It’s estimated that almost 80 million people will travel more than 50 miles this holiday season for Thanksgiving alone, bringing all of us an opportunity to reconnect with loved ones, celebrate traditions, and create cherished memories for years to come.

For people living with ALS and their caregivers, the prospect of holiday travel may feel a little overwhelming, but with thoughtful planning and a positive outlook, it can also be deeply rewarding. By taking the time to prepare and prioritize accessibility and comfort, you can ensure a safe and stress-free journey.

Here are some tips to help make your travel experience a little easier, and bring you closer to those who matter most.

Start with a comprehensive plan

Before starting your trip, consult with your ALS care team to confirm that you’re safe to travel. Your doctor can provide advice tailored to your condition, whether it involves managing energy levels, addressing respiratory needs, or ensuring proper medication storage.

Key medical planning tips to consider:

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• Carry your medical information with you at all times. Bring your medical information with you, detailing your condition, medications, and potential complications. To help, we have developed a set of helpful tools to download and order free of charge. 
• Pack extra medications, just in case. Bring enough for your trip plus a few extra days in case of delays, and include a list of prescriptions with generic names for refills if needed. 
• Prepare for possible emergencies. Keep emergency contacts and a detailed itinerary accessible for all caregivers and family members.

Choose the mode of transportation that’s right for YOU

Between planes, trains, and automobiles, there are many options to consider getting you from here to there. Selecting the most accessible option for your journey is crucial to ensuring you have the best possible travel experience.

When traveling by air, consider:

• Informing the airline ahead of time. Notify them of your accessibility needs, including wheelchairs, scooters, or respiratory devices. Confirm these details at least 48 hours before your flight. 
• Protecting your mobility devices. Use bubble wrap or padding for delicate parts of your wheelchair and remove detachable components and attach handling instructions for airline staff to follow. 
• Taking advantage of available resources such as TSA Cares and the airline passenger assistance programs.

If you choose to drive, consider:

• Renting an accessible vehicle. If needed, rent a wheelchair-accessible van with ramps or lifts. Companies like MobilityWorks offer rentals across the country for day, week, or month-long trips. 
• Planning ahead for rest stops. Locate and choose stops with accessible facilities and build in time for breaks to avoid fatigue.

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If you choose train travel, consider:

• Staying in your wheelchair. Amtrak and other train services often allow passengers to remain in their wheelchairs, a more comfortable option for many.
• Requesting assistance. Stations often provide ramps or lifts for boarding, so call ahead to confirm accessibility.
• Prioritize finding accessible accommodations.

Let’s face it, accommodations can make or break a trip for anyone, but especially for people living with ALS and their caregivers. Research thoroughly and communicate directly with hotels or rental properties to ensure they meet your personal needs.

Some tips to consider when finding a place to stay include:

• Asking detailed questions prior to booking anything. Inquire about roll-in showers, wheelchair ramps, bed heights for Hoyer lifts, and accessible parking.
• Considering equipment rentals or loans. If needed, arrange for equipment like shower chairs, lifts, or beach wheelchairs through local providers, connect with your ALS Association care team or call 800-782-4747 for information.
• Using accessibility apps. Apps like Wheelmap or Google Maps can help you locate wheelchair accessible venues on the way and around you at your final destination.

Pack thoughtfully

Packing strategically can help save time, money and extra stress during your trip. Take the time to make a thoughtful list and be sure to check it twice.

Start your list with the essentials to pack including:

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• Medications, including extra doses.
• A portable “go bag” with medical records, emergency contacts, and travel essentials.
• Any respiratory equipment you will need, including extra batteries or chargers. 
• Detachable wheelchair parts and a toolkit for minor repairs.
• Communication aids if verbal communication is limited, such as letterboards or device apps.

And finally, make the most of your travel experience

While planning is essential, embracing the journey is equally as important. Here are some tips on how to focus on connection and joy:

Lean on available resources. Take advantage of resources designed for accessible travel such as:

• Online communities like the “Traveling with ALS” group on Facebook offer the opportunity to connect with others who share insights and advice.
• Accessibility apps and travel guides tailored for people living with ALS can simplify logistics and offer peace of mind throughout your journey.
• Reach out to your Association care team for equipment rentals or other local resources and recommendations.

Make sure everyone involved is on the same page. Whether you’re visiting family or friends, open communication and support will help ensure safety and comfort throughout the journey.

Tips for caregivers:

• Discuss expectations: Clarify needs, preferences, and goals before the trip.
• Plan for downtime: Schedule breaks to rest and recharge.
• Delegate tasks: Involve family or travel companions to share responsibilities and reduce stress.

Celebrate the small victories. Every successful trip, no matter the challenges, is a triumph. From navigating a new city to enjoying holiday meals with family, celebrating and enjoying the moment and shared experiences can make all the difference.

By planning ahead, leaning on available resources, and maintaining a positive attitude, you can ensure that your travels are meaningful and rewarding. The holidays are a time for celebrating togetherness, and the effort you put into traveling will help create memories that last a lifetime for everyone. 

For more information and tips for traveling, watch our previously recorded webinar, Transportation & Travel Tips for People Living With ALS. 

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.

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