Facing long-distance travel challenges after a LEMS diagnosis

The first time we noticed our daughter Grace exhibiting symptoms of what we now know to be Lambert-Eaton myasthenic syndrome (LEMS), we were in the airport traveling to Texas for Christmas. Our three kids were dragging their suitcases through the parking garage to the check-in counter.

Suddenly, we realized Grace was falling behind. Her dad took her bag to lighten her load, but she still couldn’t keep up with the rest of us. We knew then that something was seriously wrong.

Traveling has always been an integral part of our family life. My husband grew up overseas, so it was natural for us to travel as a family to Thailand, where he was born and raised. We made numerous arduous trips with our children when they were young.

In addition, we spent 23 years traveling around the world while my husband served in the U.S. Navy. Some of our children’s earliest memories are of sleeping on airplanes and ordering room service in foreign lands at 2 a.m. because we were jet-lagged.

Our son’s first Christmas memory is from the year we spent the holiday in a hotel room in Singapore. Our first photos of Grace were taken in picturesque Sardinia, Italy, where we lived when we adopted her from China.

How LEMS challenges our ability to travel

When Grace was diagnosed with LEMS at age 15, everything changed. She lost the ability to play sports, run around the neighborhood, and ride a bike. As a family, we thought we’d never be able to travel again.

Our first concern, of course, was that Grace could no longer walk for any serious length of time or distance. An airport seemed daunting and near impossible.

Second, Grace was apprehensive to leave the security of her home. Once diagnosed, Grace wanted the predictability of her usual, safe environment and daily schedule.

The allure of travel was no longer present.

But once we found the right treatment plan and Grace regained some of her strength, we broached the subject of travel again. However, we quickly realized there were numerous concerns: How would we manage Grace’s medicines while changing time zones? Should she skip doses to accommodate the new time zone, or take extra to compensate for the time difference? Would jet lag exacerbate her LEMS symptoms? Could Grace manage a long flight?

These were all new worries for us. We wanted to acknowledge and be aware of any possible challenges that could arise during long-distance travel before we set anything in motion.

Now based in Florida, we’ve yet to venture farther than the West Coast since Grace’s diagnosis. When we traveled there, she didn’t enjoy the long flight. Sitting for that long makes her feel weak. Grace was also significantly affected by the three-hour time difference. The adjustment zapped her strength, and her energy levels plummeted.

Our hope is that one day Grace will feel comfortable enough to travel to new and exciting places. I want her to know the world is at her fingertips should she choose to expend the time and energy to see it.

Long-distance travel isn’t out of the question. However, we need to carefully consider the specific challenges that come with LEMS before embarking on a grand adventure.

How have you managed travel challenges after a LEMS diagnosis? 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 myasthenic syndrome.