Living Well with ALS - a column by Dagmar Munn

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…

Living with ALS certainly has its challenges, which lead many of us to rely on workarounds. These are creative, temporary solutions that solve an everyday problem; I first wrote about mine in “The ALS Workaround Dilemma.” But the key word here is “temporary,” because workarounds run the risk…

I’ve always believed that I was open to new ways of doing things, but having ALS has put me to the test. My pride and a little denial have often gotten in the way of my seeing the obvious solutions to a problem. Thank goodness an “aha” moment came…

Sometimes we need a nudge to help us get over a mental funk and back into the swing of life. My nudge came from a pair of white ankle-foot orthoses (AFO) with whom I had been having a love-hate relationship. Love ’em or hate ’em, they did end up becoming an…

Recently, I attended an “Ask the Experts” educational seminar sponsored by my local chapter of the ALS Association. It’s an annual event that presents current information on ALS-related topics and allows attendees to exchange ideas with fellow ALS patients. This year’s theme was “ALS clinical trials…

It doesn’t matter if you are a patient living with ALS, or the person who provides care, ALS can feel overwhelming. Too many changes, too many decisions, and our own energy ups and downs can make us want to throw in the towel and holler, “I give…

I have exciting news to share with you about a community addition to this site! The ALS News Today Forums, which launched today, is a space designed to give readers an easier way to connect , share comments, and ask questions related to ALS. It is…