Living Well with ALS - a column by Dagmar Munn

The new year arrived bearing good and bad news. The good news is that 2020 marks my 10th year of living with ALS and I’m still here! The bad news is that I still have ALS. And, gosh darn, I thought we’d have a cure by now. But we…

Last year, while serving as a moderator for the ALS News Today Forums, I added more than 355 people to my circle of ALS friends. And in the short time since the launch of the forums, it has become a trusted space where members can ask questions, share…

Whether I’m at a social gathering or in the middle of a lighthearted chat in the grocery store, there’s no doubt about it — people can say the darndest things! This is particularly true when they’re stymied over what to say to me about my ALS. Don’t get me wrong.

Recently, I had one of those happy-sad moments. It was brought on simply because next week’s ALS clinic visit was rescheduled for January. I was like a kid waking up to snow and no school. Yippee, a free day! And yet a bit sad, because I’d have to wait…

When I was diagnosed with ALS in 2010, my doctor told me there was one medication available to help slow the progression of the symptoms. But there was no cure. I left her office with a prescription for Rilutek (riluzole), the first treatment…

I’m always pleased to read news of advancements in health and wellness for those of us living with ALS. But one statement always makes me laugh out loud: ALS patients shouldn’t exercise because they need to save their energy. More than 10 years of published research on exercise and…

Do you have an ALS role model? I do. I have a whole collection of ALS role models, and each one helps me power through my day. I’ve always believed in the importance of a role model; someone whose success or behavior sets an example for me to follow. Someone…

We all know there’s no cure for the common cold. But let it be known that you have a cold, and suddenly everyone’s an expert. They’ll share advice, home remedies, and their own versions of a cure. It’s the same in the ALS community, where our holy grail is also…

In last week’s column, I wrote about a gala banquet that I recently attended. As the event approached, I worried about what I would wear and how others would react to my mobility scooter. But my greatest concern was that I was one of the evening’s honorees. The…

Like many who live with ALS symptoms, I rely on a rollator. But when out and about and covering longer distances, I use a mobility scooter. My scooter is perfect, and I feel comfortable and confident going almost anywhere with it. Recently I crossed that almost off the list.