I Should Get Services

To deny that I am conscious is only to hold back progress.

I, too, think I should get OT (Occupational Therapy), PT (Physical Therapy), and SLT  (Speech and Language Therapy), in addition to the nursing services I now receive. I can only forward this comment.

Obviously I am talking to you. If I was vegetative I wouldn't be able to do that. Vegetative is considered a coma with the eyes open. I am not in a coma. I am not vegetative. Something else has to be given as diagnosis.

I think my diagnosis as "semi-vegetative" has thrown everybody. It allows a vegetative patient to talk. Contrary, "Minimally Conscious" should have been given at that time. I doubt I am still minimal 15 years later. A whole stage wasn't tracked other than my posts. Someone better get these in case companies fold.

Even if my local university can only document, then they should. It is crazy that there is absolutely nothing other than what I do myself. 

My case isn't a right to life issue anymore. Now, it's to see how far a person can go. My issue has no borders. Other countries click this blog. This is for humanity, and humanity is losing out right now.

Are You Smarter?

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My father asked if I was smarter. He already knew I was smart. -Angela

I know people click on "Phenomenal Recovery"  looking for reference to me. 

https://thoughtfulveg.blogspot.com/2019/04/phenominal-recovery.html

There is some but not a lot. It's more about that woman, Kate Allatt, in the second video. She had full recovery of speech and ambulation when it was thought that a stroke left her in a coma. She ended up being diagnosed as Locked-In Syndrome. 

If I was diagnosed Locked-In Syndrome, I might also be saying the same. I wasn't though. I was given vegetative, PVS. 

Some playing around with diagnosis has happened and I am now semi-vegetative. "Semi" takes care of this talking thing.

I don't say I've had a phenomenal recovery. I'm not done recovering yet. My diagnosis is still "vegetative." I know it has been 17 years since my stroke, but I continue to make progress.        

This is Orlando Serrell. He was hit with a baseball, and developed amazing memory. 
He continues to improve.

The person above had a brain injury, does something amazing, and continues to have progress. Those same criteria fit me. I continue to have progress (but it is called recovery, years later). This man has savant syndrome, though, and I don't. I am in an open-eye coma.

Savant syndrome wasn't ever a recognized disorder in the scholarly community. You can't look it up in the DSM or any other diagnostic manual. However, it was recognized in the media.

In 1988, the movie Rain Man was released

about a man with Autism who had 

Savant Syndrome.

I do something different. I talk, write, and get better. Talking and writing don't sound amazing until I tell you that I am in a coma. I'm vegetative, so it's a coma with my eyes open.

That doesn't sound right. It isn't. 

People don't talk in comas. What was thought to be a coma was really a pseudo-coma. No wonder why that woman was reclassified as Locked-In Syndrome.

There may have been a coma start. At some point there is transition to a pseudo-coma. In blind and low-vision persons there is no eye gaze. I am low vision.

He says to use eye gaze.

________________________

I don't talk and write in a coma, giving me Savant Syndrome, Acquired. People are amazed that I am so smart, though.

I already was smart! 

I left high school when I was 16 and started college. I got my AA at age 18 when my peers graduated from high school. The following year I got my BA.

This is interesting, as in woo-woo.  My BA is in Psychology and I use it. I know diagnoses. Here's more woo. At 24 I got an MA in Early Childhood Special Education. I specifically worked with the child who had my current problem.

________________

I will go on to say yes, Savant Syndrome, but it is congenital. The cause of my brain bleed was congenital and it is very possible that it bled in utero while my mother was pregnant.

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Talking and writing are splinter skills.

The bleed wiped out everything. Development was done again. 

Two years after my stroke, my playground was cleared out and cleaned. I had neural repair surgery. My cerebellum was damaged in the prior bleed and it was cleaned and cleared of all damage. I played and grew on my new playground. 

Brain growth had to happen all over again. There was a second development, but it started with the splinter skills of the typical child development. It used what was already there.

Talking and writing are left over from the first time (development). As I remember, test scores on an annual achievement test were in the 99th percentile for verbal and non-verbal. The test also covered quantitative and spatial. These scores were high, but not as high. The first two were my strengths. (I don't know how far back CAT testing is saved, but scores come from there.)

"Savant syndrome, both in the congenital and acquired types, provides compelling evidence of remarkable brain plasticity"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/

This is that getting better I do. Here's your Savant Syndrome.

Talking and writing is where current savant syndrome will and somewhat has occurred. Is it possible to see how much brain growth has occurred since surgery? This may be beyond current scanning methods. This will let you know, though, if there is anything left to expect.

This is introspective. It has to go to a trained and licensed professional. It is officially written that I am vegetative. I am currently in a coma and can have no influence on my current diagnosis.

Am I smarter? I could be, but I don't feel it.

Updated 11/30/2019

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

Hidden In Plain Sight

I wasn't placed in a facility. Most of those places don't exist anymore. I was continually  moved around. I think I once saw five places in two years. How often do you move in two years?

The last place I was at was over a year and I was happy. I came home because it was closing and I couldn't stand the shuffle. I knew I could handle the medical care. I had been previously trained. I just had to relay that info to a caregiver.

I'm physically disabled, not mentally disabled. Try saying that when you can't speak. I was made PVS, though. It was changed to Semi-Vegetative in 2004 when I started getting words out.

My stroke was 2002 so it was a couple years of not getting anything out. I'm still "vegetative." It now looks like gross misdiagnosis, but I'll let the public decide.

I can get more than a few words out now and it is understandable.

A Psych Classifying Herself?

How would psychologists who study the impact of brain injuries on individual behavior most likely classify themselves?

I don’t and I refuse to. I’ll leave that up to someone else. Which means doctors are screwed. This is why… While I was in coma- closed eye, then open, I was given Persistent Vegetative State. A bit later, I am communicating with the doctor by blinking for "yes/no." They already said I was vegetative and had submitted forms. I was made vegetative, and a payee paid my bills. Communicating with the doctor in this way was Minimally Conscious State (MCS) and I was most likely Locked-In.

I understood what was told to me, but it was difficult to give any response at all, even blinking. I have a BA in psychology. This area was covered. I was familiar with terms. More amazing. I have an MA in Special Education from San Francisco State University. I specialized in neurologically impaired infants.

I knew what a brain bleed was. I knew what lobes of the brain were. I knew that when a bleed as bad as mine kills off all the cells in all four lobes that I shouldn't be understanding. I knew I was dying. I couldn't respond. I figured I'd die soon. 

The payee was late. Doctors didn’t get their money. They screwed themselves. I could blink to family members to pay doctor bills. They managed to drop the payee, so I could pay bills, but I’m left vegetative. I should have been diagnosed Locked-In Syndrome. I am flat-out in a stone-cold coma between the first and second hospitals. You don't diagnose that at that time. The blinking came a bit later at the second hospital. I get stuck with "vegetative".

Years later I’m still "vegetative". I now talk. My diagnosis should be quadriplegia with some movement. I answer tons of questions like this one. I am no where near short of knowledge. My cognition is not compromised.

   
My diagnosis can’t be changed. The diagnosis became permanent after 3 months. Now research can’t be done. You can’t get consent from a not conscious person. People in comas don't get much of anything. They don't ask for anything. Vegetative probably isn't coma, but it is classified that way.
  
I’ve pretty much always disagreed with how a diagnosis becomes a label. This is that MA in Special Education. I see the diagnosis as a starting point and you grow from it. This means it can change. I’m not vegetative anymore.

Making It Fit

*This is about me, mainly. It's a little different.

Knowing HOW to access information is more important than memorization. The computer can hold the facts, but you hold the computer.

When it comes down to it, you will find I know processes. I didn't memorize a bunch of random facts. I have learned how to perform something. I'd be interested in it, so I would learn about it. This could involve history and use in other cultures. If something was mechanical, sometimes I would take it apart and put it back together. I did that a lot when I was younger, especially as a child. With ideas, sometimes I will put them to use. You are reading one. I learned the process of writing long ago.

I may or may not fit in the category of savant syndrome. I may have some things but not other qualities. (Maybe a subset will start. It might take care of that medical mystery thing.) This is why I don't like diagnosis and have always avoided it. (My background is psychology.) I turned and went towards special education. The children usually had a diagnosis or were close.

I communicate a lot, but not by speaking. I write it down. I usually use the 'non-fiction short story' as my format. This allows me to give information, but allows you, the reader to make inferences and come up with new ideas. The not speaking is going to fit in real well with savant syndrome. The style of writing, maybe, will not fit. Any style of writing used as a means of communication may not fit. I never did like these things- trying to fit in a box.

I type this all with one finger. That definitely fits in savant syndrome. I didn't always just use my left arm after a brain injury, though. Initially, I didn't have any arm to use. I knew I would move, but that was many years away.

I would have to remember everything. Again, strong memory is associated with the condition. I have that.

So, knowing HOW to access information is more important than memorization. I never learned all the diagnoses. I could look one up if I needed it. Instead I learned underlying principles of human behavior. That's my BA in Psychology. I could apply that to anybody. Not everyone will fit in a square box of a diagnosis.

This brain injury could probably be covered by a sub-category of savant syndrome that addresses creativity and is made non-specific, or NOS.

Let Me On

  I was written out. Now I want to be written back in.

_______________________________________________________

 
Okay, so I was in a coma at one time. I'm not anymore. Get on with it! Some people get stuck there. That letter explaining to me I am in something "referred to as coma" is just something else. http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html You get back on the ride if you fall off. Can I get back on? Stop making it hard for me.

Obviously I am not in a coma. I'm not 100%, either. I don't walk. I have an electric wheel chair. I don't eat like I used to. I have a feeding tube, and food can't go in my mouth.

I am diagnosed with dysphagia which is the inability to swallow. Well here's the catcher, I do swallow, but my airway stays open so I swallow to my lungs. I believe this is fixable with speech therapy. Same goes for the wheel chair. I push to a stand, so walking is very likely. Physical therapy is not currently provided.

Not only do I type this out, but I do it with one finger. I had to know Occupational Therapy (OT), adapting my environment, and accessibility available to me. I could provide limited OT and speech in my condition. I couldn't do Physical Therapy, so that is way behind. Cognitive skills are amazing. It's very rare, but it can happen that they become very advanced.
 

Labeling me the way I have been hasn't worked. As it is now, I do not qualify for any therapy services.

How did I end up here? http://thoughtfulveg.blogspot.com/2014/12/vegetable-on-loose.html It can be seen as a comedy, but for myself and the people involved, it was not. What happened did happen. It's funny now to look back and still be vegetative. A vegetable did so much!

Now a vegetable has to live. I brush myself off after falling off the ride. I'm all better now (for the most part). Let me back on.

 



_____________________________________________________

7/6/2018

I don't eat. That doesn't mean I can go without nutrition. I have a feeding tube.

I once was in a coma. People in comas have to be fed. If the coma persists, a hole is cut in the abdomen for direct access to the stomach. Shorter term comas will have a tube in the nose. Mine is the hole cut in the stomach.

Nutrition is given through the g-tube. I haven't eaten a meal in years. My incident was in Dec 2002. I opened my eyes in 2003, but I was made vegetative which just changes the coma to open-eye.

I now do this, which leads one to believe that I am not vegetative anymore. Now I'm one up on science. We'll have to wait and see. Right now I talk to you from a coma.

 

Is Savant Syndrome Proper?

'

Savant syndrome can be caused by a brain injury. This is the acquired form.

My brain injury was a stroke. "Stroke" is specifically named in the video.

I got to wondering...just how much of this "savant syndrome" did I already have?

I played the above (Hungarian Rhapsody by Franz Liszt) at my first piano recital. I was 5 years old. I was already hearing the word "prodigy." So congenital or acquired savant syndrome becomes a question. I was in gifted classes growing up. I left high school when I was 16 years old. I had a Bachelor's degree when I was 19.

It was off to work then. Forget school. Real life beckoned. I got my M.A. while working two part-time jobs. I moved and had my first child. It had been full-time work and my children until now.

That stopped when I was hospitalized. I actually decided to use these other skills you see when I got out of the hospital. Namely it was just the memory and ability to learn at that time.

The writing thing that you see now has evolved to this. My writing is due to my ability to learn. So I wonder how much is acquired? It's not even there yet of diagnosing savant syndrome. Medical records still have me as unconscious...and that's a battle! I don't even know if savant syndrome is the proper disorder.

(Just because savant syndrome never occurred so low before, doesn't mean it can't now. Medicine has advanced.)

No Neuro Is No Concern

 

I'm surprised this issue doesn't concern people:  I do not have a neurologist, nor do I receive any neurological care.

I had brain surgery in 2004 to remove my AVM (arteriovenous malformation). This was the cause of my brain injury. My current medical plan was to leave it, treat it with medication, and wait for it to explode and kill me. This plan was not optimal. Stanford University offered something unusual but risky. They would try to shrink and remove the AVM. The procedure was not covered. It fell under research and was taken care of by the university.

I had been diagnosed as being in a Persistent (I think it changed to 'Permanent' at this time) Vegetative State, so I only received necessary daily care and general medical.

The surgery was successful. Instructions to follow-up with a neurologist never happened. The routine follow-up does not happen. I should get annual neurological appointments. I don't.

I was diagnosed as being vegetative way back before the surgery. The state was deemed 'Permanent.' Although my danger of dying was removed, and what I have gone through more closely resembled MCS (Minimally Conscious State), I am permanently vegetative.

The government has gone as far as to e-mail me and explain to me that I am in a coma. http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html
 

I don't get anything but general medicine. I get regular GI appointments because I have a feeding tube. I saw a neurologist once when I got out of the hospital only because I pushed for it. It was not routine.

Vegetative persons don't get much other than nursing home care and basic medical. I don't even get all that now, as I am not in care. I get basic medical.

(Why would a vegetative person not be in care such as family or care home? The diagnosis I have is not right.)