Traveling when living with ALS can be challenging, but it is possible. Planning ahead and being proactive will go a long way toward having a smoother trip.

People living with ALS do travel both domestically and abroad, even with large power wheelchairs and respiratory devices. That said, you will need to anticipate and expect unexpected challenges. Airports, airlines, hotels, and other businesses may claim to meet certain accessibility standards, but the on-the-ground reality can be different depending on the company, location, and individuals working that day.
You and/or your traveling caregiver(s) will need to communicate your needs, advocate for yourselves, and even educate people how to do things like transfering. You will need to be patient and build additional time into your itinerary.

This page includes general tips, recommendations, and information for traveling with ALS, but you will need to figure out what works best for you. This will depend on a variety of factors such as your mobility and respiratory status and the level of support available from your caregiver(s).

Bucket List Travel

After his ALS diagnosis, Ed and his wife Dolly "chose to live—and live large." They traveled throughout the U.S. and Europe and took an unforgettable trip to Patagonia, Argentina. Dolly writes about the challenges and rewards of traveling with ALS. Read more

Planning Ahead

Regardless of your itinerary or mode of travel, it is important to research and plan ahead while keeping safety, comfort, and essential supplies in mind. Think about what you might need to do and bring in the case of unexpected problems and delays. Be sure to have plenty of battery backup for your respiratory, mobility, and communication devices.

Meet with Your Medical Team - Before traveling, communicate with your ALS clinic or medical team. Discuss potential concerns, ask for recommendations, and plan accordingly. If you will be flying, ask if your team has any concerns about changes in air pressure. Get written notes from your doctor for prescriptions, medical devices, and anything else of importance.

Research and Call Ahead Before Booking - Before making reservations, research your transportation, lodging, dining, and event options ahead of time. Find out what accessibility accommodations are available, and if possible, speak with someone about specifics. Mention ALS, explain your needs, and ask the person to make a note on your reservation if possible. 

Organize Your Documents - Bring physical and/or digital copies of any paperwork you might need for travel purposes or unexpected emergencies. This may include your reservations, doctor notes, advance directives, medical device information, care needs, and emergency contact information. 

Plan for Your Respiratory Needs - Be sure to bring what you will need in order to have the same level of breathing support you have at home, including devices and caregiver support. Bring backup supplies and batteries for unexpected delays. Discuss with your respiratory therapist ahead of time. 

Plan for Your Mobility Needs - Bring the mobility and transfer devices that will best support you on each trip. Prioritize safety and energy conservation while also factoring in convenience.

Plan for Your Communication Needs - Think ahead about how you will best be able to communicate your needs on your trip. If you use a speech-generating device, consider having low-tech backup options should your devices stop working or become temporarily unavailable. It may be helpful to print out some important information about your situation and possibly some helpful phrases you may need.

Think About Nutrition and Hydration - Because traveling can disrupt daily routines like mealtimes, be sure to bring any meals, snacks, or eating devices you may need. If you have a feeding tube, bring enough nutrition formula for unexpected delays. Also have a system for staying hydrated while you’re on the move. If you will be flying, the amount of liquid you are allowed to carry on may be limited. See the TSA Airport Screening box below.

Make a Plan for Relieving Yourself - If your ability to use bathrooms on a plane, train, or elsewhere may be limited, be sure to have a backup option such as an external catheter or adult diapers.

Keep Comfort In Mind - Think about the things you use at home to stay comfortable when seated or lying down. Bring any pillows, braces, or other supports than can help you be more comfortable, both in transit and at your final destination.

Consider Using An Accessible Travel Agent - If you could use the extra support, there are travel agents who specialize in booking travel for people with disabilities.

Preparing Your Destination

Before traveling, you will also need to think about what you will need once you arrive at your destination. Unless you are driving your own vehicle, you will need to research and coordinate the best local transportation options for you.

If you are flying, there may be accessible airport shuttle services to local hotels. Taxis or ride-sharing services like Uber and Lyft may have accessible vehicles. Many cities also have accessible public transportation and related paratransit services for people with limited mobility. You can search for local transportation options on the Rides In Sight website. Another option is renting a wheelchair accessible van or RV at your destination.
The local ALS organization at your destination can also be a great resource. You can reach out to ask for transportation suggestions as well as whether they might have any assistive devices or equipment that you could borrow during your stay. You could also ship some things ahead to your destination, such as nutrition formula, to lighten your load.

Taking a Road Trip

The advantage of taking a road trip is that you can leave your home in a vehicle that you already know meets your needs. You won’t have to worry about researching and piecing together local transportation options.

If you are in a wheelchair and do not own a wheelchair-accessible van, there are companies that offer short-term and long-term rentals. You can learn more about wheelchair-accessible vans on our Transportation page.
You could also rent a wheelchair-accessible RV, which would take care of both your transportation and lodging needs. Renting an accessible RV will allow you to bring larger medical devices such as a patient (Hoyer) lift.

Traveling by Plane

You should be able to travel by plane as long as your doctor and respiratory therapist say it’s okay and you are able to sit in an airplane seat for the duration of the flight. You should be able to travel with any of your mobility, respiratory, and communication devices.

Traveling by plane will require advance planning, logistical coordination, troubleshooting, and patience. You should build in ample time at the airport and make sure that your travel companion(s) are capable of providing the support you will need.

When planning your itinerary, you may need to decide whether it would be better to take one longer flight or two or more shorter flights. A longer flight may be less comfortable, but having layovers means extra travel time and possibly additional logistics like rechecking your power mobility device. 

Contact the airline well in advance to explain your needs and ask any questions. Let them know which electrical and battery-powered devices you will bring, make sure they are approved, and ask what paperwork you will need to bring or submit. Also explain what your mobility needs will be at the airport and whether you will need transfer assistance into your seat on the plane.

TSA Airport Screening

You should be able to take your mobility, respiratory, and other devices through airport security. If you need to carry on liquids such as enteral nutrition or liquid prescription drugs, you'll need a special exemption to get through security. TSA’s webpage on traveling with disabilities and medical conditions has answers to common questions. If you have additional questions or concerns about going through airport security with liquids or any of your devices, you can call TSA Cares at 1-855-787-2227 up to 72 hours before your flight.
Be sure to bring essential items on board that you may need, such as canes, walkers, bilevel (BiPAP) machines, cough assist machines, suction machines, speech-generating devices, cushions, nutrition formula, prescriptions, and paperwork. Make sure your device batteries are fully charged and that you have ample backup.

Respiratory devices should not be considered carry-ons and can be stored in the overhead bins. You can use your respiratory devices on the plane as needed.

The airline staff should be able to help transfer you into your seat, though they will likely need guidance from you. They can help you transfer into a narrow aisle wheelchair and then into your seat, either by hand or with the help of an airport sling.

Be sure to have a plan for relieving yourself during the flight. Most airplanes have very small lavatories. Some newer, larger planes with two aisles may have an accessible bathroom on board. Flight attendants should be able to provide assistance to the lavatory door with an onboard wheelchair, but they cannot provide lift assistance into or out of the chair or lavatory. If you are concerned about accessing the airplane lavatory, have a backup option ready such as an external catheter or adult diapers.

Flying with a Power Wheelchair

If you have a large tilt-and-recline custom power wheelchair, there will be additional considerations when traveling by plane. Power wheelchairs have been damaged by baggage handlers who are either not careful or do not know how to properly handle them. You will need to be proactive and communicate clearly to help ensure that your chair arrives at your destination in good shape.

​You can drive your chair through security and to your gate. Once there, explain that you will need assistance both getting the chair checked and transferring to your seat. Explain that the chair is delicate and complicated and that you or your caregiver want to give instructions directly to the person handling your chair.
You or your caregiver will also want to prepare the chair itself, which may include protecting electronics with bubble wrap and removing components like the battery and headrest and storing them in a carry-on bag. Remember to remove any respiratory or communication device components and personal items.

​Before arriving at the airport, attach clear notes to the chair with important messages and instructions such as, “Please handle my wheelchair with care!” and “Do not store this wheelchair on its side.”​
Before landing, remind the flight attendant that baggage handlers will need to bring your chair to the jetway. Once you get your chair, do a thorough inspection to make sure everything is working properly. If anything is damaged, you must file a claim with the airline before leaving the airport in order for the airline to pay for any repairs.

For detailed tips on flying with a power wheelchair (and ventilator), see Team Gleason’s very helpful Flying with ALS document.

Traveling by Train

Trains in the U.S. should accommodate most standard-sized mobility devices. Some trains and routes will be able to accommodate larger mobility devices than others. It is important to call ahead to ask if you can bring your specific mobility device on your desired route. Once on the train, you should have the option of staying in your wheelchair or transferring to a seat. Amtrak may be able to provide assistance boarding and exiting the train. To learn more about mobility device services and how to make reservations, visit Amtrak’s Accessible Travel Services page.

Going on a Cruise

Traveling by ship can be a popular option for seniors and people with limited mobility. Cruise ships often have accessible cabins, restaurants, bathrooms, and more. Some companies offer special assistance for booking, equipment rentals, and local transportation. Learn more on this helpful Beginner’s Guide to Accessible Cruising.

Booking Accessible Lodging

Though many hotels and other lodging options may claim to have accessible rooms, there is often wide variability. It is important to research, call, and book well before your trip to make sure your needs will be met.

Look at hotel websites and online reviews to narrow down your search. You can also visit websites such as accessibleGO for travel tips and specific recommendations. 

Instead of booking online, call and ask to speak with the manager. Ask questions about the features of the exact room that is available. Accessible rooms can vary even within the same hotel. You might want to find out if there is a roll-in shower (instead of one with a lip or tub). If you are bringing a patient (Hoyer) lift, make sure the room doesn’t have a platform bed with a solid base.
“Booking hotel rooms can be very difficult. A room may be called accessible by a hotel but that does not mean it meets your needs. It really is not a good idea to book online if you are in a wheelchair. There may be a roll-in shower but not an electric door opener. There may not be enough room for you to get around the room in your wheelchair. The only way to know is to talk to the hotel manager and ask questions to make sure the hotel is going to work for you.”
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​            — Ron Faretra, Veteran living with ALS
You can also ask about things like bed height, whether a hospital bed is available, and how far the room is from the elevator. You may also want to ask about the hotel’s disaster and evacuation policy, including what would happen if the power went out.

Once you are satisfied, be clear that you want to reserve the exact room that you discussed. Ask for the room number and the name of the manager.

Call back at least three days in advance and the day before your arrival to make sure they are still holding your specific room and have your requests on file.

If the hotel does not have some of the devices you will need, you can ask the local ALS organization at your destination if they can loan you those devices.

"Be not afraid—just be prepared."

– Bernadine Okeke, person living with ALS who travels between the U.S. and Nigeria

Learn More

Here are some online resources where you can find additional tips and information:


​We developed this page in collaboration with Home Accessibility and Assistive Technology Specialist Alisa Brownlee and Ron Faretra, a Veteran living with ALS.