Late Night Comment

It's a new day. I slept and my batteries recharged. I can write again.

I had commented on a post. Someone had replied, but I didn't get it. It was late and I couldn't type anymore. I remembered the comment line allowed a picture "or a video." I'd just record what I wanted to say.

The comment line uploaded but wouldn't post. I finally gave up and posted "?".

My original comment was, 

I have a report that says I'm brain dead.

Lights are off and

I use a table lamp.

Why I Need To Be Made Conscious

I accept my disability no problem, but it messed up my Medicaid. I had to go back in records. What I found.... 

I am not conscious. "Vegetative" was never changed. "Semi" was added later, but it still used the definition for Persistent Vegetative State. "Vegetative" is not conscious. If the person is awake, it is an open-eye coma.

To top things off, I may be brain dead. The term "brain death" was never used. My medical records list my demeanor at one hospital. These are the same criteria for brain death. My records go on since I didn't die. Is it only implied that I was initially brain dead? The original criteria is never refuted.

I receive Medicaid services for a vegetative person, also called a Vegetable. In California these services are called Medi-Cal. The services I receive are very basic medical services. I get less than others with Medi-Cal. Therapy is not included. Messing up my Medicaid back then when I had a brain bleed meant messing me up now to every day that will come until that Medicaid is fixed. I've gotten no rehab. Any future therapy I will need is already denied.

______________________________

A question was asked about trading your eyesight for an IQ increase, IQ Increase Question. "So maybe the first thing I will think of, will be to actually use my brain to restore my eyesight." I've done eyesight well enough to see my room. Lets Make a Deal recounts my eyesight recovery. The essay discusses eyesight rewiring.


I have other issues that I have applied my knowledge to. About two years ago, the GI Specialist for my g-tube commented that he just wanted to remove my feeding tube. It was getting infections at an extreme rate. I talk now. This would lead a person to believe I didn't need it. 

The problem is, though, I talk without swallowing. I never got Speech Therapy, or this would have been worked with along the way. Now you see me sucking on lollipops. I'll learn to swallow like the children with oral aversion I had long ago worked with as an Infant Development Specialist.

I do not get Speech Therapy. I am never to get Speech to teach me how to swallow. Just when I thought I had my speech up to a passing level, I find I have one more thing to do.


Walking is another big issue. People can see the wheelchair. I have posted pictures of me standing. Like Speech, I do not get Physical Therapy (PT). I taught myself to push to a stand. I figured if I could only get my body to be like the toddlers I used to work with then  PT would step in. Therapists want to now. They see something they can work with. Insurance, or lack of, prevents them.

 I stood long enough for the photo.

First off, I am not designated "conscious" on government paperwork. Unconscious people don't get therapy. Second, Medicare does not provide on-going therapy. I think it something short like 30-days a doctor can put a referral in for. The therapist can then request an extension. I've done this. It's too short of time to learn walking. This is one more issue for me to work on alone.



Fine motor skills are good enough for a pass. You can read this, can't you? I'm using only one finger, but that is all that is needed. An Occupational Therapist (OT) will tell you I need more, but they are used to funding being cut.



Obviously my cognition is off the charts or I wouldn't be writing this.

______________________________ 

Services for this population are piss-poor in this country. There is an underlying discrimination of disability. This probably affects that.

I am not conscious. Again, this is probably due to discrimination. I have a brain injury that makes me a "retard." I may be a smart "retard" but I am an unconscious one. That makes you better than me.

Since I cannot get consciousness any other way, I ask for a Presidential Pardon, https://www.change.org/p/president-of-the-united-states-declare-angela-conscious. Being made conscious will improve the quality of services I receive.

Back To Life

 

Some brain injury can cause brain death. "The idea is to inject the patient’s own stem cells into the spinal cord to stimulate the growth of neurons." https://www.bioedge.org/bioethics/controversial-trial-to-test-transhumanist-theories/12327

That's what I think happened to me...or some variation, probably caused by gravity, or some medical procedure.

Originally, I thought I may have spinal stem cells, caused by the bleed. I was told that the blood from the bleed "ran down your neck." What major bone is in the neck? The spinal cord is there. I figured I gave myself a spinal tap with the bleed. http://thoughtfulveg.blogspot.com/2017/06/sparking-imagination.html

This study is controversial because they want to do it on brain dead patients. You can't get consent from a dead person.

__________________________ 

Why is this man so happy? Why is he singing to me? He read my records from the first hospital that treated me. They don't outright say that I am brain dead, but rather list the criteria. That's a good thing for me because I would have one heck of a time trying to get that monkey off my back.

So, if I am brain dead, or significantly damaged, how am I doing this?

__________________________ 

There is also another issue to consider... whatever happened, "released my inner genius." My knowledge has increased as brain injury symptoms have decreased. Would this procedure universally unlock genius?

 

The Medicaid Shuffle Part 2

12/3/2020

Like I say at the end, "I ain't going back!"

The journey timeline goes as:

2002 Dec 16 Downieville, CA, clinic (stopped breathing)

2002 Dec 16 Grass Valley, hospital (not admitted n put on helicopter) 

2002 Dec-2003 Jan Sutter Roseville, CA, hospital, trauma center initial surgery

2002 Jan-2003 Fall Santa Clara, CA, hospital

2003 Northridge, CA, nursing home

2004 La Mirada, CA nursing home, not licensed

2004 back to hospital at Easter break with pneumonia, Santa Clara, CA

2004 (Spring-Summer) San Leandro (near Oakland), sub-acute hospital

2004 Summer unamed hospital in San Leandro/ Oakland area

SHTF

2004 Aug Stanford Medical Center, brain surgery

2004-2006 Mountain View, CA, hospital

2006 Merced, CA rental house

2006 - present Merced, CA, house next to family

Part 1 is at  http://thoughtfulveg.blogspot.com/2014/03/the-medicaid-shuffle.html. I wrote it a while ago.

Now I live in my own home. I got back custody of my kids and finished raising them. I sometimes talk on the phone and I pay my bills. I can mostly dress myself and depend on someone to hook up my feeding tube, place me in a wheel chair, and do routine household chores. I'm still unconscious and the state retains the right to place me in a nursing home.  http://thoughtfulveg.blogspot.com/2014/03/the-medicaid-shuffle.html

I speak well enough to ask for a court order before that happens. Umm...I speak. People will be doing a double-take. I was placed in hospital care and forgotten about. I left the hospital and have been hiding out in my own home since 2006.

A big reason for leaving is what I call the "Medicaid Shuffle." When my after-stroke ordeal started, I had already been in two hospitals, the trauma center where I had the first surgery, and the rehab hospital. The trauma center records are the ones that can be interpreted as saying I am brain dead. I've read them, though, and they don't use that specific term. It does have a medical term that can mean that in some circles. I looked brain dead at that time, and that's probably how they were interpreted.

Eventually the private insurance ran out. The hospital I was at moved me to a Medicaid bed. (The bed was actually called that!) I waited in that bed until I was moved out of that hospital. Initially I was sent to a care home that wasn't near family. That place sent me to another home a few months later. I was at the second home a few months and then ended up back in the hospital I started in. I call this moving the "Medicaid Shuffle."  http://thoughtfulveg.blogspot.com/2014/03/the-medicaid-shuffle.html

That's how the "shuffle" started. That's three placements right there.

I had pneumonia. The hospital that sent me to that nursing home fixed me up again and sent me to a long-term sub-acute hospital near Oakland (like across the street). I could look to the end of the block, and across the street was Oakland.

I ended up in another hospital a few weeks later with pneumonia and dehydration. I had to give a taped interview to a state investigator.

I don't count Stanford in the Medicaid Shuffle, but it was part of my journey.

July-Aug 2004 Surgery(s) at Stanford University Hospital. I stayed there a few days, but this is omitted from records because it's not government. They removed the AVM in my head that was to kill me. With this gone, of course I'm alive. The government omits it, so now it's a miracle that I'm still alive.  http://thoughtfulveg.blogspot.com/2016/11/dates.html

While having a procedure at Stanford, I was moved. The last hospital I went to was for over a year. When the unit I was in was closing, I didn't want to move yet again. I contacted a family member. I'm now in private residence. That original family member hasn't provided care since 2006. I rely on a local program and a daughter who is now 'old enough.' My father and nephew are next door if needed.

That was the "Medicaid Shuffle." I wanted to change their slogan to, "If the condition doesn't kill you, we'll move you around and make you die."

I AIN'T GOING BACK!

Not Brain Dead Or In a Coma

"A year ago, Mohammad Meshkin of California won a lawsuit that kept his daughter on life support and gave her the life-saving operation she so desperately needed." http://www.medicaldaily.com/comatose-organ-donation-brain-dead-misdiagnosis-coma-387079

What happened to this girl? That was me at one time. I just didn't do the lawsuit. I  got the needed surgery at an independent university as indigent. I also have some sort of "super" intelligence.

I'm skirting this like I did with high school. All you have to do there is ask how do I have college degrees but not a high school diploma. Now, you can ask how do I write all this stuff, but I am in a coma. (That one is easy. Some oaf goofed.)

Communicating With the Dead

Even if my diagnosis is not changed, I will not seek change through court order. Why? Think about this for a minute... Communicating with the dead is big business. That diagnosis has me as severely brain impaired. I was brain dead. People can now communicate with me. That's communicating with the brain dead.

If my diagnosis is changed, I was brain impaired by diagnosis. There's no changing that. 

I started working on my Near Death Experience (NDE) years ago. I've already made the necessary contacts.  You can't change that I was very near death. That diagnosis just leaves me there.

Very clear are these posts. A hallmark of the NDE is clear thinking. The NDE is a big area of research. "CONCLUSIONS: The mystical consciousness and higher mental activity during NDEs, when the brain is severely impaired, challenge current models of brain/mind interaction and may occasionally lead to more complete models for the understanding of consciousness."
http://www.scielo.br/scielo.php?pid=S0101-60832007000700015&script=sci_arttext&tlng=en
 
I don't have much to report during my initial stages of brain injury, but I have tons in the latter. This essay is in the latter. By reading this, you, the reader, are communicating with a severely brain impaired person.

A person who communicates with the dead:

It is odd, but I have a lot of those attributes now.

Changing my diagnosis won't make much difference to me. It does to researchers here in the medical field. I'm in a coma by current definition. The vegetative state was made a coma. I am vegetative. That means I am not conscious. I can't give consent to be studied. Services to the vegetative are drastically cut. Besides no therapy is no research.

I will go forward in NDE. The life-style isn't too shabby. http://www.blogtalkradio.com/psychiclifestyles/2015/10/08/near-death-experiences  I've already been talked about in a different on-line radio program. There will be more.

I know I'm mentioned in this at 7:16. My name is also at the beginning on the second page at a few seconds in:

 
I'm not looking out for me regarding this change. I'm already taken care of. No, I am looking out for the scientists, researchers, and survivors of brain injury. A researcher once commented on my selfless disposition. I believe that quality can be attributed to the NDE. It may be number 13 of http://braininjuryknow.blogspot.com/2014/06/brain-injury-and-near-death-experience.html  "13. More loving, caring for others." It may be because I am still brain impaired. Maybe I am gullible. Whatever the reason, people can communicate with a real live once brain dead person! Like I said, I may charge an entrance fee to my house.

What's So Special?

Why would a doctor do this? What happened? 

   Dr Melvin Morse

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...

CLICK

On determining brain death, 3i of https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2772257/ 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.

decerebrate

 [de-ser´ĕ-brāt]

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

I Question the Definition

"In exceptional cases, prolonged support is possible as long as oxygenation, circulation, nutrition, and treatment of multiple medical complications is provided," they write.  http://www.medscape.com/viewarticle/832001

It's going on 12-years that I have had a feeding tube. I was on a ventilator at least 8 months. I breathed through a tube in my neck for 3-years. I spent 1 more year breathing through just a hole in my neck. The neck hole can be viewed at http://thoughtfulveg.blogspot.com/2014/04/my-hole.html

I should be in medical care...but I'm not. Those needs are provided for in other ways.

I was in a deep coma 5 weeks. One friend described that it looked like I was sleeping. My family says they were told I was "brain dead" when I opened my eyes. A bit later I was  PVS, persistent vegetative state. "Persistent" turned into "Permanent."

Permanent stuck. I now talk. I never met any vegetables that talk. I'm now moving my paralyzed arm. The arm I am typing with was once paralyzed.

Brain death didn't fit. "...California's Uniform Determination of Death Act.That Act states that an individual who has sustained either irreversible cessation of circulatory and respiratory functions or irreversible cessation of all functions of the entire brain, including the brain stem, is dead." http://www.medscape.com/viewarticle/832001#2 My heart was still beating at the time that was said. A ventilator did my breathing. I still get nutrition through artificial means, a feeding tube. (I believe the feeding tube still qualifies me for nursing care.) I did not respond to my environment. (I do now, obviously.)

The  word "decerebrate" is used in a report. Was the word interpreted as no cerebral function? The entire term used was "decerebrate/decorticate posturing to pain." This describes motor quality, not brain function. The report is the initial hospital transfer record from Sutter Roseville.

A while ago, I received a letter explaining that what I am experiencing is also called a coma. http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html So I am currently in a coma. I would say I am experiencing recovering paralysis. (In my case only. I cannot comment on something I don't know.) Yes, that would mean what was called PVS was total paralysis. As I recover, I am able to do more and it looks miraculous

Now for PVS... This state wouldn't have meaningful conversation. There definitely isn't any writing in this state. "Moreover, if this person is typing full fledged sentences with complex thoughts they have moved beyond the minimally conscious state and into something akin to "locked-in syndrome" or what might just be called severe paralysis," Gary Williams. Locked-In Syndrome is what my family thought I had when I didn't talk. Others have said it, too, but I never got a formal diagnosis.

PVS may have fit at the beginning, but not now. I question the word "permanent." A rare disorder has been forgotten. If it is applied in this situation, questions can be answered. Certain words/terms can't be used.

I make this journey, not you. Ask me if you have questions.

Hear Ye! Hear Ye!

THE WORLD IS FLAT.

This probably isn't how it went, but if people heard it, they believed it. We now know this not to be true.

Now we are hearing something else in the news, Brain death equals body death.  "I heard it, so it must be true."

 

So I think for myself and I question authority.  A while ago, it was said I was a vegetable. I questioned authority. I asked "What kind of vegetable am I?" in print years later when I could type it out. It was distributed around the country, http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20090708/index.php#/10/OnePage    It brings all this stuff into question. (I couldn't speak it then, and now it wouldn't be understood by all as my speech is not that great.)

Here is something many of you do not know, http://braininjuryknow.blogspot.com/2013/04/getting-there.html  The brain takes a step back. The research is there, it's just not widely talked about. The link just takes the current research and makes it understandable. People with brain injuries could do something one day but not the next. Obviously they were  stepping back the day they couldn't do it.

So what is brain death if the brain is only stepping back? Well the brain may not be dead after all. It's not responding. "The nerve fibers from the cells were severed, but the cells themselves remained intact," http://usatoday30.usatoday.com/news/health/2006-07-03-brain-rewired_x.htm We can't go by what we heard in the news. It's just hearsay.

If you ask my family, they will probably say they were told I was brain dead. What I say is secondhand. My parents should be interviewed while they still can answer. Medical records will not reflect what they were told.

I'm not going to tell you if brain death is the same as body death. That is for you to decide. Besides...I'm still trying to prove I am actually conscious.