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Traveling with ALS

By admin, 12:06 am on

Whether your journey is across the ocean on a luxury cruise or in the traditional sleigh and over the river, planning is the crucial pre-trip activity, followed by packing essentials, of course.  People with ALS can travel, just with a little less spontaneity

Your planning should begin with a conference with your travel companions, to make sure they are ready for the adventure.  An additional option is to take a professional caregiver along with you to ease with the demands of travel.

Next, take a spin to see your doctor, to be evaluated for the rigors of the journey.  According to Dr. Edward Kasarskis, MD, PhD, Director ALS Center of U. of Kentucky Neuroscience Center, and Chief of Neurology at the VA Medical Center in Lexington, KY, if your breathing is okay, you’ll likely be cleared for travel.  Evaluate yourself, too, for your own thoughts about your ability to travel.

How will you travel is next up for review.  A driving trip necessitates knowing the conditions at each place you will stop, including enroute, interstate rest stops.   Assume you will not be able to buy any of the items you will need along the way and pack it with you.  Having what you need is crucial.

Just as is true for people without ALS, air travel is more grueling than a road trip, thanks to airport security, miles between gates, and unexpected flight cancellations.  All of this is magnified during holiday times. Your help can come in the form of a professional travel agent, who can assist you by:

  • Choosing the best day and time to fly to minimize crowds and chances of a flight cancellation.  For example, she probably won’t book you on the Wednesday before Thanksgiving, late in the day.
  • Finding the most legroom possible on the plane, something you’ll appreciate.
  • Understanding how much time between connections is actually required and how to make certain you’ll make that next flight by arranging intra-airport services, like an electric cart.

Dr. K’s travel suggestions start with this directive: “Since any significant delay in a flight, or a cancellation, can be a huge problem, ask yourself, ‘What would I have done if I were flying into New York City when [Hurricane] Sandy visited?’ That’s how you need to plan.”  Here’s more of what he recommends:

  • Visit the TSA.gov site to check out the latest regulations and accessibility news for the airports you will visit.
  • Be sure to get a map of the airports you’ll be travelling to so you knowlocations of security, accessible restrooms, and availability of any other services you might need as well as where to park and check in.
  • Have a list of hotels near the airports in case you must stay unexpectedly. Being prepared may help you get to the front of the line.
  • Carry on everything you will need for three days, incase of unexpected delays, such as medications, special food/PEG compatible food, toiletries, a change of clothes and reading material.
  • Carry water on the plane; fill your empty bottle once you clear security.

Try to speak with a real, live person about any hotel room, cruise ship, resort, concert, or museum venue you will use or visit. You’ll want to know about restroom and general accessibility.  Cruise ships may be especially challenging.  Resorts may have equipment like pool lifts and beach wheel chairs that could really add to your experience.

Your list is your new best friend.  Make a detailed list of everything you will need and pack as if you will go to a third world country where they are having a disaster—and you cannot buy what you need. Think Sandy again.

Even if your environs will change as you travel, you’ll be taking all of your condition with you, and since traveling complicates everything, taking care of yourself may be more time consuming and complex. Even so, with planning, you can be ready for all eventualities and have a great trip.

If you need assistance with care for a loved one, or for yourself in the Omaha area, call Home Care Assistance, we can be reached at 402-763-9140.  Our whole-person wellness approach helps our clients thrive.