Thursday, December 27, 2012

Here I Come

I got to thinking...not only are medical records difficult to follow because of the "Medicaid Shuffle", but an entire surgery (an important one) could be omitted because it was not government. I don't know if the government even acknowledges that what was done is even possible. If not, then the surgery at Stanford never even happened. I'll try to put events in order.
The first hospital that I received treatment, was the trauma center. I was flown to this one. I remained in a deep coma at this place. I really don't have memories of this place, and therefor have obtained the records. According to those, I was unconscious and received many surgeries.
I was transferred to a rehab hospital. I credit this place for much of what you see me doing today. Sure I didn't do it while there, but they started the process. (This is also the place that started that medication, As time goes on, I see this medication as the reason for progression and it needs to be researched.)  Places may not be able to reach ideals, but they can do like someone else. That's why I use this place as comparison. There is no reason why other places can't do the same if it's already being done.

The rehab facility is also where my private insurance ran out and I started the government medical program. This is the reason why I'm writing this. I received procedures not government accepted and they were not covered by government medical insurance. Procedures not government accepted might be omitted.
I started Medi-Cal, the Medicaid program in California. Placement was not stable. My condition was permanent, and therefor placement should have been permanent. (My condition has not been permanent,  though, so I'm able to address issues.) First I went to a nursing home. I was there a few months,  then the owner sent me to another home. My mother came to visit, saw I was sick,  and I was re-hospitalized with pneumonia. That's three places already and it hadn't been a year yet.
 So I was back at the place that put me in the nursing home that moved me. Let's try this again.  They placed me in a sub-acute care facility. It was like a very large nursing home, except there were a few hundred patients. This time the placement was a few weeks when I got sick and was hospitalized elsewhere for dehydration. I came back, had a different room, and this time was interviewed by someone from the state. That place was sanctioned already, but my incident didn't do anything.
I had started the process at Stanford to shrink the anomaly in my brain. Once shrunken, doctors at Stanford would remove it. Stanford is the place, I'm afraid, will be omitted. They performed a surgery not covered by Medicare. It is because of that surgery I am most likely still alive. The blood clot in my head should have claimed my life a few years ago.
When Stanford did a craniotomy, I entered as  the resident of one place and left as the resident of another. My placement had changed and I wasn't even there! I was in 5 different places, not counting Stanford before being placed at  the next placement, El Camino Hospital in the sub-acute unit. (Six places from 2003 to 2004. This isn't very good.) I liked this place the best that took Medicaid. I was there not quite 2 years when that unit closed. The pictures and the intro of this are from someone there,
Rather than move into another Medicaid placement, I pushed for living with family. Technically I'd be living by myself with a family member visiting daily. The visiting family member turned into a visiting caregiver from a community program. I was familiar with the concept of Independent Living (a philosophy, a way of looking at disability and society., and I knew what resources were available. I could also do a more medical Independent Living because of my background, and the procedures I needed didn't require specialized skill.
So, from that last hospital I went into a regular house. First a rental elsewhere, to now living next door to my father. I have been here in this house for years...all the while I keep improving. This improvement started years ago, back to that rehab hospital, Santa Clara Valley Medical Center. The progress was able to continue because of a surgery I managed to get (Stanford). The life-saving and rehabilitative procedures have come from private sources. The government has only provided maintenance-I guess that's all they have to provide.
Neither of them have provided the case management. The VA has some sort of case management, so this concept isn't foreign. Hospital social workers won't do; the person can't be employed by a placement facility due to financial gain. Case management was an old job I used to do. It's odd that these old jobs I did prepared me. First case management, then therapy. If the process of managing a brain injury is going to continue for others, then those things, case management and continued therapy, have to be added in. There is no case management now (in the programs I have been in), and the therapy Medicare/Medicaid provides is minimal. Basically you are kept alive and disabled until you die. The people who have a brain injury and are on public medical assistance, will have to be skilled in case management and providing therapy. ("Hey I did it. Can't you? Oh, that's right, I'm an ASS.")
"Continued therapy doesn't have to be expensive. Just set up a home program ( at the time of injury when the initial rehab is done. Case management does annual checks and therapy can be checked at this time. The home program can be revised if needed (That's the continued part!). This will catch people like me. How many people right now are in a vegetative state that fMRIs have picked up thought?,, (There are plenty of articles. I could keep listing them, or you can look them up yourself.) Now, with the advancement of medicine, maybe one of these people will eventually move an arm. I did. (Now it's not too hard to believe I could type with that arm.) These people are still classified as vegetables. People like me are going to start showing up. There will be a group of vegetables...unless they are caught in time and reclassified. I need to be reclassified.

Thursday, December 20, 2012

Amazingly Stupid

Brain damage causes mental retardation is a big misconception. It's discrimination.

"You are amazing." - Michelle Bowen

Not really. I just have ASS, acquired savant syndrome. (I don't mean to offend anyone, but this abbreviation is too funny.) Savant syndrome is already extraordinary. To then get it from injuring your head  or having a brain injury makes it even more extraordinary. So then,  anyone with a brain injury or a head injury has the potential for being an ASS.  They could be very smart.

Where did the concept of brain damage causing idiocy come from? This isn't true. Damage to the motor cortex (motor areas in the cerebral cortex) would be brain damage. This damage ONLY affects the motor areas, not thought. These people are not stupid.

What if there is a speech problem?  A person knows what they want to say, but the words aren't there or the mouth just doesn't work. That person isn't automatically an idiot just because you are not answered. Maybe you are the idiot for expecting an answer.

I couldn't talk....Stupid. I started making sounds....Amazing, but still stupid. I was talking, but you couldn't understand me....Stupid.  Now you can understand me.

So I'm an ASS who can answer you. Don't you now feel stupid?

(Mental retardation isn't a bad thing either. That's another misconception. The term is misused as well. Don't get me started.)

Friday, December 14, 2012

To Infinity and Beyond

Nobody has tracked my recovery from coma to consciousness, That's why the pictures and the narratives.
"Predicting the chances of recovery of consciousness and communication in patients who survive their coma but transit in a vegetative state...remains a major challenge." The attitude of "It can't happen, so don't bother" prevails. The case this was written about happened, though. Should that be ignored also then?
"Very few studies have examined the slow neuronal changes underlying functional recovery of consciousness from severe chronic brain damage." I don't possess the equipment or ability and can only post pictures and narratives. It is truly a loss for science to be so close-minded.
What I now look for isn't there. What do I expect next? This obviously hasn't stopped. The following hasn't happened, "This case shows that old dogmas need to be oppugned, as recovery with meaningful reduction in disability continued in this case for nearly 2 decades after extremely severe traumatic brain injury." It's only been one decade for me. All I can predict is that there is one more decade. That would still allow science to do some of the above. This is only the case if my predicament takes the same amount of time.

Like the video, my recovery may  not be graceful, but I'm doing it.

(The above quotes are from and are about a man who began talking nearly 20 years after his TBI occured,

Monday, December 3, 2012

I Have ASS?

Acquired Savant Syndrome abbreviated is ASS. We know what a savant is. It's a brilliantly smart person, smart in usually one area and usually disabled. Acquired savants then, get the savantism due to a head injury.

This greatly interested me. I had a head injury and seem to be getting only smarter.

Savantism is already rare. To get it from a head injury is even more rare.

I talk about mine before I heard about acquiring it,

It is possible to have a head injury and then be smart.

[If you know of something else, please leave it in the comments. I did write this, and many other things AFTER a brain injury. Also, that piece above on neuroplasticity requires quite a bit of knowledge about the  brain. I did not write before the brain injury.]