Preparing for Upcoming Travel Helped Alleviate My Daughter’s Anxiety

Our family loves to travel. Thanks to the military, we have spent years raising our kids in places like Singapore, Thailand, and Italy. We have loved our visits to monasteries in Germany; castles in Austria; beaches in Indonesia, Malaysia, and the Maldives; and Big Ben in England. But when our daughter Grace began exhibiting symptoms of Lambert-Eaton myasthenic syndrome (LEMS), our hopes of traveling, especially internationally, seemed dashed.

Our family first noticed Grace’s symptoms on a trip to Dallas-Fort Worth. Grace was unable to keep up with the rest of us as we pulled our luggage through the car park.

For two years after that, we did not travel at all, although we undertook a major move from New England to the Gulf Coast of Florida, which proved exhausting for Grace. During this time, we also traveled five hours every month for her treatment in a neighboring city. These trips were so taxing that Grace was often unable to walk by the time we reached our destination.

Eventually, the military decided it was in our family’s best interest to move us closer to Grace’s doctors, and we ended up in northeast Florida. We’ve enjoyed settling here. We didn’t mind COVID-19 quarantine because we felt all snuggly tucked into our new home and location.

Grace finds comfort in familiar surroundings and a comfortable routine. She gets nervous if she doesn’t know what will be expected of her physically. Does she have to walk up steps to get to where she’s going? Will she have to walk a mile to get to the restaurant? These questions bring Grace a lot of anxiety.

Finally, after many months of quarantine, we recently felt like it was time to try our hand at traveling. We had not seen many family members in over two years and an opportunity arose to visit my brother and his family in South Carolina. I knew the idea of traveling, even a few hours away, would make Grace anxious, so I did my best to prepare her ahead of time.

Following are a few ways I helped to alleviate Grace’s anxiety:

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We made it clear exactly how long we would be driving. She knew we could stop and stretch our legs any time she needed to.

Grace and I had a conversation regarding where we would be staying and the accommodations we would have when we arrived. I made sure she knew she would have to go up about 20 steps to get into the beach house.

Prepare and pack meds

I packed meds for the days we would be gone, plus several extra days’ worth, in case we were unable to get home on the day of our expected return.

I also put notes all over the place to make sure we did not forget her medicine. I knew we wouldn’t forget, but these notes helped Grace relax. She knew there was no way we would forget them.

Allow her to opt in or out of activities

At one point, we had all gone out to visit a local equestrian center, which Grace was very interested in. We planned to quickly return to the beach house, change, and head out to the pool. I knew Grace would not think tackling the stairs was worth the effort for a quick swim. So, I allowed her to stay back from swimming so she didn’t have to worry about the steps again.

Words of encouragement

Grace needed to be pushed a bit to travel. She was anxious beforehand, but I encouraged her along the way. I told her I would be right by her side at all times and she would not have to push herself any harder than she wanted to. We assured her it would be a relaxing trip to see loved ones.

The trip went off without a hitch. The drive was easy and the accommodations were comfortable. Grace felt strong and refreshed when we got there. There was enough activity to help Grace realize she could do a lot more than she thought she could. But we also had plenty of leisure time for Grace to rest. She even got a couple of hands to help her down the stairs.

I considered this short trip a big win. We needed this win to realize we could still experience new places and adventures. Now, Grace knows she is able to do as much as she wants. That is what I wanted from this trip — the realization that she can, in fact, do it! I think it was a great success.

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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.