Living Well with ALS - a column by Dagmar Munn

Living with ALS can be an emotional roller coaster. However, I’ve found that when I round the bend and find humor in a situation, I’m sure to have a smooth ride ahead. Let me share my latest experience with you. Before ALS, my life was filled with moving.

A number of years ago, during my first year of learning to live with ALS, I promised myself that I’d show up every single day. At that time, my notion of showing up meant my goal was simply to get up, get dressed, and go sit in the…

Last week, I sat in the dentist’s chair filled with gratitude. I know. It’s bonkers. But I couldn’t help myself. I’m grateful knowing that if I have to live with ALS, it’s happening at a time when advances in technology and accommodations help me deal with its many challenges.

Decisions, decisions. When did making health decisions become so challenging for me? Well, it began after I was diagnosed with ALS. Scheduling annual health screens and medical treatments became complex decisions. Even purchasing a new pair of sneakers came with specific considerations. ALS has created a whole…

For a while now, I’ve been keeping tabs on the new technologies of virtual assistants, voice activation, and artificial intelligence (AI), especially its potential benefits for the ALS community. Some of it I’ve tried, with iffy results. Others, like AI, are on my wish list to help erase ALS…

I’ll admit I often worry if I’m being productive with my time and spending it wisely. That’s always been important to me, but it intensified the day I was told I had ALS. That’s when I heard the words “average life expectancy of two to five years” and left…

Six years ago, I was a new patient columnist for ALS News Today and wrote a column about how planning ahead helps me dine out with ease. But since that time, my ALS has evolved — and so have my plans. Instead of a rollator, I now…

Sometimes living with my ALS isn’t a matter of finding the right balance of effort and ease. At times, I have zero mental motivation to make the effort in the first place! And from the comments I read on many social media sites, other ALS patients have…

The other day, right in the middle of doing my daily chair exercises, I had to stop and turn down the volume of my mind’s inner critic. Because I was feeling a little sluggish and off balance, the voice in my head was absolutely convinced that my ALS symptoms…

Last month, a series of health issues bombarded me. They flew in on top of my usual ALS symptoms, causing me to become frustrated and ask, “Has this become my new normal?” But the advice I once received from a TV game show host rescued me — advice that…