As I travel down life’s highway with ALS, I’m always on alert for speed bumps. These are the metaphorical unknowns that pop up to challenge my resilience and positive mindset. Last week, one too many speed bumps came my way. It almost felt like a daily battle.
Last week was an exciting one for me: The website I created went live. Working on this special project was an entirely new experience; it turned out to be a challenging one, but from beginning to end it gave me a sense of purpose and value. Why did…
Do you speak with an “ALS accent”? I know I do. Fortunately, my family and close friends have learned to translate my slow, slurred words into meaningful conversation. However, to the Alexa device that lives in our back bedroom and the Echo Show that sits near me, my ALS…
Just mention the term self-care in any conversation and you’ll soon have many different definitions. It can be medical, describing how patients with a chronic disease are taught to self-manage their illness. Or self-care can mean the pursuit of personal wellness and a healthy lifestyle. And we’ve all…
Yup, it’s that time of year again — lag time! We’re in that weird space in time that’s just after all the holiday hoopla and before the “next big thing” comes along. It’s a time to catch up, reflect, and take a well-earned breather. And for those of…
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…
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…
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.
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