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…
Sometimes I’ll pick up a magazine in a grocery store checkout line and see a marriage article about sex or the division of household chores. I’ll sigh wistfully. Healthy people problems. In “Flying Without Wings,” Arnold Beisser describes his journey to become a psychiatrist, which was nearly impossible after…
“I think of a hero as someone who understands the degree of responsibility that comes with his freedom.” —Bob Dylan Recently, I had the pleasure of participating in the annual Southwest Florida Muscular Dystrophy Association fundraising gala, “Toast…
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…
My husband, Todd, recently asked me, “What do you think our life would be like if I hadn’t gotten ALS?” I’ve done this mental exercise before, but never with him. He’d be working and trying to advance his career. Our two kids would be in school. I might be working…
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…
A few months after Todd’s diagnosis, our ALS clinic put me in touch with a woman who was further down the road that I had just begun. Similar to our situation, her husband was diagnosed in his late 30s when they had a newborn son. I spoke with her on…
ALS is now affecting my husband’s breathing. On occasion, Todd’s lungs fill with fluid and he needs me to give him an assisted cough, just as his physical therapist taught me to do. He stacks his breath as I count to four, and I push on his abdomen below…
