Would it surprise you to learn that I check my cellphone zero times a day? All around me, people are texting, emailing, chatting, and checking social media. Me? Nada. My eyes are forward, watching the world. I’m embracing “the joy of missing out” — a state of mind caused by…
Living Well with ALS - a column by Dagmar Munn
A few years ago, during an ALS clinic visit, the topic of voice banking came up. I was assured that it was a way to help me to prolong my ability to communicate. Banking my voice? I’d never heard of it. So, I left with instructions to check…
Columns
Chasing Down My ‘Someday-itis’
My husband is one of those people who attacks projects from beginning to end with a laser-like focus. Me? Oh, I get things done — well, eventually. Distractions, the tendency to overcommit plus a curiosity to follow “the next big thing” all contribute to my meandering approach. Really,…
In 2010, a few short months after my ALS diagnosis, I found myself having to rely full time on a rollator. I’ll be the first to admit I wasn’t happy at all. But now, nine years later, it’s become my ever-present silent buddy, and I can’t imagine my life…
Columns
How to Avoid the Sticky Points
Lately, I’ve been on alert trying to avoid sticky points. These are what I call particular points in my day when I’m most vulnerable to distractions. Because if I give in to the distraction, I end up lost in negative thoughts and I weaken the positive mindset I’ve created to…
Summer is finally here, which means it’s time for outdoor events, fun trips, and visits from family and friends. I look forward to each and every one of these memory-filled activities, especially now that I live with ALS. But even just a few days of travel or entertaining, combined…
Where were you on Feb. 28? Did you know that it was Rare Disease Day? Don’t feel bad if you missed it because I did too. But I shouldn’t have. Because Rare Disease Day, along with the international events around it, represented a major change in perspective toward finding…
ALS and efficient are two words not often used in the same sentence. But to me, they are a perfect pairing. Mention “ALS” and it’s easy to think slow, clumsy, and low energy, while “efficient” can describe quick, streamlined, and well-organized. I’ve combined the two into what I call…
Shortly after my doctor told me I had ALS, I faced the daunting task of sharing the news with friends and family members. I hemmed, hawed, and hesitated for many reasons, but my biggest challenge was confronting the reality of my diagnosis. I knew that when I told others…
Although each patient faces a different journey with ALS, we all share the memory of the moment when we received our diagnosis. When I was told I had ALS, I expected to be assured not to worry and that I’d be back to normal life in no time. Rather…
Recent Posts
- Mourning the loss of a leader, friend, and advocate for women with ALS
- Developer to test ALS therapy with help of Mass General’s MyMatch
- A story of a family’s loss offers guidance amid my grief with ALS
- MDA 2026: Insmed launches Phase 1 trial of INS1202 gene therapy for ALS
- Holding the line: Why I’d keep my ALS progression exactly as it is