Lambert-Eaton News Forums Forums Living With LEMS Adventures in Travel with LEMS, Part 1

  • Adventures in Travel with LEMS, Part 1

    Posted by price-wooldridge on August 4, 2022 at 7:00 am

    Just recently I flew for the first time in just over a year. When you travel this infrequently, it’s always a new adventure, fraught with unfamiliar challenges and a dollop of stress thrown in for good measure.

    As always I try to follow the ‘7 P’s of Performance’: Proper Planning and Preparation Prevents Piss-Poor Performance. When ‘Performed’, everything usually goes great for me. And so it was earlier this month when I prepped to fly back east out of DFW International Airport, just minutes away from my home.

    Traveling with only carry-on luggage is my MO for as long as I can remember. Having no baggage carousels is my motto. Normally this means one piece of luggage to go in the overhead bin, and one carry bag that goes under the seat in front of you.

    In my case I have a third, a CPAP machine bag that flies free too and no one ever gives it a second look. If you go through TSA, the CPAP needs to go through screening in a separate box. I got barked at for not doing that initially. I always smile back and tell them I never fly. Oopsie.

    Packing too has become a relatively routine procedure. I either roll or fold all clothes. Socks get stuffed in shoes. Other sundries get thrown into little bags. My black, Samsonite, hard-shell 21” roller bag is generally crammed full, but neat and tidy.

    My carry-on is a messenger bag. This bag is critical because it carries all my medicine and medicine supplies. When you have many disorders, including LEMS, having a proper supply of all your meds is critical. I pack enough for each day of my trip, plus 2 or 3 days more. You’ll understand why this is important in Part 2 of this saga. For international travel, my friend and BioNews Multiple Sclerosis writer, Ed Tobias, suggests all your meds be in their original RX containers, and you carry documentation from your doctors about your conditions and prescriptions. For domestic traveling, I’ve never done this.
    Ready to go through TSA departure morning, I’m excited to see the line isn’t particularly long and is moving along nicely. Whew. This is always one of my biggest concerns. With LEMS, standing for long periods can be difficult if not impossible. I get anxious thinking about getting stuck standing for a long period which could prove to be more than I can handle. Some LEMS friends of mine like Jerry from Florida, arrange for and use wheelchair assistance to get through TSA and to the departure gate. We’re each different, so consider pre-arranging assistance at your departure and arrival gates from your airline carrier if you need it. Don’t be overly brave.

    All good, right? Well, no. The flight up was uneventful, but what happened once at my destination wasn’t. There are lessons to be learned, and I’ll tell you about them in Part 2.

    Do you have special hints or tricks for traveling? How often do you travel?

    price-wooldridge replied 1 year, 7 months ago 2 Members · 2 Replies
  • 2 Replies
  • dcarpenter

    Member
    August 5, 2022 at 2:53 pm

    I have not flown since my diagnosis, and aside from COVID concerns in the context of my immune suppressed state, the unpredictability of travel is of most concern.  I have travelled extensively around the world, and have experienced travel delays, missed flights, having to scurry to another gate, rerouted and canceled flights, on the fly changes, and questionable resources/support for disabled travels.  Adjusting, regrouping, and managing these changes require energy, which eludes me since LEMS diagnosis.

    • price-wooldridge

      Member
      August 6, 2022 at 3:09 pm

      It sounds like you are a much more experienced traveler than I. Still I’ve experienced many of the trials and tribulations of air travel you have. For me the worst part of it all is the unpredictability. I thrive on routine and order, something not found at an airport! Ha!

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