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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,…

I don’t know about your email inbox, but mine often overflows with news alerts. I can usually buzz through them fairly quickly, but last week, three items caught my eye and had me clicking through to learn more. Exercise is safe for ALS patients Until my ALS diagnosis…

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…

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…

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…

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…

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…

Part two of a series. Read part one here. To help you get started with creating your perfect treatment plan for depression, I will share my experience with two types of therapy that have been especially helpful as I learn to cope with living with ALS. I…

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…

Quality caregiving and care-accepting depend on effective communication between parties. It’s a delicate balancing act, especially when the caregiver is a spouse or family member. With traditional roles reversed, misunderstandings can happen and feelings easily get bruised. Giving care and accepting it is challenging enough without adding…