Columns

Our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) in July 2019, when she was just 15 years old. To say this diagnosis changed our lives is an understatement. Grace’s health deteriorated rapidly. We had to move to be close to her doctor. My husband changed…

So many people in this world live isolated lives. Add in a rare disease and we can feel very alone. I’m grateful that we in the Lambert-Eaton myasthenic syndrome (LEMS) community have one another. We come from all walks of life and live around the globe, yet despite…

Life changed when our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). As her health declined rapidly and drastically, it was hard to watch her lose mobility and control of her body. But over time, her health rebounded. After finding the right treatment, Grace regained muscle…

My daughter Grace was in fifth grade when I got a call from the school nurse. She asked me to come to the school to get Grace because she was complaining of a headache. Once at home, Grace explained that, along with the headache, she was seeing sparkles. I assumed…

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 traumatic brain injury (TBI) forced her to give up writing so she could focus on healing.

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 fortunate to live next to a nature preserve. It’s not unusual for us to see a…

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.