Friday, September 1, 2017

Should We Treat Vegetative and Minimally Conscious Patients as Persons?


“Should We Treat Vegetative and Minimally Conscious Patients as Persons?”


Just because a person is disabled, doesn't mean he or she doesn't understand you. I understood quite well. It is issues like this that hinder me. It begins with the public view.

41% are misdiagnosed. ( https://www.nytimes.com/2017/08/24/opinion/minimally-conscious-brain-civil-rights.html?smid=tw-share) This may be me. If you are a caregiver to a vegetative patient, that person may not actually be vegetative. They might understand everything you say. If I'm not one of the 41%, then I'm recovered. I should never have been treated differently. Do you kick a man (or woman) when he or she is down?

All people are treated equally, no matter color or disability.,


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Some doctors, researchers, rehab people, etc thought it was possible to rehab a person from the Persistent Vegetative State to "Consciousness." Well, I am conscious, despite what records say. It is possible that I progressed from PVS (Persistent Vegetative State), to Locked-In Syndrome (LIS), to whatever I am now. I currently speak some, but rely on typing out my thoughts. Speaking some entails about five sentences, but my voice becomes high pitched and hard to understand. Typing is me using my left index finger. The computer comes with accessibility tools that allow me to make capitals and such.

My current diagnosis is Semi-Vegetative. The diagnosis change happened in 2004 after I started vocalizing. Prior, I was PVS due to a stroke. I had never heard the term "semi-vegetative" before and I thought maybe it was good. It sounded good. My background is psychology. It appears that the "vegetative" was kept and consciousness is emerging.

My issue :  I AM UNCONSCIOUS.

I have been conscious since before I could talk. The diagnosis should be Semi-Communicative. Do I have to validate your existence to be conscious? I like the one I get now from the Centers for Medicare and Medicaid Services. They say I have to pass a Swallow Study Examination. I have a feeding tube. In other words, I have to swallow in order to be conscious.

Being unconscious means I have no rights. This means I am not a person.





Oops, a huge civil rights mistake is made. The potential is there and in my case it happened. If the mistake happens, but the person dies, it becomes a moot point. In my case I didn't die. At the time of my diagnosis change, I should have been made "quadriplegia with dysarthric speech and limited ataxic movement." I believe "quadriplegia" is a hugely accepted category. Dysarthric speech and ataxia have billable ICD codes. This then opens up my case to research. As it stands now, there is no research and I am a miracle.

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I will take some lines from this video. There is a lot of information here.
 
Brain injury was placed with mental health. The injury and some of the problems are very physical. Other things like personality change are not physical in nature, as seen. Lumping all brain injury together has been difficult.

Brain Injury is taken seriously. Some states have developed their own legislation, http://www.ncsl.org/research/health/traumatic-brain-injury-legislation.aspx

"We are included in the definition of the people with disabilities." 2:41
"Because a brain injury may result in a disability, many of the federal policies concerning Americans with disabilities apply. But there are also a number of policies specific to people with brain injury." https://www.brainline.org/topic/policy
Disabilities can be seen and unseen. Even if my seen disabilities disappear, the unseen ones remain. Some people only have unseen. It is very difficult for them.

"We have to do this to you for your own good."  4:39
"The fact that we may need support isn't a reason to take away our right to have a final say in our own lives." 5:03

"No deprivation of liberty, based on disability" 7:49
This is why I could go on outings with my mother. I'd only leave the hospital for a few hours. My mother had to be CPR certified and received additional specific medical training.

"Forced Interventions" 13:07
You have the right to be who you are. This issue is talked about throughout the video. Some may not understand this wanting to remain disabled.
"Doctors have suggested that I try taking anti-seizure medication, and my choice is absolutely not." 5:15
 

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Disability Rights is part of the Civil Rights movement, but has been lagging.




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