Columns

I remember the first time someone asked me, “What is ALS?” It was an awkward moment and the question caught me completely off guard. Why? Because only a few months earlier I had received an ALS diagnosis and was searching for the answer to that very question myself. “Um…

“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…

I filled the last page of another journal and then reread some of the entries over the last year. I had written about the fear I felt when my husband, Todd, who has ALS, stopped breathing and I had to restart his lungs; the feelings of sadness…

I’ll admit that because I live with ALS, some of my past “Human vs. Automation” experiences have been, um, less than perfect. Touchpads that open automated doors don’t always work for me, and voice activation software doesn’t recognize my commands. But now, I have a new sense of…

Family fun has gotten harder to come by since my husband, Todd, was diagnosed with ALS and the disease has progressed. Initially, Todd could still walk, but his legs tired easily, so we needed to pace ourselves. It got increasingly difficult to go out as his muscles weakened, but…

I’m excited to share good news about the growing access by ALS patients to the benefits of mindfulness and meditation. As readers of this column likely know, I’ve been on a quest to increase awareness in the ALS community about these wonderful mind-body practices. Being mindful…

I remember the times before ALS, when after a day away from the house at work or running errands, I’d drive home in anticipation of seeing my late husband Jeff’s blue pickup truck in the driveway. Jeff and I would often arrive home at about the same time each…

My husband, Todd, and I had a stressful night last week. While his nighttime caregiver was getting him ready for bed, Todd felt a rattle in his chest. He hoped that it would settle down once he was in bed. He’s often able to clear his lungs himself…

Shortly after I was diagnosed with ALS, I began to notice my reflexes acting kind of wonky. Pre-ALS, thanks to years of practicing yoga and tai chi, I considered myself a relatively calm and relaxed person. But now, any sudden loud noise or unexpected tap on my shoulder had…

Have you ever thought about what a single breath means to you? What you can do in one breath? What you can say with one breath? What or whom you can see during one breath? We who suffer from respiratory problems give considerable thought to these questions. On three occasions…