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…
Columns
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…
My heart ached for my kids after my husband, Todd, was diagnosed with amyotrophic lateral sclerosis (ALS). Isaac was 9 months old and Sara was 4. How would ALS affect them? I had no idea how to help them navigate our future. A year after Todd was diagnosed, I…
Shortly after emerging from the stupor that culminated in my ALS diagnosis, I was consumed with a zeal to learn all that I could about the millstone dangling heavily from my neck. Toward that end, I read everything I could lay my eyes upon, though some material was…
The View From (Down) Here
Like many who live with ALS symptoms, I rely on a rollator. But when out and about and covering longer distances, I use a mobility scooter. My scooter is perfect, and I feel comfortable and confident going almost anywhere with it. Recently I crossed that almost off the list.
Being a caregiver for a spouse with ALS is a heavy load, and at some point it becomes too much for one person to handle. When ALS took from my husband the ability to walk, I helped him move from his wheelchair to the bed. He would sleep most of…
A week ago last Sunday, I spent a portion of the day, as I often do, going to church. Well, not quite “going.” Owing to the challenges of readying and transporting me, I participate in worship via a livestream of the service. The…
If you’ve ever used the drive-thru lane to order a meal, then you know that the experience can range from easy to downright annoying. My husband and I have suffered through fast-talking order-takers with squeaky voices, but when we encounter the dreaded malfunctioning speaker, we know that we’re in for…
Recent Posts
- Tossing and turning over fears this ALS journey has come to its end
- Experimental ALS therapy QRL-201 shows potential to slow disease decline
- Worried about an inability to multitask? Here’s what helped me.
- MDA launches Shamrocks fundraiser to advance neuromuscular research
- Early-career ALS scientist wins first MDA Research Momentum Award