Finding Ways to Stay Cool in the Summer Heat

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 some different ways of keeping Grace cool despite the Florida weather. Thankfully, in Florida, most places have air conditioning, so staying indoors is beneficial at times. But of course, our daughter likes to venture outside. She loves working outdoors with therapy horses, and we don’t want her to feel trapped indoors.

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The first thing we do is keep her hydrated. She has multiple water bottles that she takes with her when venturing out into the heat. We have found that Hydro Flasks work especially well in keeping her water cold.

Since we know that as her body temperature rises, her muscle weakness will be more pronounced, we focus on keeping her body temperature cool. There are multiple ways of doing this. Our daughter is a teenager and never wants to attract attention to herself. We have tried a wet towel around her neck, and more recently, actual cooling towels that work quite well. But Grace didn’t like the look of wrapping something around her neck.

A post on the Lambert-Eaton News Forums suggested some items to combat the heat, and we found a portable neck fan to be especially helpful. It’s lightweight, compact, and not nearly as noticeable as a big, bulky, wet towel. It is so wonderful to have a community of people who have experience with LEMS and can share valuable information with one another.

Grace enjoys swimming, so we carve out time each week to get her outdoors and into the neighborhood pool. Through most of the summer the pool is a great option, although toward the end we have found the water in Florida to be a bit too warm. We must be careful so that it doesn’t exacerbate her muscle weakness. Although Grace feels extremely heavy when she gets out of the pool, while she is in the pool she feels lightweight and secure on her feet.

Thankfully, we live in an age of great invention and ingenuity. There are more ways than I can list to keep our loved ones living with LEMS cool in the summer heat. Every year, new products hit the market to help us accommodate their needs. I am amazed that we can even buy a portable air conditioner if needed. I am grateful for the era in which we live — it’s an age of possibility and new accommodations.

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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.