Change is inevitable. Life won’t look the same tomorrow as it did yesterday, that’s for certain. Those of us in the Lambert-Eaton myasthenic syndrome (LEMS) community know that all too well. We understand what it feels like to have our world upended by a rare disease diagnosis. When…
It’s that time of year again: the dreaded cold and flu season. I’ve never been more aware of it than I am today. Yes, I’m older than I once was, and sickness seems to hit me harder and last longer than it did in my younger years. However, it’s not…
There are things in this life that amaze me. The generosity of a stranger and random acts of kindness rejuvenate my view of mankind. The family that chooses to march forward in hope after the loss of a child is a sacred thing to see. It’s in these moments that…
Once a month, Anovo pharmacy calls to refill my daughter Grace’s prescription of Firdapse (amifampridine). The conversation doesn’t vary from month to month. First, they’ll inform me the call is being recorded. Next, they’ll confirm some personal information. Finally, they’ll ask if Grace has missed a dose since…
At the start of each new year, I do the same dance as many of you. I examine the year we’ve just left behind and intentionally pursue change in certain areas of my life. Exercise more. Eat healthier. Learn a new hobby. Some of these resolutions stick. Others are long…
Some memories are so special that you know they’ll be held close to your heart for all time. For me, one of those memories was when we heard our daughter Grace laugh for the first time. It happened the day after we met her in a government office in…
“Life was like a box of chocolates. You never know what you’re gonna get.” — Forrest Gump, in the film of the same name Most would agree that life can be unpredictable. Our family certainly didn’t expect that our daughter Grace would face the onset and diagnosis…
When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, I thought our lives would never be the same again. Her life, and ours, seemed to come to a screeching halt. LEMS interrupted and restructured our daughter’s active life. Everything changed to accommodate her…
For most of my life, I’ve been an open book. I tend to trust people quickly and make fast friends. That’s partly out of necessity, as I’ve been a military wife for most of my adulthood and military families tend to settle in quickly. In my case, that tendency also…
My childhood memories hold a lot of special moments: our first family trip to Disney World, summers at the Jersey Shore, fun family celebrations. But mostly, I remember the mundane parts of family life. In those moments, we learned valuable life skills. Some of my earliest memories are of my…
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