Ebbs and flows seem to come with a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). I’ve equated that diagnosis stage to putting out a fire. Everything else in life seems to halt so that the fire can be put out. Finally, the fire is smothered as a diagnosis is…
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…
One of the most consistent sources of joy in my life has been reading. So many of my childhood memories are wrapped up in stories. I remember reading my favorite book, “Wendy and the Bullies,” by Nancy K. Robinson, over and over again in the fourth grade. Something…
If there was a motto to be found among the Lambert-Eaton myasthenic community, it would be this: “When life gives you LEMons, make LEMonade.” This refrain encourages us to take the bitter parts of life and make something sweet out of it. The bitterness of a rare disease…
We have all been thrown into the world of rare disease with varying circumstances. We walk different paths in regards to treatment and medication. However, because of the nature of Lambert-Eaton myasthenic syndrome (LEMS), most who have it have spent some time in physical therapy. Even…
We are all on a journey in this rare disease world. Whether we have Lambert-Eaton myasthenic syndrome (LEMS) or care for a loved one who does, our lives have been touched by the debilitating and oftentimes life-changing symptoms brought on by this rare disease. Those in our community…
Watching a loved one suffer is unbelievably hard. Watching your child suffer and lose function is practically impossible. In my view, suffering and heartache were never meant to be part of our story. Yet here we are. Each of us has extremely hard parts in our stories. In my life,…
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 toward cooler weather, but instead the return of the new school year. The heat and humidity…
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 in lieu of summer fun. Since our daughter Grace was diagnosed with Lambert-Eaton…
“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 hospital for her biannual Rituxan (rituximab) infusion. This treatment has proven very effective in…
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 like in 2020, the world is still different than it was. Our new reality includes frequently…
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 you toward that goal. Some of the best parenting advice I received as a young mom…
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 14, everything else in life was seemingly pushed aside. Instead of having a multidimensional life, we…