Living Well with ALS - a column by Dagmar Munn

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…

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…

Among the many challenges I experienced during my early months with ALS was its effect on my perception of time. Before ALS, I pretty much meandered through life in full confidence that many more years lie ahead of me. But with the onset of ALS, all that changed.

I’m one of those folks who follow daily life routines. Simply put, it’s a series of predictable habits that bring structure to my life and help me maintain a positive attitude while living with ALS. But try as I might, my daily routines did not survive the past…

With 2017 quickly coming to a close, I decided to learn a little more about my readers and which of my posts were the most popular. While scrolling through the numbers I identified my most-read posts and the posts that drew the most comments. I learned that ultimately, we…