Tuesday, January 22, 2019

Micro-Swallow






Long ago I watched a video of Edward Taub where he described micro-movements. He was talking about CI Therapy and the arm that did not move. The paralyzed arm actually was doing these micro-movements. CI Therapy is Constraint-Induced [movement] Therapy. https://en.wikipedia.org/wiki/Constraint-induced_movement_therapy




I believe the same thing is happening with my swallowing. It's there, but the motion of swallowing is so "micro", that it is not detectable by current methods.


Back when I was in rehab it was common to hear a therapist say 'visualize yourself doing...' and then a desired task was said. This may be a building block to the formation of a memory.

I wonder if these memories are then the "micro-movements" that precede a desired action. The movements are not detectable, yet a person would swear that they are doing the desired movement.

"Proof is in the pudding." I have been visualizing, exercising, then moving for years. Just look at my pictures and videos.



Wednesday, January 16, 2019

A Negatlive Effect of Neuroplasticity



"That heart will give someone a seizure." On the site, the picture was psychedelically flashing. It was continuously changing color. https://www.facebook.com/angela.ronson.9/posts/10215475658778991?comment_id=10215508672644317&reply_comment_id=10215528134330847¬if_id=1547335125934308¬if_t=feed_comment


Laura Besser placed that heart in a friendly response out of love. She wasn't trying to give anyone a seizure. That lays on the nature of the picture.

______________________________________________________



Not me. I don't have a seizure disorder. There have been times when the word "seizure" was used to describe the situation. I believe this was wrong.



I've used this picture to explain rewiring, neuroplsticity.

When I initially had my stroke, I had no movement. I move now. A step back for me would be no movement. This would be a negative effect of neuroplasticity.

At a carehome in Southern California, I was taken for a CT scan. Home staff were concerned that I was staring. This can be a sign of seizures. Staring is common of being in a vegetative state. The CT showed that I was not having a seizure.

Those times when I appeared to be going back into a coma, I didn't have a seizure. My brain was rewiring.

A negative effect of neuroplasticity is person specific. Not everyone couldn't move after a stroke. It is better to start with seizures and then rule them out. A seizure disorder is more common.




This dance was two steps forward
and two steps back.


Tuesday, January 8, 2019

Are You Right or Left Handed?



Are you right or left handed? -PC
Thank you for asking. Others have asked as well. 

For 32 years I was right handed. I had the stroke in 2002 and was no handed after. It was a couple of years before I started using my left hand to push buttons on a laptop computer. From 2002-2004, I rehabbed this left paralyzed hand that I am typing with now. I am using my index (pointer) finger. 

I hated the idea of only using my left hand. I had become dependent on my right. The left was better than nothing and that is what I was.

This gets people,

The video is 2015, 13 years after my stroke. I'm using my right hand. I'm doing sign language, too.

I am still primarily left-handed, but I now use my right thumb to click on a mouse. This is written in January 2019.

I bought a track-ball mouse. They are fairly inexpensive. This type of mouse remains still while its track-ball is moved in order to move the cursor on the computer screen. This allows me to click and not have my computer cursor go all over the screen.



It's looking like I am both handed, now, or ambidextrous. I primarily use my left hand. I'll use it for typing and such. I will use my right for minor tasks, like holding Kleenex and turning off the light. I'd say the left is dominant, but 15 years from now that may not be the case. 

I don't mind much anymore which hand I use to get something done. It just needs to get done.






Sunday, January 6, 2019

Hidden In Plain Sight


I wasn't placed in a facility. Most of those places don't exist anymore. I was continually  moved around. I think I once saw five places in two years. How often do you move in two years?

The last place I was at was over a year and I was happy. I came home because it was closing and I couldn't stand the shuffle. I knew I could handle the medical care. I had been previously trained. I just had to relay that info to a caregiver.

I'm physically disabled, not mentally disabled. Try saying that when you can't speak. I was made PVS, though. It was changed to Semi-Vegetative in 2004 when I started getting words out.

My stroke was 2002 so it was a couple years of not getting anything out. I'm still "vegetative." It now looks like gross misdiagnosis, but I'll let the public decide.



I can get more than a few words out now and it is understandable.



Monday, December 31, 2018

Competent (Updated 12/30/2018)


I don't want anyone, not even the commercial entities of the hospitals in which I resided, to be held liable. So I have removed all names except mine.  I originally presented this on 11/28/2012.

 

You won't find this document in any medical record. It's here by chance. During my hospitalization at many hospitals, this was thrown into a box. It was written by my doctor at the time to Social Security. The motivation was money.
  
You see, as "semi-vegetative" sometimes I was there, sometimes I wasn't. When I was there, I was fine. My hospital bills weren't being paid on time. This could easily be fixed by a doctor telling Social Security I was competent to receive my money and not need a payee. The doctor was at-risk of losing me as a patient because of non-payment. If I controlled my money, I could pay a bill on time.




If I was mentally all there on 6/2/03, then why am I not now? The stroke was in 2002, which was before this letter. There was no form for recovery. The doctor had to write this letter. The government works by forms or nothing happens. Hence, I am still in a coma.



Saturday, December 29, 2018

Communicating In a Coma


I'm not as scary as this video clip,



I posted the following in a group:


Before I talked n only moved my head some, I was at Santa Clara Valley Medical Center Rehabilitation. This is in the middle of Silicon Valley. It was 15y ago n Steve Jobs was amazing. I was put on a computer.

A dot of some mylar-type material that was sticky on 1 side was cut out n placed on my forehead. I controlled a cursor. It was only yes/no at this time.


I found a commercial headmouse. It even had the dot, which is put on glasses in the video. It was close to a thousand dollars! After shipping and tax it would be more.

Headmouse

 
I did yes/no games with that headmouse.


 This is not a game I played but it is to 
give you an idea. The equipment has to 
be learned, so games are simple.
I also had a brain injury. You need simple games.




The computer was stopped when I started moving a hand. Hand switches are much cheaper.


To think that I was probably one of these people in a coma that understood, and the US government lost their chance. This is very likely, just look at my diagnosis, Semi-vegetative. "Vegetative" is still a coma, but the eyes are open. You don't add "semi" when a person starts to communicate (speak in my case). That's Minimally Conscious State (MCS).

Saturday, December 22, 2018

I Still Haven't Woken Up

Pseudo-coma/Locked-In Syndrome definition.
Can be clicked.

I haven't returned to work yet because I'm still in a coma. I will explain. The government plays up death, mine anyway, so hence my diagnosis is semi-vegetative. "Vegetative" is close to death. "Semi" was added when I didn't immediately die and started recovering abilities. You now get this from someone who is semi-vegetative. I doubt a vegetative patient can do this.

"Work" was a Behavior Specialist for a county mental health. Before that I ran an early intervention program for kids under 5 who were at risk of having a disability. Yes, I was in charge. It served 5 counties and took care of a big piece of northern California. When I went to Mental Health up in the mountains, I ended up as that particular county's vice president of First 5. (http://first5sierra.org/sierra-county-children-and-families-commission/ My county was Sierra.)
 
I already had a background rich in dealing with trauma. Disability is no stranger to me. You can see that my current network was full of professionals. These people were my friends. I got the best and brightest info as advice.

Now, how am I still in a coma?

I had an AVM in my head that bled (AVM stroke) in 2002.  I ended up in a closed eye coma for 5 weeks. This is the coma I never woke from. I never woke up! In 2003 I started opening my eyes. The government made me Vegetative- I was just in an open-eye coma. (How do you wake up if your eyes are already open? I just didn't speak.)

I did something at that time that is unheard of. I COBRA'd my work insurance and used my Social Security to make the COBRA payments. Do what you have to do and I did. I skipped all bills and used the private insurance to go to rehab. I was almost dead. The dead don't pay bills. 

Some called the thing in my head a brain tumor, but there wasn't any tissue. It was a blood vessel. Usually these things burst when they bleed, but mine hadn't. I still had a thing in my head that could kill me...like a tumor.

I did a second surgery at Stanford. It was experimental. The government never recognized this. That should have been when I "woke up." I think it's funny. If you ask the government what happened to my AVM, what will they say? Stanford removed it.

So "do what you gotta do." I've had a big loss, if you say me dying was the biggest. (My heart stopped in the beginning.) I just keep plodding forward. I keep telling myself to think about it later. We know those thoughts are the downfall. Dwelling on the past leads to depression.

I think this coma business is stupid. I was in a closed-eye coma 16 years ago and opened my eyes the following year. Look up pseudo-coma. It's more likely that was what followed the closed-eye coma. I went from coma to pseudo-coma. (I would think that these are  the people that understand in coma.) Only a few have come out of pseudo-coma. (Pseudo-coma is also known as Locked-In Syndrome.)