Friday, June 24, 2016

Is it too good to be true?

Excuse me, but I used to be blind in my right eye and now I'm not, and nobody sees that as a big deal?

I've thought it was rewiring mainly, but I recently read that an over-the-counter eye medication is reversing the damage caused by MS. Could this be the same thing happening with brain injury? Eye drops or my body...both should be looked at.

"A common antihistamine used to treat symptoms of allergies and the common cold, called clemastine fumarate, partially reversed damage to the visual system in people with multiple sclerosis (MS) in a preliminary study." What brand is it in? Tavist came up.

I take a different medication. I use Naphcon-A eye drops. They are both allergy medications. At home, I will put the eye drops in as soon as I get a burning sensation in my eye. The burning stops immediately. To note, my eye may have already been closed for an extended time. It would not be dry eye. Long ago, when Naphon-A became OTC, my doctor said it was a "vasoconstrictor." It works by narrowing the blood vessels in the eye. I'm pretty sure what got me here was vascular. I had an AVM (arteriovenos malformation) bleed. I know, "'had." That's past tense. It's now gone. Isn't it a vascular problem? Blood vessel dilation and constriction is also vascular. There may be correlation here.

I do know I see now with both eyes. I may not be legally blind anymore. I would still be low vision, probably. Testing is not covered.

Thursday, June 16, 2016

Amazing On Top of Amazing

In the beginning of my disability, I thought I had Locked-In Syndrome. It was mistaken for being vegetative, or PVS. "THE WALLED IN ALIVE DISEASE! (French term for locked-in syndrome)" is plain to see here.

Locked-In Syndrome is already amazing. "Locked-in syndrome is a rare neurological disorder in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes. Individuals with locked-in syndrome are conscious and awake, but have no ability to produce movements (outside of eye movement) or to speak (aphonia). Cognitive function is usually unaffected. Communication is possible through eye movements or blinking. Locked-in syndrome is caused by damaged to the pons, a part of the brainstem that contains nerve fibers that relay information to other areas of the brain."

I had an AVM bleed in my cerebellum. An AVM is an arterialvenous malformation and what I had was comparable to an aneurysm. I had an AVM stroke. The bleed was next to the pons, and I remember the pons was specifically mentioned. Locked-In Syndrome is associated with damage to the pons.


What is more amazing is this was never written down until the above by Dr Morse (years later when I wasn't Locked-In anymore). What was written down was that I was vegetative, or PVS. I was in a coma. The Locked-In Syndrome is called "pseudo-coma."  "Locked-in syndrome is also called pseudo-coma because affected individuals are conscious but make little body movement – like unconscious “eyes-closed” coma patients or unconscious “eye-open” vegetative state patients." I was vegetative, eyes open.

It is classified as Classic, Incomplete, and Total. I am guessing I was Incomplete. I did shake my head early on, so I did have some movement. As time went by I gained more movement.
It is possible to have some recovery from this disorder. The following study uses fourteen patients. This is a rare disorder. It would be difficult to find 14. "In a series of 14 patients with classic or total locked-in syndrome seen 3 to 6 months following neurorehabilitation, motor recovery was found in 21%; return of swallowing in 42%; verbal communication in 28%; bladder and bowel control in 35%; and weaning of the ventilator in half of the patients,"  

Some recovery is possible. It doesn't always happen, but it has. It is not a miracle. I've looked exactly like this. I do not look vegetative right now. I look like that description.

So I've had something that is amazing, and I've made a more amazing recovery, but it has been mislabeled. It all becomes a miracle. On top of what is already amazing, I propose I may have one more amazing thing. I propose I have Savant. Syndrome. You are reading (following) this aren't you? Case closed. Without it, a severely brain injured person will have difficulty communicating in this manner. I know a few brain injured persons with blogs. None of them are PVS. PVS is yet to communicate.

I already do this, "Those who recover some motor control in hand or head (as will over half of the patients) can use this to communicate with a computer and sometimes control their wheelchair." I am using this computer, and I use my electric wheel chair. Due to the Savant Syndrome, I propose I will be doing more. My control and range of motion are already considerably more than when I was in the hospital.

It is possible that I was vegetative, PVS, and my progression has been towards Locked-In Syndrome. My case should have been updated along the way. It is possible there was misdiagnosis of my condition initially. I was in a pseudo-coma when I first opened my eyes. Either way, I am not vegetative and my records should reflect that.
I am listed as PVS, Permanent Vegetative State. I'm saying a goof was made. I am not permanently a vegetable! Back then I should have been listed as Locked-In Syndrome. It's too late for tests now as I'm not locked in anymore. Questions of consciousness should not be directed at me. LIS is conscious. My current state, PVS (on paper), is not conscious.

Thursday, June 9, 2016

I'm Here

I don't know what I am, but it is definitely not vegetative.

A grad student once proposed that what I have is more like an extension of Locked-In Syndrome. This person knew nothing about how I previously believed that I had Locked-In Syndrome compounded by a vision problem. This was then misdiagnosed to be vegetative.

I could not respond to letters on a letter board if I couldn't see the board.

Isn't this the problem of poor academic performance? For years students who performed poorly were found to need glasses?

I was just the extreme. I've had improvement in vision, but progress has been as slow as everything else.
Now here's an idea...people who are conscious in a coma aren't in a coma at all. They have a severe form of Locked-In Syndrome where there is absolutely no movement; not even the eyes. This person appears to be in a coma because they can't open the eyes.

I can propose this idea of a severe LIS (Locked-In Syndrome) because I could hear before my eyes were open. "Hearing was definitely first. I could hear before my eyes were even open. Coma scales talk about lighter coma as it ends. This would be that." Researchers will be interested in this essay. I list the order of the skills I have acquired since opening my eyes.

On top of everything, I propose I have Savant Syndrome. I would remember something as little as hearing in a coma so long ago. You would also get this analysis, all typed with one finger. (By the way, as I type, I notice my left eye is shut. This is probably my body's way of treating low vision in my right eye. Remember the doctor patching the stronger eye in children? The same thing is happening here.)

All kinds of people have suspected I was Locked-In. I never had to tell them the suspicions I once had. "For two years, Angela suffered the “locked in syndrome”!  This is a horrifying condition in which the patient is conscious and yet has lost virtually all motor function."

What I now have is more likely related to what I once had. I never thought it was Persistent Vegetative State.  I suspected Locked-In Syndrome. There wouldn't have been a regaining of consciousness at all. I have had progression to higher consciousness, but Locked-In Syndrome is already conscious. I've been conscious the entire time my eyes have been open.

What about people already conscious in a coma? Well, they really wouldn't be in a coma, now would they?

Is there anybody in there?
(A savant has to have some music somewhere.)

Monday, May 23, 2016

Looks Can Be Deceiving

I was one of these It makes sense to me now.

I was very much aware of my surroundings but I don't look like I am. My youngest daughter is at home. She says I have "bitchface." I looked at my face in the mirror. I show no affect. There's no emotion whatsoever. Happy, sad, angry, or surprised, I don't show it. Here's more on Resting Bitchface Syndrome,

Treatment has been given due to looks. I look like a vegetable so I am placed with vegetative patients.

A music therapist describing me at a hospital... "They put Angela in a wheelchair right in front of me and told me I could start playing. While I played Angela said to me, " I used to play that song on piano." I was shocked that she was able to speak and carry on a conversation - even though she was a little hard to understand in the beginning,"

I describe another situation, "I was at a new hospital (there were many in my long stay). I was fed up by then with new staff having to learn my qualities. So I had a bit of an attitude.

I could hear a nurse outside my room in the hall.  She was talking and laughing with her friends. She came into my room and she changed. She spoke to me very slow and simple, like I couldn't understand. I was getting angry, and she continued. I was just getting angrier. Finally she finished. Lucky for her I'm a smart-ass. I said, "You must be special."

She stopped right there. "What?"

I have been starting to smile. Hopefully that makes a difference. My bitchface can fade away, then.

This came out recently,

How Some Patients in a Vegetative State Can Retain Awareness, Despite Appearing Unresponsive

Neuroscience News

When I first opened my eyes I understood that two hospitals were competing for me while I was in a coma. Why? Probably this, or, me showing consciousness. Something while my eyes were closed must have indicated to doctors that I would regain consciousness. Sorry guys, it took longer than there was funding.
Not only am I writing, but the concepts require serious depth. The issue of savant syndrome gets pulled into this. I finished high school when 16, as well as other early stuff. Savant syndrome might get muddied in this. It might be the answer. Technically, though, I am unconscious on paper. So only I ask those questions.

Since I am writing, there is absolutely no question about my consciousness. Why the government continues to question whether I am conscious or not is a good question. Are they worried something bad will happen?

Wednesday, May 18, 2016

Great Shot of My Hands

Sometimes the unexpected shows up in a picture. I wasn't expecting to see this at all. This is initially why I was determined brain dead. I just had the posture and nothing else. Now in this picture, you see the posture, but I add something else. Not only do I add something. but it is the exact opposite. I add life.

Somebody once said to me, "Are you decerebrate?" I wanted to answer 'yes.' That's what this picture is minus the baby. If that picture was of just me laying in a hospital bed, most would say it's the end of life and time to pull the plug. "Are you decerebrate?" or "Are you brain dead?" It's a rhetorical question.

The photo above is impromptu. I didn't plan it at all. My daughter was caring for a friend's baby. He was fussy. I said hand him to me.

The baby got quiet and my daughter took a picture. I looked at it later. It was a great shot of my hands.

Look at my hands. My left hand (your right) is the one I use all the time. It is primarily closed. The palm and thumb are open, but the fingers still come down. My right hand (left side of photo) is no longer tightly fisted, but it is still in a fist.

I earlier had a picture showing the decebrate and decorticate positions. 

The terms mean no cerebrum or cortex of the brain. My hands are still bent. It is said I have no cerebrum or cortex to use. Umm... I am writing this. That picture above, at the top, was just taken and I still exhibit the posture. How am I functioning without most of my brain?

Sunday, May 8, 2016

My NDE(s)

Recently, I was reminded that I did not initially believe I had a Near Death Experience (NDE). I didn't see or hear anything.
When I got medical records, there it was in black and white. I had to be resuscitated.

Click to make bigger.

Further evidence can be seen in my body and behavior since I had a brain bleed. I exhibit many of the behaviors listed:
1. Death is joyous, safe, comfortable. a continuation, not to be feared.
2. Change in profession or job
3. Greater spiritual outlook on life
4. Increased risk taking
5.  Greater "zest for living". Life is for living, the "light" is for later.
6.  Greater appreciation of the daily struggles of ordinary life.
7.  Sense of meaning, even in the most mundane aspects of life.
8. Divorce is common.
9. Greater sensitivity to emotions, feelings, lessons of love.
10. Increased time spent with family, friends, social activities
11. Greater contributions to charity, volunteer service.
12. Decreased over the counter and illicit drug use.
13. More loving, caring for others.
14. More likely to be in a helping or service oriented profession.
15. Can be more resilient emotionally, take more emotional risks as transformation permits accelerated healing.
16. Become religious or spiritual leaders especially after Hellish experiences.
My NDE belongs with the other NDEs, but I had no recollection of one occurring. It does fit in there somewhere. I don't know how to get it recognized. I found the following video interesting. I can't confirm or deny any of it. It is not mine. 

I suppose my Near Death Experience would put me with the other miraculous healings in this video.

The first NDE had to have occurred while my eyes were closed. There could have been one or more. My eyes were closed for 5 weeks. I do have one recollection of seeing the pastor from my church. He was there at the hospital in the very beginning when the coma would have been full-on. My eyes were closed. I couldn't have seen him with my eyes.

Another "experience" happened later while I was still hospitalized,  Again, I did not see anything. Afterwards, I am filled with wonder and awe. I am not dead! Isn't anyone impressed by that? The people present weren't.

There may have been times in between those two. I wouldn't be surprised if it had been happening closer to when my eyes were closed. Memories are very few for me.

People seem to be more worried that I will sue them. That is not my intention. If I was going to sue, I would have done so already. Rather, I see this as a learning experience. Why did I wake up? What works better? (Obviously something is working if you can read this.) I've done traditional and non-traditional. I've done a medication for the eyes linked to restoring vision. My right eye is no longer blind. (That was luck.) Art Therapy - where's that? I took it as an elective in rehab. It was after hours. I once had Massage Therapy. Recreation Therapy is never mentioned and more places offer it now. There's just too much to list.

It hasn't been any one treatment or procedure to heal a brain injury. It's more like a positive attitude, a diligence for exercise, and something strange happened.

I contend there was more than one "experience." Records already show I was near death. If not, then, it could be said there has only been one experience lasting from 12/16/2002 until now. Everyone who reads this would have to have psychic powers, as I am in a coma. My lack of consciousness even affects this area.

Friday, April 22, 2016


Do some of you remember you or your children using pattern blocks in school? These are the beginnings of learning geometric shapes in patterns.  

is something that I wrote explaining why I played Mahjong and not Sudoku after sustaining a brain injury.

Mahjong would teach patterns, a basic concept. A math game would teach math-a higher skill. Think about what you had in kindergarten. That's where you want to start.

The old neuropsychologist whose blog I read would have been right. Pattern recognition is more basic of a skill. Learning that would come before math computation. That should come first in re-learning after a brain injury.

To illustrate (shape and pattern recognition is more pronounced in Savant Syndrome) I'll use a story where a head injury predominately uses visual information to reorganize a damaged brain. There is definite brain injury and then reorganization on this basic concept of pattern recognition.

Getting back to video will want to build on this 'visual pattern recognition' when there is injury. Mahjong is on most computer systems and versions are available as a free app. Instruction on how to play can be found on the internet. "Pattern recognition" is transferable to other games. Candy Crush Saga uses pattern recognition and matching. Other games will, too. Mahjong is a good beginner game, and then other games may be explored. You don't have to stick with just one.