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 at least 2 hours ahead of time to allow plenty of time for check-in, security, boarding, etc.

During your Trip:

  • For those affected with Dysphagia, bring your own food to supplement meals eaten out, such as nut butter, hummus, protein drinks, soups, and a mini blender to use if there are leftovers you can't chew.
  • If you have hand grip issues, bring cutlery with wide handles, similar to this one on Amazon.com.
  • Bring a cane to use in airports even if you don't normally use a cane. Request a wheelchair for assistance to the gate. Consider using a wheelchair at museums or parks when they are available and there is a lot of walking.
  • To avoid germs and infections, don't eat food that children have had a role in preparing.
  • For relaxation, put soothing audio on your smartphone such as nature sounds, guided meditation, etc. and bring ear plugs so you can tune out loud noises at big events or help you get to sleep in an unfamiliar place.
  • Bring your favorite pillow case to use if you don't like the pillow cases in a hotel.

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.
  • “Travel Near & Travel Far: Step Out of Your Disabled World” by Terry Cohen and Barry Cohen for advice and travel inspiration
  • DMV Disabled Parking Placard information
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