Years before my husband was diagnosed with ALS, I coordinated a tutoring program in Milwaukee. Many of the children and teens I worked with lived with stress and instability in their homes and neighborhoods. For some kids, just consistently showing up to school and the tutoring program was an accomplishment…
Columns
Is It a Jinx or a Sphinx?
“You don’t tug on Superman’s cape, You don’t spit into the wind, You don’t pull the mask off the old Lone Ranger, And you don’t mess around with Jim.” Based on recent events, I might add…
Weeks after my husband’s ALS diagnosis, we were still in shock, but we mustered ourselves for a family outing on my 33rd birthday. We planned the day around our baby’s nap schedule. With only one weak arm, my husband, Todd, drove me, our 4-year-old daughter, and 11-month-old son to the…
“The world will little note, nor long remember …” These words of Abraham Lincoln were his prediction that the speech containing them would have no permanence. Ironically, the Gettysburg Address would become one of most enduring elements of Lincoln’s legacy.
Taming My Runaway Thinking
Racing thoughts, runaway thoughts. Whatever you call ’em, I caught ’em. Yup, a case of full-blown, out-of-control, runaway thoughts. I hadn’t had them for years — not since the day I was told I had ALS. And then, like most newly diagnosed patients, I spent weeks and months imagining the…
Snapshots of Life With ALS
“Thank God I didn’t have to cough this weekend,” my husband, Todd, said after his parents left. They had been visiting us from Minnesota. A couple months ago, his mom called as I was returning from the grocery store. “Todd can’t breathe. He needs help,” she said. He was doing…
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…
“Oh, I used to be disgusted and now I try to be amused.” Those lyrics from the Elvis Costello song “(The Angels Wanna Wear My) Red Shoes” are an apt description of the journey that my perspective…
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…
Recent Posts
- ALS Network, ALS United calling for ‘bold’ research proposals for funding
- Study finds common medications that could be repurposed to treat ALS
- New eye imaging approach may help distinguish ALS from Alzheimer’s
- After 15 years as an ALS caregiver, I’m still learning from others
- Early PrimeC use slows ALS progression, reduces complication risk