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:  I’d like to travel this summer but am unsure about whether I’m up to it and worried about whether it would be too difficult for my family and for me to manage. I have a PEG and I make all of my own food at home. What commercial product should I use when I am on the road? What should I know? What do you tell your patients about travel?

A: Generally I encourage my patients to travel but to plan more carefully than they did before they had ALS. Before you start thinking about your trip, talk with your physician about your particular situation. Generally, if your breathing status is not compromised, you’re likely to get the OK.

The biggest issue -- whether you travel by plane, train, a cruise ship, or automobile -- is to make a detailed list of what you need to bring, scope out a trip that is truly do-able, create a detailed itinerary and route, and plan for the inevitable delays. Pack as if you were going backpacking in the wilderness and have your needed supplies with you at all times. Call me compulsive if you wish but when you are backpacking, you won't have it available if you haven’t carried it. Ask yourself the necessary “What if?” questions, such as: “What if my plane is delayed several hours?” “What if the plane is canceled and we are stranded in the airport without our luggage?” “What if we hit heavy traffic or get stranded on the Interstate for several hours behind an accident?” Be sure to have what you would need to be comfortable in these situations, including food, water, medications, toilet paper, and whatever you typically need to manage your ALS effectively under the circumstances. If you’re flying, be sure to check with the airline about how to bring your "stuff" onboard (a wheelchair, walker, or BiPAP device). As for getting through security, you can check the TSA web page (http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm). They are currently allowing walkers, CPAP/BiPAP machines, oxygen concentrators, and many other assistive technologies.

Make sure you don’t get dehydrated. Research suggests people with ALS typically are 10-15% short of the recommended fluid intake. Travel tends to be dehydrating. So do what marathon runners are encouraged to do: pre-hydrate. And aim for straw-colored (very light yellow) urine; it’s a sign you are getting enough fluids. This is particularly important in hot and humid climates. Travel can also be associated with diarrhea (another source of dehydration), so pack Immodium®, just in case. If you’re going out of the country, you may want to ask your physician for Cipro®, a broad spectrum antibiotic.

And as for your question about food for people with a PEG when you can’t prepare it at home, I presume that you mean you can't puree your table food for PEG feedings. This would be very difficult to do on the road. However, there are many commercially available products in cans that don't require refrigeration, are ready to use, and provide complete nutrition. They will meet your needs while away from home.

Happy travels! As Bill Bryson wisely says, “To my mind, the greatest reward and luxury of travel is to be able to experience everyday things as if for the first time, to be in a position in which almost nothing is so familiar it is taken for granted.”

If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@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.