Traveling with muscular dystrophy
Reviewed by For people living with muscular dystrophy (MD), traveling can be challenging. However, with planning, packing, and prepping, traveling with MD is possible.
Planning should reflect mobility, breathing, and cardiac issues, as well as medication, equipment, and personal care needs. It is vitally important that both the patient and the caregiver understand what needs to be done before and during travel to minimize discomfort and enhance safety.
Is travel with MD possible?
Yes, many people with MD can travel. However, travel needs may vary depending on the specific type of MD a person has, their current mobility level, and their reliance on assistive technology such as power wheelchairs or respiratory equipment.
How to prepare for a trip
It is important to plan travel in advance and prepare properly. This can help minimize the risk of rushing things at the last minute.
While planning, consider factors such as:
- facilitating travel arrangements for a caregiver
- wheelchair accommodation and accessibility
- ease of movement within the airplane cabin
- use of respiratory equipment such as ventilators, if needed
Other key elements of planning include the following:
- Plan for medical emergencies: Identify nearby hospitals and specialty clinics. Carry an emergency card specific to the type of MD, if available, that lists the diagnosis, baseline respiratory function, medications, and medical contacts. Also, bring a health or travel insurance card.
- Verify accessibility: Contact hotels, venues, and transit operators to confirm door widths, bed heights, and the availability of roll-in showers and ramps with appropriate slopes. Ask whether accessible attractions and beaches offer advance wheelchair rentals or accommodate a mobility device.
- Arrange assistance: Brief any travel companions on transfers, positioning, and daily care routines. Arrange trained assistance when it’s required
- Find equipment support: Locate nearby durable medical equipment providers for backup oxygen, wheelchair repairs, or rental equipment such as hoists and shower chairs. Confirm that powered medical devices can be charged safely, and pack any required adapters, transformers, or voltage converters.
Airlines may provide an oxygen service if recommended by a doctor. Contact the airline in advance to confirm whether it allows compact supplemental oxygen equipment to be carried on board and what requirements apply.
What to pack
While traveling, be sure to keep essential medical items in a carry-on so they stay safe and within reach if the checked luggage is lost. Pack the following:
Medications and documents
- Bring an adequate supply of prescription medications for the entire trip, and ask the care team or doctor whether additional medication is needed in case of delays.
- Carry a complete list of current prescriptions and dosages in case they need to be replaced while traveling.
- Ask the physician or care team for a letter explaining the specific type of MD and any assistance that may be needed. The letter may need to be presented at airport security along with any medications in their original packaging.
Equipment and maintenance supplies
- a charger for a powered wheelchair
- adapters, voltage converters, or transformers for overseas travel
- basic maintenance supplies, including a puncture repair kit and spare inner tubes
- removable wheelchair parts
- Respiratory and other medical equipment
What to know about transportation
The Air Carrier Access Act regulations mean that airlines cannot exclude passengers with disabilities traveling in the U.S. from any seat except where safety rules apply. Considering how to approach the flight before, during, and after travel can help ensure safe, comfortable transportation.
Before the flight
If a wheelchair will be used during air travel, the airline should be notified in advance to avoid inconvenience and ensure the ground crew is aware.
Before the flight:
- Measure the exact height, width, and weight of the mobility device before booking, and note whether it can be collapsed or tilted to help confirm that it will fit in the cargo hold.
- Tell the airline about any disability services or accommodations you may need when booking, such as an aisle chair or specific seating arrangements.
- Contact the airline one week before departure to confirm that all requested assistance will be available.
- Prepare written instructions explaining how to disassemble, fold, and reassemble the mobility device.
- Contact the Transportation Security Administration (TSA Cares) if assistance is needed in navigating airport security checkpoints.
- If possible, book all travel companions, family members, and personal care assistants on the same reservation so that everyone can potentially remain together if flight schedules or itineraries change.
Travel day and during the flight
While flying with MD and during transfers on the ground, it is vital to minimize stress and maintain safety and comfort.
Be sure to get to the airport 2 or 3 hours before departure. This should provide plenty of time for check-in, TSA, and disability assistance. The mobility device must be checked at the gate, so be sure to take photos and videos of its condition.
Take off any removable parts, such as joystick controllers or cushions, to bring them into the cabin. Then, hand-written instructions to airline staff and reconfirm any preboarding, wheelchair, or aisle chair requests at the gate.
If you have respiratory muscle weakness or reduced oxygen levels, talk with your respiratory care team before flying. They can determine whether a ventilatory or other respiratory support is needed during the flight. It is recommended to carry an extra ventilator or batteries that must be flight-compatible to ensure uninterrupted use during the flight. Alert the cabin crew if you feel unwell during the flight.
Disembarking
Follow the crew’s instructions closely when leaving the plane. If aisle chair assistance is needed, give the airport personnel verbal transfer instructions.
Check the mobility device for damage, and take photos or videos of any new damage.
Speak to the airline’s complaint resolution official about any issues with disability services or accommodations experienced during the flight or transfer. File a formal damage report if a mobility device has been damaged, and ask the airline whether temporary mobility support is available while the device is being repaired or replaced.
If the airline has not met its disability-related obligations at any point, use the U.S. Department of Transportation’s online portal to file a complaint.
Other modes of transport
Some people prefer to travel by car, train, or cruise ship. Some cruises offer accessible travel planning, facilities, and cabins.
Speak to cruise operators about:
- hoists
- shower chairs
- the ability to bring and use mobility or medical equipment, such as powered wheelchairs and ventilators, on board
- how passengers with disabilities can evacuate in case of emergency
- accessible activities and excursions at each stop of the cruise
- the possibility of early boarding, adapted transport for excursions, and priority disembarking
Train travel can sometimes be more accessible than air travel, as it allows wheelchair users to remain in their own mobility device. This may reduce the need for transfers and the risk of equipment damage in cargo holds.
If planning to travel by car, such as in a taxi or rideshare, a wheelchair-accessible vehicle may be needed. Their availability will depend on the city or country.
How to stay safe while traveling
Managing health and comfort while traveling with MD involves taking proactive steps and following the care team’s advice. This may include:
- Changing positions periodically during long periods of sitting to reduce stiffness and pressure on the skin, and using specialized cushions recommended by a physical therapist.
- Being aware that extreme temperatures and altitude changes, including lower air pressure in aircraft cabins and at high elevations, can affect muscle comfort and baseline respiratory function.
- Seeking testing at a local medical facility for any unexpected health changes, such as difficulty breathing or a fever.
Other information
The provisions regarding accessibility for people living with MD who are traveling can vary from one country to the next. According to the Muscular Dystrophy Association (MDA), many individuals with MD have experienced accessibility problems and damage to their mobility aids during air travel.
The organization has created an accessible air travel resource center to guide people with neuromuscular diseases regarding travel requirements.
The MDA is also gathering input from the community to help the Federal Aviation Administration create a policy that is favorable to people living with MD, including provisions to make air travel safer and easier and to help reduce problems associated with traveling with mobility aids.
Muscular Dystrophy 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.
