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.

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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.

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.

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.)

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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?'

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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. 

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.

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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.