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Tips for Traveling with DM

Loraine Dressler from Huntington Beach, California is the main caregiver for her grandson Zen, who was diagnosed with congenital myotonic dystrophy at birth. Zen’s severe disabilities haven't stopped her from traveling with Zen, in fact, she has been traveling with him since he was 2 years old. Zen is now 6 years old and Loraine has learned many tips and tricks along the way. She believes that traveling has increased his involvement in his surroundings and she hopes to empower others to travel and expose their family members to see more. Loraine provided the below travel advice and stated that while this might sound like a lot of work, it easily becomes second nature, as all of these things make it easier to travel with a person who has a disability.

Planning your flight:

  • Do your research ahead of time and plan ahead! Think about every entity that you will come into contact with on the day of travel
  • Call the airline that you are flying with to discuss special accommodations that your loved one may need, including seating, medical equipment, medications, etc. Some medical equipment needs to be approved by airlines before travel and each airline has their own requirements
  • Be aware of the ‘Air Carriers Access Act' that requires airlines to provide certain accommodations free of charge to people with disabilities
  • Call TSACares twice, once to notify them of your travel plans, and the second time, a few days before travel to make sure they are prepared to assist you as needed. If applicable, request to use one of their luggage carts to use all the way to the boarding area

Packing / supply tips:

  • Laminated doctor’s note for the airline (if required for special equipment, priority boarding, etc.)
  • First aid kit
  • Back up batteries for medical devices/equipment (this is a deductible medical expense on taxes)
  • Medications don’t need to adhere to the 3 oz. rule but need to be in a prescription package

The day of your flight:

  • Put the airline, TSACares, and airline complaints resolution official numbers in your cell phone
  • Pay for a car service to pick you up at home if you are traveling with equipment and luggage
  • Arrive at the airport least 2 hours ahead of time to allow for check-in, security, boarding, etc.

Travel resources:

  • TSACARES - specific department for people with disabilities, they will meet you at the ticket counter and walk you through the airport, help with medical equipment, screening, etc.
  • Complaints resolution official (CRO) - responsible for resolving disability-related issues that have escalated beyond an initial interaction with airline personnel.
  • Disability discount passes - national parks, beaches, etc.
  • AccessibleGO – accessible travel resources, booking, discounts
  • Huffington Post - articles on a variety of topics related to disability, including travel resources and experiences.





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