A change of scenery offers a reprieve from LEMS symptoms

A plaque hanging in our dining room lists all the places our little family has called home. Those include Camp Lejeune, North Carolina; Norfolk, Virginia; La Maddalena, Italy; and Sembawang, Singapore, among others.

Throughout my adult life, I embraced a common phrase floating around the U.S. Navy: “Home is where the Navy sends us.” How true that is; wherever they sent my husband, we went.

However, long before the Navy took me to the other side of the world, my home was a small town tucked away in the mountains of northeastern Pennsylvania.

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‘Country roads, take me home’

We recently had the opportunity to visit my hometown. I felt nostalgic while being there, but I was also thrilled to see our daughter Grace embrace it wholeheartedly.

Grace is 18 years old and was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) three years ago. Since then, we’ve lived in the sweltering heat of northeastern Florida. For more than six months of every year, we contend with extreme heat and humidity, which complicates Grace’s LEMS symptoms.

Most people who deal with LEMS know the obstacles that come with extreme heat. It exacerbates muscle weakness, leaves patients depleted of energy, and makes life just plain hard.

While in Pennsylvania, Grace loved driving down the country roads with the windows down and the fresh air in our faces. She indulged in overflowing servings of farm-fresh ice cream, which I once scooped at my first job when I was 14.

Apart from all of those amazing experiences, I was also overwhelmed by how refreshed Grace felt as she bathed in the coolness of the Pocono Mountains.

Almost immediately after we arrived, Grace commented on how energized she felt. In the Florida heat, Grace would usually be wiped out after just a couple activities. But in Pennsylvania, we were able to visit family, peruse local shops, dine out, and walk the mall without needing to stop or take Grace home to rest. Her demeanor was downright bubbly.

Grace said her legs felt lighter and she had a ton of energy. At night, she slept soundly with the windows open, allowing the crisp, cool night air to fill her room.

I was happy to see Grace be so lighthearted and carefree. It was a sweet reminder of how far she’s come on her LEMS journey.

It’s good and right to store the memories of these lighthearted moments. They act as a balm to our souls on the not-so-good days. And it’s always a treat to visit my hometown. What a pleasant surprise to have the added benefit of relieving some of Grace’s LEMS symptoms, even if it’s just a brief homecoming.

Does the climate help or hinder your LEMS symptoms? Please share in the comments below.  

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.