Traveling with ALS

Traveling with ALS can be both an adventure and a challenge. The requirements will vary depending on the stage of ALS and the use of assistive devices. For a person with ALS (PALS) who still has some mobility and isn’t using assistive devices for mobility, travel can be less complex, particularly when traveling alone. Here are some tips I learned along the way to help make the journey smoother.

Consider what to pack and your mobility issues. For example, consider using a backpack worn on the front to keep your arms and hands free for balance and to reduce the risk of theft. Avoid carrying food or drinks to minimize the risk of spills and the need to manage items while moving.

Most public transportation facilities have ADA-compliant bathrooms. Use these for greater privacy and to take the time you need. I found that wearing sweat suits made travel easier, as zipping up pants became a challenge.

Plan to arrive early to allow extra time for assistance from public transportation services. It’s often wise to add an hour to your travel plans. Avoid using ATMs at these facilities, as ALS can impact fine motor skills, and exposing personal information to strangers can be risky.

I also learned that if you’re using assistive devices like foot braces, wheelchairs, or communication devices, ensure you have a transfer belt or sling and a neck brace for safety. Public transportation employees may not be familiar with transferring passengers, so having these tools can be helpful.

Most airlines have designated storage for wheelchairs and power wheelchairs in the baggage area. Provide the airline with the weight and battery type of your power wheelchair. To avoid damage, remove the joystick and its housing unit and keep them with you in the cabin. The same applies to communication devices. Airlines board passengers needing assistance before others. During boarding, you’ll be transferred to a small chair in the passenger ramp and then to your seat. Ensure you inspect your wheelchair before and after it’s handled by airline staff. Show the staff how to disengage the braking system for manual mode and request that they pass this information to your destination.

Traveling by car can offer more convenience and control. Ensure you have extra power sources for communication devices, medical equipment, and power wheelchairs. Most accessible vans have power outlets, and the ability to plan your own schedule can provide comfort and flexibility.

Most hotels offer ADA accommodations. After making your reservation, confirm that an ADA-compliant room with bathroom rails and a shower chair is available. Proper preparation can make your stay more comfortable.

Keep contact information for your local ALS organization, equipment suppliers, and any relevant service providers handy. Having extra power chargers is also essential, as these chargers are often unique and not readily available in regular stores.

ALS may limit physical movement, but it doesn’t diminish the desire to remain active and engaged. With careful planning and preparation, PALS can continue to explore and enjoy travel. Get out there and make the most of your adventures! PALS, get your travel on!

Written by The Write Stuff Team Member Randy Gregory, Jr.