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…
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…
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…
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…
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