Monday, September 16, 2019

It Will Come


I looked like someone with Locked-In Syndrome 17 years ago. I've had continual progress. I talk and write now. I'm not Locked-In anymore. I probably look like someone who was Locked-In, but now types with one finger and has simple speech.

Progress would be neuroplasticity.

https://en.wikipedia.org/wiki/Neuroplasticity






















I've made slow progress  for the last 17 years. I don't look the same as the day that I had my stroke. That's neuroplasticity. I'd say that neurogenesis also had to be in there.




Recovery from the 'locked-in' syndrome.



Abstract

Four patients made substantial recovery following the locked-in syndrome of vascular origin. Clinical and radiologic features supported the presence of ventral pontine infarction secondary to basilar artery occlusion. Quadriplegia and mutism persisted for one to 12 weeks before recovery of motor function began. Improvement continued over several years. All patients regained functional though dysarthric speech. Three of the four patients are ambulatory, one without assistance. As a few patients make a notable recovery from the locked-in syndrome resulting from ventral pontine infarction, aggressive supportive therapy should be considered in the early months of the syndrome.




That's how I look now. I have made progress much slower, though. Talking took years to come. Some still use the word quadriplegia, but I now use one hand. You can't say tri-plegia as that doesn't exist.



I move all body parts. "Plegia" or paralysis doesn't fit. Quadriparesis is the better word I guess, although I am "tri." Quadriparesis is severe weakness in all limbs.

" locked-in syndrome resulting from ventral pontine infarction"- When I went to Santa Clara Valley Medical Rehabilitation, I heard a physical therapist aide describe that my bleed was in my cerebellum next to the pons. (I could only hear then.) Some know that the pons, "pontine infarction", is associated with Locked-In Syndrome. None of this was ever written down back then. I don't think my diagnosis could be changed.


_____________________

LOLLIPOPS


What I am doing with lollipops now is purely experimental.

The lollipop is specifically used in therapy. I do not get therapy.

Lollipop Swallow from Ed Steger, NFOSD President on Vimeo.

I actually do this every day. Sucking on lollipops isn't glamorous. Work is involved.

I also use the following device for specific exercises. More information on the PhagiaFlex can be found at https://www.alternativespeech.com/?fbclid=IwAR0sXlz-IUFuWDD3AMUtFYLq9f_9fN73JidgXPFEWN6AAc7MWnl5SAtn-Fo 






I practice swallowing because I drool when I speak.


There are quite a few pauses
due to drooling.

  I did not speak like this in the hospital. As you can see, though, I do speak. It came years later. I did have the beginning of speech in the hospital. Sound came 8-9 months after my bleed. I could get out a word for Stanford 2 years after my bleed.

Swallowing will be the same. How do I know? I have the beginnings of a swallow and I changed the environment.

When I opened my eyes, my swallowing was tested. Jello was used. It came out my nose and it was in the ventilator's tracheal tube. This is dangerous! It's also a weird coincidence as to why I am alive. That tube saved my life. Without it I would have aspirated the food all the way to my lungs and died. I've said no food orally ever since.

Lollipops are an interesting food. They flavor your saliva. You don't have to swallow anything extra. They are a good start in a swallowing program. This is what I used to change my environment. The brain adapts to its environment.  (*note- lollipops must remain in the mouth for 2 hours)

15 years after my bleed, Medicare stops sending the formula for my feeding tube. My  father gets them to agree to turn it back on if my swallowing is tested again.

I still don't swallow, so I'm still in a coma. The hospital speech therapist saw something different, though. I closed my airway when I swallowed. (Closing the airway must happen before any food is presented.)

I can have lollipops now.

I will swallow. I'm just on a yearly timeline.

 


 

Wednesday, September 4, 2019

What Do You Think?


If you are wondering why I'm still vegetative after all these years, my heart stopped, so I should die soon...17 yrs ago.

I was in a real coma 17 yrs ago.

My body is messed up; ultra stiff and it took  years to loosen up one hand to type.

Society has a 'let the government handle it' attitude.

The government is always right [yeah right] and won't back down. They said I was in a coma and darn it they're right! They've gone out of way to keep the word VEGETATIVE.








I want to know your thoughts. What do you think? I've tried to keep away from conspiracy theory, but this is going on so long now. I'm open to all suggestions. Please leave your opinions below in the comments. Keep comments clean; kids, media, etc. read these. I've made it easier to comment, but if it gets harder, I probably got death threats or something. Yes, that has happened in the past.





Tuesday, August 27, 2019

Are You Smarter?

.
My father asked if I was smarter. He already knew I was smart. -Angela


I know people click on "Phenomenal Recovery"  looking for reference to me. 


There is some but not a lot. It's more about that woman, Kate Allatt, in the second video. She had full recovery of speech and ambulation when it was thought that a stroke left her in a coma. She ended up being diagnosed as Locked-In Syndrome. 

If I was diagnosed Locked-In Syndrome, I might also be saying the same. I wasn't though. I was given vegetative, PVS. 

Some playing around with diagnosis has happened and I am now semi-vegetative. "Semi" takes care of this talking thing.

I don't say I've had a phenomenal recovery. I'm not done recovering yet. My diagnosis is still "vegetative." I know it has been 17 years since my stroke, but I continue to make progress.        



He continues to improve.





The person above had a brain injury, does something amazing, and continues to have progress.  Those same criteria fit me. This man has savant syndrome, though.



Savant syndrome wasn't ever a recognized disorder in the scholarly community. You can't look it up in the DSM or any other diagnostic manual. However, it was recognized in the media.




In 1988, the movie Rain Man was released
about a man with Autism who had 
Savant Syndrome.



I do something different. I talk, write, and get better. Talking and writing don't sound amazing until I tell you that I am in a coma. I'm vegetative, so it's a coma with my eyes open.

That doesn't sound right. It isn't. 

People don't talk in comas. What was thought to be a coma was really a pseudo-coma. No wonder why that woman was reclassified as Locked-In Syndrome.

There may have been a coma start. At some point there is transition to a pseudo-coma. In blind and low-vision persons there is no eye gaze. I am low vision.


He says to use eye gaze.


________________________

I don't talk and write in a coma, giving me Savant Syndrome, Acquired. People are amazed that I am so smart, though.

I already was smart! 

I left high school when I was 16 and started college. I got my AA at age 18 when my peers graduated from high school. The following year I got my BA.

This is interesting, as in woo-woo.  My BA is in Psychology and I use it. I know diagnoses. Here's more woo. At 24 I got an MA in Early Childhood Special Education. I specifically worked with the child who had my current problem.



________________



I will go on to say yes, Savant Syndrome, but it is congenital. The cause of my brain bleed was congenital and it is very possible that it bled in utero while my mother was pregnant.





________________






Talking and writing are splinter skills.








The bleed wiped out everything. Development was done again. 



Two years after my stroke, my playground was cleared out and cleaned. I had neural repair surgery. My cerebellum was damaged in the prior bleed and it was cleaned and cleared of all damage. I played and grew on my new playground. 



Brain growth had to happen all over again. There was a second development, but it started with the splinter skills of the typical child development. It used what was already there.



Talking and writing are left over from the first time (development). As I remember, test scores on an annual achievement test were in the 99th percentile for verbal and non-verbal. The test also covered quantitative and spatial. These scores were high, but not as high. The first two were my strengths. (I don't know how far back CAT testing is saved, but scores come from there.)



"Savant syndrome, both in the congenital and acquired types, provides compelling evidence of remarkable brain plasticity"

This is that getting better I do. Here's your Savant Syndrome.

Talking and writing is where current savant syndrome will and somewhat has occurred. Is it possible to see how much brain growth has occurred since surgery? This may be beyond current scanning methods. This will let you know, though, if there is anything left to expect.

This is introspective. It has to go to a trained and licensed professional. It is officially written that I am vegetative. I am currently in a coma and can have no influence on my current diagnosis.

Am I smarter? I could be, but I don't feel it.






Saturday, August 10, 2019

Late Night Comment


It's a new day. I slept and my batteries recharged. I can write again.

I had commented on a post. Someone had replied, but I didn't get it. It was late and I couldn't type anymore. I remembered the comment line allowed a picture "or a video." I'd just record what I wanted to say.


The comment line uploaded but wouldn't post. I finally gave up and posted "?".

My original comment was, 
I have a report that says I'm brain dead.



Lights are off and
I use a table lamp.





Thursday, August 8, 2019

We Were Blinded By The Light


This is the whole movie on Dannion Brinkley, but I have it open at a particular part. 

"The light is killing my eyes."
"Here take these." The  attendant hands Dannion his sunglasses.

I've never seen this issue addressed anywhere else. Bright light also bothers my eyes.

I've always left it to being blind in my right eye, but something else may be going on. I'm not blind anymore. So like I said, it may be something else.

______________________

When you die, people will expect you to be some kind of "swami." 

This man was blessed with seeing the future. This excerpt is from the movie "Saved By the Light." It is based on a true story.





I don't exactly fit in. What you are reading technically isn't possible. A vegetative person can't write. (A Locked-In person can. You see the error. Being Locked-In and doing this would be strange but not paranormal.) I'm magic.

I don't know what to call "smelling the cookies before the package is open." It isn't "swami."

I can be going to the right just like everyone else. All of a sudden, I go left. I was blinded by the light.




Saturday, July 27, 2019

I'll Say Congenital

Most know that I had a devastating  stroke, but I now write.  I can do other typical, and not so typical, things after the stroke. The things are amazing. What I am about to write is amazing. A person might say Savant Syndrome is involved. That disorder was never confirmed in diagnostic manuals.

My current diagnosis is "Semi-Vegetative." Vegetative is basically a coma, but the eyes are open. In my case, "Semi" was added when I started saying words. So, I am writing to you while I am in a coma.


Writing while being in a coma is amazing! Someone goofed long ago. I say long ago because the disorder Savant Syndrome was proposed long ago. It wasn't approved. A person with a disability could do something way beyond skill level. Now medicine is better. Something as menial as writing is astonishing when performed by someone "saved."

I once was in a full coma. That was years  ago. I was slow to open my eyes. That warranted the word 'vegetative.' Speaking, as I do now, does not.

I, and others, have disagreed with the government's diagnosis. I am in a pseudo-coma by their standards (which is currently not swallowing barium). Locked-In Syndrome is the appropriate name. My speech continues to be about simpler things, and writing contains more complicated ideas. I have noticed some change on video, so this is coming.


Writing occurs after a stroke, which can lead one to believe Savant Syndrome, Acquired.




You can acquire Savant Syndrome from a brain injury or CNS incident. I had a stroke and a car accident. This is the acquired form. There is another form. Some are born with Savant Syndrome. In this case the disorder is congenital.



I had my mother describe to me my early development. "...you had a foot that was more dominant and one foot that turned and dragged. You had to have a special shoe." It goes on. "Also your eyes didn't focus well and one eye drifted. You also used to bang your head on the wall purposely," Myra Metz.



That's a special needs child being described. There was a previous brain bleed. I hold a degree in Early Childhood Special Education. I ran a home-visiting program just for this type of baby. Identifying the special needs child is second nature.



_____________________


Growing up, I'd hear the horror stories of my birth.


My mother died during labor and had an out of body experience. Forceps had to be used to pull me out. If you never heard of these things, they were these giant salad tong things invented to grab and pull a baby out of the birth canal. These things aren't widely used anymore. There were too many complications. My mother now suspects these things in creating the AVM anomaly in my head that bled 32 years later.



"You were born much too early." I am almost 50 and still hearing about it. "You were induced."



Then it clicked. That description of my early childhood was of a baby that had a CNS incident. I was induced, most likely due to fetal distress. Doctors didn't tell patients crap back then. Of course it was a horror story. 

If those forceps had caused the AVM in my head, there also would have been gore and I wouldn't be here to hear the story. Forceps would have had to squash my head nearly flat to create an AVM that deep. Sorry Mom, but the AVM was already there. They are congenital. It would also be the cause of your pain. Bleeding caused fetal distress and set off your whole cataclysm of events.



Everything resolved nicely. I went on to play piano, and then excelled academically. Now I had a stroke and am writing in a coma. This last sentence doesn't sound right. Maybe Savant Syndrome should have been made a disorder.