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.

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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.

 

 

Time For Research

This post is primarily aimed at my local university.

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It all has to be figured out, but this is probably going on. A brain injury followed by giftedness is where this video is.
 

I'm writing and not doing the math that 
he is doing.

It's the ability and not the subject. 
 

My brain injury was a stroke. I was to die, but Stanford University did stereotactic radiosurgery. The dying thing didn't happen.  
 

I was A++ smart while growing up. I did piano and guitar and showed some congenital signs of the disorder in the video. That history, plus the stroke, plus the brain surgeries give you a talking vegetable that writes. (There's probably a name for this additional disorder.) The person here in this video does math as opposed to what I do.
 

The incredible thing I do right now is heal. It's slow. I'm still vegetative; my diagnosis is "semi-vegetative." Before I was semi-vegetative, I was all the way vegetative, or Persistent Vegetative State. I had neural repair brain surgery at Stanford University. The hospital where I resided after the surgery made my diagnosis "semi." That's it. I can't get anyone to take off "vegetative." That word is stuck to me.

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Why do I get better? What's going on? Don't even bother to ask the government. Years ago I told the doctor I think I am getting better. I am told that I am imagining it. This was a government program that wouldn't do research.

I went from not speaking to verbally reporting improvement. I am told that it is just my imagination.

Don't look to the government for any help.

I found one private resource that targets the science. There should be others. 

Clinical Neuroscience Research 
(This clicks.)

This one goes up to $300,000 over 3 years and should be enough to get research started. If more needs to be looked at, I'm sure it's there.

There is also a way to get local money. https://braininjuryknow.blogspot.com/2011/01/get-it.html (clicks)  I wrote this long ago for a mom in San Diego who needed a wheelchair van. I even have "van" in there. It was successful and the mom was on her local news.

Doners are a part. Send them pictures and reports to keep them informed. The government doesn't even have to be involved.

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The government says I am not conscious and that I am in an open-eye coma. I think they are wrong. The first thing to do is designate me as conscious. Then I can be studied. I believe neurogenesis is going on. Is it one long process, or am I stuck in a cycle of continuing neurogenesis? I'm saying neurogenesis because I didn't write like this before the stroke.

Scans will have to be done. I can't possibly be doing this all from my brainstem, which is all the government said I had left. Other brain will be proof of neurogenesis. It will also show where and what I am wiring to.

Yeah right, I am unconscious. What's all this? Are you also selling a bridge?

Space, time, what's your reality?

Neurogenic Tremor

Click for own window

This post was inadvertently deleted. I had saved a copy in my e-mail. Most likely this behavior had never been seen before in the situation presented and was being described.

I have and still do experience neurogenic tremors. Most notedly I will have clonus in my left leg. I'll be seated, I do not walk, and for no known reason, my leg starts bouncing. There is no pain.

I learned to "plant my heel", I'd press down on it. Sometimes repositioning my foot helped. It was too far out and the clonus started.

Note: I did not do any TRE, Tension or Trauma Release Exercises. My clonus came from waking up out of a coma.

What does it mean if you have clonus?

Clonus is a series of involuntary, rhythmic, muscular contractions and relaxations. Clonus is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases is, accompanied by spasticity (another form of hyperexcitability).

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

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I  had serious Post-Traumatic Stress, n I still do. Dying probably did that. This condition has yet to be diagnosed.

Sucking Lollipops for Neurogenesis

 I'm bombarding my brain again. "the brain is constantly bombarded with natural information, but in a way that the brain has to deal with it. " http://thoughtfulveg.blogspot.com/2011/08/neurogenic-therapy.html At that time, I did not know about neurogenesis. I also use this concept in https://thoughtfulveg.blogspot.com/2015/11/idea-to-open-eyes.html

This seems to be a natural thing with me, I present  the same information over and over. Going back in my work history, this was "infant stim" or developmental stimulation.

My guess at what is going on is that the brain is producing neurons that react to the stimulus that is presented. I'm saying that neurogenesis happens. It is the body's response to incoming, unfiltered information.

Neurogenesis makes the body's "filter."

 Present the stimulus over and over.

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"My idea has been simple. I just put a lollipop in my mouth. This changes the environment to include taste. All those taste receptors come alive." https://thoughtfulveg.blogspot.com/2018/12/making-me-swallow.html

The brain has to make sense of the information coming in. Taste receptors in my mouth were still there. My stroke didn't affect them. They were sending information to my brain. The stroke affected my brain. My brain had to develop a way to deal with the information.

Compared to the last video, I am 

speaking better.

The old blueprints of previous neurons were there. My brain produced new neurons to handle taste by using old instructions. It is now through growth that I am hoping for a detectable swallow, or... lollipops stimulated neurogenesis.

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2/9/2019

By putting those two lollipop videos together I can compare. Oh my! You can hear a big difference.The first video is 3/12/2017 and the second is 8/9/2018. I have not had any speech therapy.

 

Coming Back Deadpool Style

I feel like I'm Deadpool growing his hand back.

 

 
I have that general achy feeling after a car wreck, but only on one side of my body. There will also be specific pain from muscle use. For example, on the day I asked for ibuprofen, my right side torso hurt. Currently it is my right forearm. My right side was totally paralyzed from the stroke in 2002, but it started moving some after surgery in 2004. Today there is a lot of movement and it is almost typical function.

             

I'm not a salamander and I don't grow limbs back,

Somehow, my brain is back. I asked the home nurse to add some ibuprofen to my morning meds. Years ago, when regaining function of this hand that I type with, I would ask for Tylenol-3. I usually had a standing prescription. I was in the hospital and also had frequent pain in my head.

Rewiring, neuroplasticity, can have neurogenesis with it. Rewiring by itself means the wiring was already there. These are the people that recover in rehab.

But what about the miracle recoveries, sometimes years later? I believe that to be neurogenesis. The body had to grow the wiring before it could be wired. These miracle people were lucky to have the right environment or people. They might have had the right chemistry going on. Blood testing should regularly occur. There can be clues before a miracle.

All the pain meds I take... is this a clue?

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I'm brain dead. This busts me up laughing. Maybe, just maybe, I wasn't brain dead but brain wiring dead. I'd suppose that some of my brain was still alive. What was left, eventually got wired to; the bit of brain that was alive and not detected by eye was missed. I would think that if a scan was done now there would be evidence of a massive stroke. (See the importance of a scan?)

"Not detected by eye" shows the importance of a brain scan AFTER blood has cleared. A sponge may appear to be used up until it is wrung out. We can't wring out brains. We have to wait.

I did get a second scan. It was never accepted by the government because it was performed in conjunction with an experimental brain surgery at Stanford University. If I was brain dead, that university would have immediately gone to press. It would have made a huge discovery.

Stanford proceeded and the government program that I was in changed my diagnosis to "semi-vegetative." It was obvious by then I was not all the way vegetative. I stayed for another 1 1/2 years in the government program. When the particular unit I was in closed, I came home. The hospital and the government did not close. Funding ended. Other patients were picked up by other facilities. I was "semi-vegetative" and assumed to die. I was sent home.

If any attention had been given to that experimental surgery at Stanford, I would not die from a defect the government left in my head. No, I haven't died. A secondary condition (possibly savant syndrome) then also has to be looked at, because how could a disabled person verbally instruct others on how to do medical care?

MCS, Minimally Conscious State, would have been the proper diagnosis at that time. I've grown since then. It wouldn't fit now. No, there was misdiagnosis and now you have a monster. To that I say live with it.

Deadpool could be a hero or a monster.

Depends on who you are.

I am a hero or a monster.

 Depends on who you are. 

A Most Unusual Situation

No one has ever seen before what is happening in me. The best way I can describe it is that I am slowly getting better. When I say slowly, I mean years. I'm still disabled, but no longer require life-support.

I had an AVM Stroke December 2002. I should have died that day. Usually, most strokes don't kill a person, but mine was caused by a rather large, hemorrhaging Atrial Venous Malformation (AVM). This thing was daunting and bled for most of the day. It wasn't stopped until I was taken to a third hospital.
 

After the stroke, I was in a deep, eyes-closed coma. To say that this was pseudocoma may not be right. Latter stages may have been, but I doubt initially. I did not move at all, and I did not breathe on my own. My eyes were closed and I was unconscious to the world.

Upon opening my eyes, I still did not move or breathe on my own. I understood that  I had a blood clot in my head that didn't kill me all the way. Since I was unable to do anything, I discovered that I could turn my head to the side. It felt like it was all the way, but it may have only been half way. This latter was most likely. I remember turning my head side to side as fast as I could. I was intentionally trying to dislodge that blood clot in my head.

It must have been a partial turn, because it was noted that I was shaking my head. I was given the medication Celexa and I stopped. Unknown to others, I was already familiar with this particular medication. I was a behavior specialist. This medication would work on behavior, not spasms. Shaking my head was intentional. I was not unconscious. This is why Celexa worked.

I had been made PVS, Persistent Vegetative State. This is unconscious. This just extended my eyes-closed coma. This diagnosis was wrong.

The rehab I was at went on to get all of my left-side body parts to move. The movements were not strong, but they moved. The rehab suspected Locked-In Syndrome. This would have been Incomplete Locked-In Syndrome, as there was some movement.

The diagnosis should have been Locked-In Syndrome, Incomplete. There is some movement with the Incomplete form. This disorder is conscious.

I was completely weaned from a ventilator. That was a big deal. It had previously been done with brain injury, but those were done within weeks of the incident. Mine was many months later. Usually by then, deficits were thought to be permanent.

Before I left the rehab, I had started vocalizing. I got a couple of good speech therapy sessions. Medicaid/Medicare does not pay for speech.  I had done general special education, so I was familiar with techniques but I was not a speech therapist. I would be switching to Medicaid.

After leaving the rehab, I was transferred to the other end of the state, Southern California, and was placed in a nursing home for quadriplegics who were very independent. That rehab had gotten my left arm moving and this new nursing home wasn't sure what to do about that so they ignored it.

I started to move my right hand after a month or so. I was discouraged and told not to move it. I later found out that my mother was lectured on how the home was paid for the residents to be disabled. I couldn't start moving my right side.

This is important. Nursing homes are financially set up for a person to have deficits. The more the better. Nursing homes are not paid for a person to get better. As a business, it's residents need to fail. A person goes to a nursing home to die. There will be exceptions, but a majority will follow this concept.

I had been using a communication board at the rehab. It's just a simple laminated piece of paper with the alphabet in large print. I've seen pictures used for children not reading, so this wasn't anything new. I gave up my board when I went to the nursing home. I had started vocalizing and I was going to learn how to speak like those who do total immersion when they move to a new country and have to learn a new language. (Sorry dear government that I don't swallow, but you didn't give me speech.)

I moved back to Northern California. I had surgery in 2004 to remove the blood clot in my head, the AVM. I immediately noticed that I was speaking and moving easier. To me, a barrier had been removed. Others may not have noticed but I did.

The surgeon explained that I would not see immediate improvement. This was a learning thing. He only cleaned up my brain. He only made the playground neat and orderly. It was up to me to play. (These are my words. I like to describe learning as play.)

"You are probably seeing neurogenesis. It's not a one time thing and it's done. It's a process. It's more like repeated neuroplasticity. In me it has lasted years." Neurogenesis Is A Process
 

That doctor at Stanford who did the last brain surgery didn't know my prior development. For me learning might as well have been play. The NDE, Near Death Experience, had put my body back in learning mode. THIS IS ONLY MY INTERPRETATION. (I refer to "Undead Genes" turning on at death. http://reallifescifi.blogspot.com/2017/10/my-undead-genes-turned-on.html)

I did very well. I did extremely well! I started playing piano! I was a resilient child. My mother describes my early development in https://thoughtfulveg.blogspot.com/2018/07/a-resilient-child-grows-to-have-grit.html

Learning is play for me. I learn extremely fast and I do it for fun. Go back in school records and you will see. Kids don't normally leave high school and start college at 16.

Updated 10/27/2018

I Have to Swallow to be Conscious?

When I opened my eyes I was made PVS. I presumed that was because I wasn't talking or moving. Movement started some 2-3 months after my injury and vocalization was 8-9 months after injury. Speech production was so late that it was thought that I would never talk. I need to add this to The Order of Coming Back.

A few years later I am moved to another hospital. This is my sixth placement. My diagnosis is changed to Semi-Vegetative because I'm vocalizing. I am put up front for visitors. "They put Angela in a wheelchair right in front of me and told me I could start playing. While I played Angela said to me, " I used to play that song on piano." I was shocked that she was able to speak and carry on a conversation...." Read the part from David S. http://thoughtfulveg.blogspot.com/2012/02/angela.html

I leave that hospital for my own home. I am not discharged, but care is transferred to family. Before leaving, I actually argued with a nurse I'm not vegetative.

Years later I'm given a swallow study at my local hospital. Again - the test was done before when I had pneumonia, and a second time when the government stopped providing the formula for the feeding tube. The test was also done years ago at the rehab hospital. I swallowed to my lungs not my stomach. I remember the rehab used red Jello. The Jello came out my nose. 

I didn't swallow for these other tests and remain Semi-Vegetative. Now the rehab diagnosed dysphagia after the first test. Dysphagia is an inability to swallow. The later testing should have occurred after therapy to determine effectiveness of the therapy. Instead testing has been used as a determining factor in providing services, and this last time... as punishment? To use it as a means for stopping nourishment is only punishing and abusive. If you thought the Terri Schiavo outcome was bad, I am aware and can speak. She probably only had limited awareness but then you get into what I believe is going on. For that you will have to look into neurogenesis. I've previously written about neurogenesis. Here's a few:  Neurogenesis Is a Process, Stop Calling It a Coma, The Problem of Neurogenesis, My Late Recovery. I've written much more. You'd think I've written a thesis.

So you have to swallow to be conscious? I don't swallow and am not conscious.

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If you want to watch a pretty girl eating a lollipop, then 

The whole thing is 15 minutes of the girl eating a Blow Pop and then blowing a bubble. I know because I skipped through the video.

Now I avoid Blow Pops because they have gum and they are big. Dum Dums, a smaller lollipop, are more my size. I also like some of the all natural vitamin lollipops. You have to look around. I need to work on swallowing and not licking. Gum is not meant to be swallowed. I want the lollipop small enough for lip closure around the candy.

Speech therapists did your training ever focus on just swallowing or only speech production? One told me both. I'll work on moving the lollipop in my mouth with my tongue. I especially pay attention to my weaker side. I will specifically place the candy on the weaker side. I will not keep it there for the duration, but I want this area exposed and stimulated. Children won't do this.

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I have some lollipop videos, but they are more than just eating a lollipop.

Neurogenesis is a Process

Without trying to sound like a total nut, I put my ideas forth. I do not have a lot of the evidence because I am in a government funded insurance program. I can only give gut feeling and my existence as proof. I ask for an MRI. They can't pay for that. I am writing, but all my brain lobes supposedly died years ago. I want to know what I am using.

The NDE probably enhanced what was done right in the initial surgery. Records aren't too clear. For example, I was treated for hypothermia (my body was cold). I doubt that I had been left outside in the snow. It was more likely that my body was chilled for surgery. I believe cooling the body is one of those right things. It's good I got surgery.

"Dead genes" turn on after death and do a lot of repair and emergency work. I had an NDE and had artificial respiration for a few months. My body probably thought it was dead. These genes would have turned on. http://reallifescifi.blogspot.com/2017/10/my-undead-genes-turned-on.html

I also have an undiagnosed disorder which is probably savant syndrome. I've been smart since gradeschool. I wasn't your typical poindexter geek. I was sickening smart, but social and earned nicknames like Brainiac. This disorder allows me to live outside a superbug factory (hospital) and probablly give better care. Oh, do I still have a lot of medical issues! I just don't need surgery.

I was a child genius that went on to other

things, namely this.  I was NOT a doctor.

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You are probably seeing neurogenesis. It's not a one time thing and it's done. It's a process. It's more like repeated neuroplasticity. In me it has lasted years.

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LOLLIPOP THERAPY

That's what I am calling it. It falls under oral motor exercises done with children. This is speech. You will hear my speech improve.

Something interesting has already happened since I regularly started sucking on lollipops. Heartburn has stopped. Ever since getting the g-tube, there have been problems with acid and formula reflux. Put it in me, and some would come right back up. This stopped with the introduction of lollipops.

I assume the flap from the esophagus to the stomach is stronger and is staying closed. A swallow study with a barium lollipop would be helpful, but those lollipops do not exist. One would have to be made.

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Neurogenesis may be more readily seen in me due to this undiagnosed disorder. The disorder magnifies it and then I point it out. Neurogenesis most likely is happening in others with brain injuries, but in subtle ways.

I'm not in a coma, and BOOM one day I am awake. That seems how it happens, http://thoughtfulveg.blogspot.com/2012/11/seeing-obvious.html.  No, I am still in a coma. I bet that the "vegetative" people who are now showing signs of consciousness are just experiencing neurogenesis to a lesser extent. Maybe, BOOM, one day they will be conscious.

I've said it before...

"Their quantification of white matter reorganization shows long-distance rewiring in posterior medial cortices, possibly reflecting axonal sprouting or neurite outgrowth, maybe even related to neurogenesis " happens to be Steven Laureys describing a man who was MCS, but started talking nearly 20 years later. What he is saying is that tiny nerve fibers grew and rewired. This is most likely going on with me. http://thoughtfulveg.blogspot.com/2017/08/not-fast-enough.html

Growth does not happen overnight. So far it has been years in me. There's no BOOM.

Stop Calling It A Coma!

She wasn't in a coma for 20 years. She was MCS, Minimally Conscious State. Since when is MCS a coma?

Here is the longer video,

In this title, the woman was asleep for 20 years.

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Look at the condition of her body. That is due to not receiving intervention for 20 years. There are things that can be done to prevent that leg from hiking up, or her head being bent to the side which seems to lead the whole body into being lopsided.

When you look into my background, you find out I worked in Early Intervention. I had settled in the "Early" part because I wanted to work with babies, but I had to learn development of the whole lifespan.

There are things that could have been done with this person's body before it had deformed. Proper positioning and simple range of motion could have kept everything symmetrical and moving.

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 I say not to refer to this as coma. I am in this "coma." Since I am writing and my IQ is so high, I am making this look ridiculous. I'm not in a coma. I meet the same conditions as her, though.

Just so you know, this featured woman passed away, but the treatment she received is typical for MCS.

What I think is going on: The wire doesn't exist for rewiring. This lengthy process, sometimes 20 years, is the body growing a new wire. It's making a new neuropathway.   -NEUROGENESIS

Go to me, as I am documenting this as best I can without the biological information. You see I have slow progress in photos and writing samples. That is growth!

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MCS is where it can mostly be seen. This is the "Minimally Conscious State" and consciousness is slowly emerging. Consciousness is strong enough to be seen by others, but the individual is not yet 100%.

It happens with PVS, but this probably is the pseudo-coma. The person appears to be in a coma, but really there are thoughts racing in the mind. The body shows no outward reaction.

You get to my diagnosis and everything gets messed up. My diagnosis is "semi-vegetative." I was trained to say that in the hospital. That term does not exist as a diagnosis when I look it up. I originally was PVS. I was probably really in that pseudo-coma. Instead of being made MCS, the V for Vegetative was kept and "Semi" was added. My consciousness was emerging.

It was thought I'd die and I was released home. That's the shocker. I didn't die at home. The surgery I had at Stanford took away my pending factor of death. I and my local doctors possessed the necessary skill and knowledge to keep me alive. Hospital super-bugs were more likely to kill me. 

I looked just like the woman in the video when I left that hospital. Like she soon did, I also was expected to die. Instead my consciousness continued emerging.

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It gets difficult for me to predict what will be next now. All along I have stated there must be a secondary undiagnosed condition that allows me to write.

I now see this condition taking over.

This has been a chameleon...

it changes when you thought it was done.