Monday, May 4, 2015

False Despair

Yahoo asked if one would rather live in false hope or false despair. The top answer... "If those are the only two choices, probably false hope. But don't get too down on self delusion. Research has shown that part of the reason that the best athletes are so successful is because the[y] believe that they are indestructible. If you believe that you can do anything, there is a good chance that you will be able to do more than someone who knows his or her limits." ( ...The title? Can't Damage Me )

I have been afraid of giving false hope. In an age where I shouldn't have recovery, I am. It makes you wonder...why? It shows, though, that recovery is possible. It's not easy. I didn't take some magic pill.

The idea the brain couldn't heal took over. It's called neurological nihilism. We see it in the way a brain injury is treated. "... left hospital in a wheelchair with the neurologist warning he could expect no further significant gains." Doctors were giving despair.

I can say this is not true. On paper I am still not conscious. (That one will have to be fixed, but there's now a mess of problems to go with it.) This despair that was being given was false.

So there was a feeling nothing could be done. Doctors gave this feeling to their patients through the prognosis. There was nothing you could do, so a patient and family do nothing. A false despair is given to patients and families and nothing is done.

I saw differently. I saw change. I worked with children for so long. Kids change. You couldn't give them a set prognosis because they could show you that you that you were close or terribly wrong. Way before children, I spent a short stint on adult remediation. Adults could still do the changes kids did, but it was harder and slower.

I go back to the false hope I'm so afraid of giving people. I do give hope, but it is not false. I want to say it could be unrealistic, though. If you do nothing (absolutely nothing but wish) then don't expect any changes. You gotta do something,
This hope is a lot better than the despair. It's not false. It's just hard to come by.


Wednesday, April 22, 2015

Tracking My Development (nobody else has)

"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."

It has taken me 12 years to get my hands moving to be seen. That's 12 years of research wasted! My right hand is still not great, but movement can be seen and discerned.

There has been order. Development closely follows the progression of childhood development. Skills may be attained fast or slow, though. When I say slow, that could be years. I believe that has to do with neural wiring available. Working on a skill creates wiring. So this process can take as long as a person takes to grow.

The left hand is the hand I am using to type. I used marbles to mostly get to what you are seeing. In the hospital, the over-bed table had a compartment tray. The activity nurse had a container of marbles in her closet. She put some marbles in a compartment on the tray. I'd move those marbles one by one to another compartment. An Occupation Therapist would know I was doing tactile exercise.

You can see that my right hand is coming along. I'm in no hurry, though. Right now it is able to move and is consistent. Next would be grasping objects. I do this a little bit now, but want to get better.

What you see now is typed with my left index finger. I use assistive technology on the computer, as in making capital letters. After arms might be legs, but I don't get physical therapy. I do what I can. That is more than nothing, but progress is slow. Walking will come eventually. A Physical Therapist would do it faster.

My speech wasn't tracked at all. I went from making sounds with private insurance to fully talking now? That area is weak. Talking fully came mostly in the hospital and nursing homes. I was a Medicaid patient there and did not receive any speech therapy. I'm now Medicare and continue not to receive any therapy. My speech will continue to get better, though, because I made environmental changes years ago. (Basically use my words...I gave up my communication board.)

I am going through all the steps of development. It's a pity it is not tracked. The government now says I'm in a coma, so I can't be followed. I don't think people are so gullible as to fall for that one. I don't look like I'm in a coma. 

I do my best to note everything I go through now, but there are gaps. There was absolutely nothing from 2002-2009. 2002 is when this started and 2009 is when this was published in a magazine The rest can be followed on here. 

(I haven't even addressed the cognitive area. I don't want to even go there. This has mostly been physical. Like I said before, I had to get my arm going so I could express my thoughts.)


Sunday, April 12, 2015

50 + 50

When I was little, my cousins called me Doogie Howser.

I already had the beginnings of genius, that first 50 in the 50 + 50. Pull-out in school started in the 4th grade. I was sent to the 6th grade for reading. Before that it was piano. I had heard people say "prodigy."

I moved when I was 15. I tried one high school and didn't like it. I started the next school year at a neighboring town's school. My school records had been lost, though. I was pissed. I took the test in December to get out of high school.

I started at the community college while still 16 right before my birthday. I had an AA by 18. That was in Business, but you will see I lacked focus. By age 19, I had a BA in Psychology. (Two different degrees during my undergraduate years- that's lack of focus!) I got my MA at 24 in yet a third area, Special Education. Degrees in three different areas shows I wasn't focused. The first change can be common, but to do it again? I didn't know what I wanted or where I was going.


That above video is long, but I took something away from it...a prodigy alone does not make a genius. Something else is needed...grit, or focus plus drive and determination.

"Grit is a personality trait which is encompassed by a passion and resilience to achieve one's goals. Overcoming obstacles and hardiness are also components of this personality trait. A gritty personality could also be described as ambitious, tenacious, and having perseverance. High achievers and successful people who have overcome obstacles are often described as having grit especially if they come from humble origins." I would say that nearly being dead is a humble origin.
I became focused on myself when I had a severe brain injury. All that knowledge and skill were going there. This is where I probably get the second 50 in 50 + 50. I actually made a conscious decision to use existing knowledge and skills when I got out of the hospital. Only my family seemed to be aware of those skills.

My first caregiver was terrible with math. She needed to do her timesheets. I didn't have a calculator, and I couldn't use pen and paper. I figured her timesheets in my head.

I thought...for a brain injured person to get out of the hospital and live on his or her own, they will need a photographic memory and have excellent math skills. They will have to be a genius!


Sunday, April 5, 2015

Hand Development

Less than a year ago I could press a button with my paralyzed hand. I documented it with a picture. Now I do more, and I document it with a video.

Certain signs are hard for me to do because some fingers are still wired together, neurons that fire together wire together, For example, my pinky is wired to my ring finger. When I make the 'W' sign (three fingers up) I have to use my other hand to hold my pinky down. Wiring together is temporary. As further wiring occurs, fingers individuate.

For the most part, my ring finger and middle finger aren't wired together anymore. Finger individuation is possible. Any difficulties I refer to an OT. The Occupational Therapist can work next skills to be learned.
This next picture clearly shows my right hand as fisted. My fingers were wired together.

My fingers didn't stay wired together, but there is a great deal of time from the first picture to the video.

I make progression, but it is slow. I am still unconscious on paper, and this should be updated.

Friday, March 27, 2015

Healing the Brain, Naturally

More recently, evidence has been amassed by researchers showing that the human brain has "a significant, albeit limited" ability to repair itself both physically and functionally, including:
  • Angiogenesis - the creation of new blood vessels.
  • Neurogenesis - the formation of new nerve cells.
  • Oligodendrogenesis - the development of several types of cells including those that make up the myelin sheath, a protective coating on parts of nerves.
  • Axonal sprouting - the process of in which undamaged axons, threadlike parts of nerve cells that carry signals to other cells, grow new nerve endings to relink damaged neurons

All of the tagged processes have been seen in me. Savant Syndrome becomes a huge magnifying glass. Think about it... I should be dead. I got close to death, but progressed to coma. I opened my eyes and was vegetative. There was more progression that combined with the Medicaid Shuffle (the constant moving of Medicaid patients who are medically fragile). I was reclassified as "semi-vegetative" at the final hospital in my shuffle. The term isn't recommended but was used. I must have progressed more in order to not be hospitalized.


I'm not diagnosed as having savant syndrome, though. Whoever does that might have one heck of a time (semantics really). In the meantime I'm doing amazing things...and I'm unconscious.

"Oligodendrogenesis - the development of several types of cells including those that make up the myelin sheath, a protective coating on parts of nerves" is seen in the following:  "Think of all those miles and miles of myelin sheath Ms. Ronson had to laboriously re-knit to heal and reconnect her severely damaged brain." Isn't "Oligodendrogenesis" everything? Those "miles and miles" would be everything.

I'm not receiving any medication. So don't look there. I'm doing the same therapy exercises I started years ago. I've modified them with time and have made changes. Look there. Also look at the original injury and the original surgery. Later surgical procedures were life prolonging. I'd be dead by now without them. We are looking at the effect of the original surgery now. The cause happened years earlier and needed nurturing and care in order to grow. (The medication I talked about earlier only supports nerve growth. It doesn't grow the nerves.)

Nurturing and care would be on-going medical care, proper nutrition/nutrients and hydration, and exercise. I will need on-going medical care until I'm dead. Just because I'm not in the hospital doesn't mean I don't get proper care. I'm doing alright at home. I should have gotten follow-up neurological care following the brain surgery. I've had faith and gambled on that one. 

Proper nutrition isn't hard for me. I have a feeding tube and rely on commercially prepared formula. I will say, though, if the person has eyes open and a history of reflux or heavy antacid use, use a flavored formula. I have hydration in there because formula alone was only enough water to keep me alive. I always had chapped lips where extra water wasn't given. It caused other problems as well.

Finally, I talk about exercise. I set up something on it, . Your local out-patient rehab can help you put something together that is personalized for you. This helps them. They most likely cannot provide on-going therapy (if that is available to you, take it!) However, they would be able to check the exercises you do yearly.

Exercise is a key ingredient. The bleed was stopped. My body was brought to health (and maintained there). Exercise is the third piece needed. "The nerve fibers from the cells were severed, but the cells themselves remained intact." Nerve cells that have not died can form new connections." 
Exercises (therapeutic not aerobic) help form the needed connections.

A healthy body isn't enough. Sure you look fine, but how are you really? You have to be able to do it, also.

Friday, March 20, 2015

Learning: Making A Neural Pathway Part II

In writing this I was looking for an answer to why some people recover faster after a brain injury than other people. I believe the answer is neural pathways available.

Rewiring (quickly) seems to mostly happen in the first year (it's not over there. so don't worry). Existing neural pathways are recruited. This accounts for those people who seem to recover quick.

Then there is long-term rewiring, This can feel like forever to a person. The neural pathway doesn't exist. So the brain makes one.

This process is similar to learning, if not the same.


I'm not recovering fast. I'm learning fast.

Friday, March 13, 2015

A Very Smart Vegetable

I find this situation funny. PVS is a serious disorder. To say I'm not aware of my surroundings takes away from that.  "I really don't think there ever was PVS" I appeared PVS, though. "A persistent vegetative state is a disorder of consciousness in which patients with severe brain damage are in a state of partial arousal rather than true awareness." I was not conscious as perceived by the diagnosing physician.The diagnosis was true then, but not permanent. I was not misdiagnosed. There wasn't human error.

"What, neurologically, makes a savant?What happens is that there is an injury to one part of the brain—most often the left hemisphere. And there is what I called a recruitment of still-intact brain tissue elsewhere. The brain seeks to correct the imbalance and will find an undamaged area, most often in the right hemisphere. There is then rewiring to that new area, and then there is the release of dormant potential, which can be at sometimes an astronomical level. So it's the three R's: recruitment of still-intact tissue, rewiring, and the release of whatever capacity is there."

When I woke from a coma, getting skills was slow. I eventually used my left arm to propel a manual wheel chair. By this time, I had been deemed PVS. Time constraints make the status permanent. "This diagnosis is classified as a permanent vegetative state (PVS) some months after a non-traumatic brain injury (3 months in the US)."
Now, me using that left arm means I still had right hemisphere. Of note, I am using my left index finger to type this.

The right side of the brain controls muscles on the left side of the body and the left side of the brain controls muscles on the right side of the body

My primary diagnosis says I am not conscious. Anything added thereafter would still be not conscious. If something like Savant Syndrome is added now, I am still unconscious and become a very smart vegetable.