Friday, November 29, 2013

"What the Hell Happened?"

Original 11/29/2013
Updated 3/11/2015

Besides "What the Hell happened?" her injury is a brain injury.

So, what happened with me? This is just a guess.

I really don't think there ever was PVS, I was probably MCS with low vision and labeled as PVS. As I have become more conscious it looks miraculous. I most likely had the central auditory agnosia described in plus a severe vision problem. (My mother had to present a LARGE written letter?) I would have been deemed PVS just because of that initial brain scan. Rewiring hadn't happened yet. Of course it looked vegetative.

Some conditions are difficult to diagnose.

Most likely, my brain lobes weren't dead. The wiring was dead and the lobes couldn't do anything. "The nerve fibers from the cells were severed, but the cells themselves remained intact." Nerve cells that have not died can form new connections. What appeared dead wasn't. Rewiring was needed.

I do credit Posit Science and their program InSight with seeing as well as I do, but it is still with primarily one eye. I am no longer blind in the other eye, but it is weak. When typing this, I still squint and I quite often close my right eye, the weak eye. It would have been blindness due to a lack of rewiring. Posit Science's program rewired my brain. It did not perform a miracle.

Progress has been slow. VERY slow. Imagine you have a 365 page book. You are only allowed one page a day. It will take a year to get through that book. Now you have a shelf of books. That's going to take a few years. A whole bookcase? That's the rest of your life. My weak side may be doing much more in ten years. I still have a lot of books.

His "injury" was an AVM bleed like I had. Mine was just worse.

The head trauma still happened. Acquired Savant Syndrome needs to be looked at. The 'lots of knowledge' has always been there. This statement gives rise to thoughts about Acquired Savant Syndrome. Knowledge is there but it is now processed differently. I'd also say there is more and it includes things I wouldn't know. There's also an amazing recovery. "Savant syndrome, both in the congenital and acquired types, provides compelling evidence of remarkable brain plasticity." This is just more reason.

Why isn't this disorder recognized? It offers plasticity. That's needed. Why is plasticity here? How do we get it? Can't tell you. Since this disorder isn't recognized, no one will ever know either. Hey, I'm not conscious. So I didn't tell you that.


Dr. Jill Bolte-Taylor unknowingly describes auditory agnosia in a stroke. At 12:55, "My colleague says to me 'Wo wo wo wo wo'."

Hers resolved, or rewired, quickly. I was in this state a while, maybe a few months. It's hard for me to tell, as I had no concept of time during that period, and no records were kept, because it's not known what to look for. It definitely was the entire coma (5 weeks) and for some time after I opened my eyes. It could be anywhere from a few days to a few weeks.

I have stated I heard in coma, but it's not words that stand out in my mind. It's an alarm. The ventilator had an alarm and this going off is what I remember. Talking to a person would still be important. The sound of the voice, if not, the words, would be understood. Some may understand words. This is only my experience.

Saturday, November 2, 2013

My First Blog

I just got my blogs from MySpace. MySpace has changed ownership and is a music/entertainment site only. I started blogging over there. I moved to looking for stability. 

When MySpace changed ownership, accounts were stopped. Blogs weren't exactly lost. A request for records had to be sent. I've waited a while.

Subject It's Possible
DateCreated 9/29/2006 11:43:00 AM
PostedDate 9/29/2006 11:38:00 AM

Recovery from the 'locked-in' syndrome

E. A. McCusker, R. A. Rudick, G. W. Honch and R. C. Griggs

Four patients made substantial recovery following the locked-in syndrome of vascular origin. Clinical and radiologic features supported the presence of ventral pontine infarction secondary to basilar artery occlusion. Quadriplegia and mutism persisted for one to 12 weeks before recovery of motor function began. Improvement continued over several years. All patients regained functional though dysarthric speech. Three of the four patients are ambulatory, one without assistance. As a few patients make a notable recovery from the locked-in syndrome resulting from ventral pontine infarction, aggressive supportive therapy should be considered in the early months of the syndrome.

You can see I did this years ago. It's also very short. I only did the title. The rest is an article of a study. I found the original. It's on PubMed.
Locked-In Syndrome was a big deal. I recovered and I knew many hadn't.

I had to blink for yes and no. This was a means of communication, warranting an MCS diagnosis, but it was too late. I had already been given PVS (this was the first error).

My mother learned I had to be presented with a written form of a letter to blink yes or no.  The letter had to be large due to poor vision. This sounds like what he describes in the video above, Central Auditory Agnosia. He might be one of the few in this country to recognize it. The blinking for a letter is Locked-In Syndrome.

Since I was already PVS, the Locked-In Syndrome was never recognized.


If you went to my MySpace page, I had the following video at one time,


That video is about Jean Bauby. He was a journalist, author, and editor of Elle magazine. He suffered a stroke and went on to write a book by blinking one eye yes or no for each letter. A movie was made. It had the same name, The Diving Bell and the Butterfly. He had Locked-In Syndrome. My experience has been close to his for a long time. It's not now.
I chose this video because it shows Bauby getting Trache Care for the tube in his neck. That tube is the reason I have a hole in my neck. The hole is getting smaller, but not very fast.

In the top picture I was still on the ventilator at night. The bottom picture shows the hole left by the tube although surgery closed the airway 7 years earlier. The tube itself was even removed a year before that. The hole never closed, and I could breathe through a hole in my neck.



Now that I think about it, I've really increased in skill since then. I'm a head and an arm and I talk now. Since writing that first blog, I now push to a stand. I can type a lot faster, and my blogs are a lot longer.

My new MySpace profile

I use MySpace for music. I've started a few playlists in MIXES.

UPDATED 5/21/2017