How Are You?

I get "How are you doing today " First thing I do when I wake is check my feeding tube. If it is in, then I am ok. If my tube is out then you won't hear from me until I get it in and it is taped down. If I can't, it's ER.

"If I get it in"... Excuse me, but doctors have a hard time. Not only is there an outer hole,but an inner hole. I did it once. The GI specialist was shocked.

1-10-2021 

I watch my feeding-tube like a hawk. I got it 18 yrs ago. I should have died 18 yrs ago. It kept me alive for 2 years while waiting for life-saving surgery. I breath on my own; I speak on my own; and I now write on my own. That feeding-tube has  kept me alive. (It's not the same tube. I periodically have it changed to prolong life.)

The Original Ambulance

 

It was 18 years ago, but I don't forget. I was also unconscious.

This was before the helicopter ride. The helicopter took me to a trauma center. I had surgery. I am brain dead.

...or so they thought.

Still Dead

 

Respiratory Failure is Dead if Nothing  is Done

I was NO code.

I just didn't have a Near Death Experience (NDE), but it was a total death experience. I've worked on reclaiming things, but paperwork may still reflect that I am dead. 

This is fine! I am alive with the state, but I am still dead with the federal government. I've completed a process for a state program.

As long as I still get my retirement/ social security they can continue listing me dead.

_______________

If the above is not enough, this is from the first hospital. More than one place has me as dead.

I'm brain dead in this excerpt.

;

Smart Head

I had an accident on 12-16-2002 in

Downieville, CA.

-added 12-22-2020

It has been 18 yrs now that I have had a brain injury. In the 1st yr I couldn't breath (ventilator), and then it was many more years to talk. 

I see it as taking forever to talk. Others will say that I taught myself to talk and I started spewing information.

I didn't want to die with all this information in my head. I couldn't talk. I taught myself to type.

Now I talk. Kudos to those who read.

A Shot or Not

 

No flu shot has ever made me sick. The pneumonia vaccine hasn't made me sick, either. I bet most haven't even heard of that last one. Living in the hospital meant I got these shots. (I was in various hospitals for 4 years.) I kept the tradition when I got out.

I'm still alive.

I will get the new one if FDA approved. These vaccines are optional. I'm still alive and I don't refuse a tetanus shot. You have the freedom of choice. I do not condemn people for choosing different. It is personal and none of my business.

My Cerebellum Was Fixed

 

It's not amazing that I type. I have 1 good arm n a piece 

of brain was missed. That piece was missed n I now talk. 

@Stanford_Neuro

The cerebellum rewired n now I talk?

https://twitter.com/angelar70/status/1324058519629258753                

Here it is 16 years after surgery, and I think my cerebellum is still rewiring.

What does the cerebellum do?

The cerebellum receives information from the sensory systems, the spinal cord, and other parts of the brain and then regulates motor movements. The cerebellum coordinates voluntary movements such as posture, balance, coordination, and speech, resulting in smooth and balanced muscular activity.

Cerebellum Function, Anatomy & Definition | Body Maps

Stanford restructured my cerebellum. The AVM that bled and caused all this damage was there. They removed it. That wasn't easy. I had to go in a few times just to shrink it.

When the AVM was shrunk to operable size, it was removed. Stanford also took out scar tissue and cleaned up the area. I bet age related damage was also removed, as this is seen in my appearance. I will assume this is temporary since I keep aging.

So Stanford restructured my cerebellum. It looked good. They didn't know if they had fixed it. That would take time. The brain would have to grow.

Growing My Brain

"What happens is that there is an injury to one part of the brain—most often the left hemisphere. And there is what I called a recruitment of still-intact brain tissue elsewhere. The brain seeks to correct the imbalance and will find an undamaged area, most often in the right hemisphere. There is then rewiring to that new area..."  https://www.vice.com/en/article/bn5qew/whats-new-in-the-field-of-savant-syndrome-research-611

An area of my brain was out-right missed when I got the brain injury.

This will get some people.  The area of my brain wasn't available at the time of my injury.

The area my brain rewired to was my cerebellum. This area first had to have the anomaly, the AVM, removed, and it had to be cleaned and repaired before it could receive anything. 

Once that was done, it would have to grow. The human brain takes years. Rewiring happens during this time. I may be rewiring right now.

 

I didn't know the cerebellum did speech until I looked it up. Watching the above video, it reveals the cerebellum is involved in higher processes. How could I come up with a concept of missing information in time?

We will see as I get older. I believe my brain is still growing. I have at least 25 years from the date of surgery for brain growth (if development stops at age 25). Any time thereafter is unknown. (Calculation is another high process.)

The high processes will also be seen.

 

As for my high IQ thing, it was there before the brain injury. This writing is my second explosion of creativity. Piano was my first. My cerebellum rebooting is entangled, so they go together. Whatever you get will be enhanced.

How Did He Type?

 

Some of Hawking's work

People forget how disabled Stephen Hawking was. I use one finger to type. He didn't move an arm. He didn't use any fingers and he typed!

You didn't hear his voice. That was computer generated. He first had to type what it would say. It took me forever to figure out how he did this.  Maybe if my eyes were better back when I looked I would have seen. I see it now.

Stephen Hawking had one small muscle in his cheek on his face that he could flex. He would wear a device  or modified glasses. It was so inconspicuous that you couldn't tell.

Talking with someone who doesn't speak can be done if that person moves something. Usually movement is opening and closing the eyes. I once had a roommate in the hospital that could raise her arm and I used this for 'yes.' It reminded me of school.

If you can afford it, there are devices for reading brain waves. A person doesn't have to move. The price of the equipment will most likely come down. It's the training that will be difficult. I'm only addressing those who do not need equipment. Hawking had those glasses. The specialists from Intel that he had aren't cheap.

______________________

For those that move something, even if only an eyelid...

THE EASIEST MOVEMENT IS 'NO.' You need two (2) movements. If it is blinking, ONE BLINK IS 'NO.' Two blinks are 'yes.' The reason is so you don't get a 'yes' for something they don't want.

Stephen Hawking probably had this as a back-up, but it is horribly slow and not very reliable.

I like how a friend says Hawking developed ESP. He talks about it at 17:33.

"How do you get on here?"

 Reprint   of  https://thoughtfulveg.blogspot.com/2019/06/how-do-you-get-on-here.html

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.

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.

 

10/14/2020

Does somebody want to look? I'm still vegetative. Last test was a barium swallow at this hospital (Merced). 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.

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.

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.

________________________

https://www.psychologytoday.com/blog/concussion-is-brain-injury/201907/why-do-we-call-it-vegetative-state

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 Sheffield, South 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. 

https://en.wikipedia.org/wiki/List_of_people_with_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:

A 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

Pontine Stroke: Causes, Symptoms, and Treatments | Saebo

_________________________

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.

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..... 

https://youtu.be/nPq3Qtjwsi8

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.

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.

https://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html

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.)

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, https://braininjuryknow.blogspot.com/2016/07/opening-hands.html

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.

Angela Ronson · I Move Both Arms

I speak, also.

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