ADAPTATION IS KEY As I grow older, I've learned that adapting is not only a key to dealing with ALS but it's also very much a key to life and happiness. Add that to managing...
ALS
Ten Days of ALS – Day Three
THE SYSTEM IS BROKEN Before I get into my musings on this topic I'd like to first share a story that can hopefully provide a bit of context about things in general. An...
Ten Days of ALS – Day Two
HOW THIS GOT STARTED In 2010 we were living in California and we were as happy as we could be. One day Brian started having trouble with his hands. He had trouble gripping...
Ten Days of ALS – Day One
BEFORE ALS Everyone with ALS was once someone without it. That being said, I decided to kick off my Ten Days of ALS talking a bit about Brian and our life before ALS. Many...
ALS Awareness Month 2020
May is ALS Awareness Month and for the first time in ten years, it feels different. For the first time, it feels like you can relate. That you know what it's like to have...
Being an ALS Caregiver during the COVID-19 Pandemic, Part 2
When the Covid-19 pandemic first started becoming more real I wrote a post about being an ALS caregiver during this crazy and uncertain time. I really want to try and keep...
Being an ALS Caregiver during the COVID-19 Pandemic
EARLY STAGES IN THE U.S. What a time to be alive. Everything just feels so weird right now. And that's because it's not something we've felt before. Pandemic. It just seems...
None of This is OK – Living with ALS
Fuck ALS. I know you might not like "the F word". Cursing makes you uncomfortable. It's not necessary. I get that. I understand that cursing isn't something that has to be...
A Way to Get PALS “Outside”
At this point, Brian lives in his power wheelchair and doesn't really like to be moved around because it stirs up his secretions. We moved our bed into the living room and...
Dear ALS Caregiver
As we enter the 10th year battling ALS, I decided to write a letter to myself as a new ALS Caregiver. There are so many things I wish someone had said to me early on. Dear...
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