Thursday, January 28, 2016

A Brief History of My Condition

I give a brief synopsis of my history.
Initially I was unconscious. No question there my medical records state it. Well, when I opened my eyes, I was supposedly still unconscious. I was diagnosed as that. I was deemed vegetative (PVS, not MCS). PVS is Persistent Vegetative State and later becomes "Permanent" if recovery doesn't shortly happen. This was me.

I slowly got better. "She's gonna die, anyways," was the thought.  I managed to get out of a hospital setting. I did up my diagnosis to "semi-vegetative." It was still vegetative, though.
Not only did I not die, but you are reading my account.

The local newspaper did a story, The pictures are at the hospital that sent me home. I was not typing at that point. I sent the man next to me in those top photos a message, but that was difficult. You can read I was a vegetable.

I keep telling people I am getting better. Only a few believe me. Someone is impressed with my speech improvement n makes some study videos. A year later I made my own.

A year after that I published an update.

I think it's pretty obvious I am not in a coma- an open eye one. It is explained to me that I am, though, letter. I also think it's obvious I am not vegetative. This vegetable talks and makes videos. Get it straight or be laughed at! I'm just fine. I have no cognitive deficits. My mind is the opposite and dances around you.

Sunday, January 10, 2016

It's Not My Birthday

I should have died 6 years ago by government calculations. They calculated wrong. I did not die.

I had something in my head. It wasn't a tumor, because that's tissue. Mine was blood, a tangle of blood vessels. It was called an AVM (Arteriovenous Malformation). "There are several different approaches. The idea is to get rid of the tangle. Surgeons can open up the brain and actually cut out the problem area. Another approach is radio-surgery, which uses gamma rays to eliminate the tangle. Or doctors can thread a small tube through the arteries and inject a glue-like substance that closes off the blood vessels." Sometimes none of those procedures can be done if the AVM is in an area that can't be touched. That was mine. It couldn't be touched. That was the thought, anyway.

The government refused surgery. They would treat me with medication. I knew this would only slow the growth of this thing and I would die. Stanford University thought they might be able to remove it. They did.

I had each one of those above mentioned procedures done. It was experimental. It worked, though.

The government still has something in my head that should have burst and killed me 6 years ago. There isn't. There is nothing miraculous about me living longer than thought. That was just plain stupidity to deny the surgery ever happened.

The miracle is the recovery. To go from severe to moderate has been done by a few children I've seen. (I worked with neurologically involved children.) So far I have done this. I believe going severe to mild is remarkable. I'm now going to mild.

To top it off, I can explain the math and the error of government's ways. Providing the surgery may not have been possible for the government, but it never should have been denied that it ever even happened.

So I'm now turning -6 years old. I should have died 6 years ago. Dear government, will you please explain this to people.

Wednesday, December 16, 2015

A Tale of Two Pictures

The pictures are exactly one year apart. I was updating a community of followers, but someone made a comment about neuroplasticity. I compared the two pictures. Yes, it was blatant. It can be seen in the two pictures.

Neuroplasticity: The brain's ability to reorganize itself by forming new neural connections throughout life. Neuroplasticity allows the neurons (nerve cells) in the brain to compensate for injury and disease and to adjust their activities in response to new situations or to changes in their environment.

Neuroplasticity is also called rewiring.

Now how is it so blatant in the two photographs? Look at the first picture. The original post was about my hair. My face was of no concern. Today we're looking at my face. The second picture is a year later. I was just showing the change. People will think that I am happier.


The other corner of my mouth comes up. I have a definitive smile--line around my mouth. My face doesn't droop.

It can't be said that I am happier. I can't get away with jokes or antics. Maybe, it is that you are happier.

Monday, December 7, 2015


When I first came to this house, I was only speaking single words and short phrases. I commonly lost my voice and then I couldn't talk at all.

Time went on. I've said I was slowly progressing. This couldn't immediately be seen. It would take months and by then it would be a different professional, if I even had one at the time. My voice kept getting better. If you compared this to when I had no voice, then there is major improvement.
Recently, I was asked about progress since the time of that first video. My slow progression hadn't stopped, and you can see that yourself.
You can hear the talking is much more smooth. I didn't have to practice what I would say. This was originally an update for a friend. I had no intention of making it public. Later I've seen the importance of doing so.

I move my other hand now. That wasn't supposed to happen. I don't get Occupational Therapy (OT) anymore and it's good that I knew a little bit. Now I do that. That and speech have been my strongest areas. I do both.

Improvement hasn't immediately been seen in my case. Now that I think about it, the case is similar to that of Terry Wallis. 
"The nerve fibers from the cells were severed, but the cells themselves remained intact." Nerve cells that have not died can form new connections. It goes on to say, "The new research suggests that instead of the sudden recovery Wallis seemed to make when he began speaking and moving three years ago, he actually may have been slowly recovering all along, as nerves in his brain formed new connections at a glacial pace until enough were present to make a network."
My nerve fibers weren't "severed" but saturated with blood. Saturation is associated with death. These nerve fibers died. My cells, though, remained in tact. It sounds really close. (Scientists will say my cells were also saturated. For this there was DNA replication, If a virus from 1918 can be brought back, so can a brain cell be brought back. )

Wallis took a long time before improvement was seen. All that was happening in him was not seen. Improvement was happening all along. This is why case management is needed. Case management would have ordered screenings and tests that would have picked up on biological changes, the things that can't be seen with the naked eye.

I've most likely have had small biological changes all along. It wasn't 'Boom! She's all better.' My progress has been so slow, yet my cognitive skills are so high, it will, and already does, look comical to leave me at the lower level. That error is in the set-up. It has happened before and will most likely happen again since correction isn't taken. (The difference here is the patient has phenomenal cognitive skills and can point out the error.)


Thursday, November 26, 2015

Thank You

This is an open letter to The Red Bulletin, the Red Bull magazine.

One of my daughters will drink Red Bull. I can't. I have a physical condition that prevents me from taking food or drink by mouth. So I have a feeding-tube.

I'm supposed to be lying in bed until I die. That was supposed to be a few years ago. Instead, I get up in a wheel chair almost daily.

Almost 2 years ago, I got a promotion for The Red Bulletin. It was a new magazine. I figured I would take a look.

Dear The Red Bulletin,

I'm legally blind now, so it is difficult for me to read. That's not this type of magazine, though. The pictures are big and brilliant! Looking at the pictures has improved my vision. My eyes use muscles I don't use much. This ad said what I have been thinking:

I've been getting The Red Bulletin magazine almost 2 years now. The first year I spent looking at the pictures. This second year I decided to work on turning pages. You see, I really only have use of this one finger I type with. It would take me hours (the whole day) to go through a magazine just turning pages. Now it's just a half an hour. My finger-use has improved considerably.

Your magazine has improved both my vision and my finger-use by providing a mode of instruction that has been entertaining and appropriate.

Thank you,

Angela Ronson

Sunday, November 22, 2015

The Fish Who Didn't Climb Trees

"I was in the hospital, unable to speak or move, diagnosed as vegetative, yet I could pay a bill on time and not the payee. (That is not vegetative. Obviously I was communicating with someone to get that task done.)"

I tell how I communicated.

In the hospital, I assume I was tested with a communication board. I couldn't see one. Since I couldn't see a communication board, I failed the test. The hospital couldn't communicate with me so I was labeled vegetative (PVS). This is unconscious.

A communication board can simply be the alphabet on a piece of paper. It can be mounted on a board.

Adjustments weren't made for special needs. Educators are familiar with this and the general population is becoming more aware. I am low vision. Vision is now better than in the beginning of my recovery, but it is still low.

Imagine a 3x5 card. Only one letter is on it taking up the whole card. My mother didn't use a communication board. She had a stack of cards. My eyes weren't good enough to see the boards, yet. Of course I failed that test.

Flashcards used to teach the alphabet to young children are the same thing. She would hold up one card and I would blink yes or no for it. She would do this for every word. If a word had 5-letters, then she'd be going through that stack of cards five times. That would be 130 eye blinks from me just to get a single word out. As time progressed, my eyes got better. I could see the letters on a communication board. I was able to now use one! (Around this time, physical therapy had been getting my left arm able to propel a wheel chair. I started pointing to letters on the board with that same arm.)

My mother is the only person who would do this style of communication. Later, after I could say a  word, I was at a hospital where I saw a recreation nurse using a communication board to communicate like this with a patient. That hospital unit soon closed. The patient would have been moved to a nursing home and that style of communication wouldn't ever occur again.

I could speak a word by then and went home. It was figured I would die. I didn't.


Monday, November 16, 2015

Misdirection is the Norm

Whether economical or political, the reason prevents science from investigating.

The video:  

The links:
I also had a stroke. This video tells of a stroke being responsible- 
Besides economics, it may be politics-


The government has been contacted more than once. Initially, they were sent a letter by my doctor who was only concerned about non-payment of bills. I was in the hospital, unable to speak or move, diagnosed as vegetative, yet I could pay a bill on time and not the payee. (That is not vegetative. Obviously I was communicating with someone to get that task done.)

The payee was stopped so I could pay my bills. I was left vegetative.

E-mail with the Office of Civil Rights is at the end of this,

"Regrettably, the matters you raise in your email are not within our jurisdiction."

"Again, I am misdirected n it is things like this that continue to make it appear that I am the 1 who is inept. For some reason it is believed that a person in PVS is unable to recover mental function. I recovered that long ago. It has been motor function in my case. I continue though, to receive treatment as if it is my intelligence."  The bottom has all the e-mail with CMS or the Centers for Medicare & Medicaid Services

It will soon be 13 years and investigation is refused. I'm in a coma is the reason now. I laugh.