Columns

“I think of a hero as someone who understands the degree of responsibility that comes with his freedom.” —Bob Dylan Recently, I had the pleasure of participating in the annual Southwest Florida Muscular Dystrophy Association fundraising gala, “Toast…

Do you have an ALS role model? I do. I have a whole collection of ALS role models, and each one helps me power through my day. I’ve always believed in the importance of a role model; someone whose success or behavior sets an example for me to follow. Someone…

My husband, Todd, recently asked me, “What do you think our life would be like if I hadn’t gotten ALS?” I’ve done this mental exercise before, but never with him. He’d be working and trying to advance his career. Our two kids would be in school. I might be working…

We all know there’s no cure for the common cold. But let it be known that you have a cold, and suddenly everyone’s an expert. They’ll share advice, home remedies, and their own versions of a cure. It’s the same in the ALS community, where our holy grail is also…

A few months after Todd’s diagnosis, our ALS clinic put me in touch with a woman who was further down the road that I had just begun. Similar to our situation, her husband was diagnosed in his late 30s when they had a newborn son. I spoke with her on…

ALS is now affecting my husband’s breathing. On occasion, Todd’s lungs fill with fluid and he needs me to give him an assisted cough, just as his physical therapist taught me to do. He stacks his breath as I count to four, and I push on his abdomen below…

About a week after my initial ALS diagnosis, the crippling fog that it had produced lifted enough for me to seek a second opinion. The appointment took place at the neurology department at the University of North Carolina…

Before my husband, Todd, got ALS, we had minor problems, but we were full of hope. We had a small baby so I wasn’t getting much sleep, but I knew that things would get better. Todd was sometimes frustrated with his work, but he hoped to be promoted. Our obstacles…

From time to time, a comment in response to one of my columns reveals that the commenter has lost someone to ALS. The first time it happened, I paid it little mind. Subsequent occurrences aroused my curiosity as to why a survivor would continue to thoughtfully remain current…

In last week’s column, I wrote about a gala banquet that I recently attended. As the event approached, I worried about what I would wear and how others would react to my mobility scooter. But my greatest concern was that I was one of the evening’s honorees. The…