Family movie nights are great, but it’s a challenge to think of other things we can do together now that my husband, Todd, is paralyzed from ALS. I’ve long had a love-hate relationship with screens. I once envisioned myself as a mother who would encourage creative, independent play. My…
“One hundred bottles of beer on the wall, One hundred bottles of beer! Take one down, Pass it around, Ninety-nine bottles of beer on the wall!” That ditty was invariably sung, in unison, on all bus rides associated…
It all began as one of those typical online interactions when someone reaches out and asks for help. A gentleman contacted me via Facebook, explaining that his friend was recently diagnosed with ALS. He wanted to ask me a few questions. I noted that we were connected as “friends of…
I think a lot about how a parent’s ALS affects kids. Recently, an online friend lost her husband to ALS. She has small children and has been posting about their grief and the tender questions her kids have asked. It’s difficult enough for an adult to process the pain of…
“I can see clearly now the rain is gone. I can see all obstacles in my way. Gone are the dark clouds that had me blind.” Last week, the Jimmy Cliff version of that Johnny Nash composition played over…
I’m always on the lookout for self-care strategies that help me cope and live with my ALS. Recently, I added two quick and easy skills I call “self-care minis” to my ever-growing list. They help me stay cool and calm when I have a super busy day. Why do I…
After my husband, Todd, was diagnosed with ALS, we thought he would have at most five years to live. We started with only two major goals: take a family vacation together with our toddler and preschooler, and build an accessible home. We did both of those things within the…
“They’re gonna put me in the movies, They’re gonna make a big star out of me, … And all I gotta do is act naturally.” — Johnny Russell Two weeks ago, I referenced several catchphrases from…
“What the heck happened to that guy?” a young boy called loudly to a woman leading him and other preschool children across the parking lot. I was loading my husband, Todd, into the back of our accessible van, having just gotten our COVID-19 vaccinations. It was the first time…
“When she walks, she’s like a samba, That swings so cool and sways so gently, That when she passes, Each one she passes goes, ‘Ah.'” One day last month, if the “tall and tan and young and lovely” striking presence…
