Saturday, December 28, 2019

Reaching Me


 I speak now. I have a lot of words. I still have trouble finding what to say, but it isn't noticeable in social situations if I smile n shake or nod my head. Writing is my better response. You can reach me.


I commented on a story. The article is long, long, long. It is more than my eyes and attention can handle. So I'm breaking it down and pulling out issues that pertain to me.

The article is at:  Alive inside: How do we reach ‘vegetative’ patients when tests show they’re aware of everything
All quotes in this essay come from this article.




I couldn't move or speak either. It has taken me years to get where I am. It could have been faster, but I have no help. I used to do this for babies, so I know how to do some, but my physical development is up to a toddler now. I'm winging it from here.




My cognition is off the chart. My sass will get the better of any tester.



It has been years. I have gotten some therapy here or there, but most is Range of Motion exercises that I performed. As for speaking, I'd sing along with music, I'd talk to my computer, and there are a few puzzled telemarketers out there.





I still have the feeding tube. It is hospital grade. It is not like the ones I have seen in the community. That could just be me, though. I worked in community care a while ago, and medicine has progressed. I am now able to purchase medical grade feeding tubes and have them shipped to my home.

I have taught family and caregivers on how to do the feeding. I have taught how to use a feeding bag and how to do it by hand. All instruction is verbal. I cannot demonstrate.
______________________________________


This was my problem. "The only patients that benefit are the people who make it into other research." My insurance ran out because I used all of it. That was a political issue that was taken care of, but could be reinstated.


Speaking is something I taught myself how to do. So is typing with one finger. A person can teach their self. That is what I did. Right now, as I write, this is cognitive and fine motor exercise. People are so quick to forget that I worked in rehab.
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I remember being like this. 20%  of vegetative patients are aware. That means that in a room full of 10 patients, 2 of them can hear you. In my case, one of them wrote about it.

By the end of my hospitalization (4 years) I was arguing with a nurse that I was conscious. She said "you're escalating." That was my cue to shut up. In mental health that meant sedation. I didn't know about the hospital.


Soon after, family signed me out. To this day I am vegetative. I doubt you can tell unless you look at the wheelchair or the hole in my neck.




You can see that I do it myself.
and leave videos for others on the internet.



Saturday, December 21, 2019

Rewiring Is a Thing Now



Rewiring is a thing now. Medicine, don't hide it!

"I keep saying my case is weird. My body is still in a coma n my head is awake." I put this on a social network when I became Medicaid Waiver. Medicaid Waiver is a program set aside for the very ill. It is designed to keep a person in the community and out of the hospital.

People don't think of me as being ill. I don't have a head cold. I have a g-tube, or it is also called a feeding tube. The device isn't so scary to the community anymore, but it is serious. It is pretty much an IV that delivers its contents to the stomach and not the bloodstream.

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" Angela Ronson your body is not in a coma. Neither is your brain," Trudy Martinez. She is an Occupational Therapist.

"I would say that, technically, at this time you are a traumatic brain injury (TBI) with residual quadriparesis,
" Trudy Martinez. 

I've been hearing for years that a person continues to make progress after a brain injury, but no one has outright said that my diagnosis was "residual." THAT fits. I was thinking about making up the word "de-paralyzing," because my body is becoming less paralyzed.

"Angela Ronson - I was told in rehab that recovery shouldn't be looked upon as a final destination, as recovery is ongoing and lifelong. It is a journey, and that medicine, as a whole, tends to look at everything as a finality (here anyway). The words 'cure' and 'heal' are never used in that facility because they do not mean the same thing in a brain injury standpoint; so I don't use them," Lisa Rice
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It comes down to 'why so long?' You will find that there were small progressive steps along the way. I believe the progression coincides with the growth of small nodules discovered years earlier.


I've said it before. I've quoted this.

"Their quantification of white matter reorganization shows long-distance rewiring in posterior medial cortices, possibly reflecting axonal sprouting or neurite outgrowth, maybe even related to neurogenesis " happens to be Steven Laureys describing a man who was MCS, but started talking nearly 20 years later. What he is saying is that tiny nerve fibers grew and rewired. This is most likely going on with me. http://thoughtfulveg.blogspot.com/2017/08/not-fast-enough.html

Growth does not happen overnight. ( https://thoughtfulveg.blogspot.com/2018/08/neurogenesis-is-proces

s.html )
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RESIDUAL QUADRIPARESIS- I like that word, "residual." It goes with rewiring and explains slow gradual growth.

The concept of rewiring, neuroplasticity, is so common now. I don't think it is accepted yet.



Sunday, December 15, 2019

Do You Have A Husband?



I'm getting asked if I am married A LOT! 

I have something better than a spouse, and it holds the power to put you in jail if you try to have a relationship with me. I have a diagnosis that says I am vegetative. I have been vegetative for 17 years.

You may not understand until you watch the following. The incident talked about happened earlier during the year that I wrote this.



The father was found and jailed. CNN 

(My situation is totally different, yet I am held to these standards.)



__________________________________________


I don't understand why a person would risk getting their butt thrown in jail over the looks of a person. I will cut the internet some slack. I get "desperate" with these folks, but what the Hell is going on in person?

I've been propositioned by a nurse. Hey, different state, different nurse than in the video. My response to the guy was that I laughed.

C'mon this guy was a nurse! He knew my dignosis. He knew the consequences. No, he didn't know me or how I was personally.

It's possible that he saw dollar signs. I was starting to talk and it was obvious that I was misdiagnosed. Can't people tell by now that I never sued? (Statute of  limitations is now up.) 

I see differently. No one doctor is at fault. Rather it's the system. A person does their job. The system  gave incorrect information. A person can't be held responsible for another's mistake. 

Besides, how could I sue when hospitalized and "in a coma?'




______________________




If the woman was married  before her coma it would be different. I say coma, because vegetative is  coma.

I talk. I can't possibly be in a coma. That's true, but I live in a system of wrong information. It will have you believing the wrong thing, like I am in a coma.

Obviously I'm not in a coma. This needs to be documented before there is a spouse. 





Monday, December 9, 2019

Part 2: Now What



I can see why that parent video showing how she changed her child's feeding tube was taken off. All parent videos are being replaced with medical videos made by medical professionals.









I was looking at a paper I wrote and noticed a video had been deleted. The essay is Overcoming the Stigma of a Feeding-Tube. This is Part 1. I present the issue.

 I thought that I will just replace that deleted video with another parent teaching parents video. I looked and they were all gone. Instead I found a medical professional teaching parents video.



This is how it should be. This also means the issue is recognized. I already mentioned in that article I wrote that wait times were horrible and there is a serious staffing shortage for on-going feeding tube care. Just because the issue is recognized doesn't mean that it is solved. It's just an official fact now.

_____________________________________________



I taste. I have a feeding tube, so people assume that I don't taste. To top it off, I have acid reflux. So, I'd get a feeding tube feeding, and then a bit later, the feeding formula would come back up. To make it worse, I taste the barf.

I get lollipops now. Things are much better.

For the person who can't have anything in their mouth, try flavored lip glosses and chapsticks.


Flavored lip balm is usually sold
for kids and has name brands all over them.




I wouldn't be surprised if tasting comes right before swallowing.



Saturday, November 30, 2019

Magic 15







It has now been 15 years since I had procedure and brain surgery at Stanford to basically save my life. Maybe it was thought that I was going to get a few years, but not 15. So they have something!

15 is a good solid number. When something has happened for 15 years, there is a good chance it won't end soon. It can, but why did it happen for 15 years already?

15 is also a magic number in numerology. Numerology is old. It goes back 4000 years (from my browser).



"Angela" is a form of "Angel."
This number is even more magic.

______________________


"Among scientists' most fascinating subjects of study are a small group of enigmatic talents, the so-called savants- The knowing ones."  (2:16  this second video). 



I'm not diagnosed as this. No, I am diagnosed as being in a coma. The answers to why I am now doing this are probably in this disorder. I was made vegetative when I opened my eyes. I became semi-vegetative when I started talking. Vegetative is just a coma with the eyes open. That doesn't describe this!


I first had a stroke. Then I could barely move.  I couldn't talk back then. I do some speaking now, but a majority of thought is written. (Not able to speak but able to think can be called Locked-In Syndrome.)


In that savant video, Dr Treffert attributes genetic memory as responsible. I disagree and go with Carl Jung's theory of Collective Unconscious. Today, people say Collective Conscious because the New Age made them aware of these things I guess.

The Collective Unconscious is one of Jung's spookier theories. He suggested there was a large shared memory we all access. I go with this one because I'm not related to similar people. This makes me spooky.


______________________



I did lots of thinking like in that The Diving Bell and the Butterfly movie. That happens when you can't talk. I have much in common with Jean-Dominique Bauby's disability, but I went on to get better. He passed away right after his book was published, the above movie is the same name. That massive amount of thinking has remained with me even though I now talk.

Bauby was 18 years older than me. He
had his stroke the same year that I gave birth to my second daughter. There is no genetic link and I did not know of the man until the movie. A large pot of shared knowledge makes more sense. Medical staff and technology developed from other than genetic memory.

Ooo, spooky! Ooo, that's life! It's only spooky because you don't know. 

Everything else looks good. I use Dr Treffert's work as a guide for what I am experiencing. No other theory has been developed.


______________________


Somehow I "know." That's spooky. Somehow I know my 15th year will be magic.





Wednesday, November 20, 2019

This Isn't Fair, so I'll Even It Up.



The people on Twitter got to see only the first part of my Facebook post. Here is the whole thing. I told you that my cognition is up there. You can see.
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I know this is public. It's me thinking n not advice.
It's possible that I gave myself something like a spinal tap during the bleed. After going everywhere, the blood ran down my neck. Think about it...What bone is in the neck? The spinal column. Spinal stem cells could have been released.
Then there's the whole business of clearing the cerebellum of an AVM n scar tissue. That can be a re-start. 
Each treatment had radiation. How much radiation was there collectively among all treatments? 
Yes, this Hawking quote made my eyes get rly big... n it's only been 15 yrs. Since there was radiation, we now get into things like half life, which is long n beyond me. Is that why I look young?



Stephen Hawking Quote


___________________________ 





I'm vegetative.  My diagnosis is Semi-Vegetative if that paperwork is found. If not, I have the original hospital stating that I am "decerebrate," braindead. These are then the thoughts of a brain dead person.