Some days, my motivation just gets stuck. Even though I’ve got interesting plans and projects to do, I can’t get started on any of them. The reasons why can include not getting enough hours of sleep the night before, being caught up in the latest news cycle, or simply reflecting…

The phrase “stay in your lane” is often posted on signs to help motorists drive through a construction zone. It’s also a basic rule when swimming side by side in a race with other competitors. In my life with ALS, I use one of the other meanings of the…

Can it be that we were cheering on athletes at the Olympics only a few months ago? Where did the summer go? Looking back, I realize I spent most of my summer and early fall months distracted by the hoopla of world and national events, and now I’m exhausted. I’m…

Sometimes living with my ALS isn’t a matter of finding the right balance of effort and ease. At times, I have zero mental motivation to make the effort in the first place! And from the comments I read on many social media sites, other ALS patients have…

What are your plans for this year? What are they for next month? Will you do something you have always wanted to do? Will you do anything different from your usual way of life? After all, it is yet another new year and we want to have a happy…

Sometimes we all need a little help deciding whether to do something. I know I certainly do. That’s when I rely on what I call my “ALS bumper stickers.” They’re the latest addition to my ALS stress toolkit. The toolkit is a collection of strategies I use to maintain…

ALS is a life-changing diagnosis, and like many newly diagnosed patients, I was disappointed and frustrated at what felt like a standstill in medical progress against the disease. “If they can send humans into space, why can’t they cure ALS?” I’d lament, Now, 11 years later and with still…

Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…

To help me get through the ups and downs of living with ALS, I’ve created several mental games. Perhaps they’ll help you, too. For example, when life around me isn’t cooperating, I imagine I’m in a driver’s ed training film. When my body isn’t following orders, I tell…

For those of us living with ALS, every day can have a stressful event. The key, I believe, is to move through the event and, if possible, remember it with humor. I recently came across a quote from the movie “Slow West” that reminds me that…