Sunday, May 28, 2017

People Change



I think scientists around the world have been worried about people being conscious in a body that is not. A few years ago there was this, http://www.bbc.com/news/health-20268044
A man in Canada could appropriately give yes/no responses by thought when in an fMRI.

This article, and others I have seen, do not suggest this is a form of severe Locked-In Syndrome. I see it as such. "Locked-in syndrome is a rare neurological disorder in which there is complete paralysis of all voluntary muscles" https://rarediseases.org/rare-diseases/locked-in-syndrome/ This goes on to read "except for the eyes" and that communication is performed in this manner. I take it one step further. The eye muscles are involved and only brain responses can be given.

This brings back worries of walled-in alive disease, "maladie de l’emmure vivant” in French.

A way to communicate with those "Locked-In" is looked for. A computer/brain interface is being worked on. It is not all-the-way there yet, but I say it is very close. How do I know it is close? I've told people to watch the toys. There are now mind-controlled toys offered to the public.

Mindflex Duel Game https://www.amazon.com/Mattel-T8498-Mindflex-Duel-Game/dp/B004GHNFKK


The technology is first put to use in toys. Bugs can be worked out here. As people become used to the technology, it can be applied to more serious issues.
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What probably happened in my case was I was like this man above who's in Canada. I had thoughts in my head that I couldn't get out of my broken body. I also must have had a secondary condition like savant syndrome, where there is great plasticity and memory. (That disorder happens to be one I know about. Others will have to determine if I have something like this.) It is because of the plasticity that I have that I shortly begin to blink my eyes in response to questions. I did not initially blink for doctors. I did later for family. (I always used family report as a professional because of this. I also worked with babies. They were non-verbal. If a skill is emerging, the family or primary caregivers usually see it first. The skill may not be emerging to them, but a given fact. It is emerging, though, because the skill hasn't been generalized to other people, yet.)

People at Santa Clara Valley Medical (where I was) got suspicious. If family had made up the 'eye blinking thing,' then they were acting on it? Many times the family did not know why they were asked to do a certain thing or say/read specific wording to certain people. That all came from me; that's why. The family wouldn't know. I would. It was soon understood by medical staff that I was using family to communicate.
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I lost my private insurance and became full government. At that time, there was a cap on my insurance of how much payment of services a person could receive. I reached that amount. A helicopter ride, brain surgery, and months of hospitalization aren't cheap.

I probably had a secondary condition (I'm going to say it because it won't make sense if I don't, savant syndrome.) I say savant syndrome because of a high amount of plasticity and a high memory. I came out of the coma due to high plasticity. Plasticity is what was working while I was in coma. It would have to be completely biological. No thought processes were involved.
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Years pass. I can do most rehab because I remember previous training and education. Savant syndrome has huge memory. I remember techniques n exercises. I have degrees in Psychology and Special Education. I specifically studied Early Intervention. I ran an Early Intervention program for  children ages 0 - 5, who were neurologically impaired or high risk of neurological impairment. My own neurological event happened a few months after I had left that program. It is odd, but I know everything to be done for what happened to me.

Now I am here. My body is mostly disabled, but my mind.... I can't even describe that.


 People do change...some at
different rates.

Tuesday, May 16, 2017

My Philosophy On Observations


I didn't become a musical virtuoso over-night. I didn't become a mathematician. No, instead you are getting some weird kind of philosophy/observation that I witness and then write about.

I can barely move. I'm not going to play an instrument. I might again some day. I used to. That's all part of my past. I leave that there.

I'll do math relevant to my situation. If a caregiver needs help with a time sheet, I'll help. If an essay deals with the statistic 1 in 1400 and the emergence of great skill, I am going to discuss it. http://thoughtfulveg.blogspot.com/2014/04/extraordinary.html

Maybe I'm doing observation and deduction. I then write it all down.



Way back as an undergrad student, I remember I had to go to the zoo for an anthropology class. The instructor had us observe the monkeys and write down our observations. The video is the actual zoo.



I'm doing that now, but people are the monkeys. I just notice behavior.


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The European Union clicked a blog, http://thoughtfulveg.blogspot.com/2014/11/neurons-that-fire-together-wire-together.html


From the picture, I could only tell "Europe." Great! A whole continent was looking at my blog! I looked up the flag. It was the European Union. I'm not very political. I have only heard the name before. I looked them up. "The European Union (EU) is a political and economic union of 28 member states that are located primarily in Europe. " https://en.wikipedia.org/wiki/European_Union
They started the Euro, the common currency. They wouldn't be making a mistake when they decide to look for me.

I was thinking what do they want from me? I remembered Europe also has a brain project.

https://en.wikipedia.org/wiki/Human_Brain_Project
America also has one.
 

I'm sorry that Europe is stumbling on me first. America is still determining me to be unconscious. My case should have been given to the NIH (National Institute of Health) long ago. America's problem is the Peter Principle.



It will eventually work itself out, but much will be lost. In that video, how long did it take NASA to figure out it goofed? Same here. I think I'm hitting private sector researchers, etc. Obviously I hit Europe. This is a round-about way, but it gets the job done. I'm trying to save information.


 




Sunday, May 7, 2017

Probably Misdiagnosis, but You're Not Dead



So quit complaining! 


I'm not an escaped rat, but some of my treatment has been along these lines. I'm only aware of one study a doctor was doing where all patients were given a cranberry supplement. I didn't see any problem with this, but no notice was given to patients and families for approval. That can be an issue. (I always asked what a medication was and what it was for.)
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I digress. After being in coma, ''I opened my eyes weeks later, but didn't talk. I made no reaction whatsoever. Not talking or reacting was taken to be vegetative (an open eye coma). "  http://thoughtfulveg.blogspot.com/2017/04/the-brain-survives-death.html
It may not have been vegetative state at that time, but Locked-In Syndrome. There are things later that look more like Locked-In Syndrome (LIS).


Definition

In 1995, the American Congress of Rehabilitation Medicine defines LIS as a syndrome characterized by preserved awareness, relatively intact cognitive functions, and by the ability to communicate while being paralysed and voiceless (American Congress of Rehabilitation Medicine, 1995). This syndrome is defined by five criteria:
  1. Sustained eyes opening and preserved vertical eye movement
  2. Preserved higher cortical functions
  3. Aphonia or severe hypophonia
  4. Quadriplegia or quadriparesis
  5. Primary mode of communication that uses vertical eye movements or blinking
http://cirrie.buffalo.edu/encyclopedia/en/article/303/
I did have some movement, so it was incomplete. Some movement will throw a lot of people. Most expect no movement at all.

Classification

[There are] three categories of LIS (Bauer et al., 1979).
  • Complete or total LIS: Quadriplegia and anarthria. No eye movement.
  • Classic LIS: Preserved vertical eye movement and blinking.
  • Incomplete LIS: Recovery of some voluntary movements in addition to eye movements.
http://cirrie.buffalo.edu/encyclopedia/en/article/303/ 


I remember using the shaking 'T', a sign in American Sign Language (ASL) for toilet, to ask for the bedpan. I had some movement in my left hand. I would finger spell in ASL. (Mind you I never had a class, but I knew it.) Nurses reacted. When I had private insurance I think doctors had suspicions of LIS. I heard a therapist mention my bleed was near my pons. (A pontine bleed is associated with LIS.)



When I switched to government insurance only, attitude changed. Before the change
I requested for a diaper. Bed pans were a luxury. I would not get immediate attention. I wasn't in a place in skill to just 'hold it.'

As I got more movement in my left hand, an Occupational Therapist in Southern California, set up computer accessibility for me. Medicaid shuffled me around some more (different hospitals). The hospital I was last at was a long time for me. I was there over a year. I was using my Mother's laptop for browsing and watching movies. A music therapist got me to do my first e-mail.

You can see the laptop computer.
 
That place was closing. I still had medical issues, but I felt as  if I could manage them (provide my own medical care- That sounds crazy!). I made the move for home placement.


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You can see the problem has been communication, not consciousness. This opens the door for a lot of legal problems. Why am I still unconscious? I'm published now.

A doctor refers to what I endured as the "THE WALLED IN ALIVE DISEASE! (French term for locked-in syndrome)." Locked-In Syndrome is what was earlier suspected!

http://spiritualscientific.com/DrMorseBlog/2010/08/16/not-a-vegetable-at-all-but-a-white-crow/

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You are looking at misdiagnosis. This gets more complicated as there is no malpractice lawsuit. The government won't admit to wrong-doing. 'What are they supposed to do with me now?' is the question. I'm still unconscious according to them. They may investigate. An independent lab or university may investigate. Either way, my consciousness remains to be an issue. 

We have to wait. This can be a long time or someone can step up. If current attitude puts my consciousness as low priority, it will continue as such. The government reflects the attitude of it's people in a democratic society. 

There is a tool for the average person:  PETITION. Universities or independent organizations may contact me. The federal government has refused to do Medicaid Waiver and may have written themselves out of the picture. I'm not sure if they will do anything at all...or if they even can- I am not in a facility and I have a private insurance policy as of this date (political policy may affect this).

Wednesday, May 3, 2017

An Extreme Hatred of Infomercials





When I couldn't move, I hated it when the TV was left on a show and it ended and an infomercial was then on for a couple hours. I did not need an acne face wash. (An acne facewash infomercial was repeated at that time.)

I dislike infomercials. Can't say I hate them with a passion. I definitely won't watch one of my own free will.

Unlike the above, "That hatred was part of what triggered him to start regaining control of his mind and body." My dislike of infomercials did not trigger this. I think "anger" did play a part, though. It was a great motivator.

Reading the above did not hit me like watching one of the news videos on this person. 




Yes, I agree with him. I supposed if I take these essays and put them to an audio program, they will have a voice. You won't even have to read.

He doesn't appear as having an extreme hatred of Barney. Instead, he sounds intelligent and dedicated. Maybe my situation will be changed to an extreme hatred of infomercials. That's not what caused the turn around, though. That turn-around is from hard work; hard work from an intelligent, dedicated person.
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I do speak, somewhat, now.
 

I ended up doing the above in two parts:  me speaking in a video, and a written piece of what I am saying and what I wanted to say. It was to be total video but half-way through reading, my voice got high pitched. My daughter called from the other room that it sounded like I was crying.

I ended up doing part video and part written. Speech is something I continue to work on. I do this by myself. I taught myself to speak. I don't get any therapy.