Columns

When I learned I had amyotrophic lateral sclerosis (ALS), my whole world changed. My husband’s world changed, too, as he suddenly found himself in the role of being my caregiver. For some ALS patients and caregivers, the new responsibilities that follow a diagnosis begin almost immediately. Ours followed a slower…

“How are things going?” a friend asked. I explained that I have been concerned about my husband Todd’s breathing. He’s been waking up with headaches, which could be a sign that his breathing strength has declined due to ALS. He might benefit from noninvasive ventilation, but doesn’t want…

“Well I don’t know why I came here tonight, I’ve got the feeling that something ain’t right. I’m so scared in case I fall off my chair, And I’m wondering how I’ll get down the stairs. Clowns to the left of me! Jokers to the right! Here I am stuck…

“Hurry! I’m having a pee-flex,” my husband said as I put on disposable gloves. I grabbed the urinal and held it for him. Todd invented the word pee-flex to describe the sudden urge to go once he drives his wheelchair into the bathroom. He is paralyzed from ALS, so…

“As I was walking down the street one dark and dreary day, I came upon a billboard, much to my dismay. The billboard was all tattered from the storm the night before. The wind and rain had done their work, and this is what it bore: ‘Drink Coca-Cola cigarettes, smoke…

Last week for me, the letters A-L-S stood for “A Lot of Socks.” I tackled a project that would make living with amyotrophic lateral sclerosis easier for me right now, for my future self, gave me peace of mind, and yes, it involved socks. It all began when I was…

Eighteen years ago, Todd and I joined our lives in marriage, vowing for better or worse, in sickness and in health, and we went forward together as friends and allies. Jesus taught that joining in marriage is “two becoming one flesh.” Indeed, I felt oneness with Todd. We liked…

“You say you got a real solution, Well, you know, We’d all love to see the plan. You ask me for a contribution, Well, you know, We’re all doing what we can.” John Lennon’s lyrics from the song “Revolution” by the Beatles capture some of my concerns regarding the…

Like most folks who live with ALS, I tend to get stuck in the shortsighted day-to-day management of my symptoms. Over the years, I’ve developed several strategies that help me change my mental focus from a short view to a longer one in which I’m open to the possibilities of…

My husband, Todd, began monitoring his breathing after he was diagnosed with ALS. We were told that he’d need to have surgery to insert a feeding tube before his forced vital capacity (FVC) dipped below 50%, and so he had it measured every few months at an ALS clinic.