I Have Issues

Going by writing you would think that I was okay. Not really. I'm healthy enough to not be in a hospital. The nursing home is next. I would most likely be there, but I know how to do the care.

Back when I was in the Master's program at SFSU, I was a weekend nightshift supervisor at a carehome for children. I had the skills. I just don't have the able body anymore. When I left the hospital from my current issue, I was starting to be vocal. A music therapist there noted that vocalness. 

 " I used to play that song on piano." I [the therapist] was shocked that she was able to speak and carry on a conversation - even though she was a little hard to understand https://thoughtfulveg.blogspot.com/2012/02/angela.html 

 I would just have to vocally relay care instructions to a caregiver. As I learned at one carehome the person I get can be a stranger with no experience. Saying my medication dosage and other things to tell a stranger were regular activities.

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This is why I should still be in a hospital or other medical facility:

I have a hole cut right into my gut giving doctors straight access to my stomach. I have a feeding tube.

This is why I'm not supposed to be home. The medical feeding tube is a lot like the ones I've seen in community care, except you can only use formula and not pureed food.

Typing requires me to sit up. Because of the hole, I'll have to recline when it hurts. 

Someday I'll get this tube taken out of my stomach like the one that was taken out of  my neck (that one was for breathing). I mostly read right now and do not respond in writing.

Feeding tubes are much treated like IVs in the community care setting. Both require nurses. A family member can do it at home, though. That's how I get around this issue. I can talk an unlicensed aide through doing the process because I am at home. Cool, huh? 
 

Aides only do cleaning, gauze change, formula prep, and turning off/on the tube. I have gravity fed, so there is no machine. My parents weren't even allowed to turn off a beeping machine in the hospital. Gravity fed just eliminates the machine altogether. No machine means no trouble.

The medical issues are handled by a local GI specialist doctor. I personally handled one emergency. Aides do not do medical care. Paramedical care is covered only by them.

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This would never happen in a hospital.
This is my granddaughter, Layla.

Babies aren't allowed and forget that the bedding is mine. 
Carehomes would be lenient with these issues.

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 Although I am home, I have lots of issues. The disabilities aren't proving permanent, though.

I don't walk. This appears to be a big concern of others. There are wheelchairs, though. That issue is slowly being accepted by society. Of more concern to me is that I can only be up in a chair for a few hours. The reason is not stamina. Stamina can be built. I need to lay down because of pain from my feeding tube.

 My bed and computer set-up.

I do not eat. I have a feeding tube. I learned to say, "I'm on a special diet" when I am at restaurants.

Not swallowing is affecting my speech. I am currently working on this area.  If I learn to swallow, I can learn to eat.

Although I am not on a ventilator anymore, I still have to be careful. I can't be around smoke. Even if an issue is resolved, I still need to be careful.

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.

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.

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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.

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.

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.