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…
Stretcher-Bearers — Lori Dunham
Lori Dunham and her family have lived all over the world thanks to the U.S. Navy. She has a degree in human resources but enjoys writing to encourage and inspire others. When her daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome at age 15, Lori sought community and encouragement from those walking a similar path. Lori’s mission in writing is to inspire and encourage those who find themselves in the role of caregiver. When she is not writing or homeschooling her two youngest, Lori enjoys reading, baking, and spending time with family. Currently they live in Jacksonville, Florida.
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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…
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.
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…