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…
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…
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…
ALS life involves a lot of waiting. We wait for people to help us with daily tasks, we wait for medical test results, and we wait for new ALS symptoms. But it’s the constant thoughts of despair and hopelessness that put us in what I call the ALS…
“… And up through the ground come a bubblin’ crude.” Like Jed Clampett of “Beverly Hillbillies” fame, the ALS Association in 2014 found itself in the unexpected circumstance of commanding assets beyond its wildest dreams. The national display of generosity, hope, and compassion dubbed the ice…
Life with ALS often feels like a crash course in adaptability but being adaptable doesn’t come naturally for many of us. However, whether you’re the patient, caregiver, or a family member, I believe you can learn how. Read on and let’s get started. In my pre-ALS life…
Get regular updates to your inbox.