Switching doctors brings unexpected challenges for my daughter
Reading is one of my favorite pastimes. Some of my earliest memories are sneaking away to the bedroom I shared with my sister and opening a new book. This love of reading has followed…
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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Managing the medical anxiety triggered by a single phone call
It started with a phone call. Our daughter Grace, who was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, was due for her annual neurology appointment. Things had been pretty quiet…
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Understanding the impact of stress on my daughter’s LEMS symptoms
Recently, my daughter Grace had an amazing opportunity to speak at Grace Under the Oaks‘ annual fundraising event. The Florida-based nonprofit offers horse therapy to adults and children with health challenges. Grace was…
Having the talk about what to do in case of an emergency
For the past two weeks, the elevator at my daughter’s school has been out of order. This complicates things greatly for Grace, who was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) when she was…
My search to find the ‘normal’ of life with Lambert-Eaton syndrome
One of the common symptoms of Lambert-Eaton myasthenic syndrome (LEMS) is muscle weakness, which, for many, causes problems with balance and gait. When our daughter Grace was diagnosed at age 15,…
Advocacy, community connections top highlights of recent conference
Recently, my daughter Grace and I had the privilege of attending the Muscular Dystrophy Association’s MDA Clinical & Scientific Conference in Dallas. It was an honor for us to represent the Lambert-Eaton…
Seeing major improvements thanks to long-term physical therapy
“Continuous effort — not strength or intelligence — is the key to unlocking and using our potential.” — Liane Cordes Physical therapy is often the first step toward renewed strength for those with…
Why it makes a difference to meet others with LEMS in person
Our daughter Grace is more than three years out from her diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). Until now, we’ve never met anyone in person who has LEMS. We’ve had wonderful friendships…
Falling was one of my daughter’s earliest LEMS symptoms
Last week, much of the northeastern United States was hunkered down for yet another nor’easter. As snow fell on our northern neighbors, here in the South, we were enjoying spring-like weather. Many of the…
Things I wish I knew after my daughter’s LEMS diagnosis
What is the first thing most of us did when the doctor mentioned Lambert-Eaton myasthenic syndrome (LEMS) as a possible diagnosis? We Googled it, of course. We know that, while the internet…
A mother’s messages of hope for those living with LEMS
March brings with it a bag of mixed emotions for this mama’s heart. In March 2005, our daughter was born to a mother who would never watch her grow up. She made the…
How rare disease awareness benefits the LEMS community
When I hear statistics about how many people are affected by the rare disease Lambert-Eaton myasthenic syndrome (LEMS), I’m overcome by the minuscule odds that my daughter Grace is one of them. How…
What I wish others understood about living with chronic illness
I’m often surprised by the general lack of understanding about chronic illness and rare disease, which reminds me just how important it is to share our stories. In doing so, we can combat…