Tuesday, December 30, 2014

Vegetable On the Loose


People asked what happened and where you have been. Well, I've been at home and home doesn't keep medical records. As for what happened...the closest is this comedy movie clip:



I wasn't a prisoner. The hospital couldn't keep me. As soon as I could, I went out and came back. The very first time I did this I wasn't even completely weaned from the ventilator yet. My sister was having a birthday party at a kid's restaurant and I could piggy-back in and have cakes for my children. I had missed one's birthday and the other had one coming up.

I was on the ventilator at night while I slept. I could get out of the hospital for the day. This was already the second hospital and it had been 9 months.


As I got better, I went out more often. The hospital I was at during my final outing was moving everyone in the unit I was in to other living arrangements as it was closing. I didn't want to move to a nursing home. This was the fourth hospital. (There had been two nursing homes, also.)

A sister signed as a caregiver. I don't think I was ever discharged. Care was only transferred. The arrangement lasted a few weeks and I should have returned to the hospital. This was an area of specialty for me, though. I used to do coordination of services for persons requiring medical care, but remaining at home. I could do this as long as I remained conscious. I wouldn't have to return to the hospital if I could set up community care.

I remained living in my own home, but used community resources. You need to know which ones and if your community has them in order for you to do something like this.

This is what I have been doing the last few years. I have a local specialist amazed at my ability to get special medical equipment delivered directly to me. I just know my community resources really well.

As you can see, I wasn't on a field trip. I was on an outing, though. While out, the economy crashed and that particular hospital unit I had been at closed. I had no where to return. I've done fine and don't want to go to a hospital now. (Besides...it's a lot cheaper.) I'm still "semi-vegetative". Change that term. Don't send me back because of it.

Updated 1/25/2015

Thursday, December 18, 2014

Can't Damage Me

Updated   8/15/2016



The following video is the closest I could find to what is going on with me. The clip is of a TV program so it is made to look fantastic. I'm in real life and this is not fantastic. Time is real- sure recovery time in me is fast enough to be noticed over days, but it happens in seconds in that video clip.





The fastest in me would be a bruise. That can take a few hours to disappear. A scratch would be all day. Deeper cuts, 2-3 days. I won't stick my hand in a garbage disposal.

It's my whole body...not just this brain injury that people are so familiar with. This is how I figured it out.....I was hospitalized for pneumonia. I was used to that. This time it was bad, though.  I just happened to be at a top-notch place. They wanted to intubate me. They said I had sepsis. I refused. It was bleak and they said I was looking at a couple months. Three weeks later I was being discharged.

They took blood. Then they took more blood. I left and haven't been back. No poking and prodding at me. I knew I wasn't imagining things and something was up. I'd figure it out myself. I eventually did, http://thoughtfulveg.blogspot.com/2014/08/amazing-order-of-events.html. They didn't have all the pieces to the puzzle. I did. Some of the key information wasn't even in medical records...but it was in my head.
 
This brain injury is taking quite a while. As can be seen, I've already gone from severe to moderate. That has taken me a few years. So if those with severe brain injury think they are stuck, no this is not true. It does take years, though, and rehab programs don't last that long. You will have to be prepared to do it on your own.

Being part of my body, my head would heal, too. I've gone from severe to moderate. I've gone from not being able to communicate to doing this stuff. (If you can't read, then I can't help you.) I didn't change the word "Persistent" to "Permanent." I'm sorry I couldn't keep up with an idea of how long I should take to show awareness around my body. The e-mail I received explaining to me I'm still in a coma is the most asinine thing I've ever seen, http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html

My body hasn't stopped responding to attempts at bettering it. People are amazed when it happens.

Is anyone recording this besides myself? This stuff is more important than what's on TV. 


 

I've opened my eyes after coding. I'd say I was sleeping.

Thursday, December 11, 2014

You Are My Sunshine

Updated 8/19/2016
              9/12/2015




/19


The Stevie Wonder song "You Are the Sunshine of My Life" came on. I was flooded with memories of singing my first song since opening my eyes after a coma. The title of that first song is similar, "You Are My Sunshine."

I knew all the words to the main verse. Everyone else just knew the first sentence. At the time I had no clue this was a sign of the neuroplasticity that was also going on inside me.

I remember singing at the nurse's station. Vocalizing didn't come from speech therapy. It came from nurses. I still had speech therapy at this time. Speech therapy would have been surprised by all the sound I was making.


You are my sunshine, my only sunshine
you make me happy, when skies are gray,
you'll never know dear, how much I love you,
please don't take my sunshine away.


Speech Therapy ended as soon as I left that place. My medical insurance ran out. The government plan picked up and any therapy stopped.

I left that place able to vocalize, so I continued the therapy on my own. I did mostly singing and reading aloud. Using my language to communicate was a natural built-in exercise. Family didn't understand why I didn't use my communication board. I think my speech turned out well.
 



 
Update   8/19/2016
Giving up the communication board is a technique in speech and special education. It would be "going it alone."




Sunday, November 30, 2014

Neurons That Fire Together, Wire Together



So neurosculpting...that's what they are calling it now. I've just called it physical and occupational therapy with neurophysiology knowledge.

In the above video, this person gives the example of her client having fisted hands. She specifically relates this to holding horse reigns prior to the accident. I guess in my case I could say holding the steering wheel of my car, but I don't. Besides, there was a time gap after driving.

Instead I have related fisted hands to decorticate/decerebrate posturing. Look at the picture and pay close attention to the hands. They are fisted. This posturing would occur in damage to certain parts of the brain. This picture shows more severe damage. Posturing will be less severe in lesser injuries.

Look at the feet. I wonder...I wouldn't be surprised if there is a connection to dropfoot.

       
The next part of this "sculpting" of movement by applying neurology knowledge comes from an old saying: "neurons that fire together wire together."



Digits should move together. Don't worry about finger individuation yet. First get movement established, then being able to move each finger by itself can be worked on. Raking and scooping, then an inferior pincer grasp (thumb against side of forefinger), and finally a neat pincer grasp (pinching) is the progression.

Once movement is firmly established, then exercises to develop individual fingers can be implemented. Don't worry things are moving together. Be happy they are moving. No movement would be more serious damage to a neural pathway.

That saying, "neurons that fire together, wire together," can be applied to all movement. Not just the fingers, but the arms and legs. If one does it then take the other along. (If you do leg lifts with one leg, then do that with the other. It may just be less.)

Wednesday, November 26, 2014

Supersonic Hearing

VIDEOS UPDATED 4/7/2017
 
"You must have supersonic hearing or something,"
"Yes I do."




I am extremely low vision. I can see up to 7ft away with my left eye and 3-5 feet with my right. It was less, so I have hopes for more.

My first memory is of hearing something. I was most likely still in a deep coma. This is represented in lighter coma at the end in coma scales. It was a buzzer or alarm. It was annoying, and I thought it my alarm clock. I was sleeping good! I didn't want to wake up. I later found out the ventilator had an alarm and the noise was that.







I had been asleep for 5 weeks.

That was 12 years ago. I was classified as in a Persistent Vegetative State (PVS) when I woke. It became "Permanent." Some call that a coma. I disagree. Do I appear vegetative? Do I appear like I'm in a coma?

Sunday, November 23, 2014

No Neuro Is No Concern

 

I'm surprised this issue doesn't concern people:  I do not have a neurologist, nor do I receive any neurological care.

I had brain surgery in 2004 to remove my AVM (arteriovenous malformation). This was the cause of my brain injury. My current medical plan was to leave it, treat it with medication, and wait for it to explode and kill me. This plan was not optimal. Stanford University offered something unusual but risky. They would try to shrink and remove the AVM. The procedure was not covered. It fell under research and was taken care of by the university.

I had been diagnosed as being in a Persistent (I think it changed to 'Permanent' at this time) Vegetative State, so I only received necessary daily care and general medical.

The surgery was successful. Instructions to follow-up with a neurologist never happened. The routine follow-up does not happen. I should get annual neurological appointments. I don't.

I was diagnosed as being vegetative way back before the surgery. The state was deemed 'Permanent.' Although my danger of dying was removed, and what I have gone through more closely resembled MCS (Minimally Conscious State), I am permanently vegetative.

The government has gone as far as to e-mail me and explain to me that I am in a coma. http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html
 
I don't get anything but general medicine. I get regular GI appointments because I have a feeding tube. I saw a neurologist once when I got out of the hospital only because I pushed for it. It was not routine.

Vegetative persons don't get much other than nursing home care and basic medical. I don't even get all that now, as I am not in care. I get basic medical.

(Why would a vegetative person not be in care such as family or care home? The diagnosis I have is not right.)

Tuesday, November 18, 2014

The Drive



I question myself...Did I get these special abilities after a brain injury...or did I always have them? I've just had to rely on them now. They have been there. I just didn't use them.

I've always been smart; super-smart. Pull-out in school started in the 4th grade. In junior high I remember using the local college library for my research papers. I left high school at 16 (tested out). Started college a month later at 17. Schooling was always easy for me.
 
Holding focus was not as easy. Even my AA and BA are in two different majors. I think it was my senior year in college that I changed my major from business to psychology. My MA is a third major, Special Education. I could hold my attention...just not keep focus.

There's another trait I've always had...music. I played piano quite a bit. There was also guitar. I also did a year of trumpet. All came fairly easy. Now that I am unable to play an instrument due to disability, music theory continues.


Writing was something I knew how to do, but I only did it when I needed to. Now I need to write. It's my means of communication. I'd dare say, this man communicates emotion through painting. Although he has words, feelings are not expressed that way.

 

At 2:59, if you sit for hours working on the same thing, it's going to happen.

Focus and drive are more intense now after the brain injury. Intelligence has been there. I've focused on myself, so I've applied the intelligence to myself.

I see my knowledge as a free commodity, and have therefor shared it, https://plus.google.com/114061315171466252323/posts/iMnFUwnweU6 It doesn't matter where the knowledge comes from. Sure you can cite the source, but we don't cite our parents (or caretaker) for knowing our ABC's.


Tuesday, November 11, 2014

It Gives Hope



What happens if I'm given Savant Syndrome?  Well...it means I'm conscious, which is important to me. It also gives hope to the tons of brain injury survivors and their families. I got a winning lottery ticket. There is one! So often brain injury survivors are told there is no hope. Me having Savant Syndrome makes this not true.

The person who does this will be fighting a big issue sometimes referred to as NEUROLOGICAL NIHILISM "A neurological nihilism—a sense that treatment for many brain problems was ineffective or even unwarranted—had taken hold, and it spread through our culture, even stunting our overall view of human nature. Since the brain could not change, human nature, which emerges from it, seemed necessarily fixed and unalterable as well." http://www.normandoidge.com/?page_id=1639 This issue is big. It doesn't affect a few countries, but the whole world.

I see the countries in my blog stats. It's not just a few. There are many. There are countries I never heard of. The issue of me not being conscious is global. "Come to Spain," not said in that way, but I'm too busy waving my American flag. (Actually, there was a doctor in Spain. His broken English gave that message.) It's too risky for me to move to another country.
 
There is a local issue tied to this. A bit ago, a woman with a brain injury caused by a medical condition, had her feeding tube removed. She died. It held lots of controversy. I've been stuck on this one a while. Then it hit me the other day...apply the same thinking we do to late-term abortion. This woman's tube was removed rather late in the game. It was highly controversial . I look  at old videos and question her level of consciousness. Like late-term abortion rules, this would still be controversial, but what happened to her wouldn't have happened. I noticed a hole in her neck. Removal from ventilator early on would have been better. Time limits will have to be developed as not all situations involve a ventilator.

As it is now, the current ruling can be applied to me. I'm obviously not vegetative anymore. This is what happens when the word "persistent" is changed to "permanent." My lack of consciousness persisted, but it wasn't permanently gone. Since the word was changed, I am now permanently without consciousness. This ruling is also in part responsible for my avoidance of hospitals. I'm not going somewhere that might end my life. I find this funny because I was e-mailed explaining that I am in a coma.

Now we go on to Savant Syndrome, Acquired type. "Savant syndrome is a rare but spectacular condition in which persons with developmental disabilities, including but not limited to autism, or other central nervous system (CNS) disorders or disease have some spectacular “islands of genius” that stand in jarring juxtaposition to overall limitations." https://www.wisconsinmedicalsociety.org/professional/savant-syndrome/resources/articles/savant-syndrome-2013-myths-and-realities/  Sounds like me. I wrote this paper, yet I am so disabled I should be in a coma. If you were under the impression that this disorder was autistic only, it does state, "or other central nervous system (CNS) disorders." A brain injury is this. The acquired type of savant syndrome can occur after a brain injury.

That paper goes on, "Typically the skills occur in five general areas—music, art, calendar calculating, mathematics or mechanical/visual-spatial skills." Music could have been if I was able to hold an instrument. My grandmother was a piano teacher. As a baby she would hold me on her lap and sit at the piano. Formal lessons most likely started when I was 4, but I was already advanced. I played in my first piano recital when I was 5. I played daily until I was 9 years old. I moved and saw my grandmother once a week. Children can lose interest and I did. When I was 16. I started piano again, but not as strict, as I was a teenager with ideas. When 16, right before 17, I left high school and started college I
taught myself guitar when 18. I also graduated from college  https://myspace.com/angelar70/post/activity_profile_366221284_dc708415bae048fd93b651b12b20bdf9/comments
 
Writing can be a form of art-literary art. I use it as a form of communication. That's one reason there is so much. I will be creative. That's where the art comes in. I don't think about that, though.

I tell how I use math, http://thoughtfulveg.blogspot.com/2014/11/impeding-science.html . I will do a complete data-based functional analysis.
 
I found this in that paper surprising. That article specifically mentions something I do, "Other skills occur less frequently including...outstanding knowledge in specific fields such as neurophysiology." https://www.wisconsinmedicalsociety.org/professional/savant-syndrome/resources/articles/savant-syndrome-2013-myths-and-realities/  How did I end up as group administrator of an on-line group called Neurophysics+? If you have Facebook, the group is located at https://www.facebook.com/groups/IFLNeuro/
 
It is possible that I just have superpowers. The video below is a man diagnosed with Savant Syndrome, Acquired. His very first sentence, "I don't know how to say Godly moment, but it was one of those moments where you are starting to question what's going on." His injury was from a swimming pool accident. Again, a brain injury not only gives hope but wins the lottery.
 
 
 
 
Instead of superpowers, I say there must be a reason.


Saturday, November 8, 2014

Impeding Science


.
 
My unconsciousness is impeding science. The talk above is not 100% correct, but it's enough to make me conscious again.
Just because I should be unconscious on paper does not mean I actually am unconscious in real life.
 
Since I am unconscious, science can't really study me. So...I'll put stuff here.
 
______________________________
 
There's something I do that's closely related to math. I will do a  data-based functional analysis. It's close to http://specialed.about.com/od/specialedacronyms/g/aba.htm but doesn't always involve a behavior.
 
Strange mathematical abilities can appear after a brain injury. It happened to Jason Padgett.
 
 
______________________________
 

This blog will give me a list of views. Other websites will do that as well. I'll take the data and do a complete functional analysis. Some people are surprised by what I find, but I'm just given numbers.

That's just computer data. I will do the same with behavioral data. I will do an ABA, or Applied Behavioral Analysis.

______________________________
 
Long ago I made a statement that math is the "glue" that holds the universe together. I said it without thinking, and I don't think about it now. There's only one way to do math and it's done the same way no matter what language you speak. The comment was important enough for someone to report on it, " She recently reported to us that math is the glue of the Universe, and is the spiritual equivalent to the Christian concept of the Holy Spirit, in our lives. That is a profound statement of the scientific (math) spiritual (Holy Spirit) connection that we all need to understand better. " http://spiritualscientific.com/DrMorseBlog/2010/11/09/angela-ronson-part-3-how-our-brain-is-connected-to-the-universe/ I think it's something we already know and I'm just pointing it out. 

Monday, November 3, 2014

You Talking to Me?




Imagine...a patient goes into the ER with her own equipment and her doctor's cell phone number. (The doctor was on vacation, and it was a Sunday also.) I had everything. I just needed skilled labor. It's okay that they didn't know what to do. I did.
 
It was worse when I couldn't talk. The Stooges was the norm. People knew what to do, but they didn't know they were supposed to do it. (Like when I coded but then opened my eyes. "Do you still want to be intubated?" I said "no." First of all, you don't intubate a conscious, talking person. Second, I coded? That was never addressed. Why did I open my eyes? Did these people also need to be told what to do? They were a specialized team.
 
Now I see what was needed...direction. Having the proper tools also helped.

_________________________________________________

 
"Talking to me" was a shock. My speech hasn't been that great. It was once non-existent. I listened to my daughter describe how I used to point out letters on a board (Speech Therapists, that's what this is...pointing out and pressing letters on an electronic communication board.) Before pointing, I'd blink.

I didn't have the behaviors. 
She says she was wired wrong.
I wasn't even wired.


_________________________________________________

I speak now, although there are times I am difficult to understand. Loved ones will take the time. Sometimes they will have me repeat it correctly. I was surprised when the GI Specialist called and wanted to speak to me.

I don't talk to people I don't know on the phone. There's a joke with my family that I speak Spanish. A person called once from my daughter's union to give the topic of the up-coming meeting. As soon as I opened my mouth, "Oh, let me go get someone who speaks Spanish." So now I speak. It's just a different language.

If you understand me, remember there were many takes, this was a good day,
and you took the time to listen to me talk slowly.


Sunday, October 19, 2014

Progress Doesn't Count Here



"You are a fraud. Prove you were in a vegetative state. No one in that kind of mental state of being can use a computer much less form coherent thought. You are nothing but a troll preying on the lesser intelligencia who gullibly believes in your crap." - comment from BerryM on http://thoughtfulveg.blogspot.com/2013/06/why-i-shook-my-head.html

I'm not a fraud. The government made a mistake. It's a pretty big one, too. To mistakenly label someone as unconscious is big. According to this statement above, the government does not make mistakes. The government was right all those years ago, I am a "vegetable."


So it asks for proof... http://thoughtfulveg.blogspot.com/2014/10/the-medical-records-of-horror-story.html quotes the most from medical records. I'm not a corpse anymore, either. Why doesn't that get any comments?


This is where I was. (I'd still be there if it didn't close. Could what I am experiencing be due to a failing economy? That would be awesome!) You can't tell me no mistake was made. A music therapist says, "I first played guitar for her when she was in the Sub-Acute area of El Camino Hospital. A nurse one day begged me to come and play for the people there that had no hope. They were what are referred to as "vegetables" and when I first saw them pushed into the room I was getting ready to play (in beds and wheelchairs)….I wondered will these people even be able to hear music…" http://thoughtfulveg.blogspot.com/2012/02/angela.html

I was labeled not conscious because I didn't move. Now that I move you think it would be changed. No, it won't. The government has gone so far as to send me an e-mail explaining to me that I am in a coma, http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html

Progress doesn't count. You are stuck with what you are given and that's it.

So back to that comment, "...No one in that kind of mental state of being can use a computer much less form coherent thought..." I agree. That state can't. Why am I still classified in this state? Is it because my speech isn't understood? I've worked hard on that so it can be. That means it goes back to http://neurosciencenews.com/neuroimaging-consciousness-vegetative-state-1444/ Scientists Find ‘Hidden Brain Signatures’ of Consciousness in Vegetative State Patients  Oh no! I'm not understood. Now it's something different.

I've learned your way, but I'm still classified "vegetative." Whoa. That's oppression.



 Someone who is asleep will not say no. Neither will someone who is unconscious.


If anyone is "gullible" and feels like I am "preying on [your] lesser intelligencia," please don't read this. It is just a blog, and is full of my opinions. Go read the tabloids or a science fiction novel. I'm not twisting your arm.

Thursday, October 9, 2014

Don't Get Your Hopes Up

Are you just fooling yourself? "Once confirmed, Angela Ronson, 'progress,' defined as the patient's conditions changes and she's willing to have it studied, would appear to be a valued & positive status upgrade."- Robert Demichelis II. The "progress" I've had has been going on for a long time. What would all of a sudden happen to change that to the progress is now recognized?

Some are excited over the fact I'm exhibiting movement on my paralyzed side. http://thoughtfulveg.blogspot.com/2014/08/my-parralyzed-hand.html  This progress isn't something new. You are reading this typed with my other "paralyzed" hand. I didn't go to a therapy to get this hand working. I did this myself...mostly using marbles and containers. The marbles came from a recreation cabinet when I was in long-term care at a "real" hospital. No formal therapy. This is what I did years ago with special needs preschoolers.

Progress goes further than that. The big one I noticed was sound. I started making sounds like 7 months after waking from a coma. This is the deep sleep I was in. The government says I'm currently in a coma. I don't think so. I opened my eyes. I just couldn't move and that's what they call coma. I'm too slow to make deadlines, so the original diagnosis stuck. Now I talk. It's funny since I still have that original diagnosis. 


No therapy on that one. That's big. Progress can be heard. The government still has me in a coma, though.

I don't see this new movement I have making any changes. It should...but I don't see it. The government can be very slow. Don't get your hopes up that "this" will be the change. Change will happen on its own time. In the mean time, I will embarrass some people.

Some may think, "OMG! The real deal...savant syndrome." I refer you to the experts. Making diagnoses has never been my thing (and I've been in the position.) I'm not starting with myself.

Wednesday, October 1, 2014

The Medical Records of a Horror Story


I obtained my initial medical records. I knew something was amiss. My initial Glasgow coma score (an initial score of consciousness) was very low. It was 3. The lowest you can get while still alive is a 3.

Recently I re-read the initial hospital transfer record. I knew it said resuscitated, but I wanted to see how the word was used. "Resuscitation" is bringing someone back to life. CPR is cardiopulmonary resuscitation. If someone has a heart attack, you want to get their heart beating again so you do CPR. You are essentially bringing that person back to life. I wanted the whole context of the word used.

I was stunned when I read the sentence, "The patient's blood pressure and hypothermia was resuscitated." Blood pressure is restarting the heart, but I couldn't believe "hypothermia" was also done. Hypothermia is when your body temperature is below normal. My body was cold.

So I was cold and had no heartbeat. Isn't that a cadaver? I had to look that up. A cadaver is a dead human body ready for dissection.

"Hypothermia was resuscitated," would mean a cold, dead body is brought back to normal body temperature. Not only was my heart restarted, but my body was warmed back up.


Restarting a heart and warming up a corpse has been done in fiction. Now it's in real life.




Why it was decided to revive me as opposed to sending me to the morgue I do not know. For everyone who says "You are lucky to be alive," I can answer, "I'm supposed to be dead. YOU are lucky I am alive."

Updated  11/2/2016

Tuesday, September 23, 2014

I Question the Definition



"In exceptional cases, prolonged support is possible as long as oxygenation, circulation, nutrition, and treatment of multiple medical complications is provided," they write.  http://www.medscape.com/viewarticle/832001

It's going on 12-years that I have had a feeding tube. I was on a ventilator at least 8 months. I breathed through a tube in my neck for 3-years. I spent 1 more year breathing through just a hole in my neck. The neck hole can be viewed at http://thoughtfulveg.blogspot.com/2014/04/my-hole.html

I should be in medical care...but I'm not. Those needs are provided for in other ways.

I was in a deep coma 5 weeks. One friend described that it looked like I was sleeping. My family says they were told I was "brain dead" when I opened my eyes. A bit later I was  PVS, persistent vegetative state. "Persistent" turned into "Permanent."

Permanent stuck. I now talk. I never met any vegetables that talk. I'm now moving my paralyzed arm. The arm I am typing with was once paralyzed.

Brain death didn't fit. "...California's Uniform Determination of Death Act.That Act states that an individual who has sustained either irreversible cessation of circulatory and respiratory functions or irreversible cessation of all functions of the entire brain, including the brain stem, is dead." http://www.medscape.com/viewarticle/832001#2 My heart was still beating at the time that was said. A ventilator did my breathing. I still get nutrition through artificial means, a feeding tube. (I believe the feeding tube still qualifies me for nursing care.) I did not respond to my environment. (I do now, obviously.)

The  word "decerebrate" is used in a report. Was the word interpreted as no cerebral function? The entire term used was "decerebrate/decorticate posturing to pain." This describes motor quality, not brain function. The report is the initial hospital transfer record from Sutter Roseville.

A while ago, I received a letter explaining that what I am experiencing is also called a coma. http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html So I am currently in a coma. I would say I am experiencing recovering paralysis. (In my case only. I cannot comment on something I don't know.) Yes, that would mean what was called PVS was total paralysis. As I recover, I am able to do more and it looks miraculous

Now for PVS... This state wouldn't have meaningful conversation. There definitely isn't any writing in this state. "Moreover, if this person is typing full fledged sentences with complex thoughts they have moved beyond the minimally conscious state and into something akin to "locked-in syndrome" or what might just be called severe paralysis," Gary Williams. Locked-In Syndrome is what my family thought I had when I didn't talk. Others have said it, too, but I never got a formal diagnosis.

PVS may have fit at the beginning, but not now. I question the word "permanent." A rare disorder has been forgotten. If it is applied in this situation, questions can be answered. Certain words/terms can't be used.




I make this journey, not you. Ask me if you have questions.


Sunday, September 14, 2014

Developmental Profile II



I need to update my Developmental Profile, http://thoughtfulveg.blogspot.com/2011/03/developmental-profile.html  I wrote this when I wasn't using my right side at all.  http://thoughtfulveg.blogspot.com/2014/08/my-parralyzed-hand.html shows that I do use it now. I was an Infant Development Specialist for a long time. A Developmental Profile was generated at the beginning and throughout services, to document skill levels, needs, and progress. The children served had or were at-risk of having neurological problems. Nothing like that exists for adults as adults usually don't go through childhood development. I also have the knowledge to write about this now and I do so with one finger. These are indicators of a rare disorder I have not been diagnosed with. What appears to be developmental growth (different from childhood developmental growth) would be activation of adult stem cells. This is also not diagnosed in me.

"A neurosurgical diagnosis of posterior fosa intracerebellar hemorrhage and obstructive hydrocephalus and intraventricular hemorrhage possibly due to arteriovenous malformation was made" is my original diagnosis. At the hospital I was at prior to coming home, I was trained to say I was "semi-vegetative." I also was the only "vegetable" that talked. (My speech was poor and not widely understood, so "she must be messed up" mentally. Not said exactly like this, but still said.)

I begin with motor. On my left hand, the hand I type with, I am adding more dexterity to my middle finger. I use an inferior pincer grasp very well with this hand. I have used the neat pincer grasp (pinching) with this hand a few times, but it was conscious. It's not really emerging yet. I'm using an inferior pincer grasp (thumb against the side of my forefinger) on my right hand. It is somewhere between emerging and fully incorporated. I believe the hand was more developed than the arm. Physical therapy should note this. 'Thumb against the forefinger' is the same as using the thumb to hit fire on a video game controller. An inferior pincer grasp isn't good at picking up crumbs.


As far as gross motor I still am in a wheel chair. I do stand longer, but I discovered why I do not walk by looking at an old picture.

 
It is hard to walk with just one leg. See how one foot turns in? I'm barely putting any weight on it. I'm pushing to a stand with mostly my left leg. That means I need to work on my right. I can only bear weight on my left leg.

Speech has greatly improved. There is a short video, http://thoughtfulveg.blogspot.com/2014/02/hows-my-speech.html I will actually answer the phone now. My "No thank you" is understood. 

Self-help is faster, but there isn't any documentation to show. "Gosh, you're done already" isn't something I've tracked.

Social continues to not be an issue. For not being conscious, I sure have a lot of friends.

Cognition continues to skyrocket. I'm asked to remember trivial things for family members. I've become a memory storage file. Facts and concepts, I know quite a few. Rather than spit them out, I apply them. Much of my cognitive skill is seen in my writing.

Although I possess these cognitive skills, I am "decerebrate/decorticate" acording to my initial hospital transfer record. Some in my family reported they were told I was brain dead.

Oh yes, I also have a keen "faculty for observation and deduction."



I will think like this.