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 for causing very strange behavior. - 
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.



update 8/12/2016
I am told I can be vegetative on my own. The actual e-mail is included at the end. I omitted the employee's name.

Saturday, November 14, 2015

Idea to Open the Eyes

The patient is aware but appears unresponsive, 

(This is where my story starts to get funny. My appearance was, and sometimes still is, of an unresponsive person. Then I start talking....) I didn't initially move when I opened my eyes after a coma. I had a hemorrhagic stroke due to a ruptured AVM. I have slowly gained movement and am able to type this with one finger. The above referenced article states there is a lack of rewiring to a motor area in patients who are conscious but don't move.

First, a patient should display cortical activity in a brain scan. Determination can't be made by outward appearance. My condition was and the error began.

On the patients showing brain activity, the area between the thalamus and primary motor cortex needs to be rewired. For this, I propose massage. Massage will provide direct stimulus input to outer nerve endings. In the past, I got something to work by bombarding it with sensory stimulation. ("The reason ART works is the brain is constantly bombarded with natural information, but in a way that the brain has to deal with it. " Gravity here instead of massage.)

This bombarding of the senses is the same idea I used to get my arm moving. I give that here,

This is unorthodox, but massage provides the necessary stimulation. There should be a concentration on facial massage, especially the eye area. Opening the eyes signify a big step in over-coming coma, but these patients had probably already started the process. (In myself, I just happened to immediately go to a hospital after my bleed that did intensive range-of-motion exercises.) Range of motion exercises provide stimulation to the muscles, but I was lacking stimulation in the eye area. I may have opened my eyes sooner and may not have had problems keeping them open if facial massage had been done.

Massage should be 2-3 times a week. Days are off in order for neural wiring to grow.


The massage has me wondering.... Years ago I worked with neurologically compromised infants. Those babies that were irritable were given infant massage. They got better, but it wasn't known why. The massage must help with wiring! This can't be seen to the naked eye. No wonder those babies got better.



This is what all of this is based on; "Whatever signals you feed into the brain, it will figure out a way to decode it," David Eagleman.

Sunday, November 8, 2015

My Speech

In 2002 I had a severe brain bleed that left me in a coma. Five weeks later I opened my eyes. I couldn't talk or move. I was labeled PVS (Persistent Vegetative State) and it was left at that. Nobody kept track of anything. I now talk. When did that happen? Was it now or 3 years ago?

I will address talking.

Before talking was breathing. I had to breathe on my own in order to talk. I'm not talking about just the tube in my throat. I was intubated before that. The diagram shows why I couldn't speak at that time. It went into my vocal cords. A second surgery was performed after to put the hole in my neck. I still couldn't talk. This may have to do with weakness and not that I was on a ventilator.

I say weakness prevented me from talking because when I was off the ventilator, I could only make sound if the hole in my trache tube (the tube in my neck) was plugged. As I developed lung strength, I did not need this plugging of the hole. "My Hole" covers the trache tube and even has pictures of it.

My first sounds were vowel sounds. Later, maybe a month or so, I added consonant sounds. I remember 'M' which may have been the first consonant. My first word was "mom." This was still in my first year after the bleed. I had kept my work insurance under a special ruling called COBRA. At that time, insurances had caps. I kept it until I reached the cap. I had speech therapy under this insurance. I did not get speech again like that when I switched to the government program.

I had been using a communication board. Here is one being used:

At first, I would blink "yes/no" for letters pointed at. As I got movement in my arm, I touched the letter I wanted. When I started vocalizing, I'd say the letter sound as I touched it. As I got better at saying a word, I only needed to touch the first few letters.

I then had to leave that hospital. Insurances had caps at that time and I had reached mine. I did not let the new place use the communication board. This is the big environmental change I will talk about. I forced myself to use spoken words. (Education is familiar with this technique.) It was common for me to say a word over and over until it was clear and could be understood.

My bleed was in 2002 and by 2006 I was using single words and short strings of words to answer questions. I still did not talk on the phone. Talking on the phone didn't happen until after 2009. (I did say "yes" and "no" on the phone to some family, but they knew I couldn't converse.) 2009 is when an article I wrote for Stroke Connection Magazine was published,  p.8  They could probably tell something unusual was happening. I use this as a marking point.

Fully speaking, the way I do now, is more recent. By 2011, someone came to video me speaking. I published something myself in 2014:  

Remember that communication board I talked about in the beginning? What I am doing now is similar. I find a letter on an electronic communication board...the computer keyboard. I touch the letter and press down. I just have the extra cognition to formulate sentences and put them together in a story that makes sense. I don't have a problem with my cognition, just my speech.
(Not all brain injuries are the same. Some could have cognitive impairment. Mine didn't.)

Tuesday, November 3, 2015

A Conscious Vegetable

"In highlighting damage to the pathways that physically connect the thalamus, one of the hubs of consciousness if you will, and the motor cortex, which drives our voluntary muscular activity, as the reason behind the dissociation we have provided an important explanation." Motor damage is seen in me a lot. I have problems in being able to move now. It has taken me years just to get one finger to type.

I say there is a second disorder also present in me which brings about the movement you see much faster than usual. This second disorder has a great deal of neuroplasticity, as well as it is also brought on by a brain injury.

Due to this second disorder, I didn't emerge from a coma...I can tell you all about it. I have an incredible memory. tells which of my developmental skills came back first, and the order in which they appeared.

This all remains to be determined, though. Currently I am told I am in a coma. (If 13 years are fast, then what is typical?)