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…

“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…

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…

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…