Columns

Trying the Self-care Power Hour

When I look back at 2018, I feel pride. I fought my ALS hard. I forced myself to finish all my meals, even when I had zero appetite, to minimize weight loss. I made it to all my appointments, though I had to reschedule multiple times. I asked…

The ALS Game Board of Life

I’ve always looked forward to December; it’s a month filled with decorations, holiday gifts, and happy social gatherings. But this month eight years ago, I was diagnosed with ALS, so December now marks a sad point in my life as well. Like so many who live with…

Living Loudly and Laughing with Dysarthria

About four years ago, ALS impeded my speaking ability. Like more than 80 percent of all ALS patients, I now have dysarthria, or what I refer to as my “ALS voice.” It’s a slurred, slow speech pattern with a nasal tone and imprecise pronunciation of consonants. For…

Stuck in the Past? Here’s How to Reframe Your Future

Before ALS, whenever I thought about the future, I assumed my life would continue in a state of health and happiness, filled with lots of interesting activities. But in 2010, when I learned I had ALS, thinking about my future became very dismal and frightening. My mind…

Learning to Overcome My Biggest Fears

Living in the present has always been hard for me. I had such grand dreams for my future. It is hard to come to terms with the fact that I won’t go on a camel trek in the Sahara and spend the night under the most beautiful…

5 Things That Keep Me Motivated

Living with ALS presents many challenges, and staying mentally motivated is right at the top of the list. Being proactive to prevent our emotions from spiraling downward is easier than picking ourselves up after we’ve hit rock bottom. So, I want to share the five things I…

From the ALS Underground: The Last (Plastic) Straw

Have you heard the news? They’re banning plastic straws. Oh, darn! Just when I thought I had my ALS symptoms all figured out, perfect solutions in place, and solid daily routines to follow, a new curveball comes my way. The fact is I need straws! Not just any…

Why I’m Taking Exception to Stephen Hawking

Renowned physicist and author Stephen Hawking, perhaps the most famous ALS sufferer after Lou Gehrig, had his final book posthumously published on Oct. 16. In “Brief Answers to the Big Questions,” one of the answers Hawking offers is that there is…