I’m cautious about leaving my husband, Todd, alone because ALS has compromised his lung function. Todd can usually tell when mucus starts building up, so if his lungs are doing well, we’re comfortable with me running errands or attending events, as long as I’m not more than 15 minutes…
Although I’ve accepted the many beeps, alerts, and reminders that pop in and out during my day, I’ve also developed the habit of selectively tuning out a few of them. I recently learned that’s not a good habit to have, especially because I live with ALS and some alerts…
After my husband, Todd, was diagnosed with ALS, we moved from Wisconsin to my childhood hometown in the Upper Peninsula of Michigan, where we built an accessible home on a small corner of my parents’ 38-acre plot. As his ALS has progressed, I’ve had to stick closer and…
Recently, while at my ALS clinic, I had an enlightening discussion with my neurologist about the evolving understanding of the disease mechanisms of ALS. My doctor told me that for many years, the medical community viewed ALS as a singular condition with similar needs and symptom…
It’s been more than four years since I was a caregiver for my late husband, Jeff, who died of ALS in May 2020. Caring for Jeff is the hardest and scariest thing I’ve ever done, a fact that took me years to acknowledge out loud because I believed that…
After my husband, Todd, was diagnosed with ALS at age 39, he grieved the loss of his career and struggled to find a sense of purpose. When he was healthy, he’d hoped to take on new roles with his company and advance in management, but all of that became…
Amid the busyness of last month’s ALS awareness activities, I almost missed learning about the debut of a special movie that I was quite involved with during its early stages. My friend’s email opened with, “Were your ears ringing last night?” That made me sit up straight. She told…
Last January, my sister-in-law asked what our plans were for my daughter Sara’s high school graduation. She wondered if she, my mother-in-law, and my husband’s siblings should plan to come for the commencement ceremony or a graduation party some other weekend. My husband Todd’s breathing is so compromised due to…
As ALS Awareness Month comes to a close, it’s a good time to reflect on what we’ve accomplished, and perhaps more importantly, to find ways to both sustain and build upon our momentum as we search and fight for cures. For the past month, members of the ALS…
“Why are you bouncing?” my daughter asked me the other day as I prepared the medications and supplements that I give my husband, who has ALS, through his feeding tube. “It’s good for mental health,” I said. I’m always on the lookout for strategies to cope with the…
