Saturday, September 22, 2018

Gaps In Time




I opened my eyes after a coma, but I didn't talk or move. Almost 16 years later I write this. That's a big gap. When did I wake? Fortunately, or unfortunately, because of the government I haven't woken up yet.

Now you need to know what happened just prior to my long (eyes-open) coma. I had been in a deep asleep (eyes-closed) coma for over a month. Initially my GCS was 3. This is the Glasgow Coma Score and the lowest you can get while still being alive. I was still hemorrhaging when I got to the trauma center. They only stopped the bleeding. I was not expected to live.

The trauma center is the third hospital I was taken to on my eventful day. I first went to my town clinic. It is not a hospital, but it was the closest medical facility. I stopped breathing there. They intubated me and put me on an ambulance to the hospital. This took a couple hours just to drive to. That second hospital immediately put me on a helicopter to a trauma center. I was not breathing on my own. I was intubated and on a respirator for the entire ambulance ride. It was amazing that I wasn't dead yet. The trauma center was the third hospital. They did the initial surgery to stop the hemorrhaging. They only stabilized me. No brain repair was done here. That is not their job.

I moved again to another hospital for opening my eyes. This was the rehab. It is attached to a large hospital. Very few rehab centers are like that.

After opening my eyes, technically just one eye, I was made PVS. This stands for Persistent Vegetative State. No one had ever recovered from this state, but it was thought to be possible. Those who have previously recovered from a coma but became unresponsive were most likely made MCS, or Minimally Conscious State. Their responsiveness was very minor and barely picked up.

I moved a few times in my long stay. My placement was actually changed while I was having surgery at an unrelated hospital!

My diagnosis was changed to "Semi-Vegetative" two years after my bleed when I had surgery. I had brain surgery at Stanford University and Hospital. They even argued I was not vegetative. (I most likely was not vegetative and should have been changed to MCS.)

"Semi-Vegetative" has felt more like MCS. The term "Semi-Vegetative" is not in the usual diagnosing manual. I had to ask a friend what it was.
 _______________________________

I had been experiencing gaps in time.

Click

I'm glad I wrote this down. It's a note on Facebook. I used to have gaps of missing time. People around me didn't. Staring off into space for longer than a moment gets noticed.

In the hospital, the first after opening my eyes, I would stare for days, weeks even. When I went to a nursing home, (Yes I moved again.) staring was for a few hours. I remember that they took me to a hospital for an evaluation for seizures.  It was determined that I wasn't having any.

Staring off into space became less and less and I moved a few more times. This is when I had that surgery- AVM removal and neural repair. The surgeon explained that effects wouldn't be noticed immediately.

Staring must have appeared as daydreaming by the time I came home. Like the neurosurgeon said, effects wouldn't be noticed immediately.

_____________________________

 The man speaking (the younger man) was initially staring. Under advice from a Music Therapist
his father put music on. The man starts speaking.
You see the father wipe away a tear.

I received Music Therapy at the last hospital I was at during my long stay. It wasn't offered at any of the other places I went. The effects have never been investigated. That movie clip is based on a story the late neurologist, Oliver Sack's wrote. This man had a brain tumor. The effects can be close to the AVM I had in my head. There is a very possible link here.
 
     I am with the Music Therapist.

It is this Music Therapist who encouraged me to write my first e-mail. This in turn led to the writing that you see today.
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My getting better is just another gap in time. The time from surgery to now when I write this was never tracked. Ask, "What happened Stanford?" because the surgery was them. Tracking was the government's job. (Here's another gap. You Only Had One Job) Everyone washed their hands from it. I'm the only one who tracks with these notes, and I am brain injured. (Shame on somebody.)




Tuesday, September 18, 2018

To Take a Class









CLICK

A truly vegetative person can't take a class, but a misdiagnosed person with severe paralysis can.


So it goes.... The original diagnosis looks silly doesn't it? Even sillier are the current attempts to keep it. I have to pass a swallow study.

Let me get this straight... I have to swallow in order to be conscious?

Now I'm looking at this class. I don't see neuroanatomy swallowing.
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THE CLASS


This is an on-line class. It's at Duke University and is offered through Coursera.com.

I can't go to the classroom. I'll bring the classroom to me.



Tuesday, September 11, 2018

Opening My Eyes




Yes I remember when my eyes were shut. I don't have much, but I will share it.

AUDITORY AGNOSIA was mentioned in a video about PVS and MCS. I assumed that was hearing, but not understanding. I had that! I could hear in the coma, but I couldn't understand. It's easier to explain with music. I could follow a melody, but not the lyrics.

 Auditory Agnosia explains why I had such an extreme desire to open my eyes. Family and loved ones may have been telling me to open my eyes. I may have heard hospital staff around me and knew that if I didn't, then life-support would be withdrawn. (This is why my early medical records are the way they are. Doctors were making the case for brain death and removing life-support. http://thoughtfulveg.blogspot.com/2017/01/whats-so-special.html)

The thing that really got me was that I kept hearing a buzzer. It was behind me and to the left. This would play a big part and people would not know it. They only know now because I write about it.

I was sleeping good. I kept hearing a buzzer and I thought it was my alarm clock. I thought if I could just reach up and turn it off. I wasn't confused as to why I heard it in a different place. I should have been. My alarm clock was in this area years ago. Just like sleep will play tricks on you, so will a coma.

When I opened my eyes, I found out the area I had heard the buzzer was where the ventilator was. I found out that the alarm kept sounding on a particular machine.

I opened my eyes just in time. Life-support was to be removed that day.
_________________________________

I contend that my coma was during the time my eyes were closed. This time right now that my eyes are open is NOT a vegetative state. That's very clear because I write. Before writing and after my eyes were open was a false coma. Pseudo-coma is in the literature and goes with Locked-In Syndrome.


from the NORD website

I am using one finger to type. I do not have control of other muscles except for some vocal ones. I speak some. Mostly everything now moves. I just don't have control. Everything except one darn ankle. It's not looking as bad as it once was, but it's far from the rest of me.



Thursday, September 6, 2018

I Am From Limbo


Facebook must have changed it's slogan to "If you are looking for a good time." I say this because I'm getting an extraordinary amount of sexually suggestive messages, on this site only.

I have a Facebook account and a majority of questions I get come from people affected by brain injury. I have a lot of sufferers, family, and researchers who follow me. There are some just interested, and I recently started getting followers that some would call right-to-lifers.

Lately, I keep getting messages asking where I am from. It has been enough for me to write about it. People who read these know I am not in a hospital or medical facility anymore. They know I am in California and this has played a big factor in my survival. I didn't have the political policy pushing for the removal of my feeding tube. The people who read this wouldn't ask me where I am from.

Limbo is a place of uncertainty. When I was younger, I heard it referred to. Now it's just implied, but I'd guess a priest would explain it to you. In Catholicism, when a person dies, they don't go straight to Heaven. They go to Limbo. They are prayed for. Also, all the unbaptized babies go there. (The order is Limbo, Purgatory, Hell.) This was still a big concept in the '70's when I was a kid. It was somewhere in between Heaven and Hell. It isn't talked about much anymore, but people who have recently died are mentioned at church services so they may be prayed for.

I'm just going to start answering those "Where are you from" questions with "I am from Limbo." I'll also roll my eyes. I am neither in Heaven nor am I in Hell. I'm not dead or conscious. I am Semi-Vegetative. That's a coma. I'm in between just like limbo is in between.


Where is Limbo?


UPDATED 9/19/2018

Saturday, September 1, 2018

I Have to Swallow to be Conscious?


When I opened my eyes I was made PVS. I presumed that was because I wasn't talking or moving. Movement started some 2-3 months after my injury and vocalization was 8-9 months after injury. Speech production was so late that it was thought that I would never talk. I need to add this to The Order of Coming Back.

A few years later I am moved to another hospital. This is my sixth placement. My diagnosis is changed to Semi-Vegetative because I'm vocalizing. I am put up front for visitors. "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...." Read the part from David S. http://thoughtfulveg.blogspot.com/2012/02/angela.html

I leave that hospital for my own home. I am not discharged, but care is transferred to family. Before leaving, I actually argued with a nurse I'm not vegetative.

Years later I'm given a swallow study at my local hospital. Again - the test was done before when I had pneumonia, and a second time when the government stopped providing the formula for the feeding tube. The test was also done years ago at the rehab hospital. I swallowed to my lungs not my stomach. I remember the rehab used red Jello. The Jello came out my nose. 

I didn't swallow for these other tests and remain Semi-Vegetative. Now the rehab diagnosed dysphagia after the first test. Dysphagia is an inability to swallow. The later testing should have occurred after therapy to determine effectiveness of the therapy. Instead testing has been used as a determining factor in providing services, and this last time... as punishment? To use it as a means for stopping nourishment is only punishing and abusive. If you thought the Terri Schiavo outcome was bad, I am aware and can speak. She probably only had limited awareness but then you get into what I believe is going on. For that you will have to look into neurogenesis. I've previously written about neurogenesis. Here's a few:  Neurogenesis Is a Process, Stop Calling It a Coma, The Problem of Neurogenesis, My Late Recovery. I've written much more. You'd think I've written a thesis.

So you have to swallow to be conscious? I don't swallow and am not conscious.
___________________________________

If you want to watch a pretty girl eating a lollipop, then 


The whole thing is 15 minutes of the girl eating a Blow Pop and then blowing a bubble. I know because I skipped through the video.

Now I avoid Blow Pops because they have gum and they are big. Dum Dums, a smaller lollipop, are more my size. I also like some of the all natural vitamin lollipops. You have to look around. I need to work on swallowing and not licking. Gum is not meant to be swallowed. I want the lollipop small enough for lip closure around the candy.

Speech therapists did your training ever focus on just swallowing or only speech production? One told me both. I'll work on moving the lollipop in my mouth with my tongue. I especially pay attention to my weaker side. I will specifically place the candy on the weaker side. I will not keep it there for the duration, but I want this area exposed and stimulated. Children won't do this.
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I have some lollipop videos, but they are more than just eating a lollipop.






Sunday, August 26, 2018

Closest to Mine



I had a brain injury, but I am smart. I once told someone that I should be "mental mush." People have a hard time understanding that a brain injury can make you smart. It's very rare,  but a brain injury can make you very smart.

Here is Jason Padgett's story.



Now his story is the closest to mine, from the brain injury to now. Before that it was like Doogie Howser and Malcolm in the Middle in childhood. Young adulthood doesn't have anything, although I suppose that if a young Doogie had dropped out of school, went to his local community college, and did psychology instead, you might have something. Oh yeah, Doogie would have to be female and have to have a couple of kids.


Doogie Howser
High School was 2 1/2 years for me.


Malcolm  in the Middle
 I was smart but fit in socially.


I had a stroke not a mugging. It was caused by a blood vessel in my head leaking blood, not the clogged arteries warned about. I also had very low blood pressure. So this is rare and unusual.

I had a bleeding (hemorrhagic) stroke.

Substitute a story for a picture. Jason Padgett sees geometric shapes and will draw them out. I will write, mostly about my experience, but there are a few other things out there. Jason is Pythagoras to my Shakespeare (Remember school?).

I will try to include neurological concepts. I've experienced so many that it just fits that I put them in my experience. My life story becomes a learning experience.
 
My brain injury happened the same year as Jason Padgett's injury, but I am not studied. My injury was much worse. My heart did stop. I wasn't breathing. It can be said that I died. Stop right there. A lot of people thought I was dead. When I came out of a coma, I appeared brain dead.

Surgeries were done that I wasn't expected to recover from. I did. It's been a long time recovering. I currently am "semi-vegetative." Technically, vegetative is still a coma. The eyes can be open, but recovery is not there, yet.
 
I'm still not done, but I write now. I WRITE. Obviously, I'm not brain dead. I'll most likely also go back to school. I'm not at that point, yet. So I don't make plans.

Thursday, August 23, 2018

Tube Out




It disturbed quite a few people (that's how many it appeared to me) that a young woman had her feeding-tube removed. She subsequently died.

Through misfortune, I ended up vegetative with a feeding-tube, but later, with good fortune, I can have my feeding-tube removed and report back to those people and others. I am not totally without a tube, now. I just have a new one.

This video above just shows taking out a feeding-tube. It doesn't show another tube being inserted.

After the old tube is out, a new one is put in, in my case anyway. For a lot, once it's out, that's it. When I was in the hospital, I had the same tube for years. (I was in various hospitals 4 years.)

"Healing" for me when replacing my tube is swelling and leaking. After a few days that stops. All resumes as normal.

Since I am "aware", although my diagnosis says I'm not, I can replace my feeding-tube through my Medicare. My diagnosis is "Semi-Vegetative." That sounds different. I obviously talk now, so vegetative doesn't cut it. Doctors aren't sure what to call me.

There's no starving here. I may not be able to do a lot, but I can direct my care. It's good fortune that I tell you.

________________________________________

Now remember how I said that it appeared to me that quite a few people were disturbed by what happened to this other woman? I've recently been adding quite a few to one social media site. (I belong to a few different Social Media programs, so look.) The following video was sent to me. I immediately thought of the woman who passed away.

Thank you congregation.
This video did not have any identifiers.


To the people who were bothered by that other outcome, the same thing didn't happen here. Nothing here is the same.