Wednesday, April 30, 2014

Extraordinary...



I do that. Actually, that’s being done to me. I can handle that better than other brain injury patients, though. Simple orientation is all that’s required, not a breakdown of complex theories.

Statistically, this was bound to happen.

"Far too often, 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." http://www.wired.com/2013/02/searching-for-consciousness/
 
How many people is that? Quite a few.

"Approximately 1 out of 1400 people with mental retardation or CNS deficits other than autism do have savant skills." https://www.wisconsinmedicalsociety.org/professional/savant-syndrome/resources/articles/savant-syndrome-2013-myths-and-realities/

I’d venture to say 1 out of 1400 people diagnosed PVS will end up regaining consciousness enough to be reclassified. I’m just applying the figures. I’m not doing any math, so that's where I get 1400. That’s an observation of that report. Now this is where I'm not too clear...1 of 1400 of those people would have many skills such as I do.


 observation and deduction


I recovered this far in skill and predict there will be more attained. Keen observation of myself and others and an understanding of developmental processes allow me to make this prediction.

I would be doing extraordinary things, so I'm extraordinary evidence. Now let me make an extraordinary claim...PVS (Persistent Vegetative State) is a form of consciousness. It's just lower than MCS (Minimally Conscious State). Think about it...there's brain dead, PVS, and MCS. PVS is not brain death. It's not conscious enough to be minimal (MCS). It's consciousness right before death. It can get better or it can get worse, just like anything else.
 
 
UPDATE 6/20/2015
 
New skill of movement can be seen in my other "paralyzed" hand...
 


Friday, April 18, 2014

We Have A Problem





First off, there's issue with "soul perfectly in tact, but can't get the words out." Isn't that aphasia? Maybe he's talking extreme. Isn't that Locked-In Syndrome (LIS)? LIS is documented. A movie was even made (subtitles are in English).








Here's the  bigger issue, though...I'm not conscious. What he says about damaging one part of the brain happened here. My parts are not only damaged,  but are dead. I was listening to a radio show once, and a doctor gave reference to me and said "80%." So 80% of my brain was dead. No one is sure why I woke up. Well now, regarding what this person above says, I'd like to think I still speak English.

I've previously explained what I thought happened. Another scan of my brain will have to be done. As it is now, I'm writing and giving commentary with enough brain to barely stay alive.

Tuesday, April 15, 2014

Plateaus Are Imaginary



"Two steps forward" is progression. A "step back" is a lull in development.


Long ago in my Master's training program, there was a guest lecturer. She was a therapist. She said when you reach a stall in development, a plateau, you work through it. Now this was a program for early intervention in special education. I didn't know the practice in some physical therapy was to stop if there was a lull in attaining developmental skills. Special education teachers can be working with the same student for years. There may be lulls in the student's development, but that's what makes it "special." A teacher doesn't quit working with a student because he or she doesn't learn.

Although development is slow, the student "gets it" eventually, so
metimes years later (the particular task worked on). Gosh, there probably was a lull at that moment in time when started, but it wasn't forever. The same can happen in brain injury. Prime example...me. My developmental skill progression was slow. Sure I had a lull in development at the beginning of my brain injury. "No Progress" is determined. I was placed with the vegetative. That is how I remain today.

Years later I am writing this. It wasn't "Wham! She can write." It's taken many years and I use accessibility features on the computer. I was published in 2009, http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20090708/index.php#/10/OnePage. My accident  was in 2002. There's just a lull right there in dates. I don't know of any rehab that lasts 9 years. A special ed teacher would last that long, though, and that is what I used to do. That's what I did when therapy ran out. No therapist showed me how to type. Accessibility is an area I used to cover. I've just applied techniques to myself.

Let's see what this document says http://braininjuryknow.blogspot.com/2013/04/getting-there.html. I directly quote an article,

"The nerve fibers from the cells were severed, but the cells themselves remained intact." Nerve cells that have not died can form new connections. It goes on to say, "The new research suggests that instead of the sudden recovery Wallis seemed to make when he began speaking and moving three years ago, he actually may have been slowly recovering all along, as nerves in his brain formed new connections at a glacial pace until enough were present to make a network."  http://usatoday30.usatoday.com/news/health/2006-07-03-brain-rewired_x.htm        

This thing was written a few years ago. How can anyone without that proper equipment determine there will be "No Progress"? A person would have to be able to see "nerve fibers from the cells." My eyes aren't that good, so I can't. From the way it read, this wasn't a regular MRI either. This was a few years ago, so I'm sure the technology is more widely available now. Still, though, to the naked eye, progress can't be determined.

I go on to reassure that rewiring can't be seen and may take years. With this research available then, why is it that people are still being told there will be no progress? The "plateau" isn't really there.

Saturday, April 12, 2014

My Hole







I have a hole in my neck...but I can breathe now so I don't mind. How did I get a hole? I couldn't breathe. I lost consciousness and I guess at some point a hole was cut into my neck to hook me to a machine to breathe, a ventilator.

Breathing has been such a big deal, but it has been treated as secondary. What good is anything (medication, medical procedures, or therapy) if the person being treated doesn't breathe?

I put some pictures together that show it has been a very  long time. Completely breathing on my own has been a long process. That process didn't end with me getting off a ventilator, but many years later. My lungs were finally able to get continuously off a machine. The tube may be left in, and mine was, in case machine hook up is needed. When the lungs are strong enough, the tube is removed.

This is where my hole comes from. Although I was removed from the breathing machine, the ventilator, the tube was left in my neck for years. When the tube finally comes out, the hole left behind will naturally close on its own. Mine didn't. The skin over it had to be surgically closed. I've been left with an indentation that slowly gets smaller over the years. Breathing treatments (I was frequently getting these) soon ended after closing the hole. I used an inhaler (like for asthma) for a few months after. Breathing issues now can just be handled by my regular doctor.



The above was taken at a birthday party. I got out of the hospital for the day. The picture below is just an enlargement of me. After the party I returned to the hospital. I was placed back on the ventilator.  I was  not all the way weaned from it yet. This third picture is the same day and you can see my arms. Besides the IV bruises, I have hospital arm bands on. These pictures were 2003

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This is in 2006 before I got out of the hospital. The hole in my neck was just closed. Prior to that it was open and I could breathe through it. The tube had been out a year, leaving an open hole. I used that open hole for breathing.
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This was my profile pic at WeAreTBI.com. That was 2009. You can see the hole is closed and healed.

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In 2013 you can see the hole has gotten smaller. At this rate, I will have a hole a while. Eventually it will become a scar.


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2/2/2017
Here's 4 years later. Obviously changes are happening.