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 for us in the rare disease community. We face many hurdles throughout the year; life with…
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 follow politics very closely, but we do educate ourselves in order to make informed decisions at…
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 to perform an electromyography (EMG) test in order to correctly diagnose a patient. As Lambert-Eaton…
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 illness my daughter has, I can’t get “Lambert-Eaton myasthenic syndrome” out of my mouth before…
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 to keep them safe during all of the water activities that were a part of our…
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 becomes larger than life itself. The Lambert-Eaton myasthenic syndrome (LEMS) community has had its…
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? How much time should I spend on math? Reading? Should I be doing science experiments? A…
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, particularly small cell lung cancer. This was a sobering statistic. It felt like the bad news…
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…
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…
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