12/2/2013 12:58:00 PM:
I like to write and find that I'm generally better with the written word than speaking. I'm dealing with a very serious illness and trying my best to cope.
I was diagnosed with ALS (Louis Gehrig's disease) almost two weeks ago. The disease is terminal with no cure and only one FDA approved drug that might add a few months to your life.
I'm losing the use of my hands and arms and it's starting to move into my right leg. I suspect that I only have a few more months of mobility left before I'm confined to a wheelchair.
What is my life going to be like? Your mind usually stays sharp and all of your desires and urges are still active you just can't move to act on them.
I get depressed and frustrated and have some emotional lability. I'm lucky that I'm with an amazing woman and we are working through these issues.
11/4/2013 1:09:02 PM:
I don't know how to express how I feel.
I'm not in physical pain but I hurt. My body doesn't feel like my body anymore. I sleep yet I don't feel rested.
I go about my daily routines without the zest I used to feel. I feel distant from everything and everyone.
We had a nice weekend planned but only parts of it actually happened. We missed out on our relaxing part of Saturday.
I feel somewhat alone as I begin my journey with this newly diagnosed disease.
I know that I'm not the only one affected and my deterioration impacts us both.
I know that the load you are carrying is burdensome.
I can't do the things I want to do and that is truly frustrating. I'm fighting with a monster and right now the monster has the upper hand.
I'm afraid this is a fight that I can't win but I hope that once in a while I can get the upper hand.
I suspect that I'll never be the man I was but hope the man I am will be enough.