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.
As I approached the one-year anniversary of my husband, Todd’s, ALS diagnosis, I wrote in my journal: “I want to be happy, healed, and whole again. But the grief that I am experiencing is not something one can easily get over.” I read books such as “Getting…
It’s Thanksgiving Day tomorrow in the United States. Unsurprisingly, the evolution of its celebration has been shaped by our nation’s cultural dynamism. Rooted in religious ritual imported by the initial European settlers, it was institutionalized by the constitutional congress, with specific…
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…
After my husband Todd’s ALS diagnosis, he said, “We need to sell the house and move near your parents.” He anticipated that their day-to-day support in rural northern Michigan would be more important than being near an ALS clinic in Milwaukee, Wisconsin. We appreciated the convenience of seeing Todd’s…
“We have met the enemy and he is us.” One day recently, I became incensed. My anger was not your garden-variety ire; I experienced the kind of rage that blinds. The cause of my eruption was the coincidental convergence of one…
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 went parasailing during a vacation in Florida 10 years ago. I talked my brother into going with me, because my husband, Todd, wasn’t feeling up to it at the time. He had a weak left arm, but we didn’t know then that he had ALS.
In Mark Twain’s book, “A Connecticut Yankee in King Arthur’s Court,” the protagonist, Hank Morgan, is ridiculed during a roundtable assemblage for his strange appearance and dress. He is subsequently sentenced to burn at the stake. Except for…
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…
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