The ALS Association

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On the Road: Tips for Traveling with ALS

Whether it’s Vegas or Lisbon, traveling can be a thrill even with an ALS diagnosis. Creating lasting memories with family and dear friends is something to look forward to with the right preparation. But to travel without incident, of course, means more than dangling a disabled parking permit from a rental car’s rear-view mirror.

If your travel includes flying, at the top of the list is letting your airline know at the time the reservation is made that you’re a person with a disability. Bonnie Guzelf, a woman living with ALS who organized a trip from Arizona to Israel, wrote about her experiences. “When making reservations, request the bulkhead seats. They’re easier to access, have more leg room, are closer to the plane door and usually closer to the bathrooms.” Since Guzelf cannot walk on her own, she requested “an aisle chair, which is a narrow, wheelchair used to transport you from the plane door to your seat.”

For information on everything from access to airport shuttles, accessible drinking fountains, travelers’ aid stations and steps involved in filing a complaint about disability accommodations, download the U.S. Department of Transportation’s 33-page booklet, “New Horizons Information for the Traveler with a Disability.”

A couple of days before the flight be sure to reconfirm all travel arrangements to ensure your needs will be met once you arrive at the airport. Don’t be hesitant about asking lots of questions. No matter the mode of transportation: train, airplane, bus, (or safari), different travel rules for people with disabilities may apply. Though no specific medical documentation is required to be compliant with the Homeland Security Act, it’s helpful to have verifying paperwork handy from your health care provider when checking in items in such as: pre-made liquid food, ventilators, and medicines. According to The U.S. Department of Homeland Security’s Transportation Security Administration, the following tips will help smooth the travel experience:

Before the security screening begins, it is important for passengers to inform the Transportation Security Officer (TSO) if they

  • Have medically necessary medications in pill, powder, or solid form;
  • Need assistance
  • Have difficulty raising their arms
  • Have difficulty walking or standing alone.
  • Need the assistance of their travel companion or electronic device to communicate

The TSA also advises passengers to “separate medications from other belongings before screening begins. Passengers are allowed to bring medications in pill, powder, or any other solid form through security screening checkpoints in unlimited amounts, as long as they are screened. Medication is usually screened by x-ray; however, if a passenger does not want a medication x-rayed, he or she may ask for a visual inspection instead.”

Additionally, the TSA notes, “Medically necessary equipment and supplies are permitted in checked baggage although it is advisable to carry-on any medically necessary items. Travelers passing through security checkpoints may bring all medically necessary items through TSA security checkpoints after these items have been properly screened, unless the items have been designated as prohibited by TSA. Information about prohibited items can be found here. TSA also makes available a toll free hotline, the “TSA Cares Help Line” for travelers with disabilities at (855) 787-2227. TSA recommends a call at least 72 hours ahead of travel date for “checkpoint support.” Readers can also refer to “Tips, Tricks and Tactics for Traveling with ALS” for useful information that otherwise might be overlooked regarding electric wheelchairs, medications, medically necessary liquids, BiPAPS, service dogs, and more.

If you travel with a scooter, manual or electric wheelchair, the airline will ask for details that can be found in this equipment manual. Be sure the electric wheelchair is in proper working order. Pack a small travel toolkit for quick and potentially unexpected tune-ups, and always have ownership identification on the chair with the following in plain sight: first and last name, phone and flight numbers, and travel destination.

Before your departure, consider taking the extra step of finding the local vendor phone number for your brand of electric wheelchair. For additional peace of mind, jot-down the number of the nearest chapter of The ALS Association where you’ll be traveling. According to “How to Travel by Air with a Wheelchair” from the Society of Accessible Travel and Hospitality (SATH), there are three primary “classes” of wheelchairs:

  • Manual chairs
  • Electric wheelchairs, including scooters, with wet acid batteries
  • Electric wheelchairs, including scooters, with dry cell or sealed gel batteries

“Those who have Type 2 [wet acid battery] electric wheelchairs should check with the airline, as a leaking battery inflight can be dangerous. It will be necessary for baggage handlers to remove the battery and place it in a special container. This requires the passenger to be at the airport at least three hours before departure. Most modern power-operated wheelchairs have some form of safety battery so that they can be carried without risk of damage to the aircraft. However, it will be necessary for baggage handlers to disconnect the leads from the terminal and to cap them to avoid shorting. This may take some time, so you will have to preboard. It may be necessary to transfer you to a special aisle wheelchair in the air terminal, and there may equally be a delay on arrival before your chair is available.”

As important as this is, there’s more to incident-free travel than a properly charged wheelchair. When planning a cruise, it’s important to determine accessibility in cabins, like having wide-enough bathroom doors and proper handrails, as well as discovering accessibility routes to, from and on the ship.

Selection of a travel agent well-versed in trip planning for those with disabilities can be worth his or her weight in gold. According to Edie Degaetano, travel agent at Venice Pines Travel in Venice, FL who’s been in the travel agency business since 1977 owes much of her success to being a stickler for details.

“I am certain to follow up to be sure needed medical supplies are delivered on time and to the correct travel destination,” said Degaetano. Where electric wheelchairs are concerned, she adds, “I make accommodations directly with airlines and cruise lines involved to be sure a wheelchair gets where it needs to go.”

A trove of specialized services and tips can be found on DisabledTravelers.com including an index of internationally-located travel agencies that specialize in coordinating arrangements for travelers with special needs.

Additional Resources
A sampling of more “multi-mode” options for travelers with special needs is available here:

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