Competent (Updated 12/30/2018)

I don't want anyone, not even the commercial entities of the hospitals in which I resided, to be held liable. So I have removed all names except mine.  I originally presented this on 11/28/2012.

 

You won't find this document in any medical record. It's here by chance. During my hospitalization at many hospitals, this was thrown into a box. It was written by my doctor at the time to Social Security. The motivation was money.
  

You see, as "semi-vegetative" sometimes I was there, sometimes I wasn't. When I was there, I was fine. My hospital bills weren't being paid on time. This could easily be fixed by a doctor telling Social Security I was competent to receive my money and not need a payee. The doctor was at-risk of losing me as a patient because of non-payment. If I controlled my money, I could pay a bill on time.

If I was mentally all there on 6/2/03, then why am I not now? The stroke was in 2002, which was before this letter. There was no form for recovery. The doctor had to write this letter. The government works by forms or nothing happens. Hence, I am still in a coma.

Communicating In a Coma

I'm not as scary as this video clip,

I posted the following in a group:

Before I talked n only moved my head some, I was at Santa Clara Valley Medical Center Rehabilitation. This is in the middle of Silicon Valley. It was 15y ago n Steve Jobs was amazing. I was put on a computer.

A dot of some mylar-type material that was sticky on 1 side was cut out n placed on my forehead. I controlled a cursor. It was only yes/no at this time.

I found a commercial headmouse. It even had the dot, which is put on glasses in the video. It was close to a thousand dollars! After shipping and tax it would be more.

Headmouse

 

I did yes/no games with that headmouse.

 This is not a game I played but it is to 

give you an idea. The equipment has to 

be learned, so games are simple.
I also had a brain injury. You need simple games.

The computer was stopped when I started moving a hand. Hand switches are much cheaper.

To think that I was probably one of these people in a coma that understood, and the US government lost their chance. This is very likely, just look at my diagnosis, Semi-vegetative. "Vegetative" is still a coma, but the eyes are open. You don't add "semi" when a person starts to communicate (speak in my case). That's Minimally Conscious State (MCS).

I Still Haven't Woken Up

When I opened my eyes 5wks after my bleed I was made vegetative. This is still a coma, but open eyes. I never woke up. 

-Angela 10/11/2019

Pseudo-coma/Locked-In Syndrome definition.

Can be clicked.

It's a rare disease.

 

I haven't returned to work yet because I'm still in a coma. I will explain. The government plays up death, mine anyway, so hence my diagnosis is semi-vegetative. "Vegetative" is close to death. "Semi" was added when I didn't immediately die and started recovering abilities. You now get this from someone who is semi-vegetative. I doubt a vegetative patient can do this.

"Work" was a Behavior Specialist for a county mental health. Before that I ran an early intervention program for kids under 5 who were at risk of having a disability. Yes, I was in charge. It served 5 counties and took care of a big piece of northern California. When I went to Mental Health up in the mountains, I ended up as that particular county's vice president of First 5. (http://first5sierra.org/sierra-county-children-and-families-commission/ My county was Sierra.)

 

I already had a background rich in dealing with trauma. Disability is no stranger to me. You can see that my current network was full of professionals. These people were my friends. I got the best and brightest info as advice.

Now, how am I still in a coma?

I had an AVM in my head that bled (AVM stroke) in 2002.  I ended up in a closed eye coma for 5 weeks. This is the coma I never woke from. I never woke up! In 2003 I started opening my eyes. The government made me Vegetative- I was just in an open-eye coma. (How do you wake up if your eyes are already open? I just didn't speak.)

I did something at that time that is unheard of. I COBRA'd my work insurance and used my Social Security to make the COBRA payments. Do what you have to do and I did. I skipped all bills and used the private insurance to go to rehab. I was almost dead. The dead don't pay bills. 

Some called the thing in my head a brain tumor, but there wasn't any tissue. It was a blood vessel. Usually these things burst when they bleed, but mine hadn't. I still had a thing in my head that could kill me...like a tumor.

I did a second surgery at Stanford. It was experimental. The government never recognized this. That should have been when I "woke up." I think it's funny. If you ask the government what happened to my AVM, what will they say? Stanford removed it.

So "do what you gotta do." I've had a big loss, if you say me dying was the biggest. (My heart stopped in the beginning.) I just keep plodding forward. I keep telling myself to think about it later. We know those thoughts are the downfall. Dwelling on the past leads to depression.

I think this coma business is stupid. I was in a closed-eye coma 16 years ago and opened my eyes the following year. Look up pseudo-coma. It's more likely that was what followed the closed-eye coma. I went from coma to pseudo-coma. (I would think that these are  the people that understand in coma.) Only a few have come out of pseudo-coma. (Pseudo-coma is also known as Locked-In Syndrome.)

Holding Back The Years

"Don't worry, Mom. You'll get old before the movie is over."

16 years has already been a long movie. The 16th will be my 16th anniversary since the stroke. (That was 12/16/2002.)

Watch On YouTube

I can't embed this video.
This is why I found the movie interesting.

My "core body temperature" had dropped during the stroke I had. Medical records read that I had hypothermia. Knowing that I had had surgery, I assume my body temperature was intentionally dropped. Hospitals are such cold places!

I wasn't hit by lightening like in the movie. I was shocked, though. During the surgery, my heart had stopped. Now I was already cold. I was a cold lifeless body. My heart was shocked to restart it.

Doctors resuscitated my heart. They brought heartbeat back. Not only did they do that, but records state that I was treated for hypothermia. My body was warmed up to normal body temperature.

The movie is fictitious. I'm not the first person to be resuscitated after a body temp drop. There would be other ageless people if that was the case. I did have a stroke, though. I think the magic that happened can be found in there.
 

Family members have remarked, "I think the stroke made you younger." It may have. I expect to eventually age. I don't know how long this will last.

 

We Are In a Simulation

In the movie Avatar, humans access the planet Pandora through the use of Pandoran inhabitant host bodies and virtual reality.

I can apply this concept to here and now. Other beings, called souls, access the reality that people know through the use of the human body.

 

I doubt we are all NPCs in a computer game. NPC stands for non-playable character in a computer game. In life, it is slang for a person lacking personality. These people tend to use short, canned statements and follow trends. I like to believe there is free-will. I doubt we lack free-will and are NPCs.

The idea that this is a simulation is becoming popular.

Making Me Swallow

I have somewhat of a swallow, but I haven't dared use it unless supervised. Years ago, when I first opened my eyes after a coma, my swallowing was tested. Jello was used. I swallowed the Jello, but it went into my trache tube (I was on a ventilator) as well as Jello came out my nose. The speech therapist said I swallowed to my airway and not to my stomach.

I've pretty much avoided food ever since. I do taste, though. So this has been hard. I used flavored chapsticks and lipglosses to help. After a long time, I moved to candy spray. As a note, don't spray the back of the throat. Now I use lollipops. I can handle my saliva now. You can see there is already progression and I haven't begun swallowing.

I have a second swallow that I wish was common. I believe it to be correctly doing what a swallow should, but it rarely happens. It is becoming more often, but still doesn't happen when needed. It reminds me of the following video, but instead of pain the bad thing is aspiration or swallowing to my lungs.

My 2nd swallow is most likely the green arrow.

 ______________________________

My idea has been simple. I just put a lollipop in my mouth. This changes the environment to include taste. All those taste receptors come alive.

The lollipop then has added speech therapy benefits. It is specifically used for speech and swallowing therapy.

Lollipop Swallow from Ed Steger on Vimeo.

  Lollipop Swallow from Ed Steger on Vimeo.

_____________________

I also have an idea to use tDCS to stimulate swallowing. tDCS stands for Transcranial Direct Current Stimulation. It is the delivery of electric current to the brain. I found some research, but this is new.

"Dysphagia is common sequela of brain injury

with as many as 50% of patients suffering from dysphagia following stroke. " I'm surprised there hasn't been more research with such a high incidence rate.

This article has a picture of electrode placement. https://link.springer.com/content/pdf/10.1007%2Fs00455-017-9789-z.pdf

 Using tDCS for the swallow
 _____________________

I am more than likely rewiring...and growing the wire.