Met with Dr. Xxxxx at Jefferson Hospital last Thursday. I knew already that I had ALS, but somehow hearing it from him had a finality. In the back of my mind, I keep hoping that there's a way out; perhaps a mistake was made, perhaps I've imagined the whole thing, maybe I'm being a hypochondriac, I made it up, I'm exaggerating my symptoms and really it's just stress or I breathed too much joint compound dust over the years.
No, it's final.
Tuesday, January 12, 2016
if I just get enough to sleep, I'll feel better.
I keep thinking if I just get enough to sleep, I'll feel better. Stronger. Able to do things. While this was true "before", it definitely is not longer true.
I also think if I have a really strong cup of coffee, it'll give me energy and I'll be able to do Things. Also no longer true.
Now when I get up, I'm immediately feel,like the ship,is listing and I'm in danger of falling.
****
The only time I feel normal is when I'm sitting down and doing absolutely nothing.
If I get up, I'm dragging the 50 pound weight being me.
Hands are weak, holding a kitchen knife and cutting vegetables my wrists feel flaccid. Thumbs are no longer firm, turning the key in a lock or starting the car has become a two handed procedure.
Right leg and right foot now pointing 20 degrees to the side
Voice is now almost completely unintelligible.
I also think if I have a really strong cup of coffee, it'll give me energy and I'll be able to do Things. Also no longer true.
Now when I get up, I'm immediately feel,like the ship,is listing and I'm in danger of falling.
****
The only time I feel normal is when I'm sitting down and doing absolutely nothing.
If I get up, I'm dragging the 50 pound weight being me.
Hands are weak, holding a kitchen knife and cutting vegetables my wrists feel flaccid. Thumbs are no longer firm, turning the key in a lock or starting the car has become a two handed procedure.
Right leg and right foot now pointing 20 degrees to the side
Voice is now almost completely unintelligible.
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