A frigid trip north helped with some LEMS symptoms, but not others
The takeaway is that my daughter will always have to manage her LEMS
It’s been years since my family has seen snow. Four years ago, we moved across the country from the frigid north of New England to the balmy beaches of Florida. At the time, our daughter Grace was exhibiting signs of what we now know is Lambert-Eaton myasthenic syndrome (LEMS), but she hadn’t been diagnosed yet.
Once we were settled in Florida, we finally found the right doctor to accurately diagnose Grace with LEMS. So, for the majority of Grace’s life with LEMS, we’ve lived in a hot and humid climate.
We all know the challenges that come with extreme heat and LEMS, so it was a welcome relief to have the opportunity to head back north for Thanksgiving.
Grace, who is now 19, was excited about the possibility of her LEMS symptoms easing because of the change in climate. We knew the weather would be significantly colder than in Florida, and she was excited to see how her body would respond.
We arrived a day after an unexpected snowstorm that dumped more than a foot of snow in my hometown. By the time we got there, the roads and sidewalks had mostly been cleared. It did my mom’s heart good to see Grace playing carefree in the snow. Grace enjoyed fixing a half-built snowman and throwing snowballs at her sister.
Grace immediately commented that she didn’t feel as tired and her muscle weakness wasn’t as pronounced as it normally is in the heat and humidity. For the first time since being diagnosed with LEMS, she could walk around an amusement park on her own, without the assistance of a wheelchair.
Of course, I recognize this wasn’t just because of the colder weather. She’s worked hard for four years to build up her strength and stamina after finding the right treatment options. However, in the cooler air she didn’t tire as easily and had more energy.
Although her muscle weakness was less pronounced, the cold weather did create some new challenges for her. She found the extra layers of clothing, heavy coats, and boots all very cumbersome. Additionally, the possibility of falling due to snow or ice on the sidewalks added stress. The change of weather was really just a reminder that Grace still has LEMS.
Oh, how I wish the weather could alleviate LEMS symptoms for everyone who is affected by the disease.
Whether we live in the heat or the frigid cold, LEMS is still a part of Grace’s story. It’s something she’ll have to deal with all of her life. For now, she can take her medication and do her other treatments, and we could even move to a cooler climate, but her daily life will still be affected by LEMS.
Until there is a cure, Grace will have to manage her symptoms as best she can. Some days are better than others. Some climates help in one area but add obstacles in another. Yet, she will push through whatever circumstances she faces to live her best life.
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.
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