When my girls were 10 and 12, the Navy moved our family from the warm climate of Florida to the shores of New England. We embraced Connecticut wholeheartedly and couldn’t wait to see snow.
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Before I started writing my column, “Stretcher-Bearers,” for this website, Dawn DeBois wrote the column “LEMme Tell Ya” about her journey with Lambert-Eaton myasthenic syndrome (LEMS). In September 2020, a…
As I grow older, I’ve come to love waking up before dawn. I often sit on my back porch sipping a steaming cup of tea while the world comes alive. Here in Florida, we’re…
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…
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…
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…
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 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…
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…
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…
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…
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…
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…
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