Finding ways to beat the heat is crucial for those with LEMS

With summer approaching, a columnist shares how her daughter stays cool

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by Lori Dunham |

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This time each year, our home in Florida is filled with a palpable excitement as summer quickly approaches. The school year is winding down, our days are growing long, and cool air wafts in through our screen doors and windows. Soon it will be too hot for open windows. But today, we relish these moments heading into summer.

For our family, summers have always been about adventure. Most years, we would travel to visit family throughout the United States. Often, we had great fun attending minor league baseball games in my hometown. Other summers, we hiked through the mountains of New England, exploring little towns along the way.

Our family would spend hours at the neighborhood pool. We enjoyed taking a picnic to the beach, spending all day playing in the waves and sand.

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A recent family vacation gave my daughter an opportunity to do more

However, our summers look quite different nowadays. Our daughter’s Lambert-Eaton myasthenic syndrome (LEMS) diagnosis changed just about everything when it comes to planning the season.

Since Grace was diagnosed with LEMS at age 15, instead of deciding on a grand summer adventure, we now have to ask questions such as these: Will this location be easily accessible to Grace? Can she participate in the activities we plan? Are our accommodations adequate to keep Grace out of the heat?

Now, we account for the struggles that come with LEMS. In choosing activities, we weigh the pros and cons and decide together if the effort is worth the cost. As a family, we seek out ways to beat the heat and make things safe and comfortable for Grace.

In addition, we learned to make the most of every convenience afforded to us.

Modern conveniences save the day

I grew up in the Northeast, where we didn’t have central air conditioning. When the days grew long and hot, our strategy to beat the heat was simply to open windows and hope for a cool breeze during the night.

Those days from my childhood still influence my desire for open windows and fresh air in the house. But I know I cannot do that in light of Grace’s LEMS. At the first hint of heat, we crank on the air so that Grace doesn’t get overheated.

As with most people with LEMS, the heat seriously affects Grace’s energy and muscle weakness. It’s imperative we keep the house cool so we don’t exacerbate her symptoms. So we close the windows, turn down the thermostat, and put Grace’s health first.

New products and life hacks

I never paid much attention to the growing market for keeping cool through the dog days of summer. However, since Grace’s diagnosis, we’ve found some great gadgets that help her during this season.

One of the first items we bought to help Grace stay cool was a handheld misting fan. She uses this occasionally when she’s out in the heat of the day at places like Disney or sporting events. For more extended time spent outdoors, some may find a cooling vest helpful. A quick search online will yield a plethora of options, from cooling towels and neck fans to cooling hoodies and bandanas.

One of the most surprising tricks I learned is to put bedsheets in the freezer for an hour before bed to stay cool as you fall asleep.

Our imaginations continue to develop new and fun ways to beat the heat. For those with LEMS, these aren’t just gimmicky items found on the internet. They’re seriously good options for combating the effects of heat and living the fullest life possible.

Indeed, our summers look very different today than they did five years ago. But I’m grateful we live in a day and age with so many modern conveniences to ease the burden of LEMS.

How do you navigate summer activities with LEMS? What strategies have you implemented to beat the heat? 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 myasthenia syndrome.


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