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.

Saturday, September 6, 2014

The Order of Coming Back

Cognitive was first...when my eyes were open. I already had hearing. Then was social. Next was fine motor. Just wiggling. It has taken lots of therapy to get to the movement seen. Speech followed. It was only sounds. Finally gross motor. I'm asked if I walk yet. This is the last thing, and I'm not there yet. I am also doing this myself, and am not a licensed Physical Therapist. Yes, I used to work on this with 2 year olds, but I'm not 2 anymore.

The "five senses" would be in the cognitive area. I'd have to think back since this all came back years ago. It wasn't a full come-back. It was gradual, and required some learning. Some of the beginnings were seen in the first few months, but would take months to develop. Even breathing was not immediate, http://thoughtfulveg.blogspot.com/2014/04/my-hole.html.

Hearing was definitely first. I could hear before my eyes were even open. Coma scales talk about lighter coma as it ends. This would be that. Vision is last. I was actually blind in my right eye and it was patched. (I'd wiggle that patch off. It gives credit to rewiring. The eye itself could see, but the brain couldn't make sense of the information.) Feeling came after hearing, just before movement on parts that could move. I couldn't feel a needle stick (ie. blood draw) on a paralyzed arm. Although I was NPO (no food by mouth), taste came back with smell. I have reflux and the formula put in me would come up in my mouth. It wasn't pleasant. Smell has been amazing. Since I was low vision, I could tell if a male nurse was working by his heavy cologne. He didn't even have to come in my room. My vision has since greatly improved, but my keen sense of smell remains.

I describe a process for re-learning smells, http://thoughtfulveg.blogspot.com/2012/10/breathe-deep_11.html . This is not covered in any therapy I know of. Occupational Therapy may have something under Sensory Integration, but it is not widely used.