This time each year, our home in Florida is filled with a palpable excitement as summer quickly approaches. The school year is winding down, our days are growing long, and cool air wafts in through our screen doors and windows. Soon it will be too hot for open windows. But…
Note: This column describes the experiences of the author’s daughter with Mestinon (pyridostigmine). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. A lot can happen in four years. In the United States, students usually get a high…
Our family has had the opportunity to live in some pretty incredible places, thanks to the U.S. Navy. One of our favorite places to live was La Maddalena, a town in the Sardinian islands west of Italy’s mainland. La Maddalena holds a special place in our hearts for many…
Every now and then, I have one of those days when nothing goes right. The unexpected happens and throws off the whole day’s routine. I had one such day last week. That particular morning, I slept through my alarm, only to wake late and find we were out of coffee.
I remember the moment I realized our daughter Grace had Lambert-Eaton myasthenic syndrome (LEMS) like it was yesterday. It was a hot, summer day in Florida. I had sequestered myself on our outdoor balcony to look through her medical chart. I hadn’t yet heard from Grace’s doctor after he’d…
I have trained myself to look for the good in situations throughout my adult life. It’s not always easy. When my daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), I never thought I’d see good come from it. However, in time, good things have happened directly because…
I vividly remember trips to the library as a young girl when a research paper was due. Once there, I’d trudge to the reference section and spend hours hunting for answers and information from encyclopedias, periodic journals, and various books. Once I gathered the information, I’d type up my research…
The World Health Organization considers a disease rare when it strikes fewer than 65 people per 100,000. Here in the United States, a disease is considered rare when fewer than 200,000 people are affected by it. Looking at those numbers, most people feel the odds are pretty good that…
Parenting comes with the danger of holding on to a lot of regret. As our kids grow up and move into adulthood, we can fall into the trap of blaming ourselves for all kinds of things they encounter. That was definitely the case when our daughter Grace was diagnosed…
Change is inevitable. Life won’t look the same tomorrow as it did yesterday, that’s for certain. Those of us in the Lambert-Eaton myasthenic syndrome (LEMS) community know that all too well. We understand what it feels like to have our world upended by a rare disease diagnosis. When…
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