Bleeding Blood

UPDATED 9-10-.2020

I was bleeding blood.

I bled so much that I required a transfusion. It was a closed wound injury, so blood was never seen.  I just know it ran down my neck.  I must have passed it.  I was in a coma and did not see.

"Blood ran down your neck,"  I heard. This is unusual. In a brain bleed, pressure builds, the brain is smashed down (it blocks the neck), and with enough blood, the person dies. There is no escape of blood. It drowns surrounding tissue.

______________________

There's a bad brain bleed; stroke. The  person is almost dead. There's a blood vessel defect. Some time passes and there is another bleed. The person passes away this time.

I'm the first sentence. I then broke the cycle. I found a place that would repair damage and remove the defect. Stanford did it and no one else. There wasn't another bleed. I wouldn't die from that.

I was in a coma. As far as I know, the time that I had my eyes closed and it appeared that I slept for over a month, I was in a coma.

I disagree with the diagnosis/ possible diagnoses that were given to me after I opened my eyes.

________________________

https://www.psychologytoday.com/blog/concussion-is-brain-injury/201907/why-do-we-call-it-vegetative-state

I have said that I am functioning between the people in the videos in this article. Click it. It talks about me. 

_______________________

I am functioning between the following two people who had Locked-In Syndrome. First is Martin Pistorius aka 'ghost boy.' He had a neurological disorder of unknown  origin. 

People had no clue that he was in there.

At the other end of my spectrum is Kate Allatt. She speaks now.

Kate Allatt is a mother-of-three from Sheffield, South Yorkshire, who has successfully recovered from locked-in syndrome. She now runs Fighting Strokes and devotes her life to assisting those who have locked-in syndrome. 

https://en.wikipedia.org/wiki/List_of_people_with_locked-in_syndrome

The lady found me. I'm honored. I don't speak as well, but aim to.


Do you remember that bleed? It was "in the cerebellum next to the pons." I remembered hearing that in rehab. A pontine infarction is associated with Locked-In Syndrome. I bet this is when that rehab referred to Stanford. This was rare. Even more rare is now. I'm not Locked-In anymore.

From browser:

A pontine cerebrovascular accident (also known as a pontine CVA or pontine stroke) is a type of ischemic stroke that affects the pons region of the brain stem. A pontine stroke can be particularly devastating and may lead to paralysis and the rare condition known as Locked-in Syndrome (LiS).Feb 6, 2019

Pontine Stroke: Causes, Symptoms, and Treatments | Saebo

_________________________

It feels like a hundred years. Actually, it will only be 18 years in December since I had the stroke. It has now been 16 years since I had the surgery that saved my life. It did a little 
more than save my life. I now write this. 

I'd call the surgery process biological engineering. It was at the blood vessel level. Genetic engineering gets even smaller. It's at the DNA level.

 

"... it will be a slow  process, because one will have to wait about 18 years to see... changes" - Stephen Hawking

This part of the quote struck me. That's close to the time.  I thought. I didn't have genetic editing.

The AVM was a vascular disorder (blood vessel). It wasn't genetic. It was in the brain, though. It would take the same time.

My DNA was not outright changed, but it  looks like that happened. How can I tell? My hair changed. I haven't  used any chemicals on my hair. It became curly on its own.

I recently became aware that the act of dying itself can be a DNA changer.

My thoughts have been turned toward life.

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.

McCusker EA, Rudick RA, Honch GW, Griggs RC. 

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.

 https://www.ncbi.nlm.nih.gov/pubmed/7065931

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.

 

 

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.

My Set Up

My set up...

When I opened my eyes almost two months after a stroke, a machine was breathing for me. I did not breathe on my own.

I did not speak, either.

Like the man in that video above, I could only blink my left eye. "On 8 December 1995 at the age of 43, [Jean-Dominiqe] Bauby suffered a major stroke. When he woke up twenty days later, he found he was entirely speechless; he could only blink his left eyelid. Called locked-in syndrome, this is a condition wherein the mental faculties remain intact but most of the body is paralyzed. In Bauby's case, his mouth, arms, and legs were paralyzed, and he lost 27 kilograms (60 lb) in the first 20 weeks after his stroke,". https://en.wikipedia.org/wiki/Jean-Dominique_Bauby

I'm alive at home and no one knows how. 1. I got off that machine. 2. I learned my medical care. 3. I became vocal, just a few words. 4. I convinced a doctor to let me die at home. I didn't die, though. I've been slowly getting better. (I had an experimental surgery at an independent hospital addressing my impending death.) _____________________ 

It's not possible that I have any genetic links to this person, Jean-Dominique Bauby. He is a few years younger than my father and died a few years before my stroke. I never knew of his case until years after my stroke. Genetic Memory can not be involved in this instance. What can be spooky, though, may be even spookier in my case. I am familiar with Carl Jung's principals. One I wanted to know more about is connected to psychic activity, the Collective Unconscious. This is the spooky term. Genetic memories may not have been passed down to me. Rather, I picked up on other people's memories and knowledge. I knew what to do because they knew what to do.
_____________________

It will be strange. I started with an NDE, Near Death Experience. NDEs have been associated with miracle healings, but these have been much quicker. I've been getting better for years. Near Death Experiences are strange. They are not explainable. People who have had them have been called mentally ill. The NDE cannot be proved. People who say they have had them are skeptically looked at. My NDE is a bit different. Medical records must be used to determine near and actual death. Also due to my type of injury, I have little to no recollection of that particular instance. My current behavior, or outcomes, will have to determine what happened. This makes the NDE referable. I have no idea how far this slow progression will go.

Phenomenal Recovery

Locked-In Syndrome was considered 16 years ago, but I was already PVS, vegetative from 17 years ago. Nothing was written down so any "phenomenal recovery" for me is in the garbage. - Angela 9/18/2019

I  didn't want to use the word "oppression," but darn it that word fits. The term is used in disability often. I just viewed that Capitalism views disabled persons as surplus. I disagree. A useless person is surplus.

____________________________________________

"Phenomenal recovery"

I guess the same is happening here. This person found me. This is what's going on, except I have more knowledge and memory, and this is a completely different country.

____________________________________________

I am thinking that it is very possible for a person in PVS to slip into this rare disorder. That would explain the people in coma who are found to be aware. It is not known how far this goes. That is why there has been push for Brain-Computer Interface technology. For more on BCI, https://en.wikipedia.org/wiki/Brain–computer_interface

In the video, the woman describes her delusions. I thought my breathing treatments were poison. Not all treatments were bad. It was just one Respiratory Therapist in particular. I must have displayed distress as the doctor requested someone else. When that very same person came again, everyone was suspicious.

She mentions her children. Mine are my reason that I am alive. Now that they are adults, I can go on and do things like this. I've only become publicly vocal in the last few years after my youngest child's graduation from high school.

"This is a brain stem injury." Family were taught that when I was at the rehab facility. I had that will there, and I knew a lot of concepts. My BA is psychology, which is close. I lacked current medical terms and concepts. I now know about "neuroplasticity" and use the concept a lot.

She ends with "You don't know how happy I am to be unlocked." I still am in some ways. I guess oppressed is the better word.

oppress

[uh-pres]

---

verb (used with object)

to burden with cruel or unjust impositions or restraints; subject to a burdensome or harsh exercise of authority or power: a people oppressed by totalitarianism.

to lie heavily upon (the mind, a person, etc.): Care and sorrow oppressed them.

to weigh down, as sleep or weariness does.

Archaic . to put down; subdue or suppress.

Archaic . to press upon or against; crush.

https://www.dictionary.com/browse/oppressed

I'm still vegetative. Sure the government changed my diagnosis to "semi-vegetative" back in 2004, but I want to know which part of me is still vegetative. Is it when I am asleep? Vegetative is not conscious and I'm not conscious when I am sleeping.