Living Well with ALS - a column by Dagmar Munn

My husband is my primary caregiver. In fact, he’s been my only caregiver for the past 12 years that I’ve been living with ALS. That changed last week, when he needed medical tests that required an overnight stay in the hospital. That’s when we turned to a local home…

There I was, just living each day and minding my own business. I was following all the guidelines from the U.S. Centers for Disease Control and Prevention and wearing a mask everywhere I went, when all of a sudden, BAM! The COVID-19 virus found me. What followed were…

Newly diagnosed ALS patients often contact me and ask what I eat, what I do, and how I’ve managed to continue living with ALS for the past 12 years. I explain that there isn’t a magic solution; it’s a combination of following our doctor’s guidelines and learning how to…

This past week had me experiencing a roller coaster of emotions. I started with a feeling of pride while reading a recent study that validated my at-home voice therapy sessions. Next, curiosity drew me into investigating an innovative exercise program designed for Parkinson’s patients. Then, the week ended on a…

Sometimes the simplest things can help us the most. That’s what I learned in the months right after I received a diagnosis of ALS. Like most newly diagnosed ALS patients, I felt overwhelmed trying to find out what ALS was, not really wanting to know, and just wishing…

Ever since I was diagnosed with ALS in 2010, I’ve become sensitive to how ALS is represented in the movies. And I’ll admit to voicing my opinion about the topic in several of my past columns. So you can imagine my glee and pride when, six months…

I’m all in when it comes to celebrating milestones, and as many of my readers know, I’m a glass-half-full person. So when June arrived, I didn’t have to look far for my first reason to celebrate. Happy 5 years to me! This month, I’m celebrating the five-year milestone of…

I use many strategies to keep myself engaged in life and avoid getting pulled down mentally by my ALS. Being a “go-along” is one of those strategies, and it’s a perfect partner to showing up. But being a go-along — that is, accompanying my husband on his various errands…

My week has been full of projects, online responsibilities, physical activities, minicelebrations, and, oh yes, living with ALS. And while we ALS patients often complain that having our disease is a 24/7 challenge with no days off, I’ve found a way to give myself a mental break and enjoy…

Like many ALS patients who have swallowing issues, a condition known as dysphagia, I follow a regimen of what I can and cannot eat. I’ve accepted this as my new normal for a number of years now, so my emotional reaction to a friend’s recent social media post caught…