Tuesday, June 5, 2018

Submit Your Experience

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Having a Near Death Experience can take a lot out of you. Your muscles might not work. You might have frequent debilitating headaches. Your "mind"  might be wiped out. You just don't feel like it. It takes everything to communicate verbally with others just what happened. 

Maybe you don't speak anymore. I didn't at first. I had to come up with crazy ways just to get my point across. I was too involved to relate anything.

I put together some of the sites where you can report your experience. Someone else can do it for you, even. Just read the instructions. I'd have someone type while I talk. That's what I do with hand-writing. I will say what I want written.

IANDS is the big site.

I got many recommendations for NDERF.

I got one recommendation for this site.

You never lost consciousness, but were physically aware the entire time of your experience use this link. 

These aren't the only sites. They were suggested. You may put others in the comments.


Thursday, May 10, 2018

Breathing Correctly

I can't guarantee that you will be able to speak if your diaphragm is stronger. I don't know your specific case. It should help, though. Speech production is  getting air up and over your vocal cords.

This does help ward off pneumonia. It doesn't prevent it. -Angela

Not every case of not being able to produce speech is due to improper breathing, but knowing how to properly breathe can make a difference. The video comes from music. Voice training spends a great deal of time on this.

In the hospital, it is the respiratory therapist who is concerned about your breathing. My mother got a rather lengthy lecture. The speech person is the Speech and Language Therapist and is concerned with how you communicate with the world around you. Vocalizing may or may not be there. They may do sign language and other nonverbal ways to communicate.

When I first had my stroke, but before I could talk, I was put on a computer to learn how to indicate "yes/no" by using a special dot placed on my forehead, as I could only move my head. The dot operated a special mouse. I now use my left arm to type and I speak enough to get short messages out. Initially, I did not speak when I did that computer. I had to communicate in some way.

I have said before that I had a well-developed diaphragm before the stroke. This proper breathing video is that. It is breathing using the diaphragm.


I like the following video. The person who made it uses clips from other YouTube videos. I must have seen all of them while looking for that above one that I used. He also uses that one in this video.

Having a strong diaphragm may be why I talk now. Some doctors will say it is. I thought it was strong before I could talk. It was really only strong enough to keep me alive. Now it is stronger and I talk some. I guess I will be better when I can blow up a balloon. Yes, stronger breathing is something I still strive for.

I once was hospitalized at Stanford for pneumonia. When I got better, they gave me a spirometer. The picture I found is the same brand. This one was followed by some numbers, so it must be a new improved version. I compete against myself, so I'd try to beat my previous score. 

The Voldyne Spirometer is sold on-line.

Saturday, February 24, 2018

No Germs

"That's not sterile!" I was talking about gloves. People will think the gloves are there to protect them. That's not the case. The gloves are to protect me.  I don't want your germs.
Now this video shows super-ultra sterile gloves before a surgical procedure. I watched a nurse once train a new/student nurse. I used to have a trache tube in my neck, and the cleaning kit (the trache was removed for cleaning) had some. Student nurses were common at this hospital, so I was in school again.

This video gives you an idea about sterility. We don't have to be this sterile at home since we are not doing surgical procedures. However, we do need to be clean and take general precaution against germs, especially if your loved one recently got out of the hospital after an extended stay. A person can lose his/her immunity to general household germs if in a sterile environment for a while.

At home, I keep a box of exam gloves. It's common to use 1-2 boxes a month. Keep a can of Lysol or something like it handy. A can can last me about 2 months, but I use it daily (almost daily) on the main computer keyboard as I am not the only user. The box of exam gloves say 'non-sterile', usually. That's because they are not individually wrapped and protected from the elements like the ones in the video. I don't know if other measures are taken.

The gloves are for the patient's protection, not yours. You can't catch a brain injury, but (this happened to me) a brain injured person can get e coli because you didn't wear gloves after feeding your dog. (That was the plausible explanation the doctor came up with.) You can pick up germs from touching surfaces, shaking hands, or even going to the bathroom. Germs can be missed during hand-washing, but exam gloves protect against these.

Just a quick mention, use a face mask if you have a cold. I don't want your germs and I don't appreciate your snot dripping on me!

Wednesday, February 14, 2018

Positive Energy


I was just goofing around. I am holding a cut piece of pool noodle suggested by an Occupational Therapist. My right arm had been paralyzed. It had been 15 years since you saw it move like that.

The pool noodles are sold in packages on Amazon. I understand that the dollar store sells individual ones during the summer.

Little kids (and big kids) like them. They make great swords.

I use mine for exercise. It's a great way to take the disabled arm along. My other arm does most of the work, and my right hand holds on for the ride.

Sure this is a small success story, but I'm not an over-all success. I was just goofing off one day. Is it a success that I sit in a wheel chair? It isn't if you compare it to walking. It is if you compare it to me being bed-ridden.

I'm supposed to be the latter, bed-ridden. It's how you look at it.

Sunday, February 11, 2018

Ugly Boot

I now use this blue one:

The SoftPro AFO is a transition boot and gait trainer.
There is a bed only version without the foot pad.

From Google, a CONTRACTURE is "a condition of shortening and hardening of muscles, tendons, or other tissue, often leading to deformity and rigidity of joints.

AFO stands for Ankle-Foot Orthotic. They are braces and train positioning of the foot and ankle, just like braces for the teeth keep the teeth straight.

I "HAD" a contracture of my ankle. That's unusual, "had." It's gone. I thought that they don't go away. I asked a PT. It has happened, so it wasn't impossible that they should disappear. I had started wearing these big ugly boots cuz they are more comfortable than the plastic AFO. I wore it much longer.

I had a plastic AFO made here in town a few years ago. My goal was to keep it on 2 hours straight. I usually had it on an hour and a half. Then it started hurting and I'd take it off. I keep the ugly boot on all day.

I took one apart for washing. It's just a plastic AFO with tons of cushy covering on it. No wonder why I could keep it on so long. It's padded for comfort.

These things are made for non-weight bearing. I had a night splint, a big, ugly boot for sleeping. That means you can't stand on them. I could keep that night splint on all night and it didn't wake me. I was learning to stand and walk again, though, and had to stand on my foot. I made it my quest to find a boot that could take standing. I found the blue one pictured above. It is also called a trainer.

My foot still turns in, but half of what it was doing. That's major improvement. The contracture was because my ankle fully turned in and then turned up. It froze. It formed a bump. The bump is gone and my foot isn't frozen anymore.

I can now work on walking. I don't think it could be done without the foot.

I have a white boot here in the picture below. I don't wear this anymore because it was two pieces.

Friday, January 5, 2018

Start Now

"Recovery occurs for the rest of your life." (1:11 ) 

I got an answer I didn't expect. It was something like, "But it's been over 20 years." It was like, 'too much time has passed. Why should I bother?'

Forget that which was being said 20 years ago about brain recovery. Some might still be saying that. The brain continues to grow and recover the whole life.

20 years could have passed since your injury. You can still start now.

Sunday, December 24, 2017

At Least You Are Alive

Oh poor you. You lost so much.
Stop thinking this way and put it into perspective.

It doesn't matter because you are still alive. The woman above suffered a severe stroke.

That is what I mean about perspective. It doesn't matter what you lost. You didn't lose your life. You are lucky. A lot of people do lose their life.

Life has twists and turns. Yours took the biggest turn ever. So, make the biggest twist ever. Get used to your "new you" then go forward. Be a good example for others with similar conditions. Show them what to do.

*Personally, I couldn't talk, move, or see. I now see with both eyes, although my left eye is more consistent. I move some. I used my left hand to type this. I use an electric wheelchair. I speak some and am mostly understood.