How We Managed a Vacation, LEMS, and Summer Heat
These last days of summer blanket us with a thick layer of humidity and unrelenting sun. For us in the South, the end of summer is not marked by the turning of the seasons…
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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How a simple tendon reflex test indicated a major problem
No two stories are quite the same — particularly among those living with Lambert-Eaton myasthenic syndrome (LEMS). When our daughter Grace was diagnosed with the condition at age 15, I was desperate to…
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How Many of My Daughter’s Health Issues Are LEMS-related?
Turning the page on the calendar is a reminder that the new school year is quickly approaching. Like most parents, I race to squeeze in all the dentist and doctor appointments I’ve put off…
Being Kind to Others Can Make a Big Difference in Their Lives
“Kind words do not cost much. Yet they accomplish much.” — Blaise Pascal It’s that time of year again. Every six months, my daughter Grace and I make our way downtown to the children’s…
Our Daughter With Lambert-Eaton Myasthenic Syndrome Fights Off COVID-19 — Again
Our world has changed over the past few years. Around the globe, COVID-19 has altered the way we all live. While we are no longer required to stay indoors and close our shops…
Thoughts on How to Build Our Communities With Intention
I’m a student of living life with intention. That means living with the end goals in mind. Whether they’re career goals, financial goals, or relationship and parenting goals, knowing the desired outcome helps walk…
Steps I Took to Bring Joys Back Into Our Home
Living with a chronic illness, or caring for a loved one with a chronic illness, can often be overwhelming. When our 17-year-old daughter, Grace, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age…
We’re Taking Back All That We Lost to LEMS
When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), she was just 14 years old. At that age, kids are just beginning to flesh out their interests and desires for the…
How a Team of Specialists Diagnosed, Treated My Daughter’s LEMS
In the world of rare disease, it’s not uncommon for a patient to see multiple specialists. We all get quite adept at maneuvering through the red tape in order for a patient to…
Our Daughter’s LEMS Treatment Allows Us to Enjoy Summer Again
Summer is a few weeks away, and for those of us here in northeastern Florida, school is out and the temperature is rising. For the first time in years, I’m excited about the…
Weighing the Pros and Cons of Mestinon to Treat LEMS Symptoms
A rare disease diagnosis comes with many challenges. One significant challenge is the statistic that, according to some estimates, 90% of rare diseases don’t have a treatment approved by the U.S.
Why We’re Not Following Through on a Doctor’s Suggestion
I never thought much about the rhythm of our days until our daughter Grace, now 17, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14. Time seemed to crawl when my children were…
Knowing When and How Much to Share About LEMS
When our 17-year-old daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at the age of 14, we struggled to know how much to share about her health, and with whom. In some…