Our family has eclectic interests. These differences have been amplified by our middle daughter’s diagnosis of Lambert-Eaton myasthenic syndrome (LEMS) when she was 15 years old. That daughter, Grace, is a homebody. She’s always been content within the four walls we call home. Understandably, LEMS has intensified her…
Some memories are indelibly scored into the fabric of our being. For me, one such memory is the first time I pushed my daughter Grace in a wheelchair. She wasn’t yet diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at the time, but her symptoms had left her incapacitated.
We’re pet people in my family. Specifically, we love dogs. There’s nothing like coming home to a dog that is overcome with excitement at the sight of you. You can’t help but smile. Our current dog, a basset hound named Pumpkin, is a huge part of our family. Where we…
If you’ve recently been diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), you’ve come to the right place. Finding the LEMS community was life-changing for me, and I hope it will be for you, too. People usually don’t see a rare disease diagnosis coming. It’s like a freight…
Our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) in July 2019, when she was just 15 years old. To say this diagnosis changed our lives is an understatement. Grace’s health deteriorated rapidly. We had to move to be close to her doctor. My husband changed…
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…
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…
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