During these past few months, like most folks I know, I’ve been watching movies — lots of movies. And by now, my wish list of titles is pretty well picked over. So, whenever a new release comes out, I jump on it, thinking “OK, Netflix, surprise me!” Well, I got…
When I was a child, my elderly great-aunt Martha joined my family every Christmas Eve to participate in gift opening. I felt bad that she only got one present while my brothers and I received so many. But she seemed happy with the pair of slippers or homemade ornaments my…
“Baby steps.” That was the advice imparted to Bob Wiley by his psychiatrist, Dr. Leo Marvin, in the movie “What About Bob?“ Wiley, portrayed by Bill Murray, has a perfect storm of maladies including perhaps bacillophobia…
Oh my! We’re still facing challenges brought on by the pandemic and most likely will continue doing so for some time. Right now I’m feeling the loss of being able to sit down with friends to chat and catch up on the little things in our lives. My many ALS…
After our second child was born — back when my husband, Todd, had an undiagnosed weak left arm — we purchased a used minivan. We found the van on Craigslist and drove two hours to purchase it. Six months later, Todd was diagnosed with ALS. We made plans to…
Nine months after my husband, Todd, was diagnosed with ALS, he entered a social media contest with a $100,000 grand prize to use to fulfill a dream. Contestants with the most votes advanced to the next round. Todd’s dream was to build a handicapped-accessible home near my parents. The home…
Recently, my husband and I experienced a staycation of sorts — we dined on two weeks of gourmet meals without leaving our home. Although it gave my husband-caregiver a much-needed break from meal preparations and was a nice change of pace for both of us, we wouldn’t do it again.
I found a walking buddy, and he’s teaching me how to live with my husband’s ALS. When my gym closed, I turned to cross-country skiing every day. When the snow melted, I took up Nordic walking around our fields. One day, returning from my walk, I went to check…
The lyrics to “God Shuffled His Feet,” a song by the Canadian band Crash Test Dummies, portray God as indifferent to our struggles. When he speaks of someone perhaps having “some strange disease,” the people…
Last week, I joined about 20 other ALS patients in attending an online meeting on Zoom. While the speaker scrolled through her slide program, I thought, “Wow, no parking lots! We’re all here and no one had to deal with a parking lot!” Maybe I should explain my negative association…
Get regular updates to your inbox.