lessons were gone.

My studies accelerated. I was in the 4th grade. The teacher had to have noticed because a woman I did not know took me out of class and did testing. She was most likely the school psychologist. I ended up in a reading class in the next grade.

I continued in higher reading classes throughout my schooling years. It wasn't just reading, but also math. Algebra was offered in junior high school, so I could be with my peers. 

I left that school district at the end of my high school sophomore year.

When I came back to this county I dropped out of high school and went to the community college. I taught myself guitar. I still blew my grandmother away by asking for the sheet music for Moonlight Sonata. She said it was too hard for me. I came back playing it.




I went on to regular universities for my BA and MA degrees. My BA transcripts note I had "Honors at Entrance." This might be because of my young age and that I had already completed most required course work. I got the AA when I was 18 and the BA when I was 19.

The MA was a few years later after the BA when I had  started work. I found out about a grant. I ended up getting a monthly stipend while school was in session. In other words, I was paid to attend. Most school fees were covered by the grant. I was responsible for the books. I used those monthly payments for my rent. Basically, my MA was free to me.
________________________________

My second explosion of talent would be now. 

I had a severe bleeding stroke that left me in a coma. I was never to regain consciousness, read, write, or speak.
 
How is it I am able to write these with only one finger? Supposedly most of my brain died in that horrible bleed. What happened? I am smarter than ever.

Researchers can see the development of my talent. I have over 200 of these essays public on this blog alone. One just needs to compare earlier writings. A quality I have noticed is length. Older essays are shorter.

It seems that this is happening all over again. Instead of playing piano, I am writing. All I can say is, "Play it again, Sam."





Tuesday, September 19, 2017

Understand Why

Permanent After 3 Months
https://en.wikipedia.org/wiki/Persistent_vegetative_state 


Look at the dates. The government is a stickler for dates. I am in years and this is months. If you go back to my very first year after injury, the doctor's letter was 6 months after injury. This says 3.


I am not vegetative in this letter.


After 3 months, the condition becomes permanent. This is a political issue and not medical. Even if the UK 6 months is used, a few days are hanging. Use the date on the letter the doctor sent. The UK is closer, though, and this may not have happened.

I've progressed from that first 6 months. I now talk some and write these. Somebody looks foolish.

Saturday, September 16, 2017

What Is Recovered?





This is me and supposedly I am still not recovered. My diagnosis is now semi-vegetative. I disagree with government officials. I am not recovered to them, so your answer would be “no.”
 
I disagree with them. I am obviously communicating with you. That means I have some movement. I do with my left arm. I’m using my left pointer finger to hit each key to type this to you. They say I don't swallow like I used to. This is true. I don't swallow.



I do speak some, but at times can be unintelligible.




I rely on typing things out to be understood.

It becomes what “recovered” means. If it is “back to their old self,” then I am not. If it means “able to communicate and provide some care”, then I am. (I provide care by saying what to do. It’s like talking a plane down when there is no pilot.)


My stroke was in Dec 2002. What is occurring in me may not occur in others.

 ___________________________



"Talking a plane down when there is no pilot" takes a lot of cognition and skill. I already had some of this. The line between Congenital and Acquired Savant Syndromes becomes blurred in my case. It may just be that my brain injury (Acquired Savant Syndrome) is enhancing what I already had- a lesser Congenital Savant Syndrome. I say lesser because most did not know of me, but what I did was amazing for one person.







Now you have this which is EXTREMELY amazing.

Having something amazing is not new to me. "I'm used to the dropped jaw," as I will say.



"Here I go, playing the star again
There I go, turn the page" 



Monday, September 11, 2017

Breaching Human Rights and Impeding Science



Someone had suggested that I get legal advice when he realized my implications. I had already done better. I had become a public figure. I did this so the average person wouldn't have to get a release of information for menial information.

Something I didn't count on is happening. I am given protection. All eyes are on me. If something happens, it will be seen. Everything I do is given to Neuroscience News. It's a news service on top of being scientific. Now the media is involved. Talk about everyone seeing..."everyone" will.

The following is based on a report. "All eyes" can see it.


"It would be a shame if one of those 41% got well enough to file a lawsuit that could bankrupt an already compromised system." http://thoughtfulveg.blogspot.com/2017/09/some-development.html
I still have "semi-vegetative" as my diagnosis. I'm not "vegetative" anything anymore. I keep this diagnosis because I don't swallow. I guess I am a 41%. If you have guessed it, supposedly most of my brain is dead, and I am not supposed to be able to do this.

I was tested in December 2016. I didn't swallow. I had to go through a process of getting my food turned back on. I'm on a g-tube. I am dependent on a medical service to bring me formula. Food had been turned off by the government. I got through this time with donation and a bit of saved formula. No food was sent from the government.

I knew something like this would happen years ago, but I didn't know when. Years ago, I e-mailed the Office of Civil Rights (OCR). Their response was that my issue wasn't in their "jurisdiction", http://thoughtfulveg.blogspot.com/2013/01/regrettably-matters-you-raise-in-your.html
(I could educate them on how Disability Rights are Civil Rights, but I saw this as a waste of time.)

Way back when I was in the hospital, I was found to be vegetative, but able to handle money, http://thoughtfulveg.blogspot.com/2013/02/im-still-vegetablethat-handles-money.html. Say what? That is Locked-In Syndrome. This is AFTER I had been given a Vegetative (PVS) diagnosis. The Centers for Medicare and Medicaid Services, CMS (a government department) removed my payee which gave me control of my financial affairs. (Original e-mails to OCR and CMS are at the ends of those two essays. This was the best place to put them for safe-keeping.)

The doctor at that time (back in 2003) had to write a letter. http://thoughtfulveg.blogspot.com/2012/11/competent.html There is no form. I'm still stuck with that original diagnosis.


I was "fully aware and cognizant" in 2003.

If I was found to be "fully aware and cognizant" in that letter back in 2003, then why is the US government still saying that I am vegetative from an incident in 2002? There was no form.  As of December 2016 I didn't swallow. This becomes grounds for CMS not changing their position.

To say I am vegetative is to say I am not conscious. An unconscious person has no rights.

There is a breach of human rights and medical research is impeded at the same time.

I shouldn't have woken up from a coma. From going back and looking at records, I don't think I should have made it to coma. I probably should have expired when I stopped  breathing. This gives a lot of meaning to artificial respiration.

Now, my incident was in 2002. It is now 2017. It took me 15 years to write this. Isn't that a bit too long?

I'm still not all the way recovered. (This is done with one finger, but there is movement in others.) I continue to make progress. None of this is evaluated and research is prevented. As an unconscious person I cannot give consent. No one has taken me seriously in the US (those in charge, not supporters). To them, my mental capacity is also messed up (but mind you that I'm not in care).        

I have a feeding tube, and it appears that is why I am unconscious. The feeding tube was central in a famous case, Terri Schiavo. The tube itself, may be a source of discrimination. It signifies serious brain damage.


9/13/2017     Medical people please note that I was "asleep" for 5 weeks. I WAS in a coma. There's no mistake there. When I first opened my eyes, I did not blink for communication. That came later. Initially, PVS may have been right.     -Angela