How We Managed a Vacation, LEMS, and Summer Heat

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by Lori Dunham |

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These last days of summer blanket us with a thick layer of humidity and unrelenting sun. For us in the South, the end of summer is not marked by the turning of the seasons toward cooler weather, but instead the return of the new school year. The heat and humidity will last long into the autumn months, but the new school year is just around the corner.

Our family squeezed every ounce of fun out of this summer. Our goal was to restore activity that had been lost when our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at the age of 14. We wanted to show her she could do so much more than she thinks.

Even before her LEMS diagnosis, Grace thrived on routine and predictability, so taking her somewhere new is always a challenge. She stresses about accommodations. Will there be stairs to contend with? How far will she need to walk to get to the beach? The pool? Will she be able to sleep in a hotel room with her sibling and parents?

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We planned one last trip that had been on our bucket list for some time. Captiva Island, in Southwest Florida, was our destination. Nestled on the Gulf of Mexico, it offers tropical breezes and breathtaking views of sunrises and sunsets.

It was the (almost) perfect place to take Grace. Most everyone there used golf carts to get around, which made parking close to the beach and restaurants easy. Our hotel accommodations were spectacular. We even had a dolphin that lived in the waters directly below our balcony, offering us up close and personal views of marine life.

However, to say it was hot and humid is an understatement. Although we live in Northeast Florida, the heat we experience is nothing compared with what we found in Southwest Florida. By noon each day, the sun was so hot and the humidity so thick that we all just melted.

We got there midafternoon on the first day of our trip. Of course, we were all excited to see the area, so we spent an extended period of time in the hot, afternoon sun. By 4 p.m., Grace was wiped out. Her muscle weakness was pronounced. She was exhausted.

Maximize the cooler parts of the day

After that first day, we realized we needed to be smart about how to combat the heat.

The first thing we did was maximize the cooler parts of the day. We got up early since Grace is naturally an early riser. We rode on our golf cart through the nature preserve in the cool of the morning. We found tucked-away little places to eat breakfast. Then we found the best lounge chairs at the infinity pool and enjoyed a morning swim when it was almost empty.

We maximized our evening times as well. Grace was up for dinners out and a sunset cruise after she spent the afternoon in the cool of the hotel room.

Cooling devices

By noon, Grace was back in the air-conditioned room ready for a laid-back afternoon out of the heat. When she did end up out in the afternoon heat, we made sure to bring water bottles we’d frozen so she always had cold water. We had cooling rags that also helped keep her body temperature down, as well as portable fans she could bring outdoors with her.

Overall, it was an amazing trip. We continue to learn how best to manage Grace’s LEMS symptoms in varying situations. Heat is a definite trigger, and one we must contend with here in Florida.

How do you stay cool during the dog days of summer? Please share in the comments.

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 myasthenia syndrome.


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