Wednesday, January 25, 2017

What's So Special?

Why would a doctor do this? What happened? 

I had a stroke. I had a really bad stroke. It was so bad that most wouldn't survive. I'm not sure if anyone has survived the following description...


On determining brain death, 3i of reads, "Examination of the patient-absence of spontaneous movement, decerebrate or decorticate posturing, seizures, shivering, response to verbal stimuli, and response to noxious stimuli administered through a cranial nerve path way." (This is brain death and the same as my medical record.)

From that description, I am dead.

The word  'decerebrate' stands out to me. It's used in some circles as a term for brain-dead.


1. to eliminate cerebral function by transection of the brainstem or ligation of the common carotid arteries and basilar artery at the center of the pons.

Now this gets funny to me. Do I appear to be dead? Um...I want a second opinion.

I was only mostly dead, though. I didn't have any miracle workers or magic pills. I did it all on my own.

Of the countless near death experiences, how many of them have actual medical reports purporting brain death? That's what's so special. I am brain dead. To make it even more amazing, you get what came with me before...high intelligence and memory. So a brain-dead person is writing to you. I am having a very hard time getting my diagnosis changed because 'no one comes back from death.'

I can't get a second opinion because the first one was written in permanent ink. All I can say to all of this is, "I was never all the way dead!"

UPDATED 5/17/2017

Monday, January 23, 2017

New Estimated Lifespan

*Note- This won't happen with all strokes. Only strokes where brain cells are killed and then there is rejuvenation (neurogenesis). It is this rejuvenation that is controversial in me. They say it's not possible and I am still in a coma. Well, you be the judge. Am I in a coma?

Some of you may buy refurbished goods. I say it's the way to go with some electronics. Refurbished is the same old outside, but new inside. Some electronics are sold at a used price, but with a warranty. 

So here's how the math goes regarding my cells and life expectancy. I was 32 years old at the time of my stroke. It was a severe enough stroke to kill the brain cells affected. All lobes were affected but brainstem and spinal cord. While the unaffected area keeps me alive, Adult Stem cells I say my body released, go to work on repairing/replacing the damaged part. 

These new cells have an expected life span of 78.8 years. I use the CDC rate. Other sites have it higher. Now if you take 78.8 years and add the 32 I already lived, you get a lifespan of 110.8 years.

That might be why I don't have gray hair or wrinkles yet. I will get them. They were just delayed.

I just turned 47. I do not have gray hair or wrinkles. I had a severe stroke at age 32. My family was told I wouldn't live. That is not true. 

All stray gray hairs have fallen out. As a matter of fact, most my hair was falling out and growing at the same time. I remember handfuls of hair in my hair brush, but not appearing to show signs of baldness. (This started a year after coming home from the hospital.) Dark, curly hair has replaced my straight, medium brown tresses.

This changing from straight to curly hair sounds like it could be a DNA change. This hair change has happened in chemotherapy and is commonly called Chemo Curl. I am not on chemotherapy. My medications are not associated with any hair changes.

I have gotten comments that the stroke made me younger. It is possible according to some theory that I may have reset my clock. The math I give above could fit.

Like refurbished goods, I may have new parts on the inside and the same outside. Or, I may only be really young looking. Time will tell.


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Tuesday, January 17, 2017

I Don't Swallow


Talking without swallowing is the problem. Swallowing uses a lot of the same muscles. So, the thinking goes, if a person can talk, that person should be able to swallow. So this is troubling when I don't swallow.

My answer comes from years of early intervention:  oral aversion due to a medical condition. I was a program manager if that means anything.

How long has it been since I have eaten? I haven't had food by mouth in 14 years. After I had a brain bleed in 2002, a stroke, I had what I call a deep coma where my eyes were closed for 5 weeks. A feeding tube was placed at that time, by cutting a hole directly in my abdomen.

I opened my eyes around mid-January. I transferred hospitals around this time. I was tested on swallowing at that second hospital. For some reason I remember Jello coming out my nose. I thought it should have been green Jello. It was red.

I was made NPO at this time. It meant I was to have no food by mouth. My coma went from closed-eye to open-eye. I was made vegetative. A bit later, at that same hospital, I started making sound. I had been silent for months. Talking had been given up on, and a computer program was being tried on me. (As a side note, it was head activated. I used my head to hit a switch. I couldn't move my arms.)

All planning had to be changed. I went from non-verbal to verbal. I only got a few weeks of speech therapy, then I had to move. My private insurance ran out because it had what was known at that time as a cap. It is a political issue that may or may not return, but I don't have that insurance anymore.

I moved around to different places, always remaining NPO, or no food by mouth. Occasionally I got something to taste, but was never fed by mouth. I taught myself how to talk. I had some training as an Infant Specialist, but I was not a speech therapist.

When I moved to the town in which I currently live, I got a few speech sessions in a neighboring town. That therapist got me to do a few sips of water. At my last session, I successfully did Ensure.

Four years ago, I had a swallowing evaluation done at this local hospital. I could not swallow food. I was still no food by mouth. Recently I was tested again. I have a feeling that the limited speaking on YouTube videos and these essays have sparked that. Again I did not swallow.

For some reason these swallow tests are being used as a test of consciousness. I did not swallow, so therefore I am not conscious.

Some people are wondering why did I swallow 32 years before the bleed, had a break, and now can't swallow. The answer is I am starting that out all over again. That's what talking was...starting out all over again.

Something occurred after my stroke, probably within minutes, that I say was probably a release of my body's own Adult Stem Cells. These stem cells would not only repair all cell damage from a stroke, but it would also wipe clean the past 32 years of learning. From looking at pictures, the last 32 years of aging may have also been wiped out.

From the way that I explain it, not swallowing doesn't sound weird. It's an aversion of food placed in my mouth. All this takes to remedy it is some speech therapy. (It would have to focus on swallowing.)

The following video shows me speaking.

As of 1/17/2017, my feeding and all supplies were restored by Medicare.

Friday, January 13, 2017

Celebrating the Weird

"But one doctor questioned Maggie’s diagnosis and arranged for her to be transported to Weill Cornell Medical College in New York City. There, she was enrolled in a clinical trial aimed at understanding how the severely injured brain recovers. While using high-tech imaging to assess brain activity, doctors asked Maggie a series of simple questions. The responses showed, without a doubt, that Maggie was still conscious. During that same visit, one of the doctors got Maggie to respond to a question using eye movement. “They told her to look down for ‘yes’ and look up for ‘no.’ When they asked her if I was in the room, there was no mistaking it, she very clearly look down,” says Nancy.
No longer labeled vegetative, but “minimally conscious,” Maggie again qualified for rehabilitation"
"But before anyone can benefit from these new treatments, they must first be correctly diagnosed as having the potential to recover. “There are a lot of people out there who could be helped but aren’t,” says Schiff. “All patients should be treated as if they too have that same potential for recovery.” -True, but it doesn't happen. Read on. You will see.

So some have the potential for recovery. Hmm...that's probably me, but I now belong to the government. Now how often does government swiftly take action?

No doctor ever questioned my state. Instead I became a prized possession. A music therapist, "I was getting ready to play (in beds and wheelchairs [patients were brought in])….I wondered will these people even be able to hear music… A sadness came over me as I looked at them. They put Angela in a wheelchair right in front of me and told me I could start playing."

"No longer labeled vegetative, but “minimally conscious,” Maggie again qualified for rehabilitation"  This never happened with me. As you can see, I was put up front. I became the spokes person for the vegetative.

That place trained me to say I was "semi-vegetative" for my diagnosis. I thought this was a good thing. I didn't know it was just a morph of the words for "persistent vegetative state." I thought I was moving up from being vegetative. This was just an illusion.

People need to ask why I was left to try and recover on my own. Why wasn't I rehabbed?

Monday, January 9, 2017

Suppression of Evidence or I Don't Know

I learned sign language while I was in a coma.  

In the video I'm showing that the paralyzed hand doesn't always stay paralyzed. That would be my right hand. I thought this to be the big deal, but there is a bigger one. I am using sign language.

Years earlier I couldn't speak. I used those same hand movements, the alphabet in ASL, to spell out words with my other hand. At that time, no one knew sign language and the movement was deemed the spastic movement of PVS.

I never learned sign language. My children did as a pre-reading activity in school. Do you notice I only use the alphabet? I am only using the pictures they learned. I remembered them from long ago after I woke from a coma. Nobody knew what I was doing, so it was ignored.