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.]

Wednesday, November 28, 2012


You won't find this document in any medical record. It's here by chance. During my hospitalization at many hospitals, this was thrown into a box. It was written by my doctor at the time to Social Security. The motivation was money.
You see, as "semi-vegetative" sometimes I was there, sometimes I wasn't. When I  was there, I was fine. My hospital bills weren't being  paid on time. This could easily be fixed by a doctor telling Social Security I was competent to receive my money and not need a payee. The doctor was at-risk of losing me as a patient because of non-payment. If I controlled my money, I could pay a bill on time.


Friday, November 9, 2012

The Bleeding Brain

I don't know how I'm doing it  but I am. Give me a baby with a Grade IV bleed and I'd do the same. It's  just very difficult when it is yourself.

Grade IV bleed - brain bleeds were classified in severity by stating  how many lobes were affected. A "Grade IV bleed" would involve all four lobes. This was the worst of the worst.

Mine would have been classified as such and it is amazing that I am able to communicate this with you.  A Grade I bleed would involve only one lobe and rarely needed intervention.
"Describe the efficacy of early intervention" or something like that was on the Comprehensive Exam for my MA. One of the answers was reducing the disability one full level (ex. Severe to Moderate).
I was Severe and now I am Moderately Disabled.

In my case, that is exactly what I have done. I'm not early intervention. I'm much too old. The practices and techniques need to be looked at with serious consideration of applying those to brain injury.
What is it that  I did? It's not very common.

I was a program manager. Besides my background in development, I knew some OT, PT, and speech. I also had the necessary business skills of a manager. Focus was always on the child as a whole and the interactions with others. I've used the same approach on myself: focused on the big mess of myself (not just PT or speech or any other specific area).

Friday, November 2, 2012

Seeing The Obvious

How could this happen? How about the first person in this video,     Ten years go by and nobody notices anything? In the first, it is 20 years? Nobody noticed anything?

It's obvious I now have brain function. If I don't, then I'd like to know how I'm doing this. Yes, new brain scans will have to be done. The old ones don't hold true to what I'm doing. So far nobody has noticed.
I'm telling people to take notice.

How did I get by? You'd think I would be studied.  That hasn't been the case. That previously has not been the case. Those above people were not studied until discovered. I'm not exactly discovered yet. You did, but not by someone who can study.

"These are not the droids you are looking for." It has been the same with me. Sometimes we are right under your nose.

Monday, October 22, 2012

Nothing is something. Choosing not to act is an action. So what if I said no to research? I can do that. This is America and I have the right to remain silent.

I'd be doing something though. It just wouldn't be what they wanted.
This presents a problem to the science community.
What do I want? Maybe they could buy me. That is the American Way.

Friday, October 12, 2012

You Won't Forget Me

I could have been one of those kids-just the normal everyday kind of person you went to school with. I went on to do my own thing. No big deal. I had ups and downs like anyone else. Maybe some more "ups", but it was nothing to go in a history book. Now it's different.

This is the government's way of dealing with  things...
That's how they have dealt with me.
I have had the most terrible, wonderful thing that could happen to a person happen to me.

There are things that are known and unknown. Instead of looking into what is unknown, I have been stuck on a shelf, filed away, and forgotten about.
What is known:  I had an AVM bleed which left me PVS. I was unable to talk or move. I am continuously getting better (although extremely slow). I am most like this guy, but I am much higher cognitively functioning. Also, I have not stopped in progression- you can still see it as it happens. A while ago a physical therapist became obsessed with timing me do an exercise. Each time, my score improved by maybe only a second. I had to stop her.
The unknown:  why am I getting better? Although it is extremely slow (a few seconds for
an hour of therapy) it is still happening.
The government's way of  dealing with this is:  I have a number (Social Security number), and yearly I'm sent a form to be marked "yes/no" for improvement (this is for Social Security). My improvement has been slow and I usually mark "no". This guarantees Social Security payment. Improvement has been fast enough that I will have to mark this form "yes"eventually. Then there is the possibility Social Security is not guaranteed.

For 6 years I have lived independently.  I guess it's okay to be vegetative and live on your own.

If getting better can be replicated, even if it is slow,  the implications are great. Think...the ability to heal any brain injury.... This issue CAN NOT be forgotten.

Now take one of those kids above. You won't forget them.

Thursday, October 11, 2012

Breathe Deep

Smell is something that is ignored when it comes to brain injury, or worse, ridiculed. It shouldn't be. The olfactory nerve is in the brain. In the case of brain injury, spontaneous smelling means this nerve is being stimulated. That means a nerve in the brain is working. Nerves in the brain working should be encouraged. Use it or lose it.

Recently I saw something on reverse engineering. It gave me an idea: apply the concept to neuroscience. All along my way, I've experienced a heightened sense of smell. I've taken it to be there's a reason for this to occur, but let's change it so that smell is first. Smell caused a change.

What we do know:  "
The brain acquires certain skills—from visual perception to language—during critical windows, specific times in early life when the brain is actively shaped by environmental input. And "Neuroplasticity is a non-specific neuroscience term referring to the ability of the brain to change structurally and functionally as a result of input from the environment." from the search engine I'm using although it gives which is similar. So a change in the environment, huh? I can do that. Therefore, by manipulating the environment, these critical windows may be "re-opened" for learning.
Smell could be the environment. What is it?  It's perceiving odor. Well, what is "perception"? "All perception involves signals in the nervous system." It's just chemicals in the brain stimulating a specific nerve.The olfactory nerve (smell) is in the brain. It's the first cranial nerve.

We know smell is involved in learning. "There have been many studies that have shown that new cells also migrate to the olfactory bulb, a region connected with learning of smells." (Personally I was also probably developing smell, but for this intent I'm putting it first.)
The idea I have is simple enough: Manipulate the environment by changing the smell and THEN implement learning. Smell happens in the brain. Learning happens in the brain. The circuits are closely related. They have already been linked.
So let's change the environment. I'll need a smell. I'd like one that has been shown to work. It would be nice if it's fairly inexpensive and readily available. This should work:, an orange. It's readily available. If you don't have one in your kitchen, then they are at your store. They are cheap, too!
To use, simply peel. It's the peel that has the fragrance, so it's very inexpensive. It's what's discarded, the garbage.

Since I'm changing my environment, I will saturate it with the fragrance of orange. Not only the peel, but I'll add orange scented lotion, orange flavored lip balm, and orange toothpaste. These are things I already have. These are also scents that will be on my body. They'll go where I go.  If  I had fragrance (body spray), I'd wear that, too. (If you can eat orange candy, then add that.)
The easiest way to start an exercise routine if you are not in therapy: In it I give some basic information. This isn't meant to replace therapy. It just makes it easier. If not already receiving it, I urge you to get some. What's here, will hopefully  make it stick. You are in charge, not the other way around. Who changed the environment? You did. You are  directing how this plays out. You are the boss.
So breathe deep. The environment is changed.  Now some sort of therapy must be implemented.


 (If the scent of orange doesn't do anything for learning, at least it is "Sedative; relieves muscle spasms, cramping, and indigestion."


"There have been many studies that have shown that new cells also migrate to the olfactory bulb, a region connected with learning of smells." - See more at:

Updated 3/24/2016

Do this with rosemary.

If you do essential oils, then great. This can be done without. The plant is very aromatic. Potpourri can be made or just use sprigs from the plant.
"The aroma of rosemary essential oil enhances memory and the ability to remember future events, research finds."

Saturday, September 29, 2012

Why It Won't Happen Again...For A Very Long Time

Why It Won't Happen Again...For A Very Long Time

Why won't this happen again in the public American medical system anytime soon? Money and current research is ignored. Wait. I did it. Can't someone else like me? Yes, but that person will have to possess my qualities. That wouldn't be anytime soon. (Qualities like how to provide basic rehab.)

There have been some leading (upper-class) people who have had brain injuries and have gone on to do remarkable things. They have one thing in common - they didn't use the public medical system.  Government officials won't use the government. I need say nothing more. Actions speak louder than words. I don't want to put these people down. Their injuries are serious. They just got the best they could afford. So have I. I can only afford the dirt on your shoe, though. So, anyone who does not have money will have to use a public government healthcare system that is undesirable to the government. Therefore, one using it has little chance to do something remarkable.

The second issue, and this is big to brain injury, current research is ignored. Here's a current issue that has been gaining popularity:  rewiring. The theory is not accepted. Rewiring does not exist. I've even done something on rewiring,   It doesn't matter, though. I don't exist. How can so many people believe in something that we are told we should not.

Here's something I did a while ago, It's based on actual current research. I find myself using it again and again, explaining to survivors of brain injury that there is growth, progression. Is my document one of the first few applications of this research? It basically is saying there is brain growth for years after a brain injury. Whoa! That totally goes against the entire medical system. They say a brain injury is permanent. This is the ultimate in rewiring! It ultimately does not exist. For someone like me I did not recover enough to write this. According to the government, I'm still lying in a bed unable to communicate. Again, the current is ignored.

Tuesday, September 4, 2012

Making Something New

Making Something New

“These fractionations appear to be something totally new,”  from This is talking about muscle groups. I mentioned something similar to this in    When I say "I'm "making a new neural pathway", I am." I'm giving the neuroscience behind it.  This "something new" is seen in more than movement. In my case you can hear it, also.
This really puts the science behind creating something new and movement,  Movement where there was none? That's "new."  This was captivating enough to catch attention, and somebody important helped with

 I do give the neuroscience behind it, and you see it's more than motor neurons. Remember, I didn't talk. I do now. It's not the greatest, but I can be understood. I don't sound as I did before my brain injury. This is definitely something new. Speech is not motor.

Because something "new" is being made, it is important that therapy continue a lot longer than current rehab. Sure there is initial rewiring but something else is going on. This goes back to my original description of the brain as being moldable like clay, yet possessing wondrous properties Some insurances will continue past the initial rehab. Those receiving that are lucky. For the majority, therapy stops when rehab stops.

This "new" thing takes a lot longer than rewiring. It's probably making a new neural pathway where one didn't exist before. Theoretically, the skill will continue to improve as  the therapy continues.

*For those with a brain injury and current therapy has stopped:

Saturday, August 25, 2012

My Right Eye

"What's this?"

"Nothing." I quickly threw it away.

When I got out of the hospital, I had some boxes to go through of things my mother kept. There were a lot of boxes. I was in many hospitals for 4 years. While going through a box, a caregiver found an old eyepatch. I don't wear one now so she wouldn't know what it was.

I was lucky. My eye was only patched. Some places will sew it up.

It's been a process, but I use that eye again. It's not the greatest, meaning it is still weak, but no one would ever patch it now. I did something similar to Edward Taub's Constaint-Induced Movement Therapy:  use the weak one. He did it with arms, and I did it with eyes. Look it up. People are being amazed.

Other posts on vision:

"I Can See!"

"A New Therapy"

Monday, July 16, 2012

Where Is The Responsibility

A long time ago I commented on a talk. It's time to watch that lecture again. (Don't worry. It's not long.)

In it he talks about life span and how it has increased. He then applies it to neurological disorders and talks about how more people are living longer, and will therefore suffer from more neurological disorders. I see it differently. People suffering from neurological disorders will live longer. What will this mean? We only know what some diseases do short-term because the person who has it dies. I kept thinking, "Are we going to see more people wake up from comas?"

I'm the first with PVS, but this has happened before (to a lesser extent. He was talking, but not writing.), Will it happen again? Probably.

So, what brought me to write this? Well like Where Is The Love, we don't know where the responsibility is either.

A while ago I had a surgery and I wondered if that particular hospital would lay claim to my feats of late. They really are not responsible for what I am doing. They are however, responsible for me living longer. I would have done it anyway if I lived long enough. They don't know they did it, but Stanford Hospital did something big: The government's, and many hospital's policy is to treat my problem with medication. The person eventually dies. Stanford Hospital removed the problem entirely. It no longer affected my life-span. By lengthening my life, they gave me the time to do what I needed to do.So what I am doing is still of my own doing.

Responsibility lies more with a drug prescribed at another hospital. It is associated with, but not yet tested for, brain growth. All that I'm's due to brain growth. But really now, who is responsible for my actions? I am.

Thursday, June 28, 2012

So Tiny It's Micro

"For seven years, Angela was in a coma, waxing and waning, often in a “semi-vegetative state”." It should have changed, maybe in year 3. I was in a long-term care unit in a hospital at that time. That could have been possible, but I believe this has never happened. Besides, I was government, Medicaid (Medi-Cal in California). Change doesn't come easy to the govt. If change does come it's usually years later. My diagnosis should have changed to MCS, or Minimally Conscious State. What am I now-fully conscious?

What's happening now is "Boom! She's awake." That's not correct, or someone would have noticed right away and there would have been immediate news coverage. Instead it has been a very slow change, seen better from year to year rather than day to day I have a photo stream where you can see the slow progress. The last picture really shows the difference in my face. I'm smiling in both pictures, but you can't even tell in the first picture. It took a whole year of oral-motor exercises just to see it.

This shows the "micromovements" E. Taub was talking about were there. You just couldn't see them. I'm proposing these movements are in all areas, not just upper extremities as he does. They are movements so small, it looks like the affected side lost them. As a therapist, how do you know they are there? You don't know for sure, so you'll have to assume they are there. They will only work again if:  the brain is still in tact (penetrating brain injuries might have affected this, as well as some other injuries), the spinal cord is in tact (this rules out SCI), and the area you are working  with is still there and not impeded (deformities, contractures, frozen joints, etc.).

Progress will be minimal and slow. It might help to do a yearly photo or recording. Exercises will be the same ones you do already, but don't expect the patient to actually "DO" them. They should "TRY". If it's 10 reps, it's still 10 reps (only 10 attempts). If it's PT, Range of Motion will start as inactive and become more active. You will FEEL the patient activate the muscle. The movement isn't micro anymore. It's just small. Continue with Range of Motion, having the patient do more on his/her own.

I don't have the fancy equipment in the video below. However, I do have myself. I can only see these changes in my behavior, and assume this is the reason. I can't see changes in my brain.

(Incidentally, if you let the video continue after the long pause he talks about "Learned Non-use" )

So for 7 years it looked like I did nothing. It only looked that way. There was something else going on. We can't see micro.

Friday, June 22, 2012

Learning Crap

I have said a young child does not rewire. How can they if they did not wire in the first place? Now there might be some, but it depends on the child's age. An infant's wiring is much less than an adolescent's wiring.

When I say "wiring", think of your car or house. Same thing, and most people have to deal with those. If your "wiring is fried", then you have to replace it. In essence "rewire." A new house or car has to be wired when made in order to work.

A disability will distort the wiring. As a child grows, this distortion will become the norm. In the following lecture, a good example of cleft palate and wiring is given.

Around 17min in he talks about a child having a cleft palate speaks and so hears "...muffled English...degraded Japanese. It's crap."

A disability will distort what is coming in, and the child experiences and learns crap. So it is like that when a child has a brain injury. Only it's everything. The brain is the central place for learning and thought. A child experiences crap, learns crap, and thinks crap. So the child grows up giving crap.

Monday, June 4, 2012

My Stupid Boss

If you are approved for IHSS, you must hire someone (your individual provider) to perform the authorized services. You are considered your provider's employer and, therefore, it is your responsibility to hire, train, supervise, and fire this individual.
I receive this program. IHSS stands for In-Home Support Services. I live independently in my own home. "The IHSS Program will help pay for services provided to you so that you can remain safely in your own home." That says something right there. I'm deemed competent enough to live in my own home, without constant nursing supervision.
I got out of the hospital in 2006. It has been quite a few years that I have  been living independently. It would be quite a shame that a higher power would decide now I should be placed in a care home (at the tax payer's expense). Leaving me as PVS, permanent vegetative state, does that, though. It is conceivable that a person with PVS is put in a home to never be heard from again.
It says something else, though. This has bothered me. It's okay  to be a mentally incompetent employer. This gives meaning to the phrase "My stupid  boss." That could be true and that's fine with the government.

Saturday, May 12, 2012

I Walk Alone

I Walk Alone

It was proposed that something unusual happened in my brain, "functional neuerogenesis." Sounds like no big deal, but maybe my mother's words of firsthand observation will, "brain regeneration."

I address this in

I've said I would have the most rewiring ever. Well, if 80% of my brain "neurogenerated", then 80% rewired (being optimistic and theoretical; 80% is the number one doctor uses). Most who had a brain injury and are on the internet have considerably less. Even in hospital care, survivors had less damage. These people also had the "semi-vegetative" classification. Most could not talk. Almost everybody was tube-fed (I saw only one eating. He could talk, but didn't always make sense, and he was on a ventilator.) In the intro of this a friend tells of how he first met me. I was placed with people supposed to die.

I use "80%" because that's how much damage I had. We don't know if all 80% repaired yet. Also, I'm still alive, so my brain can't be autopsied and removed to cut it up and see. So we can only go by observable behavior. More than half my brain was involved. I shouldn't have made it. I did have some brainstem as my heart kept beating.

Technically  if you use right now as the half-way mark, then I have 9 more years to go. So stick around for 9 years. I don't think it will be that long, though. I don't really know for sure, but there's a sensation that I associate with neurogenesis that doesn't strongly occur anymore.

Some of the most important things have already completed. One being I breathe. This would be one of those few things that can be explained by neuroplasticity, a theory. Another big thing is that I talk. I couldn't find an explanation for this until "functional neurogenesis." Functional neurogenesis already occurs in babies. Like babies say their first words, so would I. It has only happened in childhood and is thought not to happen again. So this would also be a theory.

I have tried to present only facts, but in my case it has been theory. This concept of "rewiring" everyone is talking about is a theory - neuroplasticity. What's taught in medical school is your brain is hard-wired. There is no adaptation. Once damaged, that's it. That's a view I strongly disagree with. Now I add functional neurogenesis to my repertoire.

Functional neurogenesis is another theory. I believe it to be more common than thought, which.would be the optimism from the Special Education in me. As if Psychology wasn't enough, Special Education comes along and says, "It will happen. Just give it some time." (Special Ed teachers will work for years on the same student.)

So mine is coming....

Friday, April 27, 2012

Not there? Where is she?

The lights are on, but nobody's home.

7 year coma-it could be more because of the government definition, but Dr. Morse doesn't agree. Would you? I'd still be in a coma if you use their definition. [It will be 15 yrs in Dec 2017.]
About 2 months after my injury I opened my eyes. I was determined brain dead and life support to be removed. I did blink right before that, though, appropriately in response to questions, so life support was left. Life support was a ventilator.
Eventually, I was diagnosed PVS. About 6 months later I started making sounds. This was unusual, but my insurance ran out and the government took over. Then it was nothing. Therapy was limited to something like 30 days and a bit longer if the therapist did an extension.

I taught myself to talk. I rehabbed my left hand by moving marbles. (A person where I was had a container.) I typed this with my left index finger. Now I'm working on my right with pegs ( I don't have parallel bars, but I do have a walker. I have it so it won't tip over. I've taught myself to stand-up. I can't remain standing, yet, but I know that this will come.  Although I received no out-right therapy, my background and training afforded me that. Others aren't so lucky. If a patient does survive, therapy is usually stopped.
The whole time I remain PVS because the government says so. The one who you can compare me to is Terri Schiavo. Remember how some doctors thought she could be rehabbed but it would take a long time? I'm that long time. I still have that diagnosis she had, as she was stopped at the beginning. This year will be 10 years for me (and I'm not done yet). I'm not done, but able to communicate.
So 7 year coma it is. No one knows what to call it. My eyes were open, but I wasn't there.

UPDATED 11/13/2017

Wednesday, March 28, 2012

New Brain

Dr Morse's blog, can be quite confusing. I'll pull out something that is quite astonishing:  "Functional neurogenesis means that new brain cells grow deep within an area of the brain called the hippocampus, and then migrate to specific areas of the brain where they are needed.  These new brain cells then permit new functions or repair damaged functions in the brain." This is the process he believed happened in my brain.
I have a new brain? Not exactly. When you have a cut, new cells move to the area and repair it. You see a scab and eventually skin. Something like that happened, but with my brain.
Recently there has been a woman in the news who re-grew her breast, I re-grew my brain. If this is true or not is to be determined, but it took me more than enough years.

Tuesday, March 27, 2012

Not Done Yet

My sister was visiting. "You're talking better than last time."  I should have improvement. Just because I was "found" doesn't mean I stop. Let's look at a phrase, "is even starting to walk again",  That right there means the process isn't done.
Here it is in full context, "Yet she has made a full neuro-psychiatric recovery, with her personality and memories basically the same as prior to her massive brain injury. She speaks, can use her arms and fingers, and  is even starting to walk again!" I only made "recovery" enough to be declared "recovery." That doesn't say "all done."
There could be many more years or just a week until I'm "all done".
"Probably,  since time doesn’t exist in this all knowledge state, Angela didn’t realize that it would be seven long excruciatingly difficult years to fix her brain." It could be 7 more years for the whole process to be done. I don't think so, though. That's just professional opinion as a developmental specialist. We see cognitive skills complete, with lacking in motor. "Talking sounding better" would be improvement in oral-motor skills, and probably maturity of the voice and vocal production. I would doubt many more years, but I can only work so fast.


Sunday, March 25, 2012

Dualism: The Mind and The Brain


I can say they are definitely two separate things. How? You are reading this.  You have to know my story. In the past, someone in my condition wouldn't be able to communicate with you. But technology is changing that. Look at this video, but watch how he is communicating:  
Just because his body doesn't work doesn't mean he can't think. I used to have something similar to that computer set-up. A dot of some sort of material was placed on my forehead and I'd play a game to learn how to manipulate a cursor on a computer screen, a head mouse! I've been in the same boat. As time went on I didn't need that. I started making sounds which led to talking, and it has been documented that I now type with one finger. "Angela Ronson suffered a major AVM bleed and stroke with massive injury to her entire brain.  She was in a coma, semi-coma, and ultimately the “locked in syndrome” for a total of 7 years.  Yet she has made a full neuro-psychiatric recovery, with her personality and memories basically the same as prior to her massive brain injury. She speaks, can use her arms and fingers, and  is even starting to walk again!"

So, I obviously had ideas in my mind, but not the brain capacity to get them out. They would have to be two separate things then. It has been taught, "The brain is the mind." I say that is only part of it.

What is the soul? According to it is "the principle of life, feeling, thought, and action in humans, regarded as a distinct entity separate from the body, and commonly held to be separable in existence from the body; the spiritual part of humans as distinct from the physical part." I don't think of the soul as thinking. I think of the mind doing that, though.

So all this time I was in a body with no working brain (other than bodily functions), yet I still had thoughts and ideas in my mind. That makes a strong case for two separate things.

Brain injury,
I am saying your mind is still the same. Your brain is different.  

Friday, March 23, 2012

Neuroplasticity Created Rain Man


I have increased knowledge after a brain injury, when many do not. This happened due to the rewiring process. The following is an excerpt of a conversation on a social network. I worked with this person. I used to advocate for individuals with disabilities in a former job position. The kind of knowledge needed for that was quite extensive.The quote shows just how far this knowledge goes now.

Angela Ronson
Long time no hear from. Anyway, remember how I had all that disability law knowledge? (Obviously I still have all my faculties.)

Hi Angela! Yes I remember. And I think your knowledge regarding disability rights has increased since then. I've been reading your blog and posts. I'm in absolute awe of you! And I'm fascinated by your journey. There is so much we don't know about the brain and neuroplasticity. Your continued recovery is a good example of that. You my dear need to write a book.

Back in my 1st yr of Psychology I remembered something about multiple copies of a memory are made and are stored in various places of the brain. We don't use all these copies, hence a lot of information is forgotten...but it is still there. (Remember that grade school teacher who said "Apply yourself"?) Now in neuroplasticity the brain will rewire. Since I lost the original wiring to a memory, my brain rewired to a copy. There were many copies, though, so my brain just rewired to all of them (at least most). This would explain my increased knowledge. I didn't learn anything new. It was always there. (I'm finally applying myself.) This also explains a great deal of music, movies, and TV programs being mixed in. There was a great deal of this in my childhood, therefore a great deal of multiple memory copies. (Let the TV be the babysitter.) Neuroplasticity also rewired to these. I really don't have "increased knowledge", rather an increased use of knowledge.

Also, since the rewiring happened directly, something unusual occurs: "...allowed Peek’s neurons to make new and unusual connections between his right and left hemispheres." This is about Kim Peek  Peek had no corpus callosum. Memories were directly wired. This explains why I  have some of his qualities. I discussed this issue and didn't know why I was so much like him. (note: I don't remember as many facts, because I never learned them.)

The multiple copies theory of memory is widely used today:


Thursday, March 15, 2012

Vegetable? Not!

Updated 3-1-2014 ; 6-29-2016

(My recovery is a separate issue. This only deals with the legal matter.)

To say I'm a vegetable would be deceptive. So what does that say about the American government? Do they really say that you ask? Yes they do. Let me explain.

When I opened my eyes, doctors determined I was brain dead and life support was to be removed. Before that could happen, I responded by blinking my eyes. I was given a PVS or Persistent Vegetative State status. Now if you look at the case of Terri Schiavo, she had this PVS diagnosis. What happened to her would determine the outcome of anyone with a PVS (and brain injury too) diagnosis. With her it was determined there could be no recovery from PVS. Just keep this fact in the back of your mind. We will come back to this.

Now go to my situation. I had slow progression, eventually talking. I was classified "semi-vegetative" but really had no clue what that was. I thought I was rid of the PVS diagnosis. Actually, I wasn't. I didn't realize there was a court ruling determining my situation. What had happened was doctors couldn't really move me up. They came up with the term "semi-vegetative" meaning nothing more than semi-PVS. So I was still PVS.

FRUSTRATION! Why couldn't I shake this thing? There had to be some sort of rule somewhere. I looked more at the Terri Schiavo case. It was a right-to-life case, but what she had would set the standard for others who had the same problems. She had PVS. Also, she had a brain injury. Her outcome would set the precedent for all PVS and brain injury patients. It was determined no progress would happen therefore it would be okay to end her life.

"No progress would happen." No progress in PVS, and no progress in brain injury. That's why I couldn't shake it. It was legally determined I would make no progress. That's not the truth, though. In an e-mail, "The fact that you can communicate in an intelligent manner is proof in and of itself!" I've been doing lots of things that are cognizant. Yet, I still have the PVS diagnosis. I'm a "talking vegetable."

This issue will have to be dealt with, because if I wanted to, The Florida Supreme Court made the diagnosis permanent. Once you have it, you always have it. There can be no progress. If, in the future, a person with PVS gets better, he/she can rob a bank and not be charged. PVS already makes the person incompetent, and you can't charge an incompetent person. (Incidentally, researchers this is why your funding is drying up.)
Science and politics are getting mixed together.  One discipline is more free to make changes and I'm stuck with a label.

Sunday, March 11, 2012

It's Hard To Find A Caregiver

You may eventually need one. They are not what you think. I happen to have two. The following don't work for me anymore (thank goodness):
First, there's Half-Ass.  She's through the state program.  So government.  Government will give you a Pinto, as opposed to a Cadillac.  Hey, I'd be satisfied with a Ford Escort.  So not only am I given the bare minimum, but the worker also has an attitude against her employer and barely does the job.  
Then there's Half Whit.  She's private pay.  Actually, reduced rent in exchange for care.  Here's an example.  She wanted to know why she had to use the cans of Ensure in the refrigerator when making my drink, and not the ones in the cupboard.  (Excuse me, doesn't your beer come out of the refrigerator?)  

I saw this long ago:

You can get the above two like I did. Sometimes it's worse. You get druggie and thief (had them too). It's hard to find Carrie the Caregiver.