I'll Say Congenital

Most know that I had a devastating  stroke, but I now write.  I can do other typical, and not so typical, things after the stroke. The things are amazing. What I am about to write is amazing. A person might say Savant Syndrome is involved. That disorder was never confirmed in diagnostic manuals.

My current diagnosis is "Semi-Vegetative." Vegetative is basically a coma, but the eyes are open. In my case, "Semi" was added when I started saying words. So, I am writing to you while I am in a coma.


Writing while being in a coma is amazing! Someone goofed long ago. I say long ago because the disorder Savant Syndrome was proposed long ago. It wasn't approved. A person with a disability could do something way beyond skill level. Now medicine is better. Something as menial as writing is astonishing when performed by someone "saved."

I once was in a full coma. That was years  ago. I was slow to open my eyes. That warranted the word 'vegetative.' Speaking, as I do now, does not.

I, and others, have disagreed with the government's diagnosis. I am in a pseudo-coma by their standards (which is currently not swallowing barium). Locked-In Syndrome is the appropriate name. My speech continues to be about simpler things, and writing contains more complicated ideas. I have noticed some change on video, so this is coming.

Writing occurs after a stroke, which can lead one to believe Savant Syndrome, Acquired.

You can acquire Savant Syndrome from a brain injury or CNS incident. I had a stroke and a car accident. This is the acquired form. There is another form. Some are born with Savant Syndrome. In this case the disorder is congenital.

I had my mother describe to me my early development. "...you had a foot that was more dominant and one foot that turned and dragged. You had to have a special shoe." It goes on. "Also your eyes didn't focus well and one eye drifted. You also used to bang your head on the wall purposely," Myra Metz.

That's a special needs child being described. There was a previous brain bleed. I hold a degree in Early Childhood Special Education. I ran a home-visiting program just for this type of baby. Identifying the special needs child is second nature.

_____________________

Growing up, I'd hear the horror stories of my birth.

My mother died during labor and had an out of body experience. Forceps had to be used to pull me out. If you never heard of these things, they were these giant salad tong things invented to grab and pull a baby out of the birth canal. These things aren't widely used anymore. There were too many complications. My mother now suspects these things in creating the AVM anomaly in my head that bled 32 years later.

"You were born much too early." I am almost 50 and still hearing about it. "You were induced."

Then it clicked. That description of my early childhood was of a baby that had a CNS incident. I was induced, most likely due to fetal distress. Doctors didn't tell patients crap back then. Of course it was a horror story. 

If those forceps had caused the AVM in my head, there also would have been gore and I wouldn't be here to hear the story. Forceps would have had to squash my head nearly flat to create an AVM that deep. Sorry Mom, but the AVM was already there. They are congenital. It would also be the cause of your pain. Bleeding caused fetal distress and set off your whole cataclysm of events.

Everything resolved nicely. I went on to play piano, and then excelled academically. Now I had a stroke and am writing in a coma. This last sentence doesn't sound right. Maybe Savant Syndrome should have been made a disorder.

There Is No Pump!

I receive feeding/formula in bed 

and sometimes in a wheelchair.

I have gravity feeding through a feeding tube. This means there is no pump. Should I explain gravity? It's a force that pulls you down. If it wasn't there, you would be floating.

A formula is hung up on a feeding pole. This pole is also an IV pole. Gravity pulls the fluid down. Feeding is given like IV medication.

The formula I get is also a popular nutrition drink found at most neighborhood grocery stores. It is easily found. It is pleasant tasting to the general public. It is no wonder that this particular formula would be chosen for someone who has reflux. Who wants to taste formula with barf?

It's pretty easy to adapt the feeding tube for independent living. These changes should occur under medical supervision. Mine did.

I Should Be Non-Vegetative

'Non-vegetative' is not an accepted diagnosis, like 'semi-vegetative', my current diagnosis. Use it Centers for Medicare and Medicaid. You are on a roll. -Angela 

A brain injury must get rid of your star.

From social media: "It's going on 17 years since my stroke. I'm still waiting to be rescued. What you see now I have done on my own. This is typed with one finger."

Shocking evidence shows people in vegetative states may be conscious

I'm vegetative. I thought that typing out my answers would change my diagnosis. I thought wrong. The reason for my diagnosis only changed. First, I was vegetative because I did not talk or make any physical response to people I did not know. 

When I started vocalizing, the doctor "did not understand me." I decided to rehab my hand so I could type it out. I knew how to rehab a hand enough to use it. I was an infant specialist years ago. I could at least rehab to a baby. 
 

When I started vocalizing, my diagnosis was changed to "semi-vegetative." The word 'vegetative' was kept. Whether it was for legality or discrimination, this was wrong. The error made in misdiagnosis was being seen. Instead of fixing the error, it is carried forward and the word "semi" was added. At this time, it should have been changed to "MCS, or Minimally Conscious State."

I'm able to now write full papers and make videos. A new diagnosis is in order.

No, now I'm vegetative because I can't swallow. I did not swallow barium during a swallow study. This usually is a 3-party test, in my experience. There are the x-ray technician, someone to administer food + barium (usually a speech therapist), and the test subject. The administer was lacking from the government when they ordered testing for diagnosis. A doctor wouldn't have missed this. They know what is involved with the x-ray. The hospital therapist stepped in during my x-ray. I did not swallow barium in applesauce.

Since the word 'vegetative' is being kept, I propose that my diagnosis is now made 'non-vegetative.' this should mean that I am conscious. I was conscious before, yet the word 'vegetative' meant I wasn't.
  

As far as disability, use the term 'brain injury.' "Quadriplegia" is not sticking. I'm using my left hand to type. There is no such thing as tri-plegia. 

I'm not using magic and a special changing machine. It is called time and growth, and the little knowledge I had of rehab.  (Well, maybe a lot of knowledge.)

Brain Injury Rehab 
in this case