Where I Went

I shared a photo the other day of a doctor I had 14 years ago. My bleed was 15 years ago. This was the first place I went to after I had a brain bleed, my AVM stroke. It was a private rehab at a county hospital.

I spent a great deal longer there than government insurance would cover. As far as I know this program doesn't accept government insurance. I kept my work insurance after discharge under a little used ruling called COBRA. This is probably the first clue I had all my faculties plus more. Not many people are aware of the ruling.

The place I went to is a top notch brain rehabilitation program in California. I credit a lot of what you see today to them. They laid the foundation of which later skills are built on. The skill you see today may not have been there yet while I was there, but the building blocks were.

This is the first time I left a hospital for a few hours. 

It was that rehab. You can see the tube in my neck 

that would later be hooked to a ventilator.
On later thought, not many can be unhooked from a ventilator.

My post:

Hey! I haven't seen a pic of her in a long time. The 3rd from left is [my doctor back then]. She was my doctor there 14yrs ago.

I went to this rehab with my prvt work ins. When the ins ran out I became govt n moved many times. The govt ruled me not conscious n vegetative. I was not to get rehab.
I wasn't talking or typing yet, so it had to be a trip for [people at that rehab] to hear from me.
I left a govt program in 2006. I kept getting told I'd die before 40. I'll soon be 48.
They, Valley Medical Center Rehabilitation knew something was up, tho. They suspected Locked-In Syndrome back then. It prolly was. So many now said it most likely is the case n my typing is me coming out.
The govt still has me listed as vegetative! Not only no rehab, but no neuro either. Neuro is only consult to a hospital. I'm not in a hospital.

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I didn't stay in the rehab because my insurance ran out. I had reached my cap. (Currently, this can't  happen. It depends on politics.) I became Medi-Cal in California. This is the national Medicaid program.

I moved many times. I'd say this was due to lack of case management. I'd be put in a program. After there for a bit, the program administrators saw that I didn't fit the program and I'd have to move. A case manager would match the fit before any person is sent. My paperwork is also an issue. According to that paperwork, I am unconscious. Imagine staff surprise when they find out that I'm not, http://thoughtfulveg.blogspot.com/2012/02/a-special-kind-of-stupid.html

Government placement kept saying I would die soon. Now that I think about it, what were they basing this assumption on? The CDC mean is 78.8 years before death. At the last hospital in that lengthy stay, a doctor said to a nurse right in front of me, "She won't make it to 40." Did that doctor mean I'd die if I remained in care? There will be no argument from me if that was the reason. I already had one hospital super bug that nearly claimed me. I don't think this was what that doctor meant when he said that, though. This is completely contradictory.... The hospital staff thought that I'd die from an AVM bleed, but they removed the stitches from the experimental surgery that removed it.

That is a dead body in the top left corner.

My roommate had died. 
I got used to death being nearby.

To believe I would die from something not there was due to poor record keeping. I can only say, 'Get off your high horse! You didn't perform the surgery, so it never happened? You refused to note it? Now there are even bigger problems."

True life expectancy was never addressed. I have made the only attempt, http://thoughtfulveg.blogspot.com/2017/01/new-estimated-lifespan.html

What if the following happened, "I was thinking that the way I believe neurogenesis was started may have possibly set up a never-ending cycle"? http://thoughtfulveg.blogspot.com/2017/06/sparking-imagination.html This should be addressed.

Not much could be done for me if some freak accident gave me immortality. (Longevity is more likely, but imagination doesn't hurt.) A heads up could be given to scientists in the field of longevity. Who said this couldn't be cross-disciplined? I am the writer here, and I can notify whoever I want.


11-20-2017
There is definitely something wrong with life-expectancy. The govt was saying 40 before I left. I'll be 48 in Jan. The AVM was removed, so go back to the CDC estimate of 78.8, right? Well no if a stroke is the event that cleans damage of age left in cells. Take the CDC avg and add my age at time of stroke.
 

Some Development

https://www.nytimes.com/2017/08/24/opinion/minimally-conscious-brain-civil-rights.html?smid=tw-share

41% are misdiagnosed. Am I one of the 41% ...Or did I recover? 41% is high. "Pull the plug. There's a good chance I'm wrong, but the report says...." 

I was this, but I could do my own doctor care... and I can relate that info to my caregiver. I've walked people through on feeding, giving medicines, changing bandages, etc.

People don't know why I tell them to do something. I do. I know why. I did it today and I'll do it tomorrow. The day I can't do it is the day I go back to the hospital. I shouldn't be out of a hospital.

I was sent home to die. Doctors didn't know I was smarter than that. I did care and am still here.

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So this woman, Maggie, is blinking one eye. That stood out to me because I did that. I started vocalizing during this time. I wasn't saying words, but I was making sounds. This was during my first year, but after diagnosis was given. Per recommendation, I made the beginning sound of the word I was spelling.

This was still in my first year. I was at a rehab hospital. They would have me do a lap around the unit floor, down the hallways and past the nurse's station, in order to teach my left arm how to propel a manual wheel chair. Although I was initially unable to move, after a lot of therapy, the staff at the rehab hospital got me able to sit up and move my left arm.

By this time, letters I was blinking "yes/no" for were all on a single sheet. Prior, they were much bigger and on flash cards. With that left arm that I could now move, the speech therapist suggested that I point at the letters I wanted instead of blinking. Also, I should vocalize the letter.

The typing you now read is this. I don't vocalize when I press letters. The page of letters was replaced with the computer keyboard.

"Before I could type on a computer, I worked spelling my name on a toy. I believe it was an apple of some sort. I'd call it the Happy Apple because it would play an annoyingly happy tune. I ended up practicing quite a bit with that toy turned off." http://thoughtfulveg.blogspot.com/2013/06/how-do-you-communicate.html

I could say a word when I left the rehab hospital. I went to a nursing home in Southern California. I ditched the communication board and wouldn't  let my family tell staff about it. Getting rid of aides is a common technique in education. I would be forced to "use my words." (Have you ever heard a teacher tell a student to "use your words"?)

I've used natural conversation with lots of repeating as my therapy. From 2006-at least 2009, I added vocal activities of singing and reading out-loud. http://braininjuryknow.blogspot.com/2016/11/i-get-by-with-humor.html

When I left the hospital, I commonly had laryngitis. When my children first moved in I'd get it. I don't anymore. People with whom I occasionally speak to on the phone, notice improvement the most.

So much has happened over the years. This is generally how it went.

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"Even those lucky few who do get rehabilitation and are not shunted off to what is euphemistically called “custodial care” get too little time. Most rehab stays are six weeks or less. [I managed to stay longer.] But if the brain recovers through a slow process similar to development, why do we provide — and only to those lucky enough to receive it — just a few hours of rehabilitation a week for six weeks? It would be akin to sending your third grader to school for half-days of classes for a month or two and telling them that they are now on their own. Now that we know that it takes years for the developing brain to learn and mature, a similar commitment to the recovering injured brain now seems indicated."

There have been many instances where I suggested an education approach. "If we reconceived rehabilitation as education, no one would graduate after a six-week course of care. Instead, we would promote lifelong learning as a means to achieve a recovered life." I came up with a home-program that replaces the 6-week crash course, http://braininjuryknow.blogspot.com/2010/12/rehab-at-home.html .

It's low to no cost. If these persons are just put on follow-along case management, then small issues can be caught before they are large and costly. It would be a shame if one of those 41% got well enough to file a lawsuit that could bankrupt an already compromised system.

I don't want to hurt what little is there. As it is now, I am vegetative and unconscious. Some other way can be found to compensate me.

This is the rehab hospital. You can get an idea 

of "laps", as that is what this patient is doing as

part of the process to relearn walking.
Quite a few placements followed this one.

Celebrating the Weird

"But one doctor questioned Maggie’s diagnosis and arranged for her to be transported to Weill Cornell Medical College in New York City. There, she was enrolled in a clinical trial aimed at understanding how the severely injured brain recovers. While using high-tech imaging to assess brain activity, doctors asked Maggie a series of simple questions. The responses showed, without a doubt, that Maggie was still conscious. During that same visit, one of the doctors got Maggie to respond to a question using eye movement. “They told her to look down for ‘yes’ and look up for ‘no.’ When they asked her if I was in the room, there was no mistaking it, she very clearly look down,” says Nancy.

No longer labeled vegetative, but “minimally conscious,” Maggie again qualified for rehabilitation" http://www.newsweek.com/2016/05/06/vegetative-state-consciousness-brain-imaging-452747.html

 
"But before anyone can benefit from these new treatments, they must first be correctly diagnosed as having the potential to recover. “There are a lot of people out there who could be helped but aren’t,” says Schiff. “All patients should be treated as if they too have that same potential for recovery.” -True, but it doesn't happen. Read on. You will see.

So some have the potential for recovery. Hmm...that's probably me, but I now belong to the government. Now how often does government swiftly take action?

No doctor ever questioned my state. Instead I became a prized possession. A music therapist, "I was getting ready to play (in beds and wheelchairs [patients were brought in])….I wondered will these people even be able to hear music… A sadness came over me as I looked at them. They put Angela in a wheelchair right in front of me and told me I could start playing." http://thoughtfulveg.blogspot.com/2012/02/angela.html

"No longer labeled vegetative, but “minimally conscious,” Maggie again qualified for rehabilitation" http://www.newsweek.com/2016/05/06/vegetative-state-consciousness-brain-imaging-452747.html  This never happened with me. As you can see, I was put up front. I became the spokes person for the vegetative.

That place trained me to say I was "semi-vegetative" for my diagnosis. I thought this was a good thing. I didn't know it was just a morph of the words for "persistent vegetative state." I thought I was moving up from being vegetative. This was just an illusion.

People need to ask why I was left to try and recover on my own. Why wasn't I rehabbed?

Mesmerized By What My Eyes Have Seen

I knew every step of the way. I don't care what others said, I knew. I couldn't say anything. I had no voice. It's said vegetative people don't  know. Well, not this vegetative person. I knew. My body just didn't show it.
 

My first word was "No."    Any wonder why?

 

Family was told, "She doesn't know you," and "She doesn't know you are there."  Wrong. I knew. I knew who visited and who didn't. Not only did I know my name, where I was, what day it was, and who was president (all hospital questions.), but I could give a short history of most subjects and explain how most things work. Of course all of this was in my head. I had no way to get it out.

That's why I'm happy to have this finger and a computer. I can say and be understood.

Don't say,  "She doesn't remember." I do. I  remember everything. All I've seen...

                 

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  The closest I could find to my situation that was on video was:

He just doesn't have the memory or awareness  of the rehabilitation. I do. I'd also venture to say it's not done yet with me. Obviously it's not done if there is continued substantial progress, rehab is not done. His rehab was a few years. It's already been quite a few with me recovering skills. I'm still listed as being in a coma. Isn't this proof enough I'm not?

All kinds of questions should be asked now.