Disaster preparedness, including stockpiling goods, owning and knowing how to use emergency equipment, and being aware of community resources, is lacking among amyotrophic lateral sclerosis (ALS) patients and caregivers, a recent Japanese study suggests. While patients who needed a ventilator were generally found to be better prepared during power…
After receiving so many positive comments on my last column, I thought it would make sense to give you some real-time information on my respite care stay, which is how the issue of certified ALS caregivers — the topic of that column — arose. I am one…
My husband, Todd, and I used to enjoy heading out on adventures, whether it was driving an hour to Chicagoland for an architectural tour of homes designed by Frank Lloyd Wright or flying halfway around the world to Taiwan and visiting a traditional tea house in a small mountain village.
In the Jan. 23 episode of “The Happiness Lab” podcast, Simone Stolzoff, author of the book “The Good Enough Job: Reclaiming Life from Work,” argues that we should stop hunting for the perfect job. Stolzoff and podcast host Laurie Santos, a psychology professor, discuss how society’s view of work…
“I don’t know what that is.” “I don’t know how to use that.” These are a couple of the statements that ALS patients do not want to hear when a medical professional walks into the room. As a matter of fact, no patient wants to hear them. Having spent…
On my daily walk, I take a detour from the field and into the woods because I’m on the hunt for birch bark and pine cones. It’s the season for collecting natural accents to use on my Christmas wreaths, which I’ll start making in a month. I sell them…
After college, I worked at an after-school youth program. I loved my work, and I made ends meet on my modest salary. I met and married my husband, Todd, who had a good job, so when we started a family, I decided to stay home with our children. I…
Often, as we discuss the ravages of disease, we give short shrift to one of the most vital aspects of debilitating illnesses like ALS. We offer our sympathy, prayers, money, remedies, and sentiments, which are all very positive and appreciated. What’s missing, though? A little imagination and a broader…
This past weekend, my husband, Todd, coached our son, Isaac, in making and installing a shelf in our daughter’s bedroom. It was a corner shelf with an obtuse angle, so they had to measure the angle, cut the boards to fit, and join the two halves of the shelf together.
“Are you ever going to go faster, Mom?” my 12-year-old son, Isaac, asked earlier this summer when I caught up to him at the bottom of a hill, where he was waiting for me. I enjoy mountain biking with him. At times I ease off the brakes on a smooth…
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