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One of the first accommodations we made after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) was acquiring a disabled person parking permit. One of the prominent symptoms of LEMS is muscle weakness, which can make walking for any length of time very difficult. Grace had an…

Summer can present a host of problems for those living with Lambert-Eaton myasthenic syndrome (LEMS). Heat and humidity are known to exacerbate muscle weakness. Our family lives in Florida, which presents many challenges for our daughter Grace, who is living with LEMS. Over time, we have come up with…

I consider watching our daughter struggle through the symptoms of Lambert-Eaton myasthenic syndrome (LEMS) one of the most difficult aspects of my life. As I look back on the last two and a half years since Grace began showing symptoms, I realize how I haphazardly stumbled through the five…

A few weeks ago, I wrote about our daughter’s desire to get a summer job. I was overwhelmed with the limitations that Grace faced in her job search, knowing she can’t work a typical job for teenagers like most of her friends. Many of the jobs available to her…

I have spent most of my life in a rush. As someone with a Type A personality, I love to be organized and manage my time efficiently. A great day for me is full of activities and to-do lists. Every task seems to carry a sense of urgency. There…

Our family loves to travel. Thanks to the military, we have spent years raising our kids in places like Singapore, Thailand, and Italy. We have loved our visits to monasteries in Germany; castles in Austria; beaches in Indonesia, Malaysia, and the Maldives; and Big Ben in England. But when our…

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” — Mother Teresa  In my experience, if someone claims that you can’t make a difference in someone’s life, I’d guess they’ve never walked the hard road of…

As the days slowly lengthen and stretch before us, I am faced with new challenges caused by Lambert-Eaton myasthenic syndrome (LEMS) and the limitations it places on our 16-year-old daughter, Grace.  After a year gone topsy-turvy with COVID-19 protocols and accommodations, we came to a manageable…

Recently, I wrote about our family’s periodic need to assess medication protocol. This helps us figure out what is and isn’t working. I am a caretaker of our 16-year-old daughter, Grace, who has Lambert-Eaton myasthenic syndrome (LEMS). It is important that I communicate with her to determine…

Most people in the rare disease community can relate to the constant march to various doctors in our quest to manage our health, or that of a loved one. Our doctors are invaluable. If we are really blessed, they walk compassionately beside us on the…