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Showing posts from 2023

Further ALS observations and my own health

Not sure when this was written, but probably in 2023.   Well, as with many of my journaling efforts over the years, this one has faltered. I'd like to think that I have a better excuse this time, what with working full-time and caregiving to an ALS patient, my dear Alisa. And yeah, that is a very good excuse! Certainly the best one I have ever had. It doesn't, however, take away from my desire to record what we are going through in something approaching real time. The Caring Bridge site does that to some extent, and Alisa has been great at posting there. We have been trying to practice self-compassion over the last few years, even pre-ALS, so I won't get too down on myself. I am also experiencing the care-giving process as a what I am calling an "experience in empathy," and also of compassion. I have of course been challenged by the care giving, but overall think I have been handling it well. Other than I had a recent incident of going to the hospital after I was ...

An addition to the sadness

 2/11/2023: Well, as expected, I have not been back to this blog much since my last post a couple of months ago. Alisa's progression has progressed unfortunately, and her speech is really suffering. This is part of the brutality of #ALS - it just keeps taking things away from you. As one of our friends said, we have to keep "riding the waves of loss." Quite accurate, but some are worse than others. For my dear Lis, speaking is something she was good at, and always had lots of nice things to say to people, so I can't imagine how difficult it is to have her preferred form of expression curtailed so drastically, especially in the devastating drip, drip, drip fashion that it happens in #ALS. We are just over a year in from diagnosis (1/13/22), which is both hard to believe, and depressing, especially looking back at how she was a year ago, speaking reasonably well, walking well, etc. A picture came up on my phone of her and Bella up on Mt Toby right about a year ago, with...