Saturday, December 31, 2016

Yes, I Speak



This goes with the video. It was too much to read out loud at one time. I talk throughout the day, but it isn't more than the following 5 sentences at a time. The rest of what I wanted to say is written in the last part.

 _______________________________


People have asked if I speak. Yes, I do.

That is an issue that was never fully investigated. Initially when I woke from the coma, I did not make any sound. There is a link in the description describing the incident. This is as much as I speak at a time.


 _______________________________


One day I made sound. It was many months after my coma. The speech therapist was shocked! I had an upcoming appointment for an ear infection. She accompanied me to the appointment and had me scoped. She wanted to know where the sound was coming from. The doctor determined everything was normal. I remember him saying, "Why shouldn't she [make sound]?" 

My insurance terminated soon after. I became government responsibility and government never investigated.

I formerly did Early Intervention for toddlers and babies. I had some speech training, but I was not a speech therapist. I've done what I could. A therapist can probably do better.




_______________________________

1/4/2017  This shows the importance of continued speech therapy. It is not something to be brushed under the rug.

Wednesday, December 28, 2016

Keeping You In Thought




My hands are open. 

It wasn't always that way. At first they were closed. They were shut tight in fists. It's taken forever. Fourteen years isn't forever, but it sure is a long time. It's long enough for my children to grow up and for some people to die.

I had been getting stories out like this for seven years when a photo was taken on Mother's Day. My daughter was watching a friend's baby.


I expected to see my left hand open, not closed in a loose fist.

Now we get into Jung's theory of Collective Unconscious, or just "Collective Conscious" like many have used.

However by far the most important difference between Jung and Freud is Jung’s notion of the collective (or transpersonal) unconscious. This is his most original and controversial contribution to personality theory. This is a level of unconscious shared with other members of the human species comprising latent memories from our ancestral and evolutionary past. ‘The form of the world into which [a person] is born is already inborn in him, as a virtual image’ (Jung, 1953, p. 188).  http://www.simplypsychology.org/carl-jung.html
 
The picture was on social media. I complained about my hands. The picture had forty-one LIKEs and one share. At least 41 people saw it and read that I was working on opening hands.

That means I got at least forty-one positive thoughts from others. People were keeping me in thought.

Have you heard about the 'Power of Prayer'? Well, 'Power of Thought' is the same thing that doesn't conform to the regulations of a prayer. 

When a large group of monks meditated for peace (thought long and hard), city crime decreased Washington crime reduced by 23% by TM group in four weeks. Now this a correlation, but it's a good one.

I had a large group of people on the internet thinking about me. They were focused on one specific aspect. I possitively reached my goal. It's a correlation, but it's a good one.
______________________________
  

Let's put this 'opening of my hands' into perspective. I keep saying that I am slowly getting better. Some might look at the two photographs and think, "7 months to open hands. That is a long time."

The thinking is wrong. I really haven't been opening my hands since before my incident. My incident was in December of 2002. It's now December 2016. That means it took fourteen years to open my hands. THAT IS REALLY LONG!

Can I get an applause for staying focused for so long? Fourteen years is a long time.






 

Sunday, December 18, 2016

Is my body still in a coma and my mind awake?



Is my body still in a coma and my mind awake?

Where would I get such an idea? Take a look at the beginning of my last story.
It deserves to be front page news.  Medicare withholds food of a comatose patient to await a swallowing evaluation. They screwed up and made me comatose. I'm not worried about food but how to get it in. Rinse and re-use supplies risks infection. http://thoughtfulveg.blogspot.com/2016/12/im-not-going-to-die.html
I am experiencing problems where some say I am awake and aware, while others say I'm in a coma/vegetative. (FYI Medicare, swallowing is not it. You cannot determine a person is out of a coma if they can all of a sudden swallow. On the contrary, your actions could be detrimental to someone not as lucky as I have been. What if the person aspirates and dies? That makes your job easy.)


I tell an entire story of how a nurse talks to me like I am vegetative and I answer back like I am not. http://thoughtfulveg.blogspot.com/2012/02/a-special-kind-of-stupid.html

This happens quite a bit.

A music therapist relays this:
The below story is about my friend Angela; an amazing woman. I first played guitar for her when she was in the Sub-Acute area of El Camino Hospital. A nurse one day begged me to come and play for the people there that had no hope. They were what are referred to as "vegetables" and when I first saw them pushed into the room I was getting ready to play (in beds and wheelchairs)….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. While I played Angela said to me, " I used to play that song on piano." I was shocked that she was able to speak and carry on a conversation - even though she was a little hard to understand in the beginning, http://thoughtfulveg.blogspot.com/2012/02/angela.html

It now makes me wonder "where" I am. I am not talking about my body's physical location. I am talking about "locality and non-locality of consciousness" that philosophers and other professions (such as physicians) think about. Sometimes they think about it in their spare time. I think about in a lot of my time. Where is mine and how do I get it back?
 
I am asked what is "non-local."
This is.

____________________________

I must be one of these,

How Some Patients in a Vegetative State Can Retain Awareness, Despite Appearing Unresponsive

http://neurosciencenews.com/vegetative-state-awareness-neurology-2993/ 
 
I somehow have come back from a vegetative state that wasn't recoverable.

I go back to my original question:
Is my body still in a coma and my mind awake?

The answer is no.

Instead of swallowing, look at these blog posts. You can probably tell I've gone from semi-vegetative to full consciousness. I started going through them a while back. Many of the first ones sound the same. I already had to be conscious to write in the first place. This is why I don't like the term "semi-vegetative." It implies part consciousness. There already is a term, Minimally Conscious State, or MCS. So when you read these, it would be "yes, she is fully conscious."

My body is disabled not in a coma. I would not magically instantly swallow. Medicare should be providing speech therapy. This doesn't happen. Instead I am left on my own to figure it out. Sorry, but I am not there yet. I am conscious, though.

Now how can I make such a statement? I am a psychologist that is currently unemployed. I last worked for the Sierra County Department of Mental Health as a Behavior Intervention Specialist, a behavior therapist.



Savant syndrome? That's a good possibility, but I will leave that  to others. This already looks like a manifesto. Where's the neuropsych? I've yet to see one.

Medicare has neuropsychological services.

Thursday, December 15, 2016

I'm Not Going To Die

It deserves to be front page news.  Medicare withholds food of a comatose patient to await a swallowing evaluation. They screwed up and made me comatose. I'm not worried about food but how to get it in. Rinse n re-use supplies risks infection.

I don't need to be rescued at this moment. If I go without food, I will. My emergency supply runs out next month, probably 1 or 2 weeks in. (My daughter was saving because of the coming zombie apocalypse. She watches a lot of TV.) I run out of feeding bags in 4 days. After that, I am fed by hand. It's the emergency bolus feeding. I found a picture.



The cost of feeding me is not an issue for the government. They can make one less bomb if it is. I'm being metaphorical, but you probably catch my drift. You adjust your budget as needed.

____________________________

I won't starve to death. All of my medical coverage wasn't stopped. I will be hospitalized before that happens and food will be reinstated under a different part of Medicare. It will be under the hospitalization part.

Which is more cost effective:  feeding or hospitalization?
 
Medicare/Social Security decided to handle this all on their own. My case should have been given to the National Institute of Health (NIH) long ago. I argued about being vegetative and being on my own. I was told I could as long as I'm not in trouble. It's funny but they are the ones now making trouble.

The bottom of this has the original e-mails with Centers for Medicare and Medicaid Services. I deleted names back then. Hopefully I didn't delete anything important. http://thoughtfulveg.blogspot.com/2013/02/im-still-vegetablethat-handles-money.html


Long ago there was a song about feeding 
the world at Christmas.

Friday, December 9, 2016

Fools! Bureaucratic Fools!


"Fools! Bureaucratic fools! They don't know what they've got there!"



The audacity! The stupidity! I don't know what to call it. Supposedly I am in a coma, unconscious to the world, and my food is cut off until I submit a swallowing evaluation. Where is the logic in that?

Here is where it says I'm in a coma. I took out every hospital name. It's me, all me, and I don't have any legal problems with myself. "I" am sharing "MY" information and I won't sue myself.

CLICK TO MAKE BIGGER

 I keep getting asked what my GCS was. My GCS, or Glasgow Coma Score, was 3. That's the lowest you can get and still be alive. "Having no respiratory drive" means I wasn't breathing. I've written and have pictures of the hole left by the ventilator, http://thoughtfulveg.blogspot.com/2014/04/my-hole.html 

The person described is dying. She's not going to make it.

Something happened.

Now I am writing this. I write a lot of things. I somewhat talk also. This is blowing people away.

I'm not like I was pre-bleed. I'm not like that description above. I'm not like I was when I left the last hospital I resided in. I now have movement in my left hand and I am writing. That didn't happen in any hospital.

I don't appear to be in any coma what-so-ever!

I was in a coma from 12/2002 - 1/2003. My eyes were closed, and I was told I looked like I was sleeping. I have then been vegetative until present. The vegetative state is being called a coma. Maybe the last hospital should have changed that when I left, or maybe they thought I was finally going to die. Well. I didn't.
______________________________

Now this completely gets me...if I am unconscious, how do I swallow? I currently have a feeding tube. Formula is placed by a caregiver into a special bag and it is hung. It looks like an IV. (This also isn't normal outside of a medical setting, but it does happen. People do go home from the hospital with serious medical problems.) Why would Medicare decide now that I need to have a swallowing evaluation in order to get formula and feeding tube supplies?

Dear Medicare,  WTF?





_________________________________


Everywhere I went (after the bleed), I was going to die. That should have changed in 2004. In 2004, I had surgery that took the death factor away. All this other stuff (progress in skills) has been on me. It's mostly exercise. The government doesn't pay for anything extra. I only have a few things I paid for or got from a friend. My prognosis should have been changed in 2004 and it wasn't. So what you have now is a miracle.

Again, bureaucracy prevails. An entire surgery is omitted because government didn't pay for it.



Thursday, December 8, 2016

Determing Fate


The Bleeding Brain is clicked on quite a bit.



What does it tell you about me? It shows that I am aware and I know what is going on. I am very smart. I can recall a question from an exam I took over 20 years ago.

It tells you I specifically worked with brain bleeds.

I had a brain bleed. 

Is it predestination? It makes one wonder... or is it coincidence?

How is fate determined?


Sunday, November 27, 2016

Dates


UPDATED 12/12/2016


My GCS was 3. http://thoughtfulveg.blogspot.com/2014/10/the-medical-records-of-horror-story.html

This is very close to death. I should have died right then and there. I was already on artificial respiration. My heart did stop later, as records reflect I was resuscitated in surgery. Amazing as it is, I am able to go through these now. I can also recount my lengthy hospital stay.


I'll put dates here to give people some idea.

I lost consciousness earlier in the day this started at a clinic. I was taken to a hospital by ambulance, and that place put me on a helicopter to a trauma center. (12/16/2002)

12/16/2002 - Jan or Feb 2003 Roseville Trauma Center I was in a deep coma, my eyes were closed, after that initial brain surgery.

Beginning 2003 - Sept (maybe) 2003 Santa Clara Valley Medical center (SCVMC) in San Jose

Fall 2003 - Easter week 2004 Two (2) nursing homes in South California

I got sick and went back to SCVMC in San Jose.

A few weeks later they sent me to St Luke's Sub-Acute in San Leandro, CA (Oakland)

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.

Aug 2004-March 2006 El Camino Hospital in Mountain View, CA.  http://thoughtfulveg.blogspot.com/2012/02/angela.html
The pictures from the music therapist are in this hospital. The newspaper article is in my current residence.

From March 2006 to the present I have been in private residence.

My children moved to where I am, in 2010. Prior to that I was alone.

I was in supervised care 2002 - 2006. I think I was sent home to die. They said I wouldn't make it to age 40. I will be 47 in Jan 2017.

In hospital care 3 years 4 months actually happened.

The editor of Neuroscience News tried to help me get medical care beyond the bare minimum I'm given. For instance I do not have a neurologist. He met snafu and I realized government records still have me in coma. No wonder I don't get anything! (I was to die. People dying don't get much.)



*Note:  These songs just come to me.
I don't know these people and I may not 
have been born if this footage is before 1970.

Tuesday, November 22, 2016

Different Disorder Same Strangeness



I was asked if my ordeal was like that. Yes, it has been very much like that.  I am so intrigued that I am writing about it. 

I didn't see anything. There were no lights or tunnels. I didn't have friends or family "on the other side."
 

I do remember seeing my pastor. He was praying for me.

There is absolutely no way I could have seen him visually! I was completely out. I just had the first brain surgery and by accounts, I was not stable.

Recovery for me has been odd. In the video, recovery for the woman was odd. Hers wasn't instant, but it was much faster than mine
. This all started with the NDE. That's the big common factor. Hers also started with an NDE.

I'd have yet a different explanation for the biology. It's the same as what is going on here...and we have totally different disorders (or had. Mine is becoming less and less also.) "WHY" I can not say. 

The reason for getting better would be a release of the body's own natural adult stem cells. That would be the reason for most all miracle healings where there is a Near Death Experience (NDE). Release of adult stem cells may be tied to the NDE. This concept has yet to be explored.



 How many of the amazing healings
are due to the NDE releasing innate
adult stem cells?

Friday, November 18, 2016

I Am A Winner!


What has been the highlight of your health activist journey? We want to hear all about it, perhaps a conference, a podcast or meeting a fellow HA. What made this experience so special?

 



A while back I won a contest. I was given a choice of two software programs I chose InSight, or the one focusing on vision.

The company is known for brain training software. I knew of some things, like the following:




They no longer offer this individual package. Instead they have these games integrated into their on-line program.




 There's nothing like winning a contest!



Sunday, November 13, 2016

On The Next Day...

Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end and tell Tuesday why you’re ready for it.


It gets me down that I am unconscious on paper. That burns me. Anyone can see that I am aware.

The question posed says turn it around. I will. Time will eventually do it, but I will paint out for you what will happen....

I have been too disabled to get my story out. It took me seven years, yes seven (7), just to get something in Stroke Connection, the American Stroke Association's magazine.

Stroke Connection p. 9
The link only goes to the magazine.
The article is on page 9 (8 if you have the actual magazine).
 
I'm still very disabled, but I am able to get a written word to the public. I continue this with a blog. I have two main ones now, but the one getting attention has all my ideas.



I keep getting better. It is very slow, but I do. People keep thinking I have stopped, but I haven't. Now I'm making videos.
 




Now let's take history and make a prediction. These stories get picked up, or maybe my life story in general. I am not conserved nor do I have a legal power of attorney. I make all decisions. I will generate income from this. 

Here's the turn around that will get big attention. I am legally unconscious. I am not supposed to garner income. I don't have a legal caretaker. I will file taxes like any other person who has an income.The government will be stuck. Will my filing with the IRS (Internal Revenue Service) be denied because I am not conscious? That will capture the country.

Friday, November 11, 2016

I'm Not a Dinosaur: Cell Damage Repaired


Most of this is theory based on fact. The body is made up of cells. As we age the cells accumulate damage. Damage can be seen in something as minor as wrinkles to as serious as paralysis from a stroke. If the damage is cleaned from the cells, those damaging effects disappear.

How do you clean the damage? So far, I can only think of DNA replication. The instructions, the DNA of an old cell is copied to a new cell. The new cell is blank. We know this process as cloning.

A lot of people saw Jurassic Park. It was about bringing dinosaurs back. They used dead dinosaur blood from a fossilized mosquito. This is what makes it fiction. Try to find a fossilized mosquito. You are looking for a needle in a haystack in time, or 65 million haystacks. The DNA information is true.






The original dinosaur's cell damage was erased with the whole dinosaur. The whole species has been erased in time. Dinosaurs are now extinct.

Now, what if the species isn't dead?
 

This bit of science was given to the food industry. Now you hear about GMOs. That picture is Dolly the Sheep. It was created by cloning.

What I am saying is let's go back to this, the cloning, but apply it in one single organism. Clone the old, healthy organ (for example, my old brain, without it being present alive but present as dead).

Do the cloning, with people who are still alive, but already had their cells killed. How is that? Serious brain injury will do it. Something like a stroke or anoxia can kill a brain cell but leave the brain. There are plenty of types of brain injury that damages or kills the cell and leaves the brain. I only give two here.

Now, I wrote all this. I came up with this. I have a terrible brain injury. Not only were my cells damaged, but also killed. I've heard it told that 75-80% of my brain was killed. I presume that my brain has gone through a process of DNA replication and cloning. It all happened as natural as a natural twin birth.
 
I am most likely still going through this process in motor areas. My right arm is no longer paralyzed. I recently made a video of doing sign language to spell out the alphabet. (I wouldn't learn a new skill, but "remembered" what my kids had studied in grade school. I was an involved parent.)
 


The idea was to show off movement, not that I know another language. This is the hand that was never to move. That's amazing by today's standards.

You don't have to be as old as a dinosaur, but damaged and dead tissue can be restored. I don't have a new brain
I have a refurbished brain. Like I have said, this is a copy of my old brain.  http://thoughtfulveg.blogspot.com/2012/03/new-brain.html








*Note
This will be of use in longevity study. Old age is an accumulation of damage. This would be cleaning it out.

Sunday, November 6, 2016

It's A Start

Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition.



This question is about my start. I started with an article in the American Stroke Association's magazine, Stroke Connection. They are hosted by the American Heart Association.
 
Stroke Connection p. 9
The link only goes to the magazine.
The article in on page 9 (8 if you have the actual magazine).

The American Stroke Association was already showing interest. This is where "stroke" and "brain injury" get mixed up in me. I had been driving close to my time of unconsciousness. People assumed the car accident was at fault. Really, I already had a blood clot (tangle of blood vessels called an AVM) in my head that was slowly bleeding. I had an AVM Stroke.

The way I saw it, a stroke is a brain injury. A stroke is no better of a brain injury than hitting your head in an accident.

For this essay, use ABI vs TBI.

I had an ABI (Acquired Brain Injury), from the stroke, and a TBI (Traumatic Brain Injury), from the car accident. Was I supposed to split my head? They are both a brain injury. That first letter was only needed for medical purposes. Now it's used for funding. Let's tear society up with letters.

Where was the association for all the brain injuries that are NOT stroke? Half of my injury is not stroke. Would half not be followed? Of course not, all of me would be studied. I think back to the last hospital I was in. My roommate was the sole survivor of a car accident. It was graduation night for her. Her mother told me how she was going to the dental college and had a friend graduating from high school. If that girl was having the remarkable improvement I was, she wouldn't be picked up by a stroke association.
 

 A friend from Facebook,  Shea Shaw
She reminds me of that roommate.
Her brain injury comes from hit and run. Again, no
stroke association would be involved.

So, I decided to do this on my own. I fell off the radar of The American Stroke Association. I pushed that I had BOTH types of injury. My remarkable recovery would cover ALL of brain injury, not just some letters.



UPDATED 12/3/2016





Friday, November 4, 2016

What Kind of Vegetable Should I Be?

 

Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.


 I kind of remember that day. I shouldn't, but I do. It's one of those paranormal things. I remember the doctor saying there were two kinds of vegetative. (PVS and MCS for those of you who know what those are.) PVS was the more severe one. She felt I would get better care if I was labeled this.

You see I was already borderline. The doctor had trouble deciding what kind of vegetable I should be. All I could do was sit and stare at her. In my mind I was saying, "No, you got it wrong." I still had the AVM in my head at that time. It was due to explode in the future and I would die. That doctor wouldn't know I would have an experimental surgery to remove the AVM.

I shouldn't remember any of that, but I do. I won't write a letter to myself. What has happened has already passed. That can't be changed.


 This movie is based on a true story. 
The movie is "The Diving Bell and the Butterfly."
There are subtitles as it is in French.
Like this clip, I could only sit and stare when told.
______________________________________



There is very much similarity in my case to this other case above. That person was the editor of Elle magazine. He had a stroke. He went on to write a book by blinking one eye to a person who took dictation. He had to blink yes or no to every letter in the alphabet said for each word in the book.

The most I ever blinked out at once was a few sentences for my mother to write in a note. Writing like I do now came later after I could move an arm. I use my left pointer finger to hit keys. I haven't done a book, yet. Just these snippets. A book is in future plans, but not for right now.

Wednesday, November 2, 2016

Remove My Butt!!



"...We LOVE your enthusiasm and excitement for the community, but we hope you can understand this is a company policy. Using your page for personal advocacy efforts is very much encouraged and we’d love to see you do that. But, if you could remove [name removed] from the title of your page and the images that you use...."

My Facebook uses a tomato butt as it's avatar.



There is reason for this. First, my diagnosis is "semi-vegetative." No one knows what that is, so I tell them "brain injury." (If you look up "semi-vegetative" you may get PVS or something I wrote.) Second, this may come as a surprise, the tomato is not a vegetable. It is a fruit. Wisdom keeps it from being put in a fruit salad.

Likewise, I am not a vegetable. So I am going to use a tomato mooning everyone until my diagnosis is changed. I will not remove my tomato butt for you, but I will kindly unlike your page...thereby removing any symbol of you.


Tuesday, November 1, 2016

On My Creative Process



"Anyone can do it if they are willing to sit there for hours, hours, and hours." (2:56) Jon Sarkin


I am forced to sit by disability.

It's not just sitting, though. If so, all disabled would be keen on some given skill. No, it also takes a bit of gumption (grit) and some knowledge of the craft, but I'll go on. This is a topic on it's own. (Grit, drive, is covered in http://thoughtfulveg.blogspot.com/2014/11/the-drive.html)

On to my writing.... My first, and maybe my second draft, is in my head. I write my final draft down. Usually it is in an e-mail to myself.

I copy the e-mail into Blogger. I'll add appropriate media, if necessary. I'll edit, then publish. After I publish, I will check the links to see if they work. I will play the videos.

Once that is all done I can use it. I will make posts on different sites in different topics and refer back to my original essay.