• Traveling with LEMS

    Posted by Ashley on September 27, 2022 at 7:55 am

    Good morning all! 

    Starting on the 28th, I will be taking some time off to enjoy my hard-earned vacation. First, I am visiting a friend in New Orleans later this week for the first time for a long weekend getaway!

    I have two short flights with one layover and hopefully, it’s a smooth ride. I’ve only been on a plane 4 times so traveling by myself can be a little nerve-wracking, especially in large airports.

    I’ll return home for a few days to head back to see my new neurologist at VCU and then I will be taking a road trip with my best friend to Miami and then sailing the Caribbean. I am very excited about these trips, however, I know a flare could potentially mess one or both trips up.

    I plan to bring a month’s supply of medication just in case, lots of snacks, a liquid IV, and my heating pad! I always have my medical alert bracelet and a wallet card from Catalyst that defines LEMS and lists my medications and the physicians I see. I also purchased a pretty cool tiny refrigerator that plugs into your car’s AC outlet to make sure I had plenty of fluids!

    This will be my first big vacation and first time out of the country since my LEMS diagnosis in 2015. 

    Are you able to travel with your LEMS?

    What are some “survival hacks” you use if you are able to travel?

    Ashley replied 1 year, 6 months ago 4 Members · 4 Replies
  • 4 Replies
  • wanda-grischkowsky

    September 27, 2022 at 3:51 pm

    We normally take a cruise every year and I feel it is the best way for me to vacation because I can enjoy the ship with plenty of entertainment and food choices if I am having symptoms and don’t feel up to going out, or I can enjoy the islands by sightseeing or doing excursions if it is a good day.

    I have some suggestions. If you are planning to go on excursions, select the earliest time as possible before the heat gets too bad because Caribbean heat is very hot and humid. I mostly go on tours and select “light activity” excursions.  Don’t forget to pack a neck fan, cooling cloth and a hat. Two bottles of water will usually be in your stateroom when you first arrive, but you will need to purchase additional.

    Liquid I.V. does help, so please stay hydrated. Before disembarking to go on excursions, etc. grab water as you leave the ship. Once I return from excursions, I normally take a late afternoon nap because by then my energy is very low and I am pretty weak. Because I use a cane and sometimes have to use a wheelchair, the staff are very attentive and they help me to avoid lines.

    Your itinerary probably includes a beach day at the cruiseline’s private island. If so, try to get off the ship early to claim a beach chair under a shady tree. Save your energy by riding the cruise line’s shuttle to and from the ship and beach.

    Although the ship has a lot of food, pack plenty of snacks to take with you while on excursions.
    Have fun and stay safe.

  • Ginny Boynton

    September 29, 2022 at 1:57 pm


    Will you arrange wheelchair transport at the airports? That’s a good way to conserve your strength.

    Ginny Boynton

  • michele-quier

    October 3, 2022 at 8:22 am

    Just curious. What is the liquid IV you all are referring about? I have never heard of this before

  • Ashley

    October 6, 2022 at 11:51 am

    Hey @gb

    Luckily both of my flights were in the same terminal, so I didn’t have too far to walk and there were plenty of seats to sit in while waiting!


    Hey @michm7270

    Liquid IV is a powder that you can add to any drink that includes electrolytes and vitamins to keep you hydrated! It’s good stuff! You can check out info behind the science and their website here

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