How Do You Communicate?

• Trina Tbi Chambers-Bradlee But I don't really understand, Angela...how are you communicating with me? You must be able to type, or dictate... I'm just trying to understand how your condition is so severe...

  
  
  

I have used this video before.

I have used it to demonstrate that communication is possible with the severely disabled. Watch the beginning and the end. He uses his head to type. It probably scrolls through letters and then he selects one with his head. He would have to do that with each letter and space. It would take hours to complete a sentence. Before I could move my arm, I was tried out on a computer with a head mouse. If I had to still use my head to type, you wouldn't see this. I wouldn't even attempt as this would take a very long time.                                    

I am  now able to move an arm, and therefor can use a regular keyboard. All letters are before me, making it faster and easier. Faster  can still  be a while, though. Recently I timed myself on giving a response. It was a little under 15 min. It was three sentences.

You will see I answer a lot with stories like these. I try to explain everything in a story. They are canned responses. It will take me a couple days to put one together. If I still used my head, it would probably be a couple months. That's crazy! I'm not that determined.

Before I could type on a computer, I worked spelling my name on a toy. I believe it was an apple of some sort. I'd call it the Happy Apple because it would play an annoyingly happy tune. I ended up practicing quite a bit with that toy turned off.

Once able to type my name on a toy, months later, I got a computer. My accident and stroke was in 2002, and I didn't get a computer until 2004 when I was in a nursing home. I didn't use a regular mouse. I did, though, use a trackball, which can be purchased like any mouse. I had difficulty hitting keys on the computer, but an occupational therapist set up the accessibility features I did not know were already on the computer. I didn't use a regular mouse for a few years. When I went back to the hospital, I used my Mother's laptop.

I used a laptop computer in the hospital.

It was in the hospital I sent my first e-mail. Before that, it was exploring, research, and games.

Now I'm on a regular keyboard and use a regular mouse. This makes replacing old, worn-out parts easier. I only use the Sticky Keys feature in Accessibility (Ease of Access on some) as I only use one hand and need to make capital letters. (If this is the only issue  you have, just hit the SHIFT  key 5 times and click on YES.) It has gotten easier to type on the computer, but it is VERY possible for a severely disabled person to do it.

Pretty much. I only use my pointer finger to type. Also, I'm not as fast.

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"I'm just trying to understand how your condition is so severe..."

I'm not really anymore, but the definition of what was given to me says I will always be. It would seem logical to just change the definition. It also says this condition is "lacking consciousness" although the eyes are open. I am not unconscious! I think science wants to change me and the definition, but this is tied to politics. http://thoughtfulveg.blogspot.com/2013/02/failure-to-communicate.html

It's looking like it will literally take an act of congress to change this.

It's On A Line

I'm going to pick on this definition, because it is not possibly true since I am the one writing this.The definition I am using comes from  http://www.thefreedictionary.com/persistent+vegetative+state. There are many others, but this uses the word, "irreversible."

   persistent vegetative state

n

(Medicine) Med an irreversible condition, resulting from brain damage, characterized by lack of consciousness, thought, and feeling, although reflex activities (such as breathing) continue Abbreviation PVS

If this was "irreversible", then I wouldn't be writing this. I was thinking the definition of MCS, minimally conscious state could just be tweaked, but you will see this, too, will need major revision.


http://encyclopedia.thefreedictionary.com/minimally+conscious+state 

Minimally conscious state
Classification and external resources
MeSH	D018458

A minimally conscious state (MCS) is a condition distinct from coma or the vegetative state,^[1] in which a patient exhibits deliberate, or cognitively mediated, behavior^[2] often enough, or consistently enough, for clinicians to be able to distinguish it from entirely unconscious, reflexive responses.
Auditory processing can differ between MCS and PVS.^[3] fMRI response to the patient's own name has been suggested as a technique to distinguish between MCS and PVS.^[4]

Prognosis

Patients with severe brain damage may progress through stages of unconsciousness with eyes closed (coma), to unconsciousness with eyes open (vegetative state), to a stage of "inconsistent, erratic responsiveness" (minimally conscious state). ^[5]
It is not known whether patients in MCS can process emotion. MCS is thought to have a more favorable outcome than persistent vegetative state.^[6]
Doctors in the USA recently succeeded in bringing a man who had been under MCS for six years back to consciousness by planting electrodes deep inside his brain. ^[7]



I see PVS as occurring on a linear progression of consciousness. It occurred in me prior to MCS.

   CONSCIOUSNESS

_____________________________________________________________________>>> COMA               PVS                 MCS                    EMERGING CONSCIOUSNESS                              

What I experienced was closer to the diagram in http://www.coma.ulg.ac.be/inform.html. This lists Locked-In Syndrome (LIS) as a separate state. LIS can be separate, but in my case it wasn't. It was intertwined with the PVS and MCS states.

 

BOTH PVS AND MCS WOULD BE ON THIS LINE. They are not separate states of consciousness.

Why Am I So Weird?

Most have heard about neuroplasticity or rewiring. It hasn't been confirmed yet and I'm already moving on to the next thing, neurogenesis.

I've said what happened with me is weird, but I haven't really explained why. So here's my attempt.

To begin is my injury. I have used the video of Mike the Headless Chicken to explain that it is possible to keep on living without a brain. (I can account to when I was awake, so it also has implications of awareness of my environment minus a brain.) My initial bleed started in my cerebellum. Hours went by before I got to a hospital. By then, my brain was totally engulfed and saturated with blood.  I was still alive and surgery was done for those doing it. It was good practice since I wasn't expected to live much longer.

I did live, and this is where Mike the Headless  Chicken comes into play.  He shows it is possible to live minus a head.

This is where it gets weird. I started getting better...slowly. Maybe this was happening, "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."  http://spiritualscientific.com/DrMorseBlog/2010/11/09/angela-ronson-part-3-how-our-brain-is-connected-to-the-universe/ To put it in terms of Mike the Headless Chicken, he grew a new head. This is the neurogenesis I mentioned before. I wouldn't have grown a whole new head.  I would have grown new brains to go in mine. Now that's weird! (It would  be more like getting a scab from a cut, and then growing new skin.)

This all happened, THEN neuroplasticity  happened. That came years later. (Some would have happened sooner, but no brain means there's nothing to rewire to.)

As if this all isn't weird enough, I can talk about it. This is even more weird!

Living In A Virtual World

 

"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 above done. Small actions couldn't be amplified. I couldn't think that done.

You Gotta Do Something

updated 7/21/2014

Neuroscience News, 5/2013 (click link for more) 

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.

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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

The Singing Dead Man

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...