Monday, October 19, 2020

"How do you get on here?"

 Reprint   of

A  very disabled  person can get on the computer and type.

"How do you get on here?" I was asked. "Carefully! " I wrote back."Ha! This has taken me yrs. I do have 1 finger to use now. My head is full of knowledge."

Watch how the boy points at letters. I am doing the same except with a computer keyboard. I don't have any of those behaviors.

I can move my left arm as I want. I worked a long time and have refined my ability to hit and press a key. At first, I took days to write an answer. Now it might be 10 minutes if not too much is needed. 

I said that I didn't have the behaviors in that video. I didn't have any behavior. In the following video, see how the man sits and stares until his father puts music on. I don't require music, but the lack of behavior is the same.  

This movie is based on an Oliver Sacks case.
The man has a brain tumor.

Sunday, October 4, 2020

Growing My Brain


Does the brain grow after age 25?  I think it 's 25 now. The legal drinking age is 21. The two coincided at 21, but when brain age went up, drinking age didn't.

It's easy to see if the brain grows at a later age. Just look at mine.

I had a massive stroke at age 32. At age 34 I had complex treatment at Stanford University and Hospital. They removed damage and injury to the cerebellum of my brain. That was 16 years ago now.

What grew back?

I couldn't do this then. Speaking was "yes/no" and a few words. Writing was out of the question. I was just starting to move this arm that I am typing with, and my other arm was still paralyzed. Something had to grow so I could do this.

Does somebody want to look? I'm still vegetative. Last test was a barium swallow at this hospital. I didn't swallow so nothing changed. Why am I writing if I am vegetative?
If no one shows interest then to Hell with this n I quit.

Monday, September 28, 2020

I Need the Tube Out


"You have something protruding from your stomach," my daughter.

That's not what happened, but it's more exciting.      

I had been treating specific, mild pain  of my g-tube site. The G-Tube is where my feeding  tube goes into my stomach. 

The pain got worse. I ended up going to the hospital. Pain and redness warrant that.

Gauze was placed over the tube and an ambulance took me.

Under the gauze.
Redness  is infection.

They sent me back home!

I took an ambulance there and a  different "medical transport" took me back, without ever looking under the gauze.

Pus built up. The next day the feeding tube popped out. I told my daughter to push it in. I yelled.

When the G-Tube doctor opened an appointment was made.

The G-Tube was replaced and I am treating an unknown infection. 

I can't take this anymore. I may not be conscious for the next infection.

About me- In 2002 I had a stroke. It robbed me of speech and movement. It has been years. I now type with one finger and speak enough to not be understood. I didn't used  to be a doctor or a nurse. I just know how.

Sunday, August 30, 2020

Bleeding Blood

UPDATED 9-10-.2020

I was bleeding blood.

I bled so much that I required a transfusion. It was a closed wound injury, so blood was never seen.  I just know it ran down my neck.  I must have passed it.  I was in a coma and did not see.

"Blood ran down your neck,"  I heard. This is unusual. In a brain bleed, pressure builds, the brain is smashed down (it blocks the neck), and with enough blood, the person dies. There is no escape of blood. It drowns surrounding tissue.

There's a bad brain bleed; stroke. The  person is almost dead. There's a blood vessel defect. Some time passes and there is another bleed. The person passes away this time.

I'm the first sentence. I then broke the cycle. I found a place that would repair damage and remove the defect. Stanford did it and no one else. There wasn't another bleed. I wouldn't die from that.

I was in a coma. As far as I know, the time that I had my eyes closed and it appeared that I slept for over a month, I was in a coma.

I disagree with the diagnosis/ possible diagnoses that were given to me after I opened my eyes.

I have said that I am functioning between the people in the videos in this article. Click it. It talks about me. 


I am functioning between the following two people who had Locked-In Syndrome. First is Martin Pistorius aka 'ghost boy.' He had a neurological disorder of unknown  origin. 

People had no clue that he was in there.

At the other end of my spectrum is Kate Allatt. She speaks now.

Kate Allatt is a mother-of-three from SheffieldSouth Yorkshire, who has successfully recovered from locked-in syndrome. She now runs Fighting Strokes and devotes her life to assisting those who have locked-in syndrome.

The lady found me. I'm honored. I don't speak as well, but aim to.

Do you remember that bleed? It was "in the cerebellum next to the pons." I remembered hearing that in rehab. A pontine infarction is associated with Locked-In Syndrome. I bet this is when that rehab referred to Stanford. This was rare. Even more rare is now. I'm not Locked-In anymore.

From browser:
pontine cerebrovascular accident (also known as a pontine CVA or pontine stroke) is a type of ischemic stroke that affects the pons region of the brain stem. A pontine stroke can be particularly devastating and may lead to paralysis and the rare condition known as Locked-in Syndrome (LiS).Feb 6, 2019


It feels like a hundred years. Actually, it will only be 18 years in December since I had the stroke. It has now been 16 years since I had the surgery that saved my life. It did a little 
more than save my life. I now write this. 

I'd call the surgery process biological engineering. It was at the blood vessel level. Genetic engineering gets even smaller. It's at the DNA level.


"... it will be a slow  process, because one will have to wait about 18 years to see... changes" - Stephen Hawking

This part of the quote struck me. That's close to the time.  I thought. I didn't have genetic editing.

The AVM was a vascular disorder (blood vessel). It wasn't genetic. It was in the brain, though. It would take the same time.

My DNA was not outright changed, but it  looks like that happened. How can I tell? My hair changed. I haven't  used any chemicals on my hair. It became curly on its own.

I recently became aware that the act of dying itself can be a DNA changer.

My thoughts have been turned toward life.

Wednesday, August 5, 2020

I Can't See Your Mouth

The NPR story on masks helped me put it together. I have been lip-reading all this time- even now. I know that sounds absurd and I need to explain.

The mask covers the mouth. You can't see lip movement and facial expression.  I must be using facial cues to communicate. The world is in the middle of a pandemic and every one  is covering their face!

This photo is from NPR.
There is a cut-out and clear plastic is inserted.

Where did I come up with the idea that I was lip-reading..... 

Dr. Nicholas Schiff describes a patient and a 
problem with determining consciousness.

I was looking for videos on Persistent Vegetative State (PVS) vs. Minimally Conscious State (MCS). I found a video of a doctor describing his patient. She wasn't altered consciousness, but she had Central Auditory Agnosia and she was using lip reading. I filed this away because I knew I was conscious.

You can see the importance of being able to see the mouth. Not all people need this.

Thursday, July 9, 2020

What's My Diagnosis?

I just want to find out my true diagnosis with Medicare/Medicaid. In the rehab it was made Persistent Vegetative State, and later they couldn't change it when they started communicating with me. Recently, a family member found paperwork from back in 2006 from the hospital I was at. (A different hospital.) They had me as Acute Respiratory Failure in 2005. Records end there, but I left in 2006.

How am I alive?

So I haven't been breathing since 2005.  It says cleared in small letters below but that doesn't change a diagnosis.

I actually was in a coma when diagnosed. The diagnosis supposedly couldn't be changed. Then, I saw those papers that said I am dead.

I do  know that I am in a coma.

My eyes are open, so it's an open-eye coma.

Ten years ago I saw a local doctor for redetermination. He kept gasping, "What happened?" I  later saw another doctor for redetermination. Either of these doctors could have changed my diagnosis, but I was under the impression that I was stuck with the original. Diagnosis is federal, not state. 

Both of the diagnoses of Persistent Vegetative State and Acute Respiratory Failure are wrong. I am not in a coma and I am not dead.

I just want to know what my diagnosis is. Why can't it be simple brain injury?

I have a few more things to try, but this is not readily available information. (I have to make an account on-line with Medicare? That's faster than calling them.)

Monday, June 29, 2020

Years To Move

I use my left finger to press a computer key. One letter is produced. I put letters together to make words, and many words make many sentences. Soon enough I have an entire thought down.

Some may be skeptical, but it wasn't always this way. I couldn't type 15 yrs ago. Back then, I primarily used the lap top for watching videos.


I didn't all of a sudden one day start doing this. Look at the picture. I'm able to sit up, look at the computer screen, attend to a video, and push play and other controls. These are foundation skills of what you see today. This was 15 years ago and hardly overnight.

My right arm isn't fisted anymore like in that picture. 

There are 12 years between that picture and video. For 12 years I had been working on unfisting my hand. I wrote this long ago,

An Occupational Therapist suggested to me that I hold on to a piece of foam tubing with my weak arm and move it with my good arm. I could cut a pool noodle from a discount store. The video is when I started doing this.


I now purposely move my right arm, but it is not accurate.

I speak, also.

My stroke was in 2002. It has been years. I couldn't move or speak  back then.