It is estimated that nearly 80 million people will travel more than 50 miles this holiday season for Thanksgiving alone, giving us all the opportunity to reconnect with loved ones, celebrate traditions and create treasured memories for the years to come.
For people with ALS and their caregivers, the prospect of vacation travel can seem a little overwhelming, but with thoughtful planning and a positive attitude, 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 trip.
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 you begin your trip, consult your ALS care team to confirm that it is safe for you to travel. Your doctor can give you advice tailored to your condition, whether it's managing energy levels, meeting respiratory needs, or ensuring proper storage of medications.
Key medical planning tips to consider:
- Always have your medical information with you. Bring your medical information with you, detailing your health, medications and potential complications. To help you, we have developed a set of useful tools to download and order for free.
- Carry extra medications, just in case. Bring enough for your trip plus a few extra days in case you're late, and attach a list of prescriptions with generic names for refills if necessary.
- Prepare for possible emergencies. Keep emergency contacts and a detailed itinerary accessible to all caregivers and family members.
Choose the mode of transport that suits YOU
Between planes, trains, and automobiles, there are plenty of options for getting from place to place. Choosing the most accessible option for your trip is crucial to ensuring you have the best possible travel experience.
When travel by planeconsider:
- Inform the airline in advance. Inform them of your accessibility needs, including wheelchairs, scooters or breathing apparatus. Confirm this information at least 48 hours before your flight.
- Protect your mobility devices. Use bubble wrap or padding for delicate parts of your wheelchair, remove detachable components and attach handling instructions for airline staff to follow.
- Take advantage of available resources such as The TSA cares and airline passenger assistance programs.
If you choose to drive, consider:
If you choose to travel by train, consider:
Let's be realistic, Accommodation can make or break a trip for anyone, but especially for people living with ALS and their caregivers. Do thorough research and communicate directly with hotels or rental properties to ensure they meet your personal needs.
Here are some tips to consider when looking for accommodation:
- Ask detailed questions before booking anything. Ask about roll-in showers, wheelchair ramps, bed heights for Hoyer elevators and accessible parking.
- Consider renting or loaning equipment. If necessary, arrange the purchase of equipment such as shower chairs, lifts or beach wheelchairs from local suppliers, connect with your ALS Association Care Team or call 800-782-4747 for information.
- Use accessibility apps. Apps like Wheel plan Or Google Maps can help you locate wheelchair accessible places on the way and around you to your final destination.
Pack carefully
Packing strategically can help you save time, money, and additional stress during your trip. Take the time to make a thoughtful list and be sure to check it twice.
Start your list with the essential items to pack, including:
- Medicines, including extra doses.
- A portable “go bag” containing medical records, emergency contacts and travel essentials.
- Any breathing equipment you will need, including extra batteries or chargers.
- Removable wheelchair parts and toolbox for minor repairs.
- Communication aid if verbal communication is limited, such as letter boards or device apps.
And finally, make the most of your travel experience
While planning is essential, undertaking the journey is just as important. Here are some tips 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” The Facebook group provides the opportunity to connect with others who share ideas and advice.
- Accessibility apps and travel guides designed for people living with ALS can simplify logistics and provide peace of mind throughout your journey.
- Contact your Association’s care team for equipment rental or other local resources and recommendations.
Make sure everyone involved is on the same page. Whether you are visiting family or friends, open communication and support will help ensure safety and comfort throughout the journey.
Advice for caregivers:
- Discuss expectations: Clarify your needs, preferences and goals before traveling.
- Schedule downtime: Schedule breaks to rest and recharge.
- Delegate tasks: Involve family or traveling companions to share responsibilities and reduce stress.
Celebrate small victories. Every successful journey, regardless of the challenges, is a triumph. Whether it's exploring a new city or enjoying holiday meals with family, celebrating and enjoying the present moment and shared experiences can make all the difference.
By planning ahead, leveraging available resources, and maintaining a positive attitude, you can ensure your travels will be meaningful and rewarding. The holidays are a time to celebrate togetherness, and the effort you put into the trip will help create memories that will last a lifetime for everyone.
For more information and travel tips, watch our previously recorded webinar, Transportation and travel tips for people living with ALS.
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