Friday, April 18, 2014

We Have A Problem





First off, there's issue with "soul perfectly in tact, but can't get the words out." Isn't that aphasia? Maybe he's talking extreme. Isn't that Locked-In Syndrome (LIS)? LIS is documented. A movie was even made (subtitles are in English).








Here's the  bigger issue, though...I'm not conscious. What he says about damaging one part of the brain happened here. My parts are not only damaged,  but are dead. I was listening to a radio show once, and a doctor gave reference to me and said "80%." So 80% of my brain was dead. No one is sure why I woke up. Well now, regarding what this person above says, I'd like to think I still speak English.

I've previously explained what I thought happened. Another scan of my brain will have to be done. As it is now, I'm writing and giving commentary with enough brain to barely stay alive.

Tuesday, April 15, 2014

Plateaus Are Imaginary



"Two steps forward" is progression. A "step back" is a lull in development.


Long ago in my Master's training program, there was a guest lecturer. She was a therapist. She said when you reach a stall in development, a plateau, you work through it. Now this was a program for early intervention in special education. I didn't know the practice in some physical therapy was to stop if there was a lull in attaining developmental skills. Special education teachers can be working with the same student for years. There may be lulls in the student's development, but that's what makes it "special." A teacher doesn't quit working with a student because he or she doesn't learn.

Although development is slow, the student "gets it" eventually, so
metimes years later (the particular task worked on). Gosh, there probably was a lull at that moment in time when started, but it wasn't forever. The same can happen in brain injury. Prime example...me. My developmental skill progression was slow. Sure I had a lull in development at the beginning of my brain injury. "No Progress" is determined. I was placed with the vegetative. That is how I remain today.

Years later I am writing this. It wasn't "Wham! She can write." It's taken many years and I use accessibility features on the computer. I was published in 2009, http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20090708/index.php#/10/OnePage. My accident  was in 2002. There's just a lull right there in dates. I don't know of any rehab that lasts 9 years. A special ed teacher would last that long, though, and that is what I used to do. That's what I did when therapy ran out. No therapist showed me how to type. Accessibility is an area I used to cover. I've just applied techniques to myself.

Let's see what this document says http://braininjuryknow.blogspot.com/2013/04/getting-there.html. I directly quote an article,

"The nerve fibers from the cells were severed, but the cells themselves remained intact." Nerve cells that have not died can form new connections. It goes on to say, "The new research suggests that instead of the sudden recovery Wallis seemed to make when he began speaking and moving three years ago, he actually may have been slowly recovering all along, as nerves in his brain formed new connections at a glacial pace until enough were present to make a network."  http://usatoday30.usatoday.com/news/health/2006-07-03-brain-rewired_x.htm        

This thing was written a few years ago. How can anyone without that proper equipment determine there will be "No Progress"? A person would have to be able to see "nerve fibers from the cells." My eyes aren't that good, so I can't. From the way it read, this wasn't a regular MRI either. This was a few years ago, so I'm sure the technology is more widely available now. Still, though, to the naked eye, progress can't be determined.

I go on to reassure that rewiring can't be seen and may take years. With this research available then, why is it that people are still being told there will be no progress? The "plateau" isn't really there.

Saturday, April 12, 2014

My Hole





I have a hole in my neck...but I can breathe now so I don't mind. How did I get a hole? I couldn't breathe. I lost consciousness and I guess at some point a hole was cut into my neck to hook me to a machine to breathe, a ventilator.

Breathing has been such a big deal, but it has been treated as secondary. What good is anything (medication, medical procedures, or therapy) if the person being treated doesn't breathe?

I put some pictures together that show it has been a very  long time. Completely breathing on my own has been a long process. That process didn't end with me getting off a ventilator, but many years later. My lungs were finally able to get continuously off a machine. The tube may be left in, and mine was, in case machine hook up is needed. When the lungs are strong enough, the tube is removed.

This is where my hole comes from. Although I was removed from the breathing machine, the ventilator, the tube was left in my neck for years. When the tube finally comes out, the hole left behind will naturally close on its own. Mine didn't. The skin over it had to be surgically closed. I've been left with an indentation that slowly gets smaller over the years. Breathing treatments (I was frequently getting these) soon ended after closing the hole. I used an inhaler (like for asthma) for a few months after. Breathing issues now can just be handled by my regular doctor.



The above was taken at a birthday party. I got out of the hospital for the day. The picture below is just an enlargement of me. After the party I returned to the hospital. I was placed back on the ventilator.  I was  not all the way weaned from it yet. This third picture is the same day and you can see my arms. Besides the IV bruises, I have hospital arm bands on. These pictures were 2003

____________________



This is in 2006 before I got out of the hospital. The hole in my neck was just closed. Prior to that it was open and I could breathe through it. The tube had been out a year, leaving an open hole. I used that open hole for breathing.
____________________



This was my profile pic at WeAreTBI.com. That was 2009. You can see the hole is closed and healed.

____________________



In 2013 you can see the hole has gotten smaller. At this rate, I will have a hole a while. Eventually it will become a scar.



Sunday, March 30, 2014

The Medicaid Shuffle



"A Canadian man who was thought to have been in a persistent vegetative state for more than a decade has been able to communicate to scientists that he isn’t in any pain." http://scitechdaily.com/canadian-man-in-vegetative-state-communicates-that-hes-not-in-pain/  

Now imagine someone like this with a very rare disorder that makes the brain injury go the other way. The person gets smarter. The person is so smart, that she figures out how to move a finger and she can now type. (Savant Syndrome) That's all I can figure that happened to me.





Nothing like this ever happened before, yet I am writing this. The above video is the closest I could find to an explanation. Yes, I am still unconscious and in a coma. Comas can be eyes open. "Vegetative" is a coma, and I am vegetative. People are amazed when I tell them. Doctors stare at me. My medical records reflect that I am vegetative.

Supposedly my brain was all wiped out by a brain bleed. I only had some brainstem allowing a heartbeat. I didn't even have a full brainstem! I couldn't breathe and was on a ventilator. There's a big hole in my neck now that is slowly getting smaller now that I breathe. I wasn't ever supposed to talk. I do now and that's getting better as it wasn't understandable. As for writing this? Amazing is all I can say,

All of that didn't stop my bills. I couldn't believe the misconceptions I've seen. Since I opened my eyes, but I am still in a coma, I can tell you what happens to bills and whatnot. 

I was employed at the time of accident, so I had insurance. It was very good insurance, too. (If a person does not have insurance, there is a way to get government assistance,  but it may not cover everything.) Medical insurance from your employer takes care of medical bills while you are employed.

If you don't go to work, you don't stay employed. Although I technically wasn't conscious and couldn't talk, I had long periods of lucidity where I could communicate with my mother by blinking. The doctor sent a letter to Social Security. Social Security suspended my payee so I could pay my hospital bills myself. The payee was slow and usually late. Social Security left me unconscious. Hospital bills are immediate. Bills don't stop while you are in a coma. I had good insurance that I didn't want to lose since I couldn't go to work. I kept it under COBRA and was forced to forgo all of my other bills. COBRA is expensive.

Eventually the private insurance ran out. The hospital I was at moved me to a Medicaid bed. (The bed was actually called that!) I waited in that bed until I was moved out of that hospital. Initially I was sent to a care home that wasn't near family. That place sent me to another home a few months later. I was at the second home a few months and then ended up back in the hospital I started in. I call this moving the "Medicaid Shuffle."

Mind you I'm still technically unconscious. I could say most words by then. So I'm unconscious and talking...and could pay my bills. This second time that I was placed, that hospital sent me to a "Sub-acute Hospital" which was nothing more than a large nursing home. I was doing the Medicaid Shuffle. This is how long-term disability is dealt with by the government in my case. 

A few months later  I ended up in a different hospital with dehydration. I was lucky I didn't die. That hospital fixed me up and filed some sort of complaint. I went back, someone from the state came and asked me questions. I was moved while I had surgery at yet another hospital.

That next hospital placement lasted a little over a year. It was a long-term sub-acute unit at a (real) hospital. Medicaid does not pay enough. The hospital had to close that unit. I didn't want to continue doing the Medicaid Shuffle. All the residents were being moved to nursing homes. There was an option for a family member to sign you out. I managed to do that. I left that hospital unconscious, and that is how I remain.

Now I live in my own home. I got back custody of my kids and finished raising them. I sometimes talk on the phone and I pay my bills. I can mostly dress myself and depend on someone to hook up my feeding tube, place me in a wheel chair, and do routine household chores. I'm still unconscious and the state retains the right to place me in a nursing home.

Monday, March 17, 2014

Tears of an Angel








I do it for the angels who cry. A tear is usually caused by something, something bad a lot of times. It usually takes knowing. A single tear is different from the eyes watering. There isn't an irritant to the eye. I used much of the following when filling out a form:



Briefly describe your issue and include specific information (dates, places, who was involved, etc.)


I had a severe brain bleed. It was a bleeding stroke, or AVM stroke. The bleeding in my head wasn't stopped for hours. By the time it was, I ended up in a coma. When I opened my eyes, I was first determined brain dead, then vegetative. This gives commentary and a newspaper article,  http://thoughtfulveg.blogspot.com/2012/02/angela.html
 
I'm a vegetable and not conscious.



What have you done to
address this issue? (i.e., filed formal complaint/grievance, exhausted
administrative remedies, contacted involved individuals, etc.)


The first thing that happened was in the second hospital, http://thoughtfulveg.blogspot.com/2012/11/competent.html

I contacted OCR, the Office of Civil Rights. http://thoughtfulveg.blogspot.com/2013/01/regrettably-matters-you-raise-in-your.html (E-mail with OCR is at the end.) It wasn't civil rights (they said) and they referred me to CMS,
the Centers for Medicare and Medicaid Services. The CMS e-mails are attached to http://thoughtfulveg.blogspot.com/2013/02/im-still-vegetablethat-handles-money.html CMS was awful because I had to do a letter.

Basically, it's okay to be a vegetable on your own as long as you don't get into trouble. They still reserve the right to take me from my home and put me in care.



What would you like [us] to do for you?


I would like to stay in my home. I don't want to be scared to go to the ER.

"Far too often, patients ... are given up for gone, left to
languish in nursing homes where no one bothers with physical therapy or even to check for glimmers of regained consciousness." http://thoughtfulveg.blogspot.com/2013/08/you-better-notice-me-now.html I was one of these people. I probably have a rare disorder allowing me to communicate. I do this because I can and there are a few who can't. I've had to listen to a roommate cry when her mother left. No one can tell me that's not consciousness.






 
The girl pictured above is Shea Shaw.


Her website is http://www.angelsforshea.com/  She can also be found on Facebook, https://www.facebook.com/AngelsforShea  I initially saw pictures of her BEFORE her eyes opened. She is on a very slow track also. 

Friday, March 14, 2014

My Death Bed




I have a semi-automatic hospital bed. It's much like the one pictured above. I have the short rails on mine. It came from a medical supply. The  hospital I was at before I came home ordered it for me. Beds are usually ordered for patients through a hospital or hospice. I guess a doctor's office can do it. The patient goes home and dies, usually. The bed goes back to the company. It then goes to the next patient going home.

These are death beds!

Once in a while a patient doesn't die. I was one of these. Long ago I got a notice from Medicare. They had been paying monthly rental on my bed. I hadn't died so they purchased it. I outright owned a hospital bed!


A year ago, the rail on the bed came off. I had someone call the medical supply company to get it fixed. The medical supply didn't know what to do. A person usually dies and doesn't need the bed repaired. The company couldn't fix it...so they sent me a new bed. It was a brand new bed, still in plastic.

No one died in my new bed.

Monday, March 3, 2014

Understanding My Progression to Consciousness




I left the hospital as "semi-vegetative" so I remain "semi-vegetative." What is that? I looked. There's no such thing. I'm only guessing, but the term was coined to describe a high functioning vegetative person. The only difference between "semi-vegetative" and MCS (Minimally Conscious State) I can think of is that "semi-vegetative" starts as vegetative. Someone can't recover from being vegetative. This is what allows some people to be terminated. This happened in a high profile case.

That case is one reason why I left medical facilities. (I've said many times I am doing a medical independent living. I got out rather early, but I knew how to use medical supply companies. I was probably expected to die soon and this situation now wouldn't have occurred.) The feeding tube is why I contacted my local ACLU. It wasn't protected while I was in care. The ACLU in Florida represented a vegetative person there. I wanted to keep my right to eat.
 
No one factored savant syndrome happening in PVS (Persistent Vegetative State), or just "vegetative" as above. I most likely have this (Savant Syndrome, acquired form). The result has been a slow progression to consciousness. Also, there have been physical changes which I document in photos and video. You can't go from vegetative to semi-vegetative as I have and you can see why. Although I could still fit the definition physically, I don't mentally. It would have to go PVS to MCS. This then allows recovery of consciousness. If not, this whole thing was written by a vegetable.

As for my physical body..."vegetables" are not invested in. Therefor I do the best I can to provide therapy, as my therapy skills revolve around the infant. I push to a stand and my "R"s sound less like "W"s.


The way it stands now, I am not conscious. I started as vegetative, and remain that way. In the eyes of the law I have not recovered. I have been not conscious for a long time.