It’s time again to send our annual Christmas letter and picture card to our friends and family. Since my daughter could talk, I’ve kept a list of cute things the kids say throughout each year. I pick the best to include in our letter. When Sara was 2, we…
“All the world’s a stage, And all the men and women merely players; They have their exits and their entrances; And one man in his time plays many parts …” – William Shakespeare Some months back, I…
One of the first symptoms of ALS I experienced was a sudden weakness in my legs and feet. This meant that without warning, whenever I walked I felt as if I had stepped in a hole, and more than once I ended up taking a nasty fall. Even when I…
On Saturday morning, I lay cuddled next to my husband, Todd, in bed. I could feel his thigh muscles pulse against my leg, misfire after misfire. I wished I could will the fasciculations to stop. When I washed him and changed his shorts, I was struck by how thin his…
“Well I don’t know how to tell the weight of the sun, … How the home computer has me on the run, … Of all the Nobel prizes that I’ve never won, … Please be upstanding for the Mayor of…
During these final weeks of 2020, I’ve been reflecting on the various ways this world health crisis has affected the ALS community. One evolving activity that has held my interest ever since I included it in my post-pandemic predictions in a column last April is online ALS support groups.
“I am a rock, I am an island, And a rock feels no pain.” In 2020, there have been none of Paul Simon’s “rocks” to be found in the social circles that I inhabit. Everyone that I…
I cried as I listened to an episode of the “Everything Happens” podcast. Writer Samantha Irby described growing up with sick parents. When she was 9, her mom was diagnosed with multiple sclerosis, and her dad struggled with heart problems for years. They both died when she was…
“Put me in, coach, I’m ready to play today, Look at me, I can be center field.” John Fogerty’s homage to an aspiring baseball player is reminiscent of my pre-ALS relationship with nearly any game of skill. It was the rare…
As one of the moderators for the ALS News Today Forums, I get to welcome new members and learn a little bit about each person. Many of these new members are newly diagnosed patients. Besides wanting to learn as much as possible about ALS, they also tell me they…
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