Saturday, June 29, 2013

Observing Angela's Condition 2003 to 2013

by Raymond  Jackson

[My cousin wrote the following.]

I last saw my Cousin, Angela Ronson, as a totally whole and healthy person sixteen years ago at the wedding of one of our cousins. I did not see her again until April 25, 2003 when she was at a San Jose Hospital. She was certainly handicapped but not a human vegetable. She readily recognized me and attempted to communicate with me as best she could. I saw her again on April 24, 2004 still at the same hospital. Her condition had improved.
I did not see Angela again until January 16, 2007 after she moved back to Merced and was living in her own home. The improvement in her condition in almost three years was miraculous, and was a surprise. Since 2007 I have visited Angela about four to six times each year, and she has continued to improve "slowly but surely." I like to think that my prayers and those of others have helped bring this about.

Friday, June 28, 2013

Why I Shook My Head

It’s difficult to imagine a more nightmarish scenario—to be paralyzed in a hospital bed, unable to speak or communicate, presumed “decerebrated” and brain dead, limbless, blind, deaf, only able to move your head a few inches (which the doctors interpret as an involuntary reflex)...

I was in that "nightmarish scenario."

When I opened my eyes after the coma, I could not move (no arms or legs that worked). I could not talk. All I could do was open my eyes and watch.

Maybe a few days later, I could turn my head.

It had been explained to me that a blood clot in my head could not be removed. It hadn't burst, as these things usually do. It had leaked, causing a major brain bleed. I had been in a coma. Now that my eyes were open, I could partly see (my vision was limited). My vision was poor, but I could hear. I could hear I was a vegetable.

I turned my head from side to side as fast as I could. I shook my head. Doctors wanted me to keep my head still. I would dislodge that blood clot. It could finish what it started. Movement wasn't an involuntary reflex. It was purposeful. (This behavior didn't last long, and yes it was a behavior. It responded to a particular behavior medication I was familiar with as a Behavior Specialist. A reflex would need a different medication.)

Updated 8/7/2015

Monday, June 17, 2013

It Goes On And On And On And On

I asked a question about lifespan. I already out-lived the life-expectancy given to me. There isn't much known about the neurogenesis process, and that was proposed to have happened to  me. So I sought advice from an expert. "If you were in a PVS, you would be at much greater risk in the near term from the consequences of constant immobility than from aging." Where did "immobility" come from? If you look at my pictures, there is a slow progression in the opposite direction. I started with immobility. When I say slow, it has been years to get to this point. I only purposely move one arm and I am able to type this through accessibility features on the computer.

What's out there, knowledge that I need, is proposed. It's not for sure. A theory should have been developed. I'm having a hard time finding it, and no wonder why. Look at the video.


So I am finding things in other areas. I've found things on neurogenesis in Aging. I hadn't even thought about looking there! On a positive note, this is already naturally occurring in people. "The good news, which first became clear a couple of decades ago, is that neurogenesis is happening in all of our brains! The unfortunate thing is that it only happens in a very limited number of areas of the brain, and the neurons that are generated are only put to very limited purposes." [From  an e-mail to someone at The SENS Foundation.] What's happening in me isn't natural. It's not following what has been proposed. So I really need the theory that does exist.

It's good I have a background in Early Childhood Special Education. I'm finding the progression I am experiencing similar to early childhood development, but a little different. Namely, it's SLOW!
I started immobile. I've slowly gained movement. This indicates brain growth. There has been slow progression in every area. Again, this would be brain growth. It is slower, though, than the typical growth of a child.  A child has brain growth. Child development would be the best  framework available.

The slow progression is seen in my breathing. When I first had the bleed, I did not breathe. I was put on a ventilator. After months, I was on the ventilator part-time. Then it was no more, but that wasn't it. I then kept a trache in my neck. I was routinely suctioned  by nurses (If you watched the chicken video,   this is why the chicken died.) I also received breathing treatments. For a short time I got "Postural Draining" where the hospital bed is inverted and the feet are higher than the head.

I was still on the ventilator at night.

It didn't stop with that. Sure I had that tube in my neck a long time. It was a couple of years before it came out. When it finally came out, I had an open hole. I was told the hole would close on its own. It didn't. Another year and then a surgery to close the hole in my neck. During that year, I went from routine breathing treatments to regular use of an inhaler, like what is used for asthma. I gave up that inhaler when I left the hospital. I just got frequent pneumonia still. It's been a while since I've had one. Hopefully it will be a long while. 

During this last year I started coughing. That's another issue:  you are dead if there is no gag reflex. So I wasn't a vegetable. I was dead! This is getting even better. ("Absence of the gag reflex and pharyngeal sensation can be a symptom of a number of severe medical conditions, such as damage to the glossopharyngeal nerve, the vagus nerve, or brain death." This definition is a little better. At least one can be alive; barely.) No gag was observed in me at times of suctioning by nurses. I didn't cough until years later when brushing my teeth.

Now, I have a closed hole in my neck.

Progression has been strange, but it appears to me as a slowed down version of child development. Child development is a time of brain growth, and that's what appears to be happening. I write this. Am I doing this with my brainstem (all that was left)...or did my brain regenerate, allowing me to write? For that a new scan will have to be done.

(Looking at the pictures, you can compare and see the differences. Besides not having  a tube in my neck, I now have expression in my face. Not just one side of my face either, but both sides. Slow progression warranted one side for a long time)

I've stated I am finding the theory elsewhere. I never would have thought to look for neurogenesis in aging. That's completely opposite. Neurogenesis is brain growth and I associate aging with decline. Now, for why I am so confident...what has happened so far has loosely followed child development. That's my MA--Early Childhood Special Education.  It's child development with a twist. Theory is there. I am well-versed in it, too. Growth implies more to come. That means this isn't over.

Long ago there was a medication associated with neurogenesis. It's quite possible it is responsible for the effects you see today, although I don't take it anymore. If it caused neurogenesis at a very fundamental level of the brain, then effects wouldn't be seen for years. As slow as brain growth has been, it has been and will continue to be a long time to see effects. It's possible no end will ever be seen. For the same reason, continued therapy becomes important.

Life goes on and on and on and on. Don't stop believing something will happen.

Updated 7/29/2015

Friday, June 7, 2013

How Do You Communicate?

  • Trina Tbi Chambers-Bradlee But I don't really understand, 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.

"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.

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

Monday, June 3, 2013

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 There are many others, but this uses the word, "irreversible."

   persistent vegetative state
(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. 
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]


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.

_____________________________________________________________________>>> COMA               PVS                 MCS                    EMERGING CONSCIOUSNESS                              

What I experienced was closer to the diagram in 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.