Sunday, January 22, 2017


I finally got to a ALS in person support group yesterday. I went to the PALS group and Marian went to the CALS group (caregiver). We both learned a lot. I was a bit nervous when I got there. I was a bit early, so for the first ten minutes or so, it was just "Tom"* and I sitting in the room. He was so very kind and reassured me that I had nothing to be nervous about, that all the people that were coming were good people, and I would be okay.  Tom let me cry a bit. That helped. And he was right. The group was a diverse group of people with ALS. We all have this awful disease in common, yet how the disease exhibited itself in our bodies is as different as we are.
I listened and shared. I laughed and cried. I learned and decided I will go back. Initially I felt it wasn't as emotionally exhausting as I thought it would be. But after I got home and settled down, I realized
how tired I was, and how much information there was to process. Some of it was technical information, and some of it was emotional. It was reassuring to look into the eyes of other PALS who expressed the same emotions as I think about and express every day.

Today I'm having one of those days where I seem to be in a fog. I am unable or unwilling to make decisions - what do I want to wear, where do I want to go, what do I want to eat. I feel like everything that is happening is sort of happening outside of me. I can't focus and I don't want to talk about anything too serious.  I slept fitfully, and stayed in bed until late in the morning. I feel weak and I am having some bladder issues, which piss me off (yes, I know) more than anything else that I am having to deal with. I have a very long list of things to talk about with my doctor. I go in a few weeks.

Live to Love. Love to Live.

*Not his real name

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