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 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?)

Saturday, October 31, 2015

Tell Me More on Stem Cells

Outward behavior suggests stem cells or a miracle.

I asked...

I will continue to have neurogenesis until I die? They [stem cells] would have been triggered in the beginning [of my bleed], and I haven't stopped [improving] yet. Is there some sort of cycle created? I wonder now if the same stem cells activated in the beginning are now doing this, or does my body now produce stem cells? I'm not equipped to answer that one. 
Then I read, "Stem cells may also replicate and remain stem cells without having a specialized function" - See more at:

I had to look more into this. I don't know a lot in this area.

Adult stem cells typically generate the cell types of the tissue in which they reside. For example, a blood-forming adult stem cell in the bone marrow normally gives rise to the many types of blood cells. It is generally accepted that a blood-forming cell in the bone marrow—which is called a hematopoietic stem cell—cannot give rise to the cells of a very different tissue, such as nerve cells in the brain. Experiments over the last several years have purported to show that stem cells from one tissue may give rise to cell types of a completely different tissue. This remains an area of great debate within the research community. This controversy demonstrates the challenges of studying adult stem cells and suggests that additional research using adult stem cells is necessary to understand their full potential as future therapies.

So I possibly threw myself into a cycle of renewing stem cells. This is in debate in research. So I'll wait on that one. Maybe when I'm 60 years old I will be able to tell. Science may want to watch, also.

Tuesday, October 20, 2015

I Write

I am not using facilitated communication. I think all this stuff up myself. There isn't a second person here. I type all of this myself. I use one finger and I must look at the keyboard. I am including a video of facilitated communication. This uses mostly people with autism, but head injury is mentioned at the end. Interestingly, it mentions that the keyboard must be looked at if only one finger is used. I never used facilitated communication. I rehabbed my left arm enough for one finger to press a key on a keyboard. It took many months and many marbles. (OTs, I used marbles as transferring objects in containers.)

I have already written a lot. I maintain two active blogs. You are reading this in the larger blog. Writing as much as I do is considered a compulsive behavior. Compulsiveness is not illegal. The behavior can be.

This person is compulsive about his art. Watch the first 3 minutes. He had a stroke.

(There may be similarities. I'm literary art, though. It would be hard to make those comparisons. I can see similarities with the brain injury, though.)

Strangely enough, the following video brings together visual art, literary art, and brain injury. 

Monday, October 12, 2015

Let Me On

  I was written out. Now I want to be written back in.


Okay, so I was in a coma at one time. I'm not anymore. Get on with it! Some people get stuck there. That letter explaining to me I am in something "referred to as coma" is just something else. You get back on the ride if you fall off. Can I get back on? Stop making it hard for me.

Obviously I am not in a coma. I'm not 100%, either. I don't walk. I have an electric wheel chair. I don't eat like I used to. I have a feeding tube, and food can't go in my mouth.

I am diagnosed with dysphagia which is the inability to swallow. Well here's the catcher, I do swallow, but my airway stays open so I swallow to my lungs. I believe this is fixable with speech therapy. Same goes for the wheel chair. I push to a stand, so walking is very likely. Physical therapy is not currently provided.

Not only do I type this out, but I do it with one finger. I had to know Occupational Therapy (OT), adapting my environment, and accessibility available to me. I could provide limited OT and speech in my condition. I couldn't do Physical Therapy, so that is way behind. Cognitive skills are amazing. It's very rare, but it can happen that they become very advanced.
Labeling me the way I have been hasn't worked. As it is now, I do not qualify for any therapy services.

How did I end up here? It can be seen as a comedy, but for myself and the people involved, it was not. What happened did happen. It's funny now to look back and still be vegetative. A vegetable did so much!

Now a vegetable has to live. I brush myself off after falling off the ride. I'm all better now (for the most part). Let me back on.


Friday, October 2, 2015

Roads of Life

Time is relative to all that is around us. We don't pay attention to most things that are not around us. We don't pay attention to what was once there.

We travel down our own roads of life, not thinking much of the road of anyone else. Once in a while we encounter someone who is concerned with a piece. It is not their road. They don't do the whole journey. Some stay longer than others.

Sometimes we stop and look back. You think, "I've come that far?" We are in awe. Parents of special needs children, grab the photo album. Look at last year and the year before. You will see your child's progress...their road. A yearly picture may even show you something in failure-to-thrive (one of the toughest to see progress).

Looking at my first it appears as an average road. Look back, though, to when my brain injury started. "Oh my..." someone says. It starts with no heartbeat, not breathing, and below normal body temperature. I travel so slow that is not noticed.

Think about that for a minute. We are talking about a very serious brain injury. It shouldn't be recoverable. Yet, I am the one who wrote this. My road is a dirt path in the country. Everyone else I deal with is on the highway.

Thursday, September 24, 2015

The Computer as Treatment

"Practicing social interaction in a safe, non-threatening, gaming environment helps people reduce anxiety and gain the confidence and skills they need to attempt more social interactions in their daily lives." Social media does this.

Some neuroscientists are tackling teaching cognitive skills though games. I found one to be substantially helpful with my vision. It clearly stands out in many areas.

Different therapy videos can be found on the internet. Occupational, Physical, and Speech therapy videos are there.

Videos aren't for everyone, but they can be a useful tool.
The exam must still be done in person, but this new tool of the computer gives you options in treatment. This last person is successfully using her computer to provide therapy.

The true reason this Survivor posts videos! I promise!
Posted by Jennifer Stokley on Friday, September 18, 2015

Saturday, September 19, 2015

Long Ago

True story... "Stanford said to follow-up with my regular neurologist. There is no neurologist. This never happened."

I don't get regular follow-along neurology appointments. There were consulting neurologists early on while I had my old insurance from work, but that was a long time ago. A neurologist did my surgery at Stanford. I had to go through the neurology clinic as an indigent patient. Surgery was experimental and covered as that. I know it was around the time Gamma Knife Surgery was developed (which was also at Stanford). It was called "stereotactic radiosurgery." I believe this is now something like "Gamma Knife" and I had a form.

To put into context for people when this happened, it was way before the fMRI. I've never had one. I've had a regular MRI. These were just as good, but not as refined.

The problem of me not getting any services goes back to an even earlier time. It goes back to my diagnosis. I didn't communicate back then, so I was deemed mentally incompetent- a PVS (Persistent Vegetative State) diagnosis does this. When I did start blinking to communicate, I had already been given the PVS diagnosis. Some financial changes were made, but I remained incompetent. (I took this as my inability to talk, mind you I could use my left hand to finger spell in sign language.)

Time has gone on. I started vocalizing and those sounds became words. Words became sentences. I no longer have that old insurance but keep that original diagnosis. I was found to be incompetent then and I am incompetent today. I now write and I am still incompetent.

Time limits should just be removed...for diagnosis and development. Keep time limits for the financial part. This diagnosis is throwing everyone off and I don't qualify for some things. (The PVS diagnosis.)

Tuesday, September 15, 2015

Are You Unconscious?

No. I'm pretending to be dead.

Of course I'm not unconscious! That's ridiculous. If you take what is on paper from long ago, I am unconscious. Paper was never updated.

I am frequently asked if I am unconscious and I wonder about the person asking. You cannot doubt your own consciousness as given by Descartes. Cogito ergo sum or "I think therefore I am." I've always thought, even when I couldn't speak. Thinking was probably for a short amount of time. My consciousness now is comparable to ADD, or Attention Deficit Disorder.


"Are u  starin' at the car?"
Huh? I have a car calander. She was talking about that. I was in la-la land.
I believe this to be remaining PVS. In the beginning, I was lucid long enough to pay a bill. It became longer lucidity, n moments of "staring" were thought to be seizures. Now "staring " is very shallow. It's less than daydreaming.
Knowing this. What is PVS?

I now will catch myself staring. It must be less for me to catch my own self. 'Lost in thought' we say. It's just annoying now.

So I've always been conscious. It becomes 'how long do I remain conscious.' Isn't that MCS, Minimally Conscious State? Again this comes up.

Saturday, September 12, 2015

My Situation Isn't Hard To Explain

UPDATED   9/14/2016

My situation can be explained. I just don't fit in any category this country has to offer. I hate to say this, but if I went to Canada this wouldn't be happening.

Here's why I say Canada...

A Canadian man who was believed to have been in a vegetative state for more than a decade, has been able to tell scientists that he is not in any pain 

My condition would be something like that plus something that is very smart and disabled. (There is something, but it is rare.)

The AVM in my head (the blood clot that bled) did not magically disappear. It was surgically removed at Stanford in 2004. Surgery was denied by the government back then so the university covered it. Now, due to no case management, this error is carried forward and my existence is a miracle. The government denies surgery happened, so the AVM just disappeared. The AVM would have killed me. With it gone, early death would not happen. 

The rest of my recovery then goes to what I did-therapy exercises and education. That is what I used to do for babies. Medicare/Medicaid does not provide on-going therapy.

The United States is making it difficult. I remember watching on TV what happened to a PVS woman here. It's in our politics now. My problem hasn't just been science. Many scientists now want to look at my case. Politics prevents them.

This country is making some big magical deal here, when really it's the natural progression of science. There is no case management and errors are carried forward. Some science is outright denied, leaving the reason of my existence to magic or miracle.


Friday, September 4, 2015

Paralyzed Hand Isn't Paralyzed

I move my "paralyzed" hand consistently. It does sign language (ASL) in the video. I wonder if me doing sign language is related to the bit on Foreign Accent Syndrome. 

Beyond ‘Foreign Accent syndrome,’ ‘Foreign Language syndrome’ 

Beyond ‘Foreign Accent syndrome,’ ‘Foreign Language syndrome’

There have been two instances recently of young men emerging from coma fluently speaking a foreign language.
Ben McMahon had studied Mandarin early in his schooling but never mastered the language. However, in 2014 he emerged from a coma speaking fluent Mandarin as seen in this Mirror online post. Likewise, a British football player awoke from a coma after a serious auto accident speaking fluent French. Again, he had some exposure to French in the past but never spoke it fluently.
Cases of what has been called “foreign accent syndrome” have been reported, wherein people recovered from head injury with a foreign accent, but these cases exceed that with an entirely new fluency in a foreign language. Since these individuals had some exposure to the foreign language in terms of learning, they do not represent genetic memory as such. But the phenomenon of gaining fluency in a foreign language following head injury goes beyond foreign accent syndrome and joins the “acquired savant” category.
—Darold Treffert, MD

"But the phenomenon of gaining fluency in a foreign language following head injury goes beyond foreign accent syndrome and joins the “acquired savant” category." I had exposure to sign language prior to any brain injury. I did not use it. I remember it really well.

Before I could say anything, I'd sign letters with my other hand. Nobody knew sign language and it was assumed I was cognitively impaired. There was no sound and movement was seen as reflexive. Don't make assumptions. This isn't reflexive anymore. (I'm using that first hand to poke keys on the computer keyboard.)