Unfinished Nomination

In my e-mail...
  
WEGO Profile 

I received an "Almost" nomination. Maybe the process was too involved. So I did a nominate myself.

Choose an award. They have tons. You can nominate more than once so you can do all the ones you like. I did Best in Show, Blog, which is the second award in the second row,  but the order changes with log-in. Under name, fill in Angela Ronson, and then username I used my e-mail, angelar70@att.net

The category is Brain Health in interests.  My blog url is

https://thoughtfulveg.blogspot.com/

I put as a reason is that the blog is very clear. You can get creative in this section.

CLICK CONTINUE. Sign-in and submit.

Other patient leaders may use this. Just copy and paste the url. Be sure to add your name and e-mail.

https://awards.wegohealth.com/nominees/12362#_=_

Take Me Already

I will see things like this and I know what it feels like. I'm still alive. That's where there is trouble now. Oh well, deal with it. I don't feel like this anymore.

I had a brain bleed, an AVM stroke almost 16 years ago. It should have taken me out. There was just one stroke, but it did something unusual. The AVM didn't burst.
 

An AVM is a rare deformity of the blood vessels. In my case, an artery went directly into a vein, and my vein swelled up like a big balloon.
 

Today's medical procedures saved me.

I will let you fill in for yourself what religious reason this happened. There are too many now. I'm just looking at the science as to why it happened.

I'm sometimes treated like I have a superpower.
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 My bleed happened in December 2002, and what caused it wasn't removed until Summer 2004. That meant I could die every day for a year and a half. The place where I resided, incidentally also a hospital, did not recognize the successful removal of what would kill me performed at another hospital. They continued to treat me as if I would die at any minute.

A nurse there asked the doctor about me and he replied that I wouldn't live to 40. I saw 40 come and go.

I had been living in the present moment. There is no depression there. I had very little contact with people I knew. I was in a hospital a few hours away. I wasn't close by. That was okay for me. I knew depression lives in the past. I didn't need to live there, too. My mother came to visit often, and that is all I needed. My children were in school and in Southern California. I was in Northern California. I saw them on school breaks. The distance was too great. In them I saw the present moment. Growth has a way of doing that.

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There is no looking ahead to the future. There was no guarantee that I'd wake up. I didn't plan. There was no saving. The government plan doesn't let you save anyway. I just kept it simple.

Stop Calling It A Coma!

She wasn't in a coma for 20 years. She was MCS, Minimally Conscious State. Since when is MCS a coma?

Here is the longer video,

In this title, the woman was asleep for 20 years.

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Look at the condition of her body. That is due to not receiving intervention for 20 years. There are things that can be done to prevent that leg from hiking up, or her head being bent to the side which seems to lead the whole body into being lopsided.

When you look into my background, you find out I worked in Early Intervention. I had settled in the "Early" part because I wanted to work with babies, but I had to learn development of the whole lifespan.

There are things that could have been done with this person's body before it had deformed. Proper positioning and simple range of motion could have kept everything symmetrical and moving.

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 I say not to refer to this as coma. I am in this "coma." Since I am writing and my IQ is so high, I am making this look ridiculous. I'm not in a coma. I meet the same conditions as her, though.

Just so you know, this featured woman passed away, but the treatment she received is typical for MCS.

What I think is going on: The wire doesn't exist for rewiring. This lengthy process, sometimes 20 years, is the body growing a new wire. It's making a new neuropathway.   -NEUROGENESIS

Go to me, as I am documenting this as best I can without the biological information. You see I have slow progress in photos and writing samples. That is growth!

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MCS is where it can mostly be seen. This is the "Minimally Conscious State" and consciousness is slowly emerging. Consciousness is strong enough to be seen by others, but the individual is not yet 100%.

It happens with PVS, but this probably is the pseudo-coma. The person appears to be in a coma, but really there are thoughts racing in the mind. The body shows no outward reaction.

You get to my diagnosis and everything gets messed up. My diagnosis is "semi-vegetative." I was trained to say that in the hospital. That term does not exist as a diagnosis when I look it up. I originally was PVS. I was probably really in that pseudo-coma. Instead of being made MCS, the V for Vegetative was kept and "Semi" was added. My consciousness was emerging.

It was thought I'd die and I was released home. That's the shocker. I didn't die at home. The surgery I had at Stanford took away my pending factor of death. I and my local doctors possessed the necessary skill and knowledge to keep me alive. Hospital super-bugs were more likely to kill me. 

I looked just like the woman in the video when I left that hospital. Like she soon did, I also was expected to die. Instead my consciousness continued emerging.

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It gets difficult for me to predict what will be next now. All along I have stated there must be a secondary undiagnosed condition that allows me to write.

I now see this condition taking over.

This has been a chameleon...

it changes when you thought it was done.

Giving the Brain a Kick

YES, SOMEONE IS IN THERE.

They can't nod because there are no motor skills.

http://thoughtfulveg.blogspot.com/2016/10/disabled-or-idiot.html 

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This is computer stimulation of the motor cortex. A hand that was once paralyzed now moves. In this case, a computer chip is actually implanted in the motor cortex of the brain. The chip can then process the signal and give movement.

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 My brain doesn't need a microchip insert. It processes. It's just slow. It's very slow.

I can put both my arms up 15 years later.

15 years seems like a long time to move. Yes, it's being done, but it needs to speed up, way up. At this rate, I will die before accomplishing all movement goals. My brain needs a kick in the pants.

I see tDCS (Transcranial Direct Current Stimulation) as speeding things up. http://thoughtfulveg.blogspot.com/2018/02/stimulating-my-brain.html

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" I'll teach myself to swallow. It will just take me longer."

I made that statement after posting a video I made. The US government deems me vegetative, not conscious, because I don't swallow. At first, I believed my diagnosis was due to my inability to talk. I had been in a deep, eyes closed coma for 5 weeks following a stroke in 2002. I was made vegetative, an extension of the coma, when I first opened my eyes. I did not respond. The not responding could be seen as pseudo-coma.

I taught myself to type. It only took me 7 years to get movement and control over a finger to get printed. Stroke Connection p.9 You can see from the photo that it only took me 15 years to be able to use both arms. I'll teach myself how to swallow. It may be years, though.

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What does it mean if I am diagnosed "semi-vegetative"?

1. I am misdiagnosed.

2. I have to be conscious to be writing. "Vegetative" is not conscious.

3. Other "vegetative" patients may be conscious.

4. I am unconscious due to disability. Disability discrimination is not allowed.

5. Recovery can take years.

This whole mess could have been avoided if I had originally been diagnosed with  Locked-In Syndrome (LIS). Some of these patients regain speech, and they were always conscious. LIS with no eye movement and Persistent Vegetative State (PVS) may look the same.

Can an incompetent person sue?

Can an incompetent person sue?

No.

An incompetent person lacks legal capacity.

Since I am vegetative, I am not conscious. I lack legal capacity.

https://legal-dictionary.thefreedictionary.com/The+Capacity+to+Sue+or+Be+Sued

When I was initially admitted to the hospital, a representative payee was appointed. I believe it was a law firm. They could have represented me. There's a problem now, though. They were nixed after I opened my eyes so I could pay bills. It was faster and more efficient if I paid. 

Click to enlarge

I was found competent to pay bills, but I was left not conscious. My diagnosis should have also been changed at that time, but it wasn't. A vegetable could pay bills? I'm sorry, but the government looks idiotic.

"Semi" was added to vegetative a few years later. I wasn't talking at first and that warranted vegetative. As time passed, I started vocalizing. "Semi" was added. Yay, I was only a vegetable part of the time! I may only be vegetative when I sleep now. That hasn't been monitored.

If people want me to have legal capacity, then I will have to be made conscious. The word "vegetative" will have to be removed.

This was my Music Therapist.

I Was In Star Wars

I didn't receive a thing from the government. They say I'm in a coma. Vegetative is an open eye coma. People in comas don't get anything. This includes any rehab. You don't have to wake them. You don't have to do anything. By the light in their eyes, I am in a coma on their records. I've gotten nothing.
 

I got some rehab before I switched from private insurance to the government. I had insurance with my job. Now I have Medicare and get absolutely nothing.
 

I do not have a neurologist. My last "neuro" would have been in 2004 at Stanford when I had brain surgery. The government never accepted that surgery happened. Talk about an elephant in the room that nobody sees.... Where was I for a few days? My AVM disappeared by magic.

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I am allowed to have a primary care doctor which is close to my home. I have a GI Specialist for my G-Tube. I use my Medicare retirement for this. I do not receive assistance for this. The assistance I do get is in a form of a caregiver. She is paid through a state program which also receives federal Medicaid funding.

 
Before people get mad, you have to know about my diagnosis. Then you can get really mad, or stare and blink at your computer screen. It's hard to know what to do. I say make me conscious, THEN figure it out.

I had a bleeding stroke, a hemorrhage, not a clot, which is always warned about. The bleeding was stopped, and I was left with a big "blood balloon" in my head. If it burst, I'd really be dead. I was also left in a coma. (My diagnosis is semi-vegetative. Vegetative is an open eye coma. Vegetative is very close to death.) I opened my eyes five weeks later after the bleeding stopped. I did not talk, and the type of coma was made vegetative. 

Vegetative is a coma. People don't realize  this because the eyes are open. "Semi" was later added to my diagnosis when I started talking. (No one has ever made the jump before from the PVS, Persistent Vegetative State, to being conscious. To remove the word VEGETATIVE would mean I have done this. For those of you now staring at your screen, you can call your TV station if you want.) Now that I write I can't think of another word to add.

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Doctors hadn't seen this situation before. The giant blood balloon, an AVM, usually bursts and kills the person. Once in a while, they are found while doing something else. If a person does survive a brain bleed, they are usually left with problems. This one "leaked" which gave it away. It then should have burst a while later, which is why the government is surprised I am still alive.
 

Now if that surgery I had back in 2004 had been accepted, I'd have none of the problems I have now. Stanford removed that AVM. It wasn't one simple surgery. I had to go in a few times before a craniotomy was done, just to shrink that giant blood blister. The balloon had to be deflated before it could be taken out.

 Going to Stanford was stepping into the future.

I was in Star Wars!

This video I included was 5 years after my procedure. This is a more refined process of what I had done to me, but it is still futuristic. I still have a hand crank at the foot of my bed to make it go up and down. (I have a different control to make my head go up. I use this other one all the time.) The whole bed going up and down could save a caregiver's back. The government takes care of its employees! I say this dripping with sarcasm. I personally know of one use where in the hospital the bed was inverted with me in it for postural drainage. Postural drainage is probably done with pillows at home. Again, that poor caregiver.

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My embolisms, the procedures done to shrink that giant blood blister, the AVM, were all done as out-patient procedures. Did they count as "key-hole surgeries"? An incision was made in my leg, and a camera was snaked up my blood vessels to my brain.

 

Snaking a camera up an incision in my leg.... 

I saw this long ago!

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After the AVM was removed, I spent more time in a government program that refused to accept that Stanford actually did anything. I don't understand this, as they, the government program, were the ones who removed stitches from Stanford's procedure. Slowly get better is something that has been going on since 2004. 

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That "leak" was a major brain bleed. There shouldn't have been much recovery from it...unless the brain is plastic. Then terms like neurogenesis and neuroplasticity have to be used. 
 
I no longer require a ventilator. That's rewiring, or neuroplasticity. The return of speech is probably a combination of both. This writing as a theme of my life, though, I've never done that before. Writing would be neurogenesis.

What happens is that there is an injury to one part of the brain—most often the left hemisphere. And there is what I called a recruitment of still-intact brain tissue elsewhere. The brain seeks to correct the imbalance and will find an undamaged area, most often in the right hemisphere. There is then rewiring to that new area, and then there is the release of dormant potential, which can be at sometimes an astronomical level. So it's the three R's: recruitment of still-intact tissue, rewiring, and the release of whatever capacity is there. https://www.vice.com/en_us/article/bn5qew/whats-new-in-the-field-of-savant-syndrome-research-611

Rewiring is neuroplasticity. This most likely happened. My lobes were dead, all of them. I only had brainstem. Breathing is a brainstem function, and rewiring could occur there.

Speaking is more complicated. I believe areas of my brain in those dead lobes were still alive. It's easy to miss that sort of thing by visually looking. A scan was never taken. The AVM was visually seen. (I initially had emergency brain surgery to stop the hemorrhaging, the "leaking." Before surgery, doctors didn't know why I was bleeding. They saw the AVM when my skull was opened.)

Writing as an avocation is new. I did not write as a main pursuit before. I knew how. All of that was taught in grammar school. Neurogenesis accounts for this new skill.

A scan wasn't performed until Stanford did surgery. They would have been more appropriate to determine a diagnosis.

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More Star Wars and less hand cranks are needed for progress. The environment of caveman living produces caveman thinking. If people are saying and doing stupid caveman things, well, they are just products of their environment. Provide a rich, Star Wars environment, and you will get smart, cutting-edge thinking. It challenges the mind.

A little bit of Star Wars is needed at home.
If people live in it, they will work on  it.
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Now in honor of that Magic School Bus episode I give this song. It's been in my head since I found that episode.

UPDATED 6/1/2018

I Am Not a Team

I'm not a team. I do it all myself. I know there is a lot of varied information. Some would think that various people would be contributing to this blog. No, that is not the case. It's all me.

Know How is my smaller blog, https://braininjuryknow.blogspot.com/. I started this one before the other. This was for the people and their families who dealt with brain injury.

Click to enlarge

The Thoughtful Vegetable, https://thoughtfulveg.blogspot.com/, I started later. It has my thoughts and theories. If a person thinks a team does Know How, then an entire conglomerate must be doing this bigger one. I'm glad I made the separation when I did. There are just too many now to go back and pull out a few. I would be overwhelmed.

All this information is the secondary disorder that was never diagnosed with the brain injury. Since this is all written, the first diagnosis would be wrong, as that is unconscious. Locked-In Syndrome should have been made at that time. It is conscious, but unable to move.

The fee in that letter charges for the gold membership. A while ago, PINRSS picked up my other blog and doesn't charge,  The Thoughtful Vegetable on PINRSS. Sorry, but I'll hold out for no charge.

If you just want to follow, that is free. The people that need this information shouldn't have to pay for it.