Living In A Virtual World

 f

"Wait a minute. He's disabled."

He is in actual life, but not in virtual life. He is also a different species. Is it easier to believe he is an alien than it is he can walk?

One doctor had his followers on a social network believing I was an actual brain in a glass jar he had brought home from the hospital. He would use this picture:

I'd like to think my existence is more than that, but it wasn't very hard for people to believe I was just a pet brain in a jar.

My physical ability is limited, but my virtual ability is not.

Everything I'm doing is virtual. Things I am doing are on the computer. My situation is less of a fantasy than the above video. 

I hit the social networks. They are based upon actual life.

An example of not being virtual would be this letter, http://thoughtfulveg.blogspot.com/2013/01/regrettably-matters-you-raise-in-your.html . Getting it certified and mailed required actual life, not virtual reality.

Technology makes limited movement big. It was much harder getting that done. Small actions couldn't be amplified. I couldn't think that done.

You Gotta Do Something

Experience Leads to the Growth of New Brain Cells (click for more)      

Adult neurogenesis refers to the generation of new neurons in the hippocampus. This allows the brain to react to new information flexibly. The illustration shows the location of the hippocampus in the brain.

"Functional neurogenesis means that new brain cells grow deep within an area of the brain called the hippocampus, and then migrate to specific areas of the brain where they are needed. These new brain cells then permit new functions or repair damaged functions in the brain."

I've used this quote before, http://thoughtfulveg.blogspot.com/2012/03/new-brain.html It explains what happened and is happening to me. It takes "miracle" off me and puts it back on the brain. I'd say it's another "wondrous property."

I would think those new cells that are created are blank and need to be programmed. You program them with therapy and exercise. Not once, but over and over for a while. Do nothing and you see nothing. I've been exercising for years (therapy exercises not cardio-vascular exercises). There has been improvement for years.




So you gotta do somethin' if you want somethin'.

 (His hairstyle:  another "wondrous property.")

Who Let Her Out?

This is funny to me. I'm not really following the protocol. I definitely don't fit the terms anymore.

This is what I looked like when I opened my eyes.  Actually, I looked worse at first since I couldn't sit. (I was laying in a hospital bed, on a ventilator, and could only open one eye.) I would watch her on TV, and nurses would compare her to me.

This person was PVS and so was I. We both had feeding tubes. I think her brain injury was caused by a heart attack.

 

I got more skills and started behaving like this man (after his stroke):

(There is a lot in common, like the one eye blinking and the writing. I wonder what would have happened if he lived like I have continued to live,)

  

I got a few more skills and now I'm a Talking Head with an arm.

These people in the videos above shouldn't be let out of the hospital. So how did I do it?

Maybe I've got ASS (Acquired Savant Syndrome). I wrote about it, http://thoughtfulveg.blogspot.com/2013/04/i-want-ass.html but haven't been found to be. Maybe I'm just very smart and lucky.
 

People on networks I belong to have said they were "vegetables." They were most likely MCS (Minimally Conscious State). Rarely is the PVS (Persistent Vegetative State), as seen above, sent home. Sometimes there is a caregiver at home (thank you to those of you who do this, because your loved one can't say that). PVS are usually sent to a carehome. I've been to a couple. They die there. I came close, but I could navigate the system. It wasn't easy, but I got out of the hospital system. (It took years.)

Some know what I mean when I say I do a more medical Independent Living now that I'm out. Some of the things in my house look like they came from the hospital. I don't have a regular bed. I have a semi-automatic hospital bed. There's also a feeding pole. It's much the same as an  IV pole. My feedings are hung from it like you would hang an IV. Independent Living itself is not medical. It is the philosophy, http://en.wikipedia.org/wiki/Independent_living. I have medical needs, therefor my Independent Living is medical in nature.

This is definitely not the same!

 

I came across the following video:  (I was in that state he describes right before MCS.)

EXACTLY WHAT HE SAYS! I was in that "grey area." Now I'm talking and standing, and still diagnosed to be in that grey aea. Once PVS is always PVS. I disagree with that. Since I didn't progress quickly enough in consciousness, I definitely don't get adequate services now. If I don't, then others don't either. As a former service provider, I give what I can to myself and others.

_________________________________

As far as going back to a hospital...and it's signed too, so you will get it:



(Don't watch if you oppose the use of the "f" word.)

I was in care 2002-2006. I was shuffled to many different hospitals and nursing homes. If your address is to where you live, then my address was the hospital address. I choose not to live in the hospital. No one "let me out." I followed the rules and saw an opportunity to get out. I'm not going to say how I did it. Just be happy I did.



When The Dead Sing

Later I was told I was Code Blue. I knew what was going on, though, when I opened my eyes. They were saving my life. I chewed out the hospital staff. I could sort of talk this time around. I went through the procedure to become DNR (Do-Not-Resuscitate). This had happened before (saving my life), but it left me profoundly disabled. Actually this time I opened my eyes before they did anything. I said to the nurse above me, "What are you doing?"

"I'm going to intubate you." 

She was stunned. "Do you still want to be intubated?" She probably didn't know what to say or do.

"No." 

To all in the room I said, "Is this what's done for DNR?" 

Heads down, they left the room. (They knew they just broke a contract.)

Hospital staff did it...they managed to avoid me in the hospital. I didn't see a doctor for a few days. I only saw the janitor and CNAs. That was possible in a long-term care unit.

Maybe if I had sat up and started to sing...

    

I Want ASS

The more I think about it, a savant would be conscious. A savant would be able to give all this info. This is a continuation of http://thoughtfulveg.blogspot.com/2012/12/i-have-ass.html 

(ASS=Acquired Savant Syndrome)

I decided to look more into this disorder. "Savant syndrome is a rare, but extraordinary, condition in which persons with serious mental disabilities, including autistic disorder, have some ‘island of genius’ which stands in marked, incongruous contrast to overall handicap." This can happen after a brain injury, "However, ‘acquired’ savant skills can also appear, when none were previously present, in neurotypical individuals following brain injury." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/

Being female, this here caught my eye, "Reports of female savants continue to be relatively few." It goes on to say,"Males outnumber females by an approximate 6:1 ratio in savant syndrome." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ Not only is this rare in rare, but I am female, making this even more rare.

Here's something to think about, "Savant syndrome, both in the congenital and acquired types, provides compelling evidence of remarkable brain plasticity. Indeed, brain plasticity will be a central aspect of all neuroscience research in the decades ahead. Until fairly recently, there has been what Doidge (2007), in his book The brain that changes itself, calls ‘neurologic nihilism’. This was a generally pessimistic view of the ability of neuronal tissue to regenerate and rewire itself in the face of injury or disease." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ Am I a culmination of medicine and life experiences? Brain plasticity plays a major role.

I don't really fit into the areas of savant skills. "Considering all the abilities in the human repertoire, it is interesting that savant skills generally narrow to five general categories: music, art, calendar calculating; mathematics, and mechanical or spatial skills." [Close to this. I took out examples and non-pertinent phrases.] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ The closest you could get is saying writing is an art form. I've done many of these pieces. There are well over a 100 posts between my 2 blogs.

Could it be computers in general? I've lost track of all the accounts I have. Before signing up for something I will first do a password recovery. There's no sense in making a new account. Computers are too new and therefor not included in savant syndrome skills.

This was interesting to me, "Other skills have been reported less often, including: prodigious language (poly-glot) facility; unusual sensory discrimination in smell, touch or vision including synaesthesia; perfect appreciation of passing time without benefit of a clock; and outstanding knowledge in specific fields such as neurophysiology." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ It's no secret that I have a knowledge of neurology. This entire paper would be a reflection of that. "Think of all those miles and miles of myelin sheath Ms. Ronson had to laboriously re-knit to heal and reconnect her severely damaged brain," is also neurological. http://spiritualscientific.com/DrMorseBlog/2010/11/09/angela-ronson-part-3-how-our-brain-is-connected-to-the-universe/ I don't know how I did that.

The person with savant syndrome lacks purpose. Something I have. "Cognitive skills, logical skills, and analytical skills are absent in savants." http://beatsme.hubpages.com/hub/Savant-Syndrome That's something I do. This neuro stuff is hard to understand and I make it more understandable. That means I analyze it.
 
If I am given savant syndrome, then I am conscious. This has to be considered. It's a strange Catch-22. I don't know how possible this is, seeing that it is so closely tied to politics.

 

I WANT acquired savant syndrome. I would like to be conscious. I want ASS.

I'm a Talking Head

A while ago there was a popular band called Talking Heads.



It isn't the "same as it ever was."

 

 

 

That's basically all I am, a talking head. Actually I'm a talking head and an arm. Oh, everything is all there. The only things that work consistently, though, are my head and this one finger I type with. More will most likely work in the future, but it has taken this long to get these going.

It's taken a long time for that head and arm to work. I've put those ideas here on how to get an arm to work. It's not that crazy. Look up Edward Taub sometime. He's doing it. I just take his stuff further.

I had to find a way to get all this stuff out. I guess the ideas started with me, like that arm thing.  I had to get an arm to work. Now that I can get the ideas out to you, I can think of all kinds of stuff....

 (I knew I was going to fly.)

*Taub's stuff is not yet covered by insurance.

Groove Me



People continue to debate whether I'm conscious or not. Let them. There is something else that needs to be dealt with right now that doesn't concern my consciousness. (For some background, I suffered a severe brain injury. I shouldn't be able to write this.) I have believed rewiring is slowly occurring for a long time now. Maybe if rewiring, neuroplasticity, was accepted, this wouldn't be such a big debate. (Watch the video for an explanation of rewiring/neuroplasticity
http://braininjuryknow.blogspot.com/2012/03/what-heck-is-rewiring-brain-anyways.html.)
 

I was recently asked on Twitter, "if there was one thing to change to make you happy what would it be?" (J.-François Gariépy https://twitter.com/JFGariepy/status/313815449597009920)
 

My answer:  THERAPY.

Therapy has slowly been cut to almost nothing. Put "Medicare cutting therapy" in your browser and all kinds of stuff comes up. What once was all the time, is now just a little bit to help some of you get by.

When I started this strange journey, I was employed in a county position. I worked for a county mental health. It came with pretty nice insurance. Insurance I ended up using when I became incapacitated. Time went by and medical costs were high. The insurance ran out. I now have Medicaid and Medicare.

These latter programs provide close to nothing for therapy. The lesson would be:  don't lose your employment insurance. In most cases that means don't lose your employment. Sure there is a way to continue that insurance (that's what I did) but it's not free. So you have to be able to afford it.

For therapy, I started with the best. When I switched to Medicaid (I wasn't Medicare eligible yet) it became poor. There was a lot less. Now, therapy is nothing...and I have both! (Only a minimal amount is provided at the beginning of your injury).  

It's good I started with private insurance. My situation was dire-to the point where when I reached a hospital I was air-lifted to a trauma center. I was
 lucky to be alive to receive surgery. Afterwards, followed a coma and more surgeries. (I obtained these records. I never opened my eyes at this place.)

I was transferred to a nice rehab with hospital. I opened my eyes at this place. I still had my insurance from my employment. (This meant letting all bills go to collections and using my Social Security to pay the medical.) This place followed all the rules. (I knew "the rules" from prior experience.) They soon noticed my progress. My progress was noticeable, but not fast enough to return home. I ended up in long-term care with death as the outcome. (Obviously, this didn't happen.)

What was a little different about me is my past. At the time of my brain injury, I was  currently employed as a behavioral therapist, but what they didn't know was what I did before. I ran an early intervention program for babies who would potentially be disabled. I was quite educated and experienced in brain development and disability. I managed to have all that knowledge still...trapped in a useless body.

Much wasn't expected from me. I wasn't even expected to breathe on my own. Well, I breathe. I do a lot of other things as well now. (It's funny to me that current Social Security is based on the records of the first hospital, and therefor I am in a coma.) On to what is needed, though, THERAPY.

http://braininjuryknow.blogspot.com/2010/12/rehab-at-home.html

 

This can be done on your own, at your own leisure, in your own home. I told you above I used to do Early Intervention. A part of this is being able to leave parents instructions of what to do for therapy for their child. That's what the above document is...basic instructions for you to provide therapy...a DIY.

You will need the help of a therapist to get started. A therapist starts the initial exercises. You periodically go in for  the therapist to check on how the exercises are going. Therapists can add to or take away exercises from the program.

This makes it a lot easier on the person who needs to receive rehab therapy. It also frees up therapists to work on what is needed. This is a low (maybe no) cost solution to the back-log of in-patient rehabilitation of brain injury. Instead of being put on a waiting list, a home program is started. (Out-patient therapy!)

Therapy is needed in order to rewire properly. How could they start something and not finish it?

In order for the  brain to rewire an activity, the activity must be done repeatedly. Norman Doidge gives a description of this when he likens it to snow skiing, but uses it to explain a bad habit. "Plasticity is like snow on a hill in winter. If we want to ski down the hill we can take many different paths because the snow is so pliable and plastic. But being human we tend to favour one path and pretty soon we´ve developed a grooved track, which ultimately becomes a rut that is hard to get out of." http://www.thinkbigmagazine.com/mindset/259-brain-changes-itself A habit is a habit; good or bad. Therapy does the same activity over and over the right way. It develops a habit (good). You could say it makes the groove in the snow deeper.

As far as proof of this thing working, I can only offer myself. The exercises are for therapies that stand on their own, OT, PT, and Speech. This thing has just become part of my life. I do it every day. I'm not slowly getting better. I am  slowly making my grooves deeper.

 

 

Groove Me