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



Wednesday, September 6, 2017

Some Development




41% are misdiagnosed. Am I one of the 41% ...Or did I recover? 41% is high. "Pull the plug. There's a good chance I'm wrong, but the report says...." 

I was this, but I could do my own doctor care... and I can relate that info to my caregiver. I've walked people through on feeding, giving medicines, changing bandages, etc.

People don't know why I tell them to do something. I do. I know why. I did it today and I'll do it tomorrow. The day I can't do it is the day I go back to the hospital. I shouldn't be out of a hospital.

I was sent home to die. Doctors didn't know I was smarter than that. I did care and am still here.
_____________________________

So this woman, Maggie, is blinking one eye. That stood out to me because I did that. I started vocalizing during this time. I wasn't saying words, but I was making sounds. This was during my first year, but after diagnosis was given. Per recommendation, I made the beginning sound of the word I was spelling.

This was still in my first year. I was at a rehab hospital. They would have me do a lap around the unit floor, down the hallways and past the nurse's station, in order to teach my left arm how to propel a manual wheel chair. Although I was initially unable to move, after a lot of therapy, the staff at the rehab hospital got me able to sit up and move my left arm.

By this time, letters I was blinking "yes/no" for were all on a single sheet. Prior, they were much bigger and on flash cards. With that left arm that I could now move, the speech therapist suggested that I point at the letters I wanted instead of blinking. Also, I should vocalize the letter.

The typing you now read is this. I don't vocalize when I press letters. The page of letters was replaced with the computer keyboard.

"Before I could type on a computer, I worked spelling my name on a toy. I believe it was an apple of some sort. I'd call it the Happy Apple because it would play an annoyingly happy tune. I ended up practicing quite a bit with that toy turned off." http://thoughtfulveg.blogspot.com/2013/06/how-do-you-communicate.html

I could say a word when I left the rehab hospital. I went to a nursing home in Southern California. I ditched the communication board and wouldn't  let my family tell staff about it. Getting rid of aides is a common technique in education. I would be forced to "use my words." (Have you ever heard a teacher tell a student to "use your words"?)

I've used natural conversation with lots of repeating as my therapy. From 2006-at least 2009, I added vocal activities of singing and reading out-loud. http://braininjuryknow.blogspot.com/2016/11/i-get-by-with-humor.html

When I left the hospital, I commonly had laryngitis. When my children first moved in I'd get it. I don't anymore. People with whom I occasionally speak to on the phone, notice improvement the most.

So much has happened over the years. This is generally how it went.
_____________________________

"Even those lucky few who do get rehabilitation and are not shunted off to what is euphemistically called “custodial care” get too little time. Most rehab stays are six weeks or less. [I managed to stay longer.] But if the brain recovers through a slow process similar to development, why do we provide — and only to those lucky enough to receive it — just a few hours of rehabilitation a week for six weeks? It would be akin to sending your third grader to school for half-days of classes for a month or two and telling them that they are now on their own. Now that we know that it takes years for the developing brain to learn and mature, a similar commitment to the recovering injured brain now seems indicated."

There have been many instances where I suggested an education approach. "If we reconceived rehabilitation as education, no one would graduate after a six-week course of care. Instead, we would promote lifelong learning as a means to achieve a recovered life." I came up with a home-program that replaces the 6-week crash course, http://braininjuryknow.blogspot.com/2010/12/rehab-at-home.html .

It's low to no cost. If these persons are just put on follow-along case management, then small issues can be caught before they are large and costly. It would be a shame if one of those 41% got well enough to file a lawsuit that could bankrupt an already compromised system.

I don't want to hurt what little is there. As it is now, I am vegetative and unconscious. Some other way can be found to compensate me.



This is the rehab hospital. You can get an idea 
of "laps", as that is what this patient is doing as
part of the process to relearn walking.
Quite a few placements followed this one.

Friday, September 1, 2017

Should We Treat Vegetative and Minimally Conscious Patients as Persons?


“Should We Treat Vegetative and Minimally Conscious Patients as Persons?”


Just because a person is disabled, doesn't mean he or she doesn't understand you. I understood quite well. It is issues like this that hinder me. It begins with the public view.

41% are misdiagnosed. ( https://www.nytimes.com/2017/08/24/opinion/minimally-conscious-brain-civil-rights.html?smid=tw-share) This may be me. If you are a caregiver to a vegetative patient, that person may not actually be vegetative. They might understand everything you say. If I'm not one of the 41%, then I'm recovered. I should never have been treated differently. Do you kick a man (or woman) when he or she is down?

All people are treated equally, no matter color or disability.,


____________________________________


Some doctors, researchers, rehab people, etc thought it was possible to rehab a person from the Persistent Vegetative State to "Consciousness." Well, I am conscious, despite what records say. It is possible that I progressed from PVS (Persistent Vegetative State), to Locked-In Syndrome (LIS), to whatever I am now. I currently speak some, but rely on typing out my thoughts. Speaking some entails about five sentences, but my voice becomes high pitched and hard to understand. Typing is me using my left index finger. The computer comes with accessibility tools that allow me to make capitals and such.

My current diagnosis is Semi-Vegetative. The diagnosis change happened in 2004 after I started vocalizing. Prior, I was PVS due to a stroke. I had never heard the term "semi-vegetative" before and I thought maybe it was good. It sounded good. My background is psychology. It appears that the "vegetative" was kept and consciousness is emerging.

My issue :  I AM UNCONSCIOUS.

I have been conscious since before I could talk. The diagnosis should be Semi-Communicative. Do I have to validate your existence to be conscious? I like the one I get now from the Centers for Medicare and Medicaid Services. They say I have to pass a Swallow Study Examination. I have a feeding tube. In other words, I have to swallow in order to be conscious.

Being unconscious means I have no rights. This means I am not a person.





Oops, a huge civil rights mistake is made. The potential is there and in my case it happened. If the mistake happens, but the person dies, it becomes a moot point. In my case I didn't die. At the time of my diagnosis change, I should have been made "quadriplegia with dysarthric speech and limited ataxic movement." I believe "quadriplegia" is a hugely accepted category. Dysarthric speech and ataxia have billable ICD codes. This then opens up my case to research. As it stands now, there is no research and I am a miracle.

______________________



I will take some lines from this video. There is a lot of information here.
 
Brain injury was placed with mental health. The injury and some of the problems are very physical. Other things like personality change are not physical in nature, as seen. Lumping all brain injury together has been difficult.

Brain Injury is taken seriously. Some states have developed their own legislation, http://www.ncsl.org/research/health/traumatic-brain-injury-legislation.aspx

"We are included in the definition of the people with disabilities." 2:41
"Because a brain injury may result in a disability, many of the federal policies concerning Americans with disabilities apply. But there are also a number of policies specific to people with brain injury." https://www.brainline.org/topic/policy
Disabilities can be seen and unseen. Even if my seen disabilities disappear, the unseen ones remain. Some people only have unseen. It is very difficult for them.

"We have to do this to you for your own good."  4:39
"The fact that we may need support isn't a reason to take away our right to have a final say in our own lives." 5:03

"No deprivation of liberty, based on disability" 7:49
This is why I could go on outings with my mother. I'd only leave the hospital for a few hours. My mother had to be CPR certified and received additional specific medical training.

"Forced Interventions" 13:07
You have the right to be who you are. This issue is talked about throughout the video. Some may not understand this wanting to remain disabled.
"Doctors have suggested that I try taking anti-seizure medication, and my choice is absolutely not." 5:15
 

_____________________________________


Disability Rights is part of the Civil Rights movement, but has been lagging.