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Navigating Fall and Holiday Travels with ALS: Tips and Considerations

November 14, 2024 |

Joumana Fawaz-Baroody, RN, BSN, Vice President of Care Services, ALS United Greater Chicago

Navigating Fall and Holiday Travels with ALS: Tips and Considerations

Traveling during the fall and holiday seasons can be a joyous time for many, but for individuals living with ALS, it can present unique challenges. With thoughtful planning and preparation, you can navigate these challenges and enjoy a smoother, more enjoyable travel experience. Here’s a comprehensive guide to help you plan your travels with ALS during the fall and holiday seasons.

Planning Ahead

1. Consulting with Healthcare Providers: Before making travel plans, consult with your healthcare team, including your neurologist and ALS specialist. They can provide guidance on your current health status, medication management, and any specific precautions you may need to take while traveling. Discuss your itinerary, potential risks, and emergency protocols. Ensure you are safe to fly, as changes in air pressure may require special considerations or tests.

2. Choosing the Right Destination: Select destinations that are accessible and accommodating for individuals with mobility challenges. Research hotels, restaurants, and attractions to ensure they have necessary accessibility features, such as ramps, elevators, and accessible bathrooms. Websites like AccessibleGO and Access Travel provide valuable information and reviews from travelers with disabilities.

3. Travel Insurance: Explore travel insurance options that provide coverage for pre-existing medical conditions, including ALS-related needs. Verify coverage details for medical emergencies, trip cancellations, and medical evacuations to ensure comprehensive protection.

Packing Essentials

1. Medical Supplies: Pack an ample supply of medications, including those prescribed for ALS symptoms and related conditions. Carry a list of medications, dosages, and contact information for your healthcare providers. Consider packing medications in your carry-on bag to ensure access in the event of travel delays or lost luggage.

2. Mobility Aids: Bring necessary mobility aids such as walkers, wheelchairs, or scooters. Ensure they are in good condition and suitable for travel. Consider lightweight or foldable options for easier transport. If flying, inform the airline in advance about your mobility aids and request assistance for boarding, disembarking, and transferring between connecting flights if needed.

3. Communication Tools: If you use communication devices or aids, ensure they are fully charged and functioning properly. Bring backup batteries or chargers as needed. Consider carrying a written communication card with commonly used phrases or medical information to facilitate interactions with airport personnel or accommodations staff.

Travel Logistics

1. Transportation Considerations:  Arrange for accessible transportation options to and from the airport, train station, or other travel hubs. Notify airlines or other carriers in advance about your mobility needs and any specific accommodations required, such as wheelchair-accessible vehicles or assistance with boarding.

2. Accommodation Planning:  Choose accommodations that meet your accessibility needs, such as wheelchair-accessible rooms or accommodations close to elevators. Contact the hotel or rental property ahead of time to confirm accessibility features and request additional amenities if necessary, such as shower chairs or bed rails.

3. Meal Planning: Inform restaurants or catering services about any dietary restrictions or swallowing difficulties associated with ALS. Consider bringing along familiar snacks or nutritional supplements to ensure dietary needs are met. Carry a list of preferred foods or ingredients to facilitate meal preparation and ensure safe dining experiences.

During Your Trip

1. Hydration and Nutrition: Maintain proper hydration and nutrition, especially if traveling disrupts your regular routine. Carry water and nutritious snacks to stay energized throughout the journey. Schedule meal breaks to avoid fatigue and ensure adequate intake of calories and fluids.

2. Rest and Pace Yourself: Pace activities to conserve energy and prevent fatigue. Plan breaks between outings or events to rest and recharge. Listen to your body’s signals and prioritize activities that are enjoyable and manageable given your current health status.

3. Weather Considerations: Be prepared for changes in weather, particularly if traveling to a different climate. Pack appropriate clothing and accessories to stay comfortable and protected. Monitor weather forecasts and plan indoor or alternative activities in case of inclement weather that may impact outdoor activities.

Enjoying the Holiday Season

1. Embracing Festive Activities:  Participate in holiday traditions and activities that bring joy and create lasting memories with loved ones. Choose activities that are accessible and manageable, considering your energy levels and mobility.

2. Connecting with Support Networks: Seek out ALS support groups or local resources at your destination for additional assistance or information. Connecting with others who understand your experiences can be comforting and provide valuable insights or recommendations for accessible attractions or services.

3. Adapting to Changing Needs: Be flexible and open to adjusting plans based on your energy levels and health status. Prioritize activities that enhance your well-being and enjoyment of the season. Consider alternative ways to participate in holiday celebrations, such as virtual gatherings or modified activities that accommodate your needs.

After Your Trip

1. Post-Travel Follow-Up:  Schedule a follow-up appointment with your healthcare provider to discuss your travel experience, any challenges encountered, and adjustments to your care plan if needed. Review medications, hydration levels, and any changes in symptoms that may require attention.

2. Reflecting on Achievements: Celebrate the successful completion of your trip and the memories created. Reflect on what worked well and consider adjustments for future travels based on your experience. Share your travel tips and insights with the ALS community to support others planning their own journeys.

Additional Tips and Resources

  • TSA Cares: A toll-free helpline for travelers with disabilities and medical conditions 1-855-787-2227. TSA Cares can provide information about screening policies, procedures, and what to expect at the security checkpoint.
  • TSA Contact Center: Available to answer questions by email at TSA-ContactCenter@tsa.dhs.gov or phone at 1-866-289-9673. Staff are available from 8 a.m. to 11 p.m. weekdays and 9 a.m. to 8 p.m. weekends/holidays.
  • Passenger Support Specialists: TSA officers trained to assist travelers with disabilities and medical conditions. Request a Passenger Support Specialist at the security checkpoint for assistance.
  • Accessible Transportation: Websites like Wheelchair Getaways (https://www.wheelchairgetaways.com/) and Accessible Vans of America (https://www.accessiblevans.com/) offer rental options for wheelchair-accessible vehicles.
  • Airline Travel: Inform airlines about your mobility needs and request assistance with boarding and seating. Newer planes may have accessible restrooms and aisle chairs.
  • Health and Evacuation Insurance: Ensure you have up-to-date health insurance coverage while abroad, including medical evacuation. U.S. Medicare and Medicaid do not provide coverage outside the country.

Safety Tips for International Travel

1. Register with the U.S. State Department: By registering, you will help the U.S. State Department contact you if there is a family emergency in the United States or if there is a crisis where you are traveling.

2. Carry Copies of Important Documents: Carry a copy of your written itinerary and directions for where you wish to go. Leave a copy of the itinerary, airline tickets, credit cards, serial numbers of your traveler’s checks, passport, and contact details with a trusted family member or friend at home. Include contact information for the nearest U.S. embassy or consulate at your travel destination(s). Carry emergency contact information for your family in the United States with you. These documents can help you if you get lost or need assistance.

Useful Links

By planning ahead, packing thoughtfully, and embracing flexibility, individuals with ALS can enjoy fall and holiday travels while prioritizing their health and well-being. Each journey offers opportunities for connection, exploration, and celebrating life’s moments, ensuring meaningful experiences for both travelers and their loved ones.

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