Coping With Surprises in Life With a Rare Disease
I don’t like surprises. Almost every Christmas, my husband and I end up sharing what we bought for each other long before we find the gifts under the Christmas tree. Along the same lines,…
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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The need to make connections in the LEMS community
I’m a product of the 1970 and ’80s. We grew up with big hair, neon fashion, and the rise of music videos on MTV. I can remember sleeping on the floor of our family…
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How to Stay Safe Despite Physical Limitations
When my daughter Grace was 10, she requested a taser for Christmas. I’m not sure what prompted this request or why she felt the need for one. Regardless, she did not find a taser…
While You’re Being Thankful, Make Sure to Laugh a Little, Too
Traditionally, November is when we give thanks. With Canada and the U.S. celebrating Thanksgiving in October and November, respectively, it’s a season when many of us turn our attention to gratitude. That’s even true…
Anticipating Changes in LEMS Treatment as My Daughter Turns 18
Election Day last week in the U.S. brought new excitement to our home. A few weeks before that, we had discussed the issues and candidates in our home state of Florida. We usually don’t…
How EMG Testing Helped Confirm My Daughter’s LEMS Diagnosis
Last week, I wrote about the unexpected surprise of hearing Lambert-Eaton myasthenic syndrome (LEMS) mentioned on television. In that episode of “The Resident,” a majority of the dialogue centered around the decision…
Hearing Lambert-Eaton Myasthenic Syndrome on TV Was a Surprise
It always amazes me when I hear Lambert-Eaton myasthenic syndrome (LEMS) mentioned somewhere outside of our daughter’s neurologist’s office. Most people have never heard of this particular disease. Oftentimes when I’m asked what…
How Swimming Helps My Daughter Improve Her Strength and Balance
My children learned to swim at a young age. My husband and I have lived in warm climates for most of our marriage, so it was only natural to teach our children to swim…
Facing the Uncertainty That Comes With Having a Rare Disease
I think most people struggle to thrive in uncertain times. I know that in my case, uncertainty makes me anxious and often impatient. When faced with uncertainty, what normally would be a small annoyance…
Embracing Our Differences Within the LEMS Community
When I started home-schooling my two youngest children, I was desperate for someone to give me a formula of what our school day should look like. What did I need to cover each day? …
Confronting the ‘Big C’ After My Daughter’s LEMS Diagnosis
The first statistic I heard after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14 was that 50% to 60% of cases are connected to another underlying disease,…
Putting Out the Fires That Flare Up Because of LEMS
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…
Rediscovering the Joy of Reading After My Daughter’s Diagnosis
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…