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I’m often asked by others in the ALS community for tips and insight from my past 10 years of living with ALS. While I am grateful for both making it this far while maintaining most of my physical abilities, I am by no means an expert. ALS symptoms differ…

When I met my husband, Todd, I was a renter, so I didn’t need to worry about home maintenance. I drove a 15-year-old Oldsmobile Cutlass Ciera, and I didn’t do much vehicle maintenance beyond having the oil changed. I put gas in the tank, and I figured as long as…

If the sky above you, Grows dark and full of clouds, And that old north wind begins to blow, Keep your head together, And call my name out loud, Soon you’ll hear me knocking at your door. ……

As I hung up the phone following a short chat with my neurologist, an old saying bubbled up in my mind: “You don’t know what you’ve got until it’s gone.” What was I bemoaning the loss of? My ALS clinic. I’ve been missing the interaction, the idea-sharing, and being…

It’s hard to find guides for the grief that accompanies a long, progressive terminal illness. Loss is often talked about as an event that happened in the past. It’s difficult to process grief when you know you haven’t reached the bottom yet, when the losses keep coming. In Brené Brown’s…

“Oh yes, I am wise, but it’s wisdom born of pain. — “I Am Woman,” Helen Reddy “Gain from pain” is not a new concept. The notion can be traced back several millennia to “The Ethics of the…

I’ve always believed in the importance of having heroes and role models to help me cope with ALS. In fact, I keep a list of names in a special folder titled “ALS Inspiration.” But most of the people on my list don’t even have ALS. What they do have in common…

My mind can easily spiral into anxiety if I let it. I got selected for jury duty. Along with my request to be excused because I’m my husband’s caregiver, I included doctors’ notes stating that my husband, Todd, is paralyzed. Apparently, that wasn’t enough, because I received a second round…

“Pleased to meet you, hope you guess my name.” — Keith Richards and Mick Jagger, “Sympathy for the Devil” Last week, I experienced an abysmal customer service episode. Lasting the better part of a full workday, the bitter crescendo left…

Lately, I’ve seen an escalation of messages urging me to protect myself from hackers, scammers, and other potential identity thieves. But there’s one identity thief that’s always on my radar: my ALS. That’s because the ongoing symptoms of ALS challenge the very essence of my sense of self. I’ve managed…