Thursday, August 25, 2011

Flagpole Sitta

This is an early picture. I might have still been on the ventilator at night. I know it was before talking.
I don't understand why so much attention was paid at first when I started making sounds, now nothing. Movement, too. What is "recovered quadriplegia"? That was the diagnosis on a referral. I've never seen that as a diagnosis. Whatever it is, I have it. And cognition? It doesn't take an IQ test to see I wrote this. Is everyone just waiting for me to fly? I'm now thinking that's not good enough.

Tuesday, August 23, 2011

The Description

This isn't like anything I've ever seen or dealt with. I'll describe it as best I can. I did a developmental profile, but I find that to be lacking in some areas.

I'll begin with the injury. It's mostly my account, with some bits and pieces from friends and family as I was unconscious for parts. I had a severe brain injury and was in a coma. When I woke I was brain dead and tetriplegic (could only open/close my eyes) ...then quadriplegic...then hemiplegic...then left-handed (was right). I couldn't talk, and I had dysphagia. Now I talk and orally take Ensure (just a little). I obviously am not cognitively impaired (surprising considering the severity of the bleed). I've been in 5 hospitals, including Stanford, where the embolizations and last craniotomy were done. Also, there has been a sub-acute hospital and 2 nursing homes (licensed and not) from 2002 to 2006. I now manage in my own home with a home care person that visits and is funded by a state program.

I had an AVM bleed. It was located in the cerebellum, right next to the pons, and the way it bled was also like a brainstem bleed. Although I immediately sought medical attention at a clinic, I wasn't taken to a hospital for surgery until hours later after I lost consciousness. After surgery, I remained in a full coma for 5 weeks.

Throughout all of these years of recovery, progression has been slow. The first year was faster, as I had private insurance, but has slowed to a snail's pace with switching to government assistance. It is still progression, and hence, I would call it recovery.

In the first year I was like
The person in the video was Jean Bauby, the editor of Elle magazine. He wrote a book using one eye. I now write using one finger. It is much faster. 

I'm not like that anymore. My progression can be seen here

So,  initially coming out of a coma I could not move or speak. I could open my eyes and I could hear. (The latter part of the coma I could also hear.) It took intensive rehabilitation to be able to sit in a wheel chair (as opposed to laying in bed). That took a specialized wheel chair and a contraption called a "head positioner." One thing I think should be noted, all medical issues had to be dealt with and close to resolved before working on developmental skills. Before I left the rehabilitation hospital I started making sounds. They scoped me-put a camera down my nose to look at my vocal cords. All was found normal. Nothing more could be done as my insurance had run out and I switched to the government Medicaid program.

I had to leave that hospital. I went to a nursing home on the other side of the state. It was a drive for her, but a sister did visit. After a few months, that care home moved me to an unlicensed home. I got sick. My mother had to drive a few hundred miles to come get me and take me back to the hospital. I had pneumonia.

Another placement was found after that. I was there even less time before ending up in a hospital. This time no water. The owner of that place was already in jail as I understood, for fraud. That place was already sanctioned, and a state investigator came to ask me questions. I was there only 2-3 months.
Something else was going on. A week before I left that place, I started the process at Stanford for removal of the AVM. Up until this time it had been growing to pre-bleed size. The idea was simple enough-there would be several embolizations to shrink the AVM. It was too large to be surgically removed. Once small enough, a craniotomy would be done. This process was successful and spanned 2 months. It took 3 embolizations before a craniotomy.

When finished I was at a different hospital, not the sanctioned long-term care facility. I was in this new hospital the longest from 8/2004-3/2006. I got my trache out there.  After there, I only moved because that particular hospital unit was closing. (I probably could have remained hospitalized another year.)

The trache was in at this time, but I was completely weaned from the ventilator during the day. I was on it at night.

Had surgery to close trache hole that wouldn't close on its own.

Now I live independently. I rent a small house next to family. I have a home health aide visit 3x/day. I've received the maximum in Outpatient Rehabilitation that Medicare allows. I know it's not enough, but I am afraid the public doesn't know. So I've written a detailed description of what to do I mostly want to be stressed.

So, I continue on my own with no one's help (although that would be nice). Where am I now?

I'd like to stress- I AM NOT FOLLOWED BY ANY DOCTOR OR ANYTHING MEDICAL Since I am the closest thing to a professional, and have all my mental faculties, I will document as much I can and make it public on the internet (I shouldn't). Also, I believe this to still be recovery from the initial injury. Biological stability isn't enough. Since the brain is involved, there must also be developmental stability (and there hasn't been in my case).

* UPDATED 11-7-2012
* UPDATED 7-20-2015

Monday, August 15, 2011

Neurogenic Therapy

Is Angela's Rest Technique (ART),, neurogenesis? It basically puts movement where there was none. And it does so by working on the brain.
Now in order for this to work, there shouldn't be any spinal cord damage. Also, there shouldn't be any physical impairment in the desired area. Something like a straight forward brain injury would work best.
I'm thinking that the area that does not move is not paralyzed, but most likely needs re-wiring. "But there's no movement at all." Well then, take and move it. Train it. Use your good hand to move it, or have somebody else do it.
I don't remember which, I believe it was a video, Edward Taub described micro movements that we couldn't see were behind his Constraint Induced Movement Therapy.  (CIMT). This would take that theory one step further. I'm proposing there doesn't need to be any movement at all. Not even micro movements. I believe all there needs to be is a working brain and working parts. The desired movement had to exist prior to injury, thereby laying the foundation for the new movement. (The movement isn't actually new. Just getting it done is.)
The reason ART works is the brain is constantly bombarded with natural information, but in a way that the brain has to deal with it. ART uses body weight and gravity. Those forces cause the brain to re-wire/make neuropathways to deal with the information coming in (gravity pulling body weight against an area that does not have neuropathways). Also, the involved area must not be impeded such as Spinal Cord Injury or physical deformity.
Because gravity is involved, it also develops proprioception. The person would develop their sense of their body in space.
Again, I will use myself as the example. I have pretty much been doing ART and there is now movement. Instead of it being a miracle, the blueprints were already there, it just needed wiring. The basis for movement was there as I was able to perform the desired action prior to injury.
Because this process works on the brain, quality of movement would continue to improve. The neuropathways involved would become stronger. If this is used after movement starts, movement will improve. I also recommend adding physical therapy at this time. (I continue to do this and the quality of the movement improves).

Wednesday, August 10, 2011

An Attitude Adjustment

1.) Kaiser sux

2.) no case management offered for TBI (traumatic brain injury) unless in-patient, intubated, etc.

3.) OT and ST is part of the cadillac of treatment for TBI

4.) PT exercises will not work when not based on documented nerve abnormality

5.) what's happening to me (medical neglect and exploitation, not being treated for TBI appropriately despite making monthly medicare and insurance payments) is the NORM FOR HOW TBI'ers ARE TREATED -Joy Taylor

This is a common feeling with HMOs. The feeling, though, goes beyond the HMO, it's a reflection of society. That person has had to deal with other issues, and now the HMO issue is personal. Brain injury is an invisible disease and is treated as such by society, by this HMO. Just because you can't see it, it's not there? Or worse, it's a brain injury, so one is now mentally incompetent.

I'll use myself as an example since I am the worse case scenario I know of. Could a person having such a terrible brain injury be so mentally incompetent they write and put together Look at the title. I, myself, have dealt with this stigma society has. It went all the way to the family.

I still had my mind though. Just because my body reflected this injury doesn't mean the social attitude is right. For now I will smile and nod. Then I will write about it. Those who read it will think, if someone who had it so bad can write about it, then maybe someone with a lesser brain injury has feelings? Maybe they deserve better treatment?

Disability is discrimination. Disability is impairment, it's less. Even in oppressed groups of people, the disabled are seen as less, not only oppressed, but oppressed AND disabled.

Thursday, August 4, 2011

Ask The Retard

* [If you refuse to read this because of the word "Retard" in the title, you are missing the point. I only refer to myself as that. If I am so brain damaged, how could I write this?]

Was my glass half empty or half full? I was housed with the "semi-vegetative." I took this to be semi-conscious, and therefore saw my glass half full. Others didn't. "Semi-vegetative" was no more than a vegetable. A semi-PVS. The idea that "mental capacity [is no more] than a corpse" ( existed. Yes I recovered mentally (not motorically), but I've been viewed as a retard. When I began to talk, it was like "Don't listen to her she is brain damaged". Maybe instead of what everyone "thinks", they should just ask the retard.

PVS can be a fate worse than death, especially when you understand, as I did.

I guess PVS is one step beyond that. When that movie was made, hope was a dream. Well, dreams can come true.