Friday, March 16, 2018

I Suction Myself

Long ago I used this video to show that it is possible to survive without a head.

The chicken died because it needed to be suctioned. The caregivers had been suctioning it with an eyedropper. The eyedropper was lost when the chicken died.

Suctioning is a process where a special instrument is used to clear an airway. The airway is basically vacuumed out.

Now I learned how to suction my mouth with a yankauer. (The AUER is pronounced like SAUER KROUT.) One of these things may have been used on you at the dentist. You may have been told to suck on it.

A yankauer suctioning tool

There is a deeper suctioning that I had when there was a tracheostomy tube in my neck. I wasn't able to do this one on my own.

Since I always did my own suctioning with the yankauer, I always had a clear airway. It was alright that I didn't cough.

I didn't cough. I somewhat do today, but it is still inconsistent. It slowly gets stronger. This will be hard for medical personnel to fathom, because it was said that if you didn't cough, then you were dead.

Nurses liked doing that  deeper suctioning on me. It usually makes a patient cough. Not me. I never coughed, but my airway was clear after.

I have a pretty strong diaphragm. This comes from years of choral singing and proper breathing. Lesser known is that sharply pushing on the diaphragm is performing the Heimlich Maneuver. My diaphragm is so well developed that I not need to push on it with my hands. I can just flex my abs.

With this brain injury came no flexing of anything. Breathing on my own came some months later. I quickly learned how to clear my airway when I got off the ventilator. I forgot all about that well developed diaphragm. Doctors will now say that played a big part. It might very well be the difference between what you see now and death.

Some years ago family described to a social worker that I coughed a lot. I didn't say anything. I was thinking. First of all, my airway clearing sounds like coughing. To me, I was blowing/exhaling hard enough to bring up the junk there. Two, I "coughed" a lot. There's no way my body could wait a few hours between suctionings from a nurse. As soon as I could, I suctioned myself.

I laid in bed and watched TV. With that yankauer in my left hand, I'd bring it to my mouth to suction. It was already on. It was always on in a hospital. I learned on a portable suction machine in a care home. I had to turn that one on. I could not move my right hand, so I did not use it.

Maybe I came out of a coma just so I could suction myself more frequently?

*  I currently am "semi-vegetative."
Vegetative is a coma, but the eyes can be open.
I do not swallow, which qualifies me as vegetative.
I am able to speak short sentences. (Due to that diaphragm?)
I use one finger to type.
I was in various hospitals and nursing homes between 2002-2006.
I currently live on my own with a visiting home care person.

I want to thank all the medical personnel, not just the doctors and nurses, but the RTs, CNAs, therapists, and people sweeping the floor. I thank family. I want to thank all who have written me. I want to thank everyone who reads and keeps me in mind-the collective conscious. I thank everybody.

I still pretty much am in bed. I do get up into a wheelchair for a few hours on most days. I don't have to use a yankauer anymore. I now blow my secretions into a tissue.

Thursday, March 8, 2018

Pride Made the Error

I was made semi-vegetative after surgery at Stanford. Developmentally, I was taking-off. Instead the diagnosis I had said I was dying, Persistent Vegetative State.

It looked like Stanford reversed the downward spiral and saved my life. This wasn't admitted. Instead of changing me to minimally conscious, MCS, I was made "semi-vegetative," a term that doesn't exist in diagnostic manuals. The government program had too much pride to admit Stanford's success.

Smiling: the first gesture in that description I give in is apparent in the photograph taken at that hospital. (Ignore the dead body behind me. It took this place, the government program, a while to remove dead patients. I think this one was three days.) I exhibited all those qualities listed in the description.

The government had too much pride to bend over and admit to a small university that the university had the skill they didn't.

This essay could infuriate the government. I'd like that. They then would have to admit this essay exists. As now, I'm vegetative and can't write. Again, it will be pride.

The head of the government can be made into a Macy's Thanksgiving Day Parade Balloon. The government could easily provide hot air. It would win awards.

 (Is that Scooby Doo's body? 
*snicker, tee-hee)
It was a different president in 2004, but same idea.

Friday, March 2, 2018

Biography... for Plus Commentary

The stroke stands out the most, so I'll start there. In Dec 2002, I had an AVM bleed, also called an AVM Stroke. The  AVM did not burst, so it remained. Initial surgery only stopped the bleeding. I was in a full-coma for 5 weeks. Then I opened my eyes. I could not speak or move, at that time. I was made vegetative, an open-eye coma.

In 2004, Stanford University & Hospital removed the AVM and did neural repair. The procedure spanned a month. The AVM is all gone. What you see now appears to be brain growth.

I continue to have that vegetative diagnosis. I speak and obviously type, although I only use one finger. I currently use an electric wheel chair. I have a feeding tube for nutrition.

Now the prior, and this will get people. I was extremely intelligent PRIOR to a bleed. I started playing piano before I started school. Piano stopped in the 3rd grade, but in the 4th grade I took off academically. I left high school when 16. At 18 I had an AA in Business Administration. At 19, I had a BA in Psychology. Time off, then an MA at age 24 in  Special Education.

I had children and worked until 2002 when I had this bleed. The first four years after the bleed were spent in various hospitals and care homes. I think I got lost in the system and I am being "found" again. Neuroscience News found me first... trying to get fair healthcare services. (By the way, I still do not have a neurologist despite "being in a coma" and having multiple brain surgeries.)

AVM stands for arteriovenous malformation. It's a rare condition that is usually believed to form during development before birth. Many do not know they have it. It is usually found after it bursts and causes death.

A tangle of blood vessels form. An artery directly goes into a vein. There are no capillaries. Veins are not meant to take the blood pressure. Mine leaked and was found. A burst most likely would have killed me.
This is the best image I could find on Google.

I did go into a full coma after that first surgery to stop the bleeding. After 5 weeks of deep coma, I opened my eyes. I was made vegetative, which is still a coma, but the eyes are open. I was made the more disabled vegetative, PVS (Persistent Vegetative State). If the lesser MCS had been chosen, this progression would have been easier to note. MCS stands for Minimal Conscious State.

I have slowly progressed to consciousness, but I still keep the vegetative diagnosis. In 2004, my diagnosis was changed to "semi-vegetative" by one hospital as I was vocalizing, but "vegetative" was kept. I've since gone home. I speak much better and I manage the care of my feeding tube by verbally giving care givers directions.

Remember I explained I was a child prodigy? I was diagnosed in the 4th Grade as advanced. This may be all a school needs to know. That advancement would provide my body with the plasticity and other tools to survive a bleed. This take would assume I had undiagnosed Savant Syndrome, Congenital. Then there is a second disorder, Savant Syndrome, Acquired, that comes from a brain injury. If you put the two together, you have double Savant Syndromes. I don't want to go there, but what is this? Higher analysis isn't categorized, I think.

It can then be concluded that Savant Syndrome is needed to restore consciousness. This disorder is barely studied as it is so rare. More will have to be known about it. 

I could be totally wrong. In that case, I am in a coma and I am just confused.


Sunday, February 25, 2018

Stimulating My Brain

In looking for a way to stimulate this area shaded in blue, tDCS was recommended. I've been told that area corresponds to  the motor and somatosensory cortex.

tDCS is primarily done on your own. Given electricity and a brain, almost anyone can do it. Well, I don't trust almost anyone. tDCS is stimulating the brain with electricity. It stands for Transcranial Direct-Current Stimulation.

First I need to know what it is.

I don't want my head cut open again, so this may be the way to go. Why isn't this closed head technique as studied as Deep Brain Stimulation?

It isn't as available or regulated as the Deep Brain Stimulation is available. The closed-head stimulation, tDCS, is the Wild West of brain stimulation.

I worried about placement. I wanted to stimulate the motor cortex and most devices were aimed at the front of the brain. Then I stumbled on sports. Athletics target this area.

It looks like the devices used for athletics can be moved to target other brain lobes. 

A band such as this, may be positioned to hit the side of the head. I haven't found this particular device for sale. I could only find this picture.

This is looking like the direction I am going. I might be the guinea pig. I'll have to look at university programs now. I'd like skilled people placing this thing on my head.


Saturday, February 17, 2018

Heal Thyself

"So maybe the first thing I will think of, will be to actually use my brain to restore my...." He then states eyesight. I cover that in another esasay,

The man is answering a question about trading eyesight for IQ. I am doing another physical skill now, but this is along the same lines that I am experiencing. My eyesight is good enough to get by. I'm no longer  blind in my right eye and I can see the computer screen.

Currently, I am working on swallowing. I swallow throughout the day, but it is not controlled. I cannot eat and have a feeding-tube for nutrition. I remember dealing with this issue years ago with some toddlers. Parents were recommended lollipops. I now use a lollipop.

This is actually called something, Functional Oral Rehabilitation. I call it Lollipop Therapy. "Conclusion: Sucking lollipop exercise could be a prospective option which improves the oral environment in addition to oral function of dementia patients." Functional Oral Rehabilitation using Lollipop Candy for a Dysphagia Patient with... | Request PDF. Available from: [accessed Feb 16 2018].

"Boom, now it's gone." I can say that.

When patients have a rare deadly disease, they need to be in clinical trials.

I didn't have cancer, but it was just as deadly. It was immediate pending death due to placement.

I'm still here and the anomaly in my brain is gone. I'd say the clinical trial worked. This was just one issue in a list of many that had to be resolved. It was probably the most important issue, because I couldn't do anything if I was dead.

Since I immediately wouldn't die, I could think about other issues I had. "I could think." That meant I was misdiagnosed. I searched around and came up with Locked-In Syndrome.

I now look like a person recovering from Locked-In Syndrome.

Tuesday, February 6, 2018

Clear Discrimination of Communication

I am writing this from the 'other side of the coin' so to speak. I am writing this with adaptations I and others made long ago. If not for this clear writing, it could be said that I was mentally impaired.

First, just what is it I am doing? I am using the pointer finger of my left hand to hit and press letter keys to spell words that I organize into sentences. We then get into paragraph and essay construction that I learned in grade school.

Typing on the computer wasn't instant. Before I could hunt out letters on a keyboard, I had to find them on a communication board. Blinking 'yes/no' for a letter was many years ago, and is where finding and identifying a letter began.

Since I am using only one finger, I must be doing something special to make capital letters and hit multiple keys, like <ctrl> <alt> <del>. Computers come with accessibility features built right in. That particular one is called Sticky Keys. There are many adaptations. This and a lot of computers call the program Ease of Access. An Occupational Therapist in Southern California first set it up for me years ago. It was called something else back then. I don't need all the adaptations now. I just pretty much need the Sticky Keys. (There used to be an important one called Bouncy Keys. What happens on a computer if you hold a key down too long? Too long can be a whole second. I was getting mmmmmaanyyy letters.)

With identifying letters, came the ability to sit up and move an arm by having lots of therapy. It was a combination of Speech, Occupational, and Physical therapies. You can't single out one. It's like a pie. If you have a cherry pie, but only single out the cherries, you have a different dessert. (Cherries Jubilee)

Now that I communicate clearly, you see there is no cognitive impairment. This means communication and cognition are mixed together.

Sure, a cognitively impaired person won't communicate. What about communication disabilities, though? People who don't communicate are being called cognitively impaired. This isn't right.

A so-called 'cognitively impaired' person who is finally able to communicate through higher technologies will challenge the system not set up to handle communicative impairments. This is Locked-In Syndrome. This is what is happening with the man who has been called 'Ghost Boy,' Martin Pistorius.

This essay could be communication. I am still vegetative, although I am able to speak somewhat. It might take me all day to type this with one finger, but I'm not going anywhere. Besides, I know stuff you need to know. I doubt that all the people who see this are clairvoyant. They are reading this. Again, no special powers are being used.

Sign language is just an adapted form of communication. I'm not exhibiting some mystical power. The hand movements aren't "spastic" like previously said. If anything, there is great cognitive skill going on here.

Years ago, I became familiar with the following categories of intelligence disability:

Click to enlarge.

I'd be classified as "profound" when I first had my bleed.  Why? Because we don't know. I'm going to disagree with Google and say profound impairment is impairment so severe, that the subject can't be tested. The definitions I kept getting on Google had numerical IQ scores.

To illustrate look at the word "profound."



I was

(cherry pie)

Now I'm

(Cherries Jubilee)

Obviously, there is clear discrimination of communication.
What is my diagnosis?
Case closed.

* I have a BA in Psychology and an MA in Special Education. I have worked in disability, children's disability, and mental health. I have guest taught specifically on the topic of children with special needs issues.


Sunday, January 28, 2018

Trapped In This Body

I wonder what kind of legal problems he's had? He left the country where he was. (He was in South Africa, but moved to the UK.) I haven't left...yet.
He is recovering from Locked-In Syndrome. He was thought to be severely cognitively impaired. He was given a computer and taught how to type. People were shocked! Maybe if he had received better treatment, he wouldn't have all those terrible things to say.

I'm still proving to everyone that I am conscious now. Oh the legalities! First of all, is this really me typing this out? Yes, it is. Second, I don't need the lawyer. I want to be conscious. Is it so hard to cross out the word "vegetative" on my file and write conscious? If you need something, write quadriplegia with limited movement.

My functioning is pretty much the same as this man, but I vocalize now. My speech is not the greatest, but I am understood. I remember when I moved out of the hospital and I would lose my voice every other day. I had to take a breath after every word. My vocal cords were weak. Not anymore, thank goodness. Now I can hold a conversation without stopping after every word.

I still have to type longer things like this, but I can make conversation. Only once in a while my daughter has to correct me.

People are taking too long to make me "conscious." Umm... Stanford wanted to do it long ago... back when I had that surgery. It was said back then that it wasn't possible. The surgery I had was ignored. Now it's years later. You better find out what happened.

["Their quantification of white matter reorganization shows long-distance rewiring in posterior medial cortices, possibly reflecting axonal sprouting or neurite outgrowth." I think that I had the same sprouting back in 2004 when I had that surgery. It's years later and those sprouts are all grown up. You can then get into "Oh dear! How was she before?" You will be pleasantly surprised.]