Tuesday, January 20, 2015

Self-Talk





After a while like this of course I am different.  Only the first year was spent lying down and blinking my left eye. I gradually got upright and had an electric wheel chair my third year. By then I could say most words, but forget the letter 'R'. I didn't pronounce my 'R's until well out of the hospital.

I still do a lot of that kind of thinking. I will talk a lot to people in my head. It's easier for me. I don't have to take a breath every few words anymore. I probably did that kind of thinking more back then. I still think of what I want to say faster. Right now, though, people understand talking. I have to talk to be understood.

* A friend watched that movie with me It was too real.





Avalon (Lindstrøm & Prins Thomas Version) from Roxy Music on Myspace.

Sunday, January 11, 2015

How I Came To Be Unconscious



"We are heavy duty neurobiologists and we have done a study Mr. Searle. We are convinced you are not conscious."  (7:01)
 


That's what happened to me, but without people. Instead it was a diagnosis. The diagnosis says I am not conscious. 

Give the diagnosis PVS when someone doesn't appear conscious and all is fine. Then they get better....

Well, if someone starts to show consciousness as I did, then make them "semi-vegetative." After that you better hope they die because there is nothing else. (MCS should have been next, not "semi-vegetative.")

"When people do get interested in it [consciousness] they say the most appalling things." (0:48) This is the letter explaining to me I'm in a coma http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html This letter is just an extension of the first error.

PVS can't be "not conscious." Carry it through and see what happens? I am in a coma. Just change the "P" in PVS back to "Persistent". "Persistent" knows no time limit. "Permanent" is forever.

Wednesday, January 7, 2015

The Reality of My Situation



Write a book...Make a movie...Sue those responsible for that letter.... Nice thoughts but none of that can legally happen. I'm not conscious and therefore not a legal entity under the law. I covered this, http://thoughtfulveg.blogspot.com/2013/02/im-still-vegetablethat-handles-money.html Since money is allowed, I might be able to do the book if I set up a non-profit and have that do a book. That's not easy.

Why not just make me conscious?

All of this you read I assume is imaginary. All I can do is refer you to an outside party, http://thoughtfulveg.blogspot.com/2012/02/angela.html

This is where the current administration stands on the issue, 
 
 
Although I am not Right-To-Life, I have the brain injury and the feeding tube. Like her I am PVS. That state was deemed not recoverable. Since I am PVS I cannot be conscious. "This is an example of inaction." I, too, am inaction.

I have found a way to at least get my ideas out. You are reading it.

*note:
I am not conserved nor do I have a power of attorney. I am not under a doctor's care. I should have returned to the hospital I was at, but the unit closed. I am able to access a local provider if I am sick. If it's real bad I can call 911.

The internet has been the only way to get my ideas out. The government programs I have been in do not allow me to do this.

Tuesday, December 30, 2014

Vegetable On the Loose


People asked what happened and where you have been. Well, I've been at home and home doesn't keep medical records. As for what happened...the closest is this comedy movie clip:



I wasn't a prisoner. The hospital couldn't keep me. As soon as I could, I went out and came back. The very first time I did this I wasn't even completely weaned from the ventilator yet. My sister was having a birthday party at a kid's restaurant and I could piggy-back in and have cakes for my children. I had missed one's birthday and the other had one coming up.

I was on the ventilator at night while I slept. I could get out of the hospital for the day. This was already the second hospital and it had been 9 months.


As I got better, I went out more often. The hospital I was at during my final outing was moving everyone in the unit I was in to other living arrangements as it was closing. I didn't want to move to a nursing home. This was the fourth hospital. (There had been two nursing homes, also.)

A sister signed as a caregiver. I don't think I was ever discharged. Care was only transferred. The arrangement lasted a few weeks and I should have returned to the hospital. This was an area of specialty for me, though. I used to do coordination of services for persons requiring medical care, but remaining at home. I could do this as long as I remained conscious. I wouldn't have to return to the hospital if I could set up community care.

I remained living in my own home, but used community resources. You need to know which ones and if your community has them in order for you to do something like this.

This is what I have been doing the last few years. I have a local specialist amazed at my ability to get special medical equipment delivered directly to me. I just know my community resources really well.

As you can see, I wasn't on a field trip. I was on an outing, though. While out, the economy crashed and that particular hospital unit I had been at closed. I had no where to return. I've done fine and don't want to go to a hospital now. (Besides...it's a lot cheaper.) I'm still "semi-vegetative". Change that term. Don't send me back because of it.

Updated 1/25/2015

Thursday, December 18, 2014

Can't Damage Me




The following video is the closest I could find to what is going on with me. The clip is of a TV program so it is made to look fantastic. I'm in real life and this is not fantastic. Time is real- sure recovery time in me is fast enough to be noticed over days, but it happens in seconds in that video clip.




The fastest in me would be a bruise. That can take a few hours to disappear. A scratch would be all day. Deeper cuts, 2-3 days. I won't stick my hand in a garbage disposal.

It's my whole body...not just this brain injury that people are so familiar with. This is how I figured it out.....I was hospitalized for pneumonia. I was used to that. This time it was bad, though.  I just happened to be at a top-notch place. They wanted to intubate me. They said I had sepsis. I refused. It was bleak and they said I was looking at a couple months. Three weeks later I was being discharged.

They took blood. Then they took more blood. I left and haven't been back. No poking and prodding at me. I knew I wasn't imagining things and something was up. I'd figure it out myself. I eventually did, http://thoughtfulveg.blogspot.com/2014/08/amazing-order-of-events.html. They didn't have all the pieces to the puzzle. I did. Some of the key information wasn't even in medical records...but it was in my head.
 
This brain injury is taking quite a while. As can be seen, I've already gone from severe to moderate. That has taken me a few years. So if those with severe brain injury think they are stuck, no this is not true. It does take years, though, and rehab programs don't last that long. You will have to be prepared to do it on your own.

Being part of my body, my head would heal, too. I've gone from severe to moderate. I've gone from not being able to communicate to doing this stuff. (If you can't read, then I can't help you.) I didn't change the word "Persistent" to "Permanent." I'm sorry I couldn't keep up with an idea of how long I should take to show awareness around my body. The e-mail I received explaining to me I'm still in a coma is the most asinine thing I've ever seen, http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html.

That letter and this routine have something in common.
The literal meaning of a word can be asinine if you don't use common sense.
 
My body hasn't stopped responding to attempts at bettering it. I now continue on to being able to walk. That entails, strength, balance, and coordination. That's not easy. I guess I now work on moderate to mild.

Is anyone recording this besides myself? This stuff is more important than what's on TV.

Thursday, December 11, 2014

You Are My Sunshine






The Stevie Wonder song "You Are the Sunshine of My Life" came on. I was flooded with memories of singing my first song since opening my eyes after a coma. The title of that first song is similar, "You Are My Sunshine."

I knew all the words to the main verse. Everyone else just knew the first sentence. At the time I had no clue this was a sign of the neuroplasticity that was also going on inside me.

I remember singing at the nurse's station. Vocalizing didn't come from speech therapy. It came from nurses. I still had speech therapy at this time. They would have been surprised by all the sound I was making.


You are my sunshine, my only sunshine
you make me happy, when skies are gray,
you'll never know dear, how much I love you,
please don't take my sunshine away.


Speech Therapy ended as soon as I left that place. My medical insurance ran out. The government plan picked up and any therapy stopped.

I left that place able to vocalize, so I continued the therapy on my own. I did mostly singing and reading aloud. Using my language to communicate was a natural built-in exercise. Family didn't understand why I didn't use my communication board. I think my speech turned out well.
 


 




Sunday, November 30, 2014

Neurons That Fire Together, Wire Together



So neurosculpting...that's what they are calling it now. I've just called it physical and occupational therapy with neurophysiology knowledge.

In the above video, this person gives the example of her client having fisted hands. She specifically relates this to holding horse reigns prior to the accident. I guess in my case I could say holding the steering wheel of my car, but I don't. Besides, there was a time gap after driving.

Instead I have related fisted hands to decorticate/decerebrate posturing. Look at the picture and pay close attention to the hands. They are fisted. This posturing would occur in damage to certain parts of the brain. This picture shows more severe damage. Posturing will be less severe in lesser injuries.

Look at the feet. I wonder...I wouldn't be surprised if there is a connection to dropfoot.

       
The next part of this "sculpting" of movement by applying neurology knowledge comes from an old saying: "neurons that fire together wire together."



Digits should move together. Don't worry about finger individuation yet. First get movement established, then being able to move each finger by itself can be worked on. Raking and scooping, then an inferior pincer grasp (thumb against side of forefinger), and finally a neat pincer grasp (pinching) is the progression.

Once movement is firmly established, then exercises to develop individual fingers can be implemented. Don't worry things are moving together. Be happy they are moving. No movement would be more serious damage to a neural pathway.

That saying, "neurons that fire together, wire together," can be applied to all movement. Not just the fingers, but the arms and legs. If one does it then take the other along. (If you do leg lifts with one leg, then do that with the other. It may just be less.)