Sunday, January 28, 2018

Trapped In This Body


 I would be recovering from Locked-In Syndrome if that diagnosis had been given. I was thought to be severely cognitively impaired. I was given a computer and taught how to type. People were shocked!  

Take away this guy's computer n what is he? Vegetative.
See how the govt made my decision?

-Angela   4/17/2018
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I wonder what kind of legal problems he's had? He left the country where he was. (He was in South Africa, but moved to the UK.) I haven't left...yet.
 
He is recovering from Locked-In Syndrome. He was thought to be severely cognitively impaired. He was given a computer and taught how to type. People were shocked! Maybe if he had received better treatment, he wouldn't have all those terrible things to say.

I'm still proving to everyone that I am conscious now. Oh the legalities! First of all, is this really me typing this out? Yes, it is. Second, I don't need the lawyer. I want to be conscious. Is it so hard to cross out the word "vegetative" on my file and write conscious? If you need something, write quadriplegia with limited movement.

My functioning is pretty much the same as this man, but I vocalize now. My speech is not the greatest, but I am understood. I remember when I moved out of the hospital and I would lose my voice every other day. I had to take a breath after every word. My vocal cords were weak. Not anymore, thank goodness. Now I can hold a conversation without stopping after every word.

I still have to type longer things like this, but I can make conversation. Only once in a while my daughter has to correct me.

People are taking too long to make me "conscious." Umm... Stanford wanted to do it long ago... back when I had that surgery. It was said back then that it wasn't possible. The surgery I had was ignored. Now it's years later. You better find out what happened.

["Their quantification of white matter reorganization shows long-distance rewiring in posterior medial cortices, possibly reflecting axonal sprouting or neurite outgrowth." I think that I had the same sprouting back in 2004 when I had that surgery. It's years later and those sprouts are all grown up. You can then get into "Oh dear! How was she before?" You will be pleasantly surprised.]
 http://thoughtfulveg.blogspot.com/2017/10/im-not-in-coma.html

Sunday, January 14, 2018

Helping Brain Science


Comment:  "I wish we knew more about the brain back then." (Back when I had my brain injury less was known than now.)

We still don't know.

The government cut off my feeding tube supplies in Dec 2016 and I didn't get it all back on until Feb 2017. People in the government may have seen YouTube videos and the logic goes, 'you can talk, therefore you can swallow.' I don't swallow (enough for a test). I was tested and didn't pass. I never had speech therapy. A therapist works on swallowing as you go along. They don't usually get this problem. So I taught myself how to speak enough without swallowing.

I didn't realize I was supposed to be swallowing until a year ago. Long ago I did infant intervention as a home teacher. A few kids had problems with their swallows and I remember the OT recommending lollipops. (Only speech does swallowing now for those who remember.) My thought was, 'I'll teach myself to swallow.' If those babies could do it then so could I. So you see me with a lollipop a lot.

There's more to this brain rehab than just swallowing. I'm still in a coma because I don't swallow. B.S.!! I wrote this thing while I was in a coma? https://thoughtfulveg.blogspot.com/2013/04/i-want-ass.html This needs to be looked into.

Going back to when I was first diagnosed as vegetative, I may not have been vegetative, but totally Locked-In with diminished cognitive capacity. This is why a brain-computer interface and communication software is being researched. The process is slow and has not reached the common household. Some of the beginnings of this research has in the form of 'mind controlled toys,' if you want to look for these, they are now available to the public.

The government's classifying me as in a coma prevents any study of me. "Vegetative" is a coma and one can not give consent. This is a major factor in that slow research. A lot of vegetative could probably answer "yes/no" if given the chance vegetative-state-patient-communication. It wouldn't be instant. The brain injured person has to learn the program.

I was lucky because I had movement in my head at the time. I was in Silicon Valley at the hospital I was at. I could hit a switch with my head that was hooked to a computer for "yes/no." Learning was not instant, and took a few speech therapy sessions. This technology was only available at this particular hospital. It has been 15 years now. I'm seeing the technology more wide-spread, but the typical household isn't there yet. The toys have hit faster.
 


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By the way, I found a back door to this not being able to study problem- Open Science. Basically, keep it all public.

I have obviously progressed far enough not only to answer yes/no questions, but I can give entire descriptions.

Does anyone else see a problem with the diagnosis of "vegetative"? How does a  person give yes/no responses if that person is not conscious?


Sunday, January 7, 2018

Don't compare me to a rose.




Don't compare me to a rose. Compare me to a dandelion that grows through the crack in a sidewalk.




I'll probably be compared to Terry Wallis, but I am a great deal smarter. http://usatoday30.usatoday.com/news/health/2006-07-03-brain-rewired_x.htm

Maybe I will be compared to Jon Sarkin, but with a worse brain injury (acquired savant syndrome). We both had strokes in the cerebellum of the brain. I don't paint, though. I write.



I like this video because he describes that he was bending over to get a golf tee. I was bending over to get garbage off the floor in my car. I had an accident earlier and the car would have to go in the shop.


I was very close to death. What this woman went through will have to be included.



*NOTE-
I did not have the vision, but was near death and had a miraculous recovery. http://thoughtfulveg.blogspot.com/2017/08/angela-ronson-part-3-how-our-brain-is.html

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"Far too often, [vegetative] patients ... are given up for gone, left to languish in nursing homes where no one bothers with physical therapy or even to check for glimmers of regained consciousness."It goes on, "That’s at odds with a growing body of research showing that many patients with no outward signs of awareness retain some degree of consciousness." http://www.wired.com/wiredscience/2013/02/searching-for-consciousness/

I don't feel like I am "languishing". At times I will get angry and frustrated that growth is slow. That means I am still progressing. I obviously am. The first seven years went by before anyone heard from me,  Stroke Connection magazine p. 9.

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A rose didn't struggle to grow where it wasn't supposed to. 

The quote by E.V. has many pictures and is attributed to E.V. Thompson.
https://en.wikipedia.org/wiki/E._V._Thompson