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Fighting Another Cold While Managing ALS

This time around, I really, really tried not to let it happen. But it did. I washed my hands. I avoided all contact with suspicious “others,” and even hauled around a good-sized tub of disinfectant wipes. All my valiant efforts made the world around me a little cleaner,…

My ALS Hero: Stephen Hawking

For a man whose passion involved solving the mysteries of the universe, Stephen Hawking remained a mystery to many. First and foremost he was a British physicist, earning accolades and respect for his many contributions to science. Secondly, as a person living with ALS, his fame came…

My Week Living by the Numbers

I recently volunteered to participate in the Precision Medicine Program (PMP) of the ALS Therapy Development Institute (ALS TDI). I chose them because all of their funds go toward research, I like doing my part to help support the ALS community, and it allows me to participate…

With ALS, Self-care Is Vital for Well-being

As a newly diagnosed ALS patient attending an ALS clinic, I received a packet filled with various brochures and helpful information. Attached to one pamphlet I found a small card with the words, “Taking care of myself is not an act of indulgence, it is an act…

Tap into Your Inner Astronaut for Resilience

What do we have in common with an astronaut who is trying to survive while stranded on a hostile planet? Answer: We share the ability to tap into our resourcefulness, resiliency, and optimism. Perhaps you had a different answer to my question, especially if you have ALS or…

Making a New Friend with Help from a Boogie Board

Last week, I had the opportunity to attend a fun, social, gala event. Even though the occasion was filled with presentations and entertaining activities, my best take-home memory came from the special moment I shared with another attendee. It happened during a short lull in the program. Presentations…

Learning How to Speak (and Breathe) with Ease

Last month, I read a blog post from the ALS Association that made me sit up and pay attention. It told the story of a woman with ALS-related voice issues who learned specific vocal techniques normally utilized by actors to extend her ability to speak without assistive…