Columns

My husband and I will have been married 29 years this October. In that time, we’ve lived in 16 homes, thanks to the U.S. Navy. Over the years, what we’ve looked for in a house has changed. At first, having four walls and a roof over our head was enough.

Note: This column describes the author’s own experiences with IVIG therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Our family learned the gravity of words when our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS)…

I have loved tea parties since I was a child. It brings me such joy to set a table with flowers, delicate china, fine chocolates, and delicious pastries. Gathering friends and family around the table with lit candles, soft music, and a pot of tea revives my soul. This is…

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 me into adulthood, and I’ve endeavored to pass it on to my children. One of my…

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 able to share what the past two years of equine-assisted therapy have meant to her.

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 15 years old. Looking back, I am so grateful we made the decision to home-school our…

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, we could first see her symptoms in the way she walked. First, we noticed a slight…

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 LEMS Family Association, along with three other members of the Lambert-Eaton myasthenic syndrome (LEMS)…

“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 Lambert-Eaton myasthenic syndrome (LEMS). Even before our daughter Grace was diagnosed with LEMS at…

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 develop through Facebook groups, BioNews forums, Zoom town halls, and phone calls. But it’s not…