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.
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…
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…
“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…
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…
Bereaved caregivers of people with motor neurone disease (MND) are at increased risk of prolonged grief disorder compared to the general bereaved population, a new study suggests. This indicates a need for greater support for bereaved caregivers of people with MND. The study, “Grief, depression, and anxiety…
A comparison of amyotrophic lateral sclerosis (ALS) among U.S. military veterans found those who lived the longest with this disease — an average of 16.3 years in more than 40% of those studied — had a younger age at onset but slower initial progression. Findings…
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…
