Columns

“Reports of my demise have been greatly exaggerated.” —Mark Twain, in a letter to The New York Sun I spent the better part of November under the weather. I am always taken aback by the “uncommon” havoc the “common” cold can wreak on someone with the deficit baseline…

The new year is just beginning, and my email inbox is already overflowing with suggestions about the importance of setting goals and resolutions. But for many living with ALS, traditional goals and resolutions for self-improvement can feel empty and useless. In truth, most of us are just…

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…

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…

It’s hard to live in the present when the past feels as close as my shadow. I can’t stop thinking about the things I have lost. I’m nearly immobile, so the things I miss most are physical. I miss my feet touching the ground. I miss the…

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…

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…

When I learned I had ALS, my whole world changed, because on that day, I officially became an ALS patient. My husband’s world changed as well because, just as suddenly, he became my caregiver. I appreciate his taking on this challenging responsibility more than he’ll ever know.

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…

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…