During my first year living with ALS, I spent a lot of time researching and learning whatever I could about the disease. I came across long lists of medical equipment that patients like me could expect to use when ALS symptoms progressed. Books written by medical experts with…
Note: This column includes a mention of suicide. The most powerful force within people is the impulse to stay alive. Our survival instinct is so strong that we’re willing and inexplicably able to perform inhuman feats and take unimaginable risks. According to psychologist Abraham Maslow, survival is the foundation…
I feel compelled to seek out beauty and create a warm home, perhaps partly as an antidote to the difficulties we experience because my husband, Todd, has ALS. In a way, choosing to celebrate feels like a revolt against this devastating disease. A little over a week ago, I…
I’m always surprised how something simple and totally unrelated to ALS can change my perspective about living with the disease. For example, who knew that a bag full of unfinished knitting and crocheting projects could lift me out of a temporary mental funk, return me to feeling positive…
For my late husband, Jeff, and me, the most difficult and saddening aspect of his ALS progression was the loss of his voice. It was heartbreaking for both of us when he lost the ability to speak, also known as dysarthria, early in his condition. Much of Jeff’s…
Because life with ALS only gets harder as time goes by, prayer has felt increasingly unproductive for me. And after more than a decade of watching my husband, Todd, suffer from the disease, my prayers have been full of dismay. “God, are you there? Don’t you care? Don’t you…
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…
