Columns

On Feb. 17, a party was thrown in Atlanta, Georgia, in celebration of ALS patients and their caregivers. It was a chance to promote awareness about the ongoing needs of the victims of this treacherous and unrelenting disease. A party for ALS? Why not? Like the Ice…

After years of living on the edge of life and death with my husband’s ALS, I sometimes wonder if my body has quit reacting to stress in a normal way. Trying to squeeze in lunch before I ran to town for our 18-year-old daughter’s doctor appointment, I reheated…

Last week, I received an email from a newly diagnosed ALS patient asking questions about rollators (walkers with wheels). “I think it’s time I begin using one,” he wrote, “but I don’t want to. What can I do instead?” I immediately felt empathy and sympathy for his…

After a great deal of introspection, I decided for this month’s column to reflect on my life as it stands now. I wanted to write about it without being too ominous and dreadful, but I don’t think that’s possible. My love for music prompted the headline, because within the…

Last Friday night, I pulled a prescription bottle out of the cupboard, preparing to take my daily antidepressant — just one half-pill of the smallest dose, but that’s been enough to take the edge off and help me cope with the ongoing grief of living with my husband’s…

I’ve written before about how my late husband, Jeff, drew inspiration from Lou Gehrig, even before his ALS diagnosis in 2018. Today, I’m sharing how I now do the same through Live Like Lou, the ALS organization that bears Gehrig’s name. When I met Jeff,…

Since the point where my husband, Todd, needed a wheelchair because of his ALS progression, he’s had to navigate a less than perfectly accessible world. Todd is particularly challenged in our old community, which was built up long before the passage of the Americans with Disabilities Act in…

My introduction to ALS followed the same path as many other patients. After months of worry, I was relieved to finally receive a diagnosis. But that was the tip of the iceberg. I then had to understand what ALS was and how to cope with my symptoms,…

We often feel isolated now that my husband, Todd, is homebound because of ALS. He’s paralyzed with weak lung function, and it’s just too difficult for him to get out. So we were delighted when some friends planned a game night with us at our home last weekend. We…

One of my duties as a moderator for the ALS News Today Forums is to encourage new members to discuss their worries about living with the disease. I often find myself repeating the same advice over and over: that they be open to changing their perspective, that they…