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…
Columns
You might assume from reading my column over the past few years that I’m the model of positivity. I certainly try to be, but sometimes I’m not. Like many who live with ALS, I also have moments of frustration that open the door to me saying the…
Who Cares for the ALS Caregiver?
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.
An email that landed in my inbox the other day made me sit up and take notice. It was from a dear friend who is a care services coordinator for the ALS Association of Wisconsin. She shared a link to an article about a recent study on mindfulness and…
After my husband, Jeff, died from ALS in 2020, I found a video he’d taken by mistake right around the time of his diagnosis. He’d left his phone on and unintentionally recorded three minutes of his expression while sitting in our yard in the November cold, drawing on…
Last week at Walgreens, the cashier asked me if I got the senior discount. I’ve never been asked that before, but perhaps the stress of caring for my disabled husband has finally caught up to me. “How old do you need to be to be considered a senior?” I asked.
Does it matter what I choose to wear to my ALS medical appointments? I think it does, and my reasons might surprise you. Hopefully, once I explain myself, you’ll be convinced that what you wear will make a difference for you, too. Busy days, busy me In my pre-ALS…
I was an avid cyclist in the warm months, and in the winter months in Cincinnati, I was a league bowler. But in late 2009, I started falling as I released my bowling ball, which turned out to be because of weakness in my left leg. After seeing an orthopedic…
As summer comes to an end, we’ve recently passed a couple milestones. Our son, Isaac, celebrated his 13th birthday at the end of August. That was not something we thought my husband, Todd, would live to see when he was diagnosed with ALS. Isaac was only 9 months old…
Recent Posts
- My husband doesn’t get out much, but he enjoys following Comet’s secret life
- Keeping weight steady after tube feeding may help ALS survival
- Trial, error, and toe covers: Learning to adapt in life with ALS
- 5-year survival seen for over 40% of ALS patients on masitinib in trial
- Long-term air pollution exposure shows no clear link to ALS in UK study