I Should Get Services

To deny that I am conscious is only to hold back progress.

I, too, think I should get OT (Occupational Therapy), PT (Physical Therapy), and SLT  (Speech and Language Therapy), in addition to the nursing services I now receive. I can only forward this comment.

Obviously I am talking to you. If I was vegetative I wouldn't be able to do that. Vegetative is considered a coma with the eyes open. I am not in a coma. I am not vegetative. Something else has to be given as diagnosis.

I think my diagnosis as "semi-vegetative" has thrown everybody. It allows a vegetative patient to talk. Contrary, "Minimally Conscious" should have been given at that time. I doubt I am still minimal 15 years later. A whole stage wasn't tracked other than my posts. Someone better get these in case companies fold.

Even if my local university can only document, then they should. It is crazy that there is absolutely nothing other than what I do myself. 

My case isn't a right to life issue anymore. Now, it's to see how far a person can go. My issue has no borders. Other countries click this blog. This is for humanity, and humanity is losing out right now.

Getting My Story Out

"It was an honor to tell Angela’s miraculous story in my Merced Sun-Star column" -Mike Tharp.
 

The article was scanned. The direct link doesn't work anymore, but  I put the article in this story,  https://thoughtfulveg.blogspot.com/2012/02/angela.html My music therapist scanned it for an e-mail.

I made the therapist's e-mail into a story. He gives his first-hand account of me. He saw that I was placed with the vegetative patients and that I had started talking. He saw that I was put up front to show off my success. (Unknowingly, the hospital was showing off a grave error. They were showing off that I was misdiagnosed.)

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I don't know why the government STILL says I'm not conscious. It doesn't look good. It looks like they are hiding something. It looked like they were hiding me.

It doesn't make  any sense. I can give the first 5 years to honest mistake. The second set of 5 years should have been investigation. What is the third set (10-15 years)? I'm now on  my way to 17 years. There's no excuse.

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This is the problem with the government's cookie cutter policy. Other cases are not like mine. Every brain injury is different as is every brain. We are individuals.

Saying that we are individuals can get me in trouble. Yes, people as a group are alike in many ways. Each person, though, is unique.

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My brain injury was repairable. I wouldn't immediately have regression and die if I was given the proper treatment. I had to find the independent university that would do this. Stanford, this university, was never given any credit.

What you have been seeing is brain growth. It's slow and methodical. I am not recovering lost skills. I am re-learning them. I'm a fast learner (but it's still years from my injury.)

Closest to Mine

I had a brain injury, but I am smart. I once told someone that I should be "mental mush." People have a hard time understanding that a brain injury can make you smart. It's very rare,  but a brain injury can make you very smart.

Here is Jason Padgett's story.

Now his story is the closest to mine, from the brain injury to now. Before that it was like Doogie Howser and Malcolm in the Middle in childhood. Young adulthood doesn't have anything, although I suppose that if a young Doogie had dropped out of school, went to his local community college, and did psychology instead, you might have something. Oh yeah, Doogie would have to be female and have to have a couple of kids.

Doogie Howser

High School was 2 1/2 years for me.

Malcolm  in the Middle

 I was smart but fit in socially.

I had a stroke not a mugging. It was caused by a blood vessel in my head leaking blood, not the clogged arteries warned about. I also had very low blood pressure. So this is rare and unusual.

I had a bleeding (hemorrhagic) stroke.

Substitute a story for a picture. Jason Padgett sees geometric shapes and will draw them out. I will write, mostly about my experience, but there are a few other things out there. Jason is Pythagoras to my Shakespeare (Remember school?).

I will try to include neurological concepts. I've experienced so many that it just fits that I put them in my experience. My life story becomes a learning experience.
 

My brain injury happened the same year as Jason Padgett's injury, but I am not studied. My injury was much worse. My heart did stop. I wasn't breathing. It can be said that I died. Stop right there. A lot of people thought I was dead. When I came out of a coma, I appeared brain dead.

Surgeries were done that I wasn't expected to recover from. I did. It's been a long time recovering. I currently am "semi-vegetative." Technically, vegetative is still a coma. The eyes can be open, but recovery is not there, yet.
 

I'm still not done, but I write now. I WRITE. Obviously, I'm not brain dead. I'll most likely also go back to school. I'm not at that point, yet. So I don't make plans.

Neurogenesis is a Process

Without trying to sound like a total nut, I put my ideas forth. I do not have a lot of the evidence because I am in a government funded insurance program. I can only give gut feeling and my existence as proof. I ask for an MRI. They can't pay for that. I am writing, but all my brain lobes supposedly died years ago. I want to know what I am using.

The NDE probably enhanced what was done right in the initial surgery. Records aren't too clear. For example, I was treated for hypothermia (my body was cold). I doubt that I had been left outside in the snow. It was more likely that my body was chilled for surgery. I believe cooling the body is one of those right things. It's good I got surgery.

"Dead genes" turn on after death and do a lot of repair and emergency work. I had an NDE and had artificial respiration for a few months. My body probably thought it was dead. These genes would have turned on. http://reallifescifi.blogspot.com/2017/10/my-undead-genes-turned-on.html

I also have an undiagnosed disorder which is probably savant syndrome. I've been smart since gradeschool. I wasn't your typical poindexter geek. I was sickening smart, but social and earned nicknames like Brainiac. This disorder allows me to live outside a superbug factory (hospital) and probablly give better care. Oh, do I still have a lot of medical issues! I just don't need surgery.

I was a child genius that went on to other

things, namely this.  I was NOT a doctor.

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You are probably seeing neurogenesis. It's not a one time thing and it's done. It's a process. It's more like repeated neuroplasticity. In me it has lasted years.

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LOLLIPOP THERAPY

That's what I am calling it. It falls under oral motor exercises done with children. This is speech. You will hear my speech improve.

Something interesting has already happened since I regularly started sucking on lollipops. Heartburn has stopped. Ever since getting the g-tube, there have been problems with acid and formula reflux. Put it in me, and some would come right back up. This stopped with the introduction of lollipops.

I assume the flap from the esophagus to the stomach is stronger and is staying closed. A swallow study with a barium lollipop would be helpful, but those lollipops do not exist. One would have to be made.

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Neurogenesis may be more readily seen in me due to this undiagnosed disorder. The disorder magnifies it and then I point it out. Neurogenesis most likely is happening in others with brain injuries, but in subtle ways.

I'm not in a coma, and BOOM one day I am awake. That seems how it happens, http://thoughtfulveg.blogspot.com/2012/11/seeing-obvious.html.  No, I am still in a coma. I bet that the "vegetative" people who are now showing signs of consciousness are just experiencing neurogenesis to a lesser extent. Maybe, BOOM, one day they will be conscious.

I've said it before...

"Their quantification of white matter reorganization shows long-distance rewiring in posterior medial cortices, possibly reflecting axonal sprouting or neurite outgrowth, maybe even related to neurogenesis " happens to be Steven Laureys describing a man who was MCS, but started talking nearly 20 years later. What he is saying is that tiny nerve fibers grew and rewired. This is most likely going on with me. http://thoughtfulveg.blogspot.com/2017/08/not-fast-enough.html

Growth does not happen overnight. So far it has been years in me. There's no BOOM.

A Resilient Child Grows To Have Grit

My mother, Myra P Metz was a major contributor to this.

 - Angela 

Back in 2004, after the craniotomy at Stanford, the neurosurgeon told me to now expect my usual brain development. Big smiles from me. I knew it wasn't usual. My  mother can tell you about my development. I'll just let you know I remember giving instructions on how to get home from my car seat.

"...you had a foot that was more dominant and one foot that turned and dragged. You had to have a special shoe." It goes on. "Also your eyes didn't focus well and one eye drifted. You also used to bang your head on the wall purposely which is kind of autistic-like."

"You were very early with using language and making the connection for abstract symbols and language. Your memory was like photo imagery."

"One thing you had very little of was patience.  You were always obsessed with how things worked and you used to dismantle things in the house to see how they worked. I think you were the one who took apart the window crank opener when you were two by climbing up on the dresser."

I remembered taking things apart.

I loved this show as a kid. He'd use parts of things.

I had a pink transistor radio like in the image. I would regularly take it apart.

When I was 18 I got an old car, a '68 Chrysler convertible. This thing was huge! You could probably seat a family of 5 in the front seat alone, although there were only three seatbelts. I'd take this thing apart and put it back together. I can rebuild a carburetor, but that's a lost skill now.

"There was another thing I just remembered from your early development. You never crawled." I'll have to check on  this issue, but never thought about affects.

"Most babies go through that stage where they get up on their knees and propel their torsos back and forth, but you never did that. You would lay on your tummy and it looked like you were swimming but never got anywhere. To get someplace you would roll your body. Then you would pull yourself up once you got to a spot where you could hold onto something. You took off walking at 12 months, but you never went through a crawling stage which I understand is very important in the development of other body and brain functions."

From what I remember, crawling is important for reading. I was an early reader. I must have got the skill to read across the page elsewhere. I'm thinking music gave me this skill. I could read music first. It's okay to get skills elsewhere.

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The description of the child sounds like brain compromise. Knowing I had that AVM, it probably bled in early childhood. Here is the first brain injury.

I did very well. I did extremely well! I started playing piano! I was a resilient child.

My Talent
(click)

Don't compare me to a rose.

Don't compare me to a rose. Compare me to a dandelion that grows through the crack in a sidewalk.

I'll probably be compared to Terry Wallis, but I am a great deal smarter. http://usatoday30.usatoday.com/news/health/2006-07-03-brain-rewired_x.htm

Maybe I will be compared to Jon Sarkin, but with a worse brain injury (acquired savant syndrome). We both had strokes in the cerebellum of the brain. I don't paint, though. I write.

I like this video because he describes that he was bending over to get a golf tee. I was bending over to get garbage off the floor in my car. I had an accident earlier and the car would have to go in the shop.

I was very close to death. What this woman went through will have to be included.

*NOTE-

I did not have the vision, but was near death and had a miraculous recovery. http://thoughtfulveg.blogspot.com/2017/08/angela-ronson-part-3-how-our-brain-is.html

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"Far too often, [vegetative] patients ... are given up for gone, left to languish in nursing homes where no one bothers with physical therapy or even to check for glimmers of regained consciousness."It goes on, "That’s at odds with a growing body of research showing that many patients with no outward signs of awareness retain some degree of consciousness." http://www.wired.com/wiredscience/2013/02/searching-for-consciousness/


I don't feel like I am "languishing". At times I will get angry and frustrated that growth is slow. That means I am still progressing. I obviously am. The first seven years went by before anyone heard from me,  Stroke Connection magazine p. 9.

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A rose didn't struggle to grow where it wasn't supposed to. 

The quote by E.V. has many pictures and is attributed to E.V. Thompson.
https://en.wikipedia.org/wiki/E._V._Thompson

I'm a UFO

I'm a "UFO of neuroscience." (3:20)
 

 
This is long. I got some information from it. It shows that various brain disorders, including brain injury can result in "islands of genius." Genius might not show up on an IQ test.

This slide is at 13:17.

Process after a brain injury that makes a genius.

After there is a brain injury, there is rewiring. Then there is "release of dormant capacity" that is genius.

Doesn't rewiring happen after most brain injuries? Geniuses are rare, but brain injury creating a new talent is more common...and not given any credit. Like it has been said, I smell the cookies before the package is open. That talent wouldn't be very common. It may be that my brain is very good at filling in missing information. It's adding the smell when I see the package. Maybe my nose knows. Whatever the reason, the talent is unrewarded.

Most brain injuries may be getting a talent. They are just not getting the genius targeted by Savant Syndrome.

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I do not have savant syndrome. While I was in a coma, I was diagnosed to forever be in a coma or vegetative. I did have a brain injury, though, and I am a UFO, so to speak. I am an oddity.

Soup

From what I can figure, there was a mixture of factors going on in my medical case. To lump it all together and say I'm in a coma won't work. Obviously; could I write this and have deductive thinking if I was in a coma? I'll elaborate on a post, "This is a biological issue that I think savant syndrome helped cause. A stroke isn't enough to wipe out cell info. Something had to be present to reprogram. It doesn't stop there. The NDE turns on the learning window- the "undead" genes." I then link to a story on undead genes. https://reallifescifi.blogspot.com/2017/10/my-undead-genes-turned-on.html

First of all, I just didn't have a stroke all alone. If the entire ordeal was just a single brain injury, I would have died soon after I stopped breathing. I never would have been taken down the mountains. I never would have been flown to a trauma center.

Second, Savant Syndrome has to be present PRIOR to any head injury. I'm writing this that's proof that it is there. I say Savant Syndrome had to already be present. I believe the syndrome actually kept my body alive for hours until it was brought to a trauma center. It's responsible for me waking up and waking up fast. 5 weeks doesn't sound fast, but 5 weeks to open my eyes compared to never is very fast. Signs of Savant Syndrome can be traced back to my childhood. I was found to be extremely intelligent at this time, but still within Advanced Placement.

Now I had a brain injury. My memory is completely wiped out (at the time of incident and not now). Determining an NDE occurred would have to be made by a professional used to having non-verbal and limited speaking clients. Now I could speak some by the time I met Dr Morse, but I didn't remember any NDE. I have little memory of the day I had the stroke before I lost consciousness. I only remember the sound of an alarm while my eyes were closed (the ventilator). I only remember "seeing" the pastor of my church immediately after initial surgery. (Technically, this would not have been possible for me.)

I believe the NDE can turn on what have been called "undead genes." The NDE and Savant Syndrome combination then re-build the information in the cell. All this information, including age-related damage, is taken by the stroke. The stroke actually kills the entire brain cell, not my entire brain. That combo of NDE and Savant Syndrome not only saved my life, but rebuilt it.

Living a longer life would be a side-effect of the 

repair of my injury.

The NDE makes an environment conducive for learning by turning on the "undead genes." It opens the learning window. This is where a new, blank cell would be made. Savant Syndrome is then able to go to work and rebuild the information in the new cell with the old cell DNA. This reprogramming is like we saw in the movie Jurassic Park, but man provides a new cell and the DNA is millions of years old in the movie.

I am a soup of neurons and genes. Not just one factor can determine the entire injury I had. The recipe saved my life. If you only have the "S", you can't label it. "SO" I open my eyes. You look a little silly calling it "S". Now other factors turn "UP". You really look silly calling soup "S".

Somebody really looks silly saying I'm still in a coma.

Brain Injury Medicaid Waiver in California

I was given the link for the brain injury Medicaid Waiver in California, http://www.dhcs.ca.gov/services/ltc/Pages/In-HomeOperations.aspx

CLICK TO ENLARGE

I had been having issues with a share of cost. I figured I'll just Medicaid Waiver the whole thing and be certified I should be in a hospital. Then that would be waived. That diagnosis that says I am a vegetable comes in handy.

I am met with, "We haven't seen this so we don't have to do it." This county had a different way of handling my issue. A family member went in and got the share of cost lowered if I purchase separate insurance.

So what's the deal with the brain injury Medicaid Waiver? We got it for a bit and then it was taken away? Is this only good for some counties but not the one I live in? It's not the local workers' fault. There could be some state policy they are not aware of.

There are brain injury Medicaid waivers available in other states. These are new with most workers. Give them some leeway. They are trying to find the best program available for you. Check with your state if there is a Medicaid Waiver available to you. The one above is California only.

This is not for everyone! Remember I said I had to be certified as hospital material? "Medicaid Waiver programs help provide services to people who would otherwise be in an institution, nursing home, or hospital to receive long-term care in the community." https://en.wikipedia.org/wiki/Medicaid_waiver The person applying must be eligible for a "home" or higher. I was looking at these forms above. The medical form is 12 pages long!

This isn't easy. If anyone knows anything, please comment or message me.