How I Got Out... and Survived

I just did it, but there was planning first. I left the hospital and all medical facilities. It is called Independent Living. The movement has really taken off during my generation. The generation before me laid the foundation. This is considered Disability Rights, of the Civil Rights Movement. 

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Make sure there is a roof over-head. A patient doesn't just leave a facility, usually. I'm not getting into Against Medical Advice as I didn't go that way. Most of the time, I was transferred. There was always another facility.

When I went "home", I kept with this. The house already had to exist. I didn't directly come to this house. I had a rental across town for about 6 months through a friend of my mother. This rental was planned for at least 2 months in advance.

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Next was the equipment. A medically involved person gets by, maybe even exists, with equipment. Get to know your hospital social worker. This person will be ordering what will be needed for daily living.

In my case I needed:  a hospital bed, a commode chair, and a bath bench.

Over time the bath bench had changed to a shower chair. An in-bed hair wash sink has been added. Also, a bedpan was purchased. Through a fund-raiser, a standing lift has also been obtained.

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My food is a commercially prepared formula. At that time when I came home, my formula was Boost. I remembered that the rehab hospital used this preparation. The hospital I was leaving used an unflavored formula that I didn't like. I have Ensure now. This can be bought at the store in an emergency.

When I moved, I set up with a medical food supplier in my state that I already knew of. The hospital had provided me with a couple of large containers of the unflavored formula. My mother went to the store and purchased Boost. Store bought and the medical preparation are the same.

I currently use Ensure formula. 

This is the same as bottles sold in the store.

I said I already knew which medical supply service to use. Years before my stroke I was a service coordinator for disabled children. This included the medically fragile child that the parent wanted at home. I would need the same kind of services.

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Early on I learned that I had to be able to verbally describe my care to a complete stranger. I went to a carehome in Northridge, California. The Northridge Earthquake was devastating and famous. I was with the survivors. I would take this bit of knowledge they gave me further and give instruction on entire nursing procedures.  https://braininjuryknow.blogspot.com/2016/03/streetsmart-in-wheelchair.html

This city was made famous by an earthquake.

'Who will take care of you?' is a big question, but I minimalized it. Almost anyone could do it. I believe the youngest was 12-my older daughter years ago. 

I am in California. I know a lot of the programs in this state. I knew of a program that provided caregivers. I use In-Home Support Services through tthe California Department of Social Services.

https://www.cdss.ca.gov/in-home-supportive-services

They could do basic care. I'd direct the rest.

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This is how I do it. The knowledge is all in my head. I just relate to a person how to perform a procedure.

Take Heed

2/29/2020

I have no use for Black Magic, spells, or any other voodoo. It's not that I don't believe. It may work or it may be a hoax. Either way, I don't care. I just want the natural order of things to work.

Don't forget Karma. Don't mess with it!

Take the comments below with a grain of salt. Why are they targeting an obscure blog?

UPDATED  1/29/2020

"The govt spent more money on 4yrs of hospital care than if it had been 4yrs in a nursing home in the community."

This is true. For years there has been a push nationwide for de-hospitalization of the disabled to community care. The numbers are there. Look them up.

"Keeping me in the hospital meant keeping me out of the community so u wouldn't hear about me."

Whether or not if intent was there, this happened. Information was kept from the public. If a hospital was the least restrictive environment, then the public should have been informed. I should have been informed. Decisions were kept in secret.

No person can say the US keeps info from you. They did, and are still trying to. I am still vegetative. I write and publish this of my own volition... in a blog which has separate legislation. I am obviously out of care or this wouldn't happen.

"Volition" is a funny word. Who would use it? I guess I would. I guess I have free will. (All free will naysayers take heed.) It's going to be difficult to continue saying I'm not conscious.

Click

1/29/2020

I wrote this in 2018. I left the Black Magic comment because I thought it was funny. I also didn't know that Black Magic was Muslim.

The second comment comes now in 2020. Spells are sold in Uganda, the UK, and Alabama. WTF!? That's just funny right there and doesn't need elaboration.

If either of these comments are deleted by the writers, then those people were embarrassed.

Karma will take care of this issue. I don't need magic. I'm already out of the situation. Let law work.

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.

Put in disability for color of skin.
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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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 https://www.youtube.com/watch?v=WzEQm2jXils&feature=youtu.be

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

http://thoughtfulveg.blogspot.com/2013/04/when-dead-sing.html

"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.