Columns

This time of year entails so much change. A new school year brings new teachers, friends, and routines. Stores are full of clothes, backpacks, and freshly sharpened pencils. For most of us, these kinds of transitions are welcome. But life also brings changes that are much harder to embrace. For…

Summer brings so much to look forward to — long days of sunlight, crunchy corn on the cob, vacations, and lots of family time. Because we live in Florida, it also means spending a lot of time at the beach. But summers have changed since our 21-year-old daughter Grace was…

There comes a time in every parent’s journey when they discover that the child they’ve been teaching has quietly taught the parent some of life’s most profound lessons. Watching my daughter Grace, 21, live with Lambert-Eaton myasthenic syndrome (LEMS) has provided an abundant opportunity for me to learn from…

Lambert-Eaton myasthenic syndrome stormed into our daughter’s life when Grace was just 15. Her friends were busy getting their driver’s permits, going to homecoming, and pursuing high school sports and various talents. They were going to parties and running on the beach. The contrast of Grace’s life was staggering.

Note: This column describes the author’s own experiences with Firdapse (amifampridine), rituximab, and Mestinon (pyridostigmine). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. From my earliest memories, I have always loved reading. As a child, I would spend my summers…

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. My daughter Grace started exhibiting symptoms of Lambert-Eaton myasthenic syndrome (LEMS) at age 15. Her freshman year…

When I was born prematurely on July 3, 1971, I weighed 2 pounds. My father said that my whole body could fit in the palm of his hand. So, it’s no surprise that I grew up familiar with the phrase “good things come in small packages.” I heard this from…

There were a lot of things I thought my daughter would never do again after her Lambert-Eaton myasthenic syndrome (LEMS) diagnosis. Grace was 15 when she was diagnosed, and her symptoms progressed rapidly. She lost the ability to play the sports she loved —  basketball, volleyball, and…

I am a mom to an adult daughter who has Lambert-Eaton myasthenic syndrome (LEMS). My daughter Grace was diagnosed at the age of 15, after nine months of falling, experiencing severe muscle weakness, and slurring her words. One of the most encouraging aspects of our LEMS journey has…

I often think about the phrase “no news is good news” when I haven’t heard from my son in a while. He lives across the country, and if he has a problem or needs to discuss something, I know he’ll call me. If I don’t hear from him for a…