Wednesday, September 6, 2017

Some Development

41% are misdiagnosed. Am I one of the 41% ...Or did I recover? 41% is high. "Pull the plug. There's a good chance I'm wrong, but the report says...." 

I was this, but I could do my own doctor care... and I can relate that info to my caregiver. I've walked people through on feeding, giving medicines, changing bandages, etc.

People don't know why I tell them to do something. I do. I know why. I did it today and I'll do it tomorrow. The day I can't do it is the day I go back to the hospital. I shouldn't be out of a hospital.

I was sent home to die. Doctors didn't know I was smarter than that. I did care and am still here.

So this woman, Maggie, is blinking one eye. That stood out to me because I did that. I started vocalizing during this time. I wasn't saying words, but I was making sounds. This was during my first year, but after diagnosis was given. Per recommendation, I made the beginning sound of the word I was spelling.

This was still in my first year. I was at a rehab hospital. They would have me do a lap around the unit floor, down the hallways and past the nurse's station, in order to teach my left arm how to propel a manual wheel chair. Although I was initially unable to move, after a lot of therapy, the staff at the rehab hospital got me able to sit up and move my left arm.

By this time, letters I was blinking "yes/no" for were all on a single sheet. Prior, they were much bigger and on flash cards. With that left arm that I could now move, the speech therapist suggested that I point at the letters I wanted instead of blinking. Also, I should vocalize the letter.

The typing you now read is this. I don't vocalize when I press letters. The page of letters was replaced with the computer keyboard.

"Before I could type on a computer, I worked spelling my name on a toy. I believe it was an apple of some sort. I'd call it the Happy Apple because it would play an annoyingly happy tune. I ended up practicing quite a bit with that toy turned off."

I could say a word when I left the rehab hospital. I went to a nursing home in Southern California. I ditched the communication board and wouldn't  let my family tell staff about it. Getting rid of aides is a common technique in education. I would be forced to "use my words." (Have you ever heard a teacher tell a student to "use your words"?)

I've used natural conversation with lots of repeating as my therapy. From 2006-at least 2009, I added vocal activities of singing and reading out-loud.

When I left the hospital, I commonly had laryngitis. When my children first moved in I'd get it. I don't anymore. People with whom I occasionally speak to on the phone, notice improvement the most.

So much has happened over the years. This is generally how it went.

"Even those lucky few who do get rehabilitation and are not shunted off to what is euphemistically called “custodial care” get too little time. Most rehab stays are six weeks or less. [I managed to stay longer.] But if the brain recovers through a slow process similar to development, why do we provide — and only to those lucky enough to receive it — just a few hours of rehabilitation a week for six weeks? It would be akin to sending your third grader to school for half-days of classes for a month or two and telling them that they are now on their own. Now that we know that it takes years for the developing brain to learn and mature, a similar commitment to the recovering injured brain now seems indicated."

There have been many instances where I suggested an education approach. "If we reconceived rehabilitation as education, no one would graduate after a six-week course of care. Instead, we would promote lifelong learning as a means to achieve a recovered life." I came up with a home-program that replaces the 6-week crash course, .

It's low to no cost. If these persons are just put on follow-along case management, then small issues can be caught before they are large and costly. It would be a shame if one of those 41% got well enough to file a lawsuit that could bankrupt an already compromised system.

I don't want to hurt what little is there. As it is now, I am vegetative and unconscious. Some other way can be found to compensate me.

This is the rehab hospital. You can get an idea 
of "laps", as that is what this patient is doing as
part of the process to relearn walking.
Quite a few placements followed this one.

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