Tuesday, July 25, 2017


Before going all government, I had private insurance. I remember the rehabilitation hospital saying my AVM bleed was in my cerebellum "next to my pons." Now that's a clue that this may be Locked-In Syndrome (LIS), but no one ls looking for that. The pons is associated with the disorder.

Persons with the disorder usually use blinking to communicate. If there is no eye movement for yes/no, then LIS and Vegetative look the same.

There are subtitles in this movie.


I look just like this now:


Four patients made substantial recovery following the locked-in syndrome of vascular origin. Clinical and radiologic features supported the presence of ventral pontine [Here's the pons.] 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. http://thoughtfulveg.blogspot.com/2013/11/my-first-blog.html


She is asked how people will look,  

This is one recovery. I'd say one of the best.

Here's another, 

I'd say I'm somewhere between those two developmental outcomes. I talk some, but I still rely on typing.

Progress is extremely slow, so I may not developmentally look the same in a few years.

Saturday, July 22, 2017

Start With The Semi-Vegetative

Thousands of unresponsive patients might actually be conscious

so start with the "semi-vegetative." That's what I am. I'm not sure if this classification exists outside of the United States.

What I have experienced this class to be was initially being vegetative, and later starting to talk. I believe other patients with this diagnosis also started to show emerging signs of consciousness. Some may have then stopped. Others may have expired.

"Semi-vegetative" may have started after this, the reawakening of Donald Herbert:

I did not expire like this man.


I've thought this before and now it crosses my mind again... the advances of medical science are inadvertently causing what we call 'a return to consciousness.'

There is a tree in the forest that falls. No one sees it or hears it. No one cares that it happened. Now there is one person in the forest. The tree falls and is witnessed. Still no one else sees or hears this. The person goes home to family and relates what happened in the forest. Now the tree falling becomes a fact and the story spreads. No one would have known without communication.

I'm now wondering that what we call 'a return to consciousness' is really 'a return to communication.' I was conscious years before I started writing. Medicine and therapy afford me the ability to write.

I now consistently and appropriately communicate thoughts and observations. I regained communication not consciousness.

Tuesday, July 18, 2017

Consciousness is Complicated

Contrary to  popular belief, I have always been conscious. I was conscious when I couldn't talk or move. I could only stare at you. How could I remember where I was if I was unconscious? Recalled Itinerary 
I was sent  an article on consciousness, http://nautil.us/issue/49/the-absurd/when-neurology-becomes-theology. It was saying science doesn't even know about it. So, if science doesn't know what it is, then how can anyone take it away?

The government took something it had no business taking. How can the government give back consciousness if they don't even know what they took? I don't know how much will be affected by what they did.

What they did:  they removed my payee when I couldn't talk, but left me PVS. This meant I could pay a bill, but I was unconscious. THEY TOOK MY CONSCIOUSNESS!

It affects my Medicaid (Medi-Cal). I only get the bare minimum because my diagnosis says I'm dying... like tomorrow. (Hopefully I'm not going to die soon.) Nothing can be added now because I am unconscious and dying.

That was almost 15 years ago. If I had died, no problem.

For those of my readers who are doctors, have any of you ever had a patient who was going to die, it reached government paperwork (so days have passed), and then the patient turned around and got better?

I'm trying to figure out now what can be done. I guess I will "push" the system. As Americans have faith in the Declaration of Independence and all amendments. One thing I have found is that I don't have problems with absentee ballots. This was an amendment and voting was written very well.

Next is income. I don't fit the "Back To Work" criteria, but I write. When I generate income, the IRS can figure it out.

Medical is screwed up. That may take a lawsuit, but I prefer not to push one.

Who knows where my "consciousness" is. Actually, I know I am conscious, but this other thing sounds like a piece of paper you get from the Wizard of Oz.


Saturday, July 15, 2017

Crowd-Sourcing Ideas

Recovery from LIS, Locked-In Syndrome, can be a long process. Not much is known about it. I got to thinking... I only can speak a few sentences. Maybe it's not a mystery that I talk without swallowing. It's just time I learn how to swallow. I know a long time has passed. Maybe these lollipops I use are just the right thing.
I'd like to get the thoughts of #speech therapists.


It's been a few months since I started using lollipops to learn how to swallow. I notice I'll swallow throughout the day but it is not controlled. I just can't make myself swallow. It just comes.

I'm using the computer for therapy. In this case, speech. http://braininjuryknow.blogspot.com/2015/09/using-computer-for-therapy.html
I'm crowd-sourcing ideas. With this issue, speech therapists from around the world can have input.

Saturday, July 8, 2017

Be Still My Heart

"... did anyone ever die for a few minutes and come back?" Was asked in a cancer group. https://www.emaxhealth.com/1/recent-near-death-experiences-cancer-patients
The article is on cancer and fear of death.

I don't have cancer. I had a minor car accident and stroke almost 15 years ago. Bleeding in my head nearly killed me. Actually, it did kill me and I was revived. That's a different way of saying my heart stopped.

Initially I was told that my heart never stopped. I was believing this until I read the medical records. During the initial surgery to stop the bleeding in my head, my heart stopped. Records only say "blood pressure and hypothermia were resuscitated."

I was curious how long I was without a heartbeat. I wondered how long I was in surgery. I could have been without heartbeat a few minutes to a few hours. I messaged my mother. Her answer was more than I asked for.

It seemed like 13 to 14 hours. I met the surgeon outside the steps of the trauma hospital. We drove directly from the beach in Santa Cruz to Roseville 5 or 6 hours. Got there about 8 pm ? I signed the consent and you were in there all night until after 8 or 9 in the morning. You stayed in the trauma center for 30 days and were barely alive. I stayed with you. The first week you had a doctor in your room 24/7. You went through total body shock and the doctor did some weird experimental stuff and reversed the shock by running all your systems backwards and changing your body chemistry. He was some kind of genius that they couldn't explain all the things he was trying and he paced all around your bed like Dr. Frankenstein. Talking to himself and yelling orders.  He was a gruff looking man who seemed like a mad scientist.

So, it could have been quite a few hours that I was without a heartbeat. To any medical providers, does any of this sound familiar? I'm not sure how systems were reversed. To the original providers, I am obviously not dead. I am not vegetative, although I am classed that way. I don't speak a lot, and you get more from me typing with one finger.

Monday, July 3, 2017

I Got This

My case should have changed departments long ago;  if that is even possible. At least the NIH (National Institute of Health) should have been referred to for investigation. Do they even have a referral system?

Instead, my case is handled through The Centers of Medicare and Medicaid Services (CMS). They are the agency that initially removed my payee so I could pay a bill but left me unconscious (Persistent Vegetative State).

The person who thought this up (pay a bill but be unconscious) must have been so proud. In reality, the person, and perhaps the entire agency, is operating on The Peter Principle.

There is a big error already. I am not unconscious. I could direct payment of a bill. Like directing payment of a bill, I could direct my medical care.

I have directed my own medical care. I've done better than any government plan. Following their plan wouldn't have a very good outcome. Their plan was to treat with medication until death. I don't think of death as a good outcome.


The Centers of Medicare and Medicaid Services (CMS) is the agency that took off my payee but left my diagnosis as vegetative. When that was done, I could not speak. Over the years, I could vocalize more and more. I was using 1-3 words but not yet typing when Stanford did the procedure to remove the AVM in my head. I had no problem communicating with them.

After the Stanford procedure I returned to the government program at another hospital. This program is no longer there. After a year and a half there, every patient was packed up and moved. The hospital did not close. The program did.

I was sent home to die, from an AVM in my head that was removed earlier by Stanford. The place that sent me home is the place that removed Stanford's stitches. That sounds like karma of stupidity...not the hospital, but the program.

More years go by. I type now. I type a lot. I speak more, but not as much.

Maybe if CMS gave me some speech therapy.... They can't because I'm designated unconscious.

Oh no...it's the karma of stupidity again.

It doesn't stop there. CMS has created a huge problem. Left and right, people are hearing about an unconscious girl who writes. This whole problem could have been avoided if I had been changed to MCS (Minimally Conscious State) rather than left PVS (Persistent Vegetative State). Now I'm Semi-Vegetative. What's that?

I talk without swallowing. Well, that's a created problem. Speech would have taught me to swallow while teaching me to speak. I taught myself to speak. I am not a speech therapist. Now, I do not swallow when I speak, so CMS says I'm not conscious. It was a Catch-22.


The CMS Strategy

In December 2016, they cut off all food and supplies for my feeding tube pending I have a swallow evaluation. I had one at the end of the month. I guess their creative strategy was "don't feed her." It's a good thing I had a daughter stock-piling food for the Zombie Apocalypse. CMS did the very same test a few years earlier without stopping my food. I could only see this as some sort of punishment.

The test revealed I still needed a feeding tube. Food and supplies didn't get back on track until February 2017.

This is the mentality I have to deal with.