Ask the Doc: Q & A with Edward Kasarskis, MD, PhD

Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY. 

Dr. Kasarskis

Q: How do I know if it’s OK for me to travel?

A: Excellent question, especially with the holiday season here. Traveling is great fun but requires detailed, advanced planning if you have ALS. To answer your particular question about whether you are fit for a trip, the first step is to talk with your neurologist about the trip you’re envisioning and get feedback. Go to an ALS support group and ask other patients about their own experiences.

Many people with ALS take all sorts of trips -- from international journeys, to cruises, to car travel, and everything in between. Which type of trip might be right for you may depend on your individual strengths, challenges, and needs. Discuss the trip thoroughly with your family and anyone who may be accompanying you to see how they feel about tackling the adventure. Everything that challenges you on a day-to-day basis comes with you on a trip, but with a twist: everything is a little bit harder and will take longer.

For many people with ALS, almost any trip is do-able with the right preparations. Typically, air travel is more challenging than is a road trip -- even if you are an experienced air traveler. Airports and managing assistive devices when navigating security, boarding, and the flight itself take special planning and consideration.

Any significant delay in a flight or a cancellation will be a huge problem. So to put this into sharper focus, ask yourself, "What would I have done if I were flying into New York City when Sandy visited?" That's how you need to plan:

• Get airport maps and find out how to get to security, the location of accessible bathrooms, and the availability of wheelchairs or electric carts.
   
• Plan out your arrival carefully: where to park, where to check in, etc. When you’re traveling with extra gear and with reduced mobility, every extra step really matters.
   
• When you’re planning travel, schedule flights early in the day; they’re less likely to be cancelled or delayed. Even if they are, there are typically more flights in the daily line-up to get you where you need to be.
   
• Having a little extra leg room might be very helpful. Talk with an airline representative or travel agent about options before selecting a seat when you book your plane ticket.
   
• Be sure to allow more than enough time to transfer from one plane to another if you don't have a direct flight. Tight schedules can be difficult to meet if you have mobility issues. Talk with a travel agent for special advice on flight arrangements that may better fit your needs. Don't try to save money by booking flights on the Internet, talk to a human (a travel agent) face-to-face.
   
• Bring along a list of major hotels near the airports you’re going to in case of a delay. Being able to phone in for a reservation quickly may help get you ahead of the line in case of a flight cancellation. You don't even want to think about spending a night trying to sleep in the airport.
   
• Know your respiratory status and whether you may need to bring oxygen on the plane. If you’re having trouble coughing, know that the plane is a frightening place for a medical emergency.
   
• Carry on everything you might need for three days or so, just in case a travel delay or weather problem grounds you. That means all your medications, any special food (especially if you use a PEG tube), toiletries, a change of clothes, and something to read or to help entertain you.
   
• Bring an empty water bottle with you to fill up when you get past security. It’s always smart to carry water on a plane.
   
• Bring extra non-perishable food: nuts, dried fruit, and the like.

If you’re planning to go on a cruise, know that many cruise lines are now very attuned to disabled passengers. But sometimes the doorways and bathrooms may not be set up for your particular mobility issues. Be sure to talk with the cruise company and travel agent to ensure your needs can be met.

Plan carefully. Make a very detailed list of everything you need for your trip and start to pack early so you’re not rushed.

Enjoy concerts and museums but, again, plan ahead to be sure you can easily find appropriate parking, elevators and bathrooms. Check out the website or call ahead to understand what’s available to you. If you’re going to a resort, ask about the availability of pool lifts and beach wheelchairs. They can greatly increase your accessibility to fun and relaxing activities.

To sum it up: when traveling with ALS, the best surprise is no surprise. The time you invest in carefully planning will help ensure you have a good time!

To learn more about successfully navigating air travel, visit the Transportation Security Administration website.

If you would like to submit questions for a future Q & A, please send your questions to theexchange@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.