With LEMS, summertime means finding ways to beat the heat
Our daughter's muscle weakness is worsened by hot weather
Written by |
Summer brings so much to look forward to — long days of sunlight, crunchy corn on the cob, vacations, and lots of family time. Because we live in Florida, it also means spending a lot of time at the beach.
But summers have changed since our 21-year-old daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) six years ago. Nowadays, we have to be very intentional in planning where we will go and what we will do on summer vacations. Will it be a good fit for Grace’s physical needs? How much walking will it entail? Do the accommodations have an elevator? How hot will it be there? We didn’t really think about these things before Grace’s diagnosis, but they’re critical to having a successful family vacation now.
More than anything, our summers are now spent trying to beat the stifling heat, which exacerbates Grace’s LEMS symptoms. We don’t spend many carefree days at the beach these days.
Northeast Florida has had heat indexes well above 100 F for multiple days in a row. This makes going outside for any length of time especially challenging. Grace wilts in the sun. Her muscle weakness is significantly pronounced when she is out in the heat. Depleted of energy, she needs significant recovery time.
Weighing the pros and cons
We have mastered the art of prioritizing since Grace’s diagnosis. We weigh the pros and cons of any activity that we know could stretch her to her limit. Occasionally, she will forgo a birthday party or family event if we know it will be mostly outdoors. On school beach days, Grace may choose not to stay as long and will build in downtime afterward to recover.
Grace is at an age where she can choose for herself what her body can handle, and she does a good job setting boundaries in order to protect her health.
Gadgets and staying indoors
Thankfully, because we live in a hot-weather climate, most places here have air conditioning, but we’ve also turned to Amazon for some gadgets that help beat the heat and have tried many of them. A misting fan has been helpful, and Grace has also tried neck fans, cooling towels, and even a cooling blanket for warm nights.
One way Grace beats the heat is by just staying inside. This fits her personality because she is a homebody and introvert, but it bothered me at first because I wanted her to be free to take part in all the outdoor activities Florida has to offer. Feeling crummy for days afterward isn’t worth it, however.
In Northeast Florida, we have about six months of hot weather and six months of beautiful, moderate weather. It’s during those moderate times that Grace is free to walk the dog and be outside doing the things she doesn’t get to do the other six months. It’s a compromise that works for her.
Our summers are not as carefree as they used to be, and I find myself counting down the days to cooler weather for Grace’s sake. Until then, we will cuddle up in the air conditioning, play board games, and take up new indoor hobbies.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.