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Knitting My Way to a Solution for the Chills

Last week, I had the pleasure of joining the Fox Valley/Lakeshore ALS Virtual Support Group in Wisconsin as their guest speaker. We had fun discussing ways to reduce stress during the ongoing crisis while we live with our ALS. During my presentation, I shared one strategy…

Searching for a New Map

“I keep pulling it out — the old map of my inner path,” Joyce Rupp writes in her poem “Old Maps No Longer Work.” I was introduced to Rupp’s poem on a spiritual retreat five years ago. Her words resonated with me then, five years past my husband…

Let’s Go to the Movies

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…

Expanding World, Shrinking World

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…

Taking Baby Steps in Search of a Cure

“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…

Checking In on My Life With ALS During Lockdown

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…

Making Mental Notes While He’s Still Here

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…

Learning How to Help from 5 Phone Calls

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…

My Cuisine Adventures While Living with ALS

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.