Essential travel tips for people with Friedreich’s ataxia

Last updated June 21, 2024, by Susie Strachan

Whether you are embarking on a road trip, traveling by train, setting sail on a cruise, or flying to a distant destination, traveling with Friedreich’s ataxia (FA) can be complicated and rewarding.

Following these FA travel tips, which include researching your destination, managing fatigue, and knowing what to do in an emergency, will help you overcome challenges so you can focus on enjoying your getaway.

Get clearance from your doctor

FA is a genetic disorder that affects your nervous system and muscles.

Along with difficulty moving, you may experience other FA symptoms, such as cardiac and neurological issues, diabetes, speech and swallowing difficulties, and bladder and bowel issues.

One of the first things you should do is schedule a consultation with your doctor to discuss your trip plans. Ask about how to deal with a medical emergency while traveling and if they have recommendations for local hospitals, clinics, and emergency services.

What to request from your doctor:

• a travel letter outlining your medical condition, medications, and any special travel requirements, especially for flying and international trips.
• a personal health record with details about your condition, ongoing treatments, respiratory support needs, and emergency contact information. It can be printed out or a digital record added to your smart device.
• a prescription for extra medication to fill ahead of time if your insurance allows it. Your travel plans may change unexpectedly due to delays or cancellations, or if your medication is lost or stolen. Finding the exact medication you need, especially in a foreign country, might be difficult or even impossible.
• a written prescription to take with you.
• advice on how to find reliable health services and specialists at your destination, especially ones who know how to treat FA.

You may want to speak with a pharmacist about medication-specific advice and suggestions for what medical supplies to take with you. Also, check whether the pharmacy can do early refills before you depart or, if traveling domestically, transfer your prescription to a location near your destination.

Research your destination

When you have a destination in mind, it can help to learn as much as you can about it.

For example, can you book accessible rooms? Are most of the streets, restaurants, and tourist attractions navigable by someone with mobility issues?

You should also check for:

• mobility-friendly transportation and public facilities
• mobility-friendly tours, sightseeing, outdoor activities, and cultural experiences
• flat terrain and wheelchair-friendly roads and sidewalks.

Other useful FA travel tips:

• Contact the airline, tour operators, cruise lines, resort, or hotel ahead of time to learn about accessibility features and services.
• Be mindful of places that have temperature extremes and climate conditions that can affect your energy levels.
• Try apps like Wheelmap to help you find accessible places and facilities at your destination.
• Use a translation app or service to help you convey medical information in a foreign language. Learn key phrases in advance to communicate with healthcare providers and emergency services.

An FA support group can be another way to get information about a destination, including first-hand travel insights based on the experiences of those living with FA. They may be able to provide advice and practical travel tips, information about specific destinations and tours, and referrals to accessible travel services.

Specialized travel services including Accessible Travel Solutions and Wheel the World have expertise in accessibility. They may be able to assist you in finding destinations, accommodations, and transportation options that are FA-friendly and supportive of your medical considerations.

Accessible accommodation

While online booking is convenient, it’s better to directly contact the place you plan to stay and confirm they have accessible features, including rooms for people who use mobility aids. This is especially important if you’re visiting older or historic towns.

Ask if the hotel’s accessible rooms have:

• roll-in showers
• grab bars in the bathroom
• lowered sink
• wider doorways
• an elevator, if rooms aren’t located on the main floor.

You and your caregivers may need extra space for bathing and dressing, and for transfers from bed to wheelchair. Ask for the room’s dimensions and layout to ensure you can comfortably maneuver. You should also inquire about elevators and ramps in the public spaces.

Vacation rental platforms often include searches for properties modified for accessibility, which may include:

• condominium complexes with units designed for accessibility, with features similar to accessible hotel rooms and more living space that can accommodate adaptive equipment
• accessible apartments that may offer concierge and housekeeping services.

When traveling to larger cities, ask if the hotel offers services such as accessible airport shuttles or can recommend a service.

The major cruise lines should have accessible cabins, public areas, restrooms, dining, and entertainment areas. You can also check that the cruise:

• has swimming pools with lifts and accessible entry points
• offers shore excursions designed to accommodate passengers with mobility issues
• has onboard medical facilities that can handle FA symptoms
• can accommodate special dietary requirements, such as food that is easier to swallow.

Prepare your travel essentials

Consider sharing your packing list with your caregiver or travel companion to ensure you don’t forget any essentials.

In addition to clothing that is comfortable and suitable for the climate of your destination, pack:

• extra batteries and charging cords for any electronics, including medical equipment
• medications in their original, labeled packages to avoid issues with customs or security; put these in your carry-on bag to avoid being lost, delayed, or damaged
• health insurance cards and travel insurance documents
• a list of emergency contacts, including family and friends.

Before leaving on a trip, you may also want to:

• get lightweight and portable mobility aids, such as a folding wheelchair, scooter, or rollator
• rent a scooter or power wheelchair at your destination instead of bringing one
• buy travel insurance that covers medical expenses and emergencies, including hospitalization in another country and medical flights back to your home. Check that the insurance policy covers the cost of broken or lost medical equipment.

Many airlines have restrictions on bringing mobility aids and other durable medical equipment into the cabin during a flight. Contact the airline well in advance of your departure date to make arrangements and get more information.

• What are the policies for bringing mobility aids, such as wheelchairs or scooters, into the cabin or into checked luggage?
• Are there size and weight restrictions?
• What steps are taken to ensure that your mobility aid is not damaged during loading and unloading?
• Are there any services or equipment available if the mobility aid is delayed or damaged?
• What types of durable medical equipment (such as portable oxygen concentrators, CPAP machines, etc.) are allowed in the cabin?
• Are there restrictions on battery types (e.g., lithium-ion) or sizes for medical equipment?

Try to stick with home routines

When traveling, try to keep to your usual routine as much as you can to make it easier to follow your medication schedule and avoid getting fatigued.

The best way to do this is to jot down a few notes about your current daily schedule, such as:

• medication organization and schedule
• food preparation and other dietary needs
• physical therapy
• self-care, such as bathing and dressing.

Manage fatigue while traveling

Manage fatigue from FA and travel by building in rest breaks to your day so you can recharge your energy.

Even while seated in an airplane, train, or car, FA-related muscle weakness and spasticity can make sitting for long periods uncomfortable. It also can increase the risk of pressure sores. Bring cushions or supports, and plan for frequent breaks to stretch and move around.

Useful resources for your trip

Travel resources that offer advice for people living with FA include organizations, support groups and forums, and travel agencies that specialize in accessible travel.

Friedreich’s Ataxia News columnists offer their perspective and useful advice on topics such as travel, including columns by Jean Walsh on overcoming travel challenges and Matthew Lafleur sharing his feelings about vacations and FA.

Useful travel planning websites include the following:

• AccessibleGO has travel resources and reviews for people with disabilities and information on accessible hotels, attractions, and transportation.
• TripAdvisor has user reviews and ratings that specifically mention accessibility features.
• Airbnb and Vrbo have filters to search for accommodations that are wheelchair accessible.

Accessible attractions include the following:

• Many national parks have accessible trails and facilities. The National Park Service provides details on accessibility at each park in the U.S.
• Most major museums and theme parks offer detailed information about their accessibility features on their websites.

Organizations that offer FA resources and support, incorporating international travel, include:

• National Ataxia Foundation
• Friedreich’s Ataxia Research Alliance
• Canadian provincial FA groups
• FA support groups in the U.K.

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.