“Living in a Conscious Sedated World “ Chapter 57

Imagine being fully aware of your surroundings with the ability to feel everything and not able to communicate what you are feeling.

**SPOILER ALERT **

Do you remember how McDreamy dies in Grey’s Anatomy? He was in an accident, and as a result, was in a coma. The doctors decided he needed brain surgery.  As they go into surgery, McDreamy was fully alert in a conscious state. As a brain surgeon himself, he knew what was needed and what was happening, however, he couldn’t move or tell anyone to stop. Eventually he dies because the doctor working on him performed the wrong procedure.

With a current ALSFRS-R score of a 2, as I progress and continue to lose more muscle function, I am no longer able to move anything below my neck, with the exception of small movements no better than a twitch. I can hold my head up only if my body is in the perfect angle or it will tip to far forward or back and I need help lifting it.

I can only move my eyes and lift my jaw upward very little. Basically my mouth is a Venus flytrap without the bite. The bugs can fly in and out (and they do) without concern. Using my eyes to do everything is tiring. So much so that they constantly tear, and it makes me look like I'm watching rom-coms all day.

I’m still able to breathe only room air using the ventilator without any oxygen blended in, and maintain 99% oxygen intake levels.  This is a good thing because I am not totally dependent on oxygen. However, turn the ventilator off I am like a fish out of water.

I’m pretty proficient with my eye gaze technology. I’m also able to communicate effectively through it during the day. However, when I don’t have it is when I fall into a conscious state.

Now let’s go back to my first thought: “Imagine being fully aware of your surroundings with the ability to feel everything and not able to communicate what you are feeling”.

When I don’t have the eye gaze available, we use a system to communicate with questions and my eyes. One blink for yes and twice for no. You can’t ask questions with multiple answers, and you can’t speak too fast for me to answer. However, this only works if you are looking into my eyes and asking yes or no questions.

(Note: this blog is to help and teach, therefore any comments are not to offend or upset anyone)

As I have progressed, my ability to talk and drive my wheelchair has gone away, but feeling pain has not. Since I lost my voice, I can’t tell anyone I am in pain without my eye gaze. Since I lost the ability to drive my wheelchair, others have to do so for me.

When I first started driving my wheelchair, it wasn’t long before I was quite proficient. There were a few bumps of the walls and a crash along the way, so I wasn't exactly perfect.  Buuut, someone needs to start a wheelchair drivers education program for CALS. The walls and doorways have so many marks you would think I have 12 kids and we are marking how tall they are. Think about it, the school could branch out to other disabilities also and sponsor para-Olympic racing with caregivers driving the chairs. As scary as that sounds, give me a helmet and four point seatbelt and I’m in.

Most people can yell out in pain when they stub their toes on something or shout out when they are about to hit something as a warning. In my case, I can only shake my head a little if it’s not strapped down. So when I get hurt, I can only shout out in my head trying to inform the person driving my wheelchair, just like McDreamy did. I know what you are thinking, ”but David, you’re by far better looking than McDreamy”.  Any pain or injury is unknown to the caregiver until I can somehow communicate it.  This is the hard part. Understanding it’s very difficult to see my feet when operating a wheelchair from behind, I’m letting the caregivers reading this know that my toes hurt.

PRO TIP: when moving your PALS in the wheelchair, get small. Bring the feet all the way down and the backrest up as much as possible. Every time the walls were hit or my feet injured, the wheelchair was extended.

Sometimes even a cat can make you feel helpless. Last month, while in bed, my cat crawled on top of my head while sleeping. I was not able to move her and when I tried to hit the call button to get Laura, it didn’t work. So there I was, with the cat cleaning herself and licking my head bald, while I laid there unable to tell anyone. If you have never heard a cat cleaning themselves, it’s loud and wet.

Conscience sedation is a very real thing. PALS in the later stages of ALS will all face this and both PALS and CALS must be prepared. Figure out an effective communication system, put bumpers on the walls and get extra paint. For your PALS, get them a good pair of steel toed boots and elbow pads and take the wheelchair out for a drive when they are not in it.

I’ll see you at the races with a big FCK ALS on my helmet.

Love and blessings