Monday, January 13, 2020

Scott's Law



I never outright said the name Scott Routley, but I remember the case. I referred to it. I referred to a man in Canada.  



I was surprised to get a message regarding him.


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Routely was a man in Canada who was in a vegetative state. 




                                 
Mr Routley suffered a severe brain injury in a car accident 12 years ago.



None of his physical assessments since then have shown any sign of awareness, or ability to communicate.

But the British neuroscientist Prof Adrian Owen - who led the team at the Brain and Mind Institute, University of Western Ontario - said Mr Routley was clearly not vegetative.
"Scott has been able to show he has a conscious, thinking mind. We have scanned him several times and his pattern of brain activity shows he is clearly choosing to answer our questions. We believe he knows who and where he is."
https://www.bbc.com/news/health-20268044

Scott Routley passed away in September 2013.

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I taught myself to speak in order to say "No." Removal of the feeding tube is a big issue, but it wasn't this surgery that was planned for me. It was something else, and it really doesn't matter what it was for. I  think I surprised people. I blurted out "No." 

I remember the doctor and the Physical Therapist, PT, trying to change my mind. The name of the surgery didn't sound bad and it would have helped in the short-term. I  was thinking long-term, though. I'm not supposed to be alive now. They wouldn't have known this. Ask a PT now. They'd say I said the right thing.

What matters is that I said no. Surgery to remove the feeding tube is the same. It's a person's wishes, not the type of surgery that matters. The ventilator can also be included.



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I never taught myself to swallow. I didn't know I was supposed to. It sounds like I should have been given speech therapy. Medicaid does not provide speech to those not conscious. The diagnosis "vegetative" says the person is not conscious. I'm not conscious. I don't get Speech.

For the same reason... I'm not conscious... my feeding tube can be removed. Of course, I'll say "No" and that can't happen.


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Recently, JohnAllman.UK contacted me. He authored Scott's Law:  Talk to me, don't just starve me to death!




There is a movement in his country to stop the practice of removing the feeding tube to hasten death. This movement just isn't in this country, but many others.



The big deal will be determining consciousness. This is what people need to watch with me. I am yet to be determined conscience. A feeding tube can't be removed from a conscious person. Mine can't if I say "No." That's not feasible for the non-vocal.

I should be conscious because I write this, right? Well, no. I'm not conscious because I don't swallow.


Accept the writing, gestures and brain scans. That's a start. Nothing happens until this occurs. It's the person's wishes that matter.


Saturday, January 4, 2020

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.





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.
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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.



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.)



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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.