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Travel Tips for People with ALS and Their Families

Travel can create meaningful memories for families. For people living with ALS, it can also present unique challenges that require thoughtful planning and the right support.

At ALS United Mid-Atlantic, our care team helps individuals and families prepare for safe, accessible, and enjoyable travel experiences. With the right mobility equipment, medical planning, and accessibility strategies, travel is possible, and empowering.

Planning Accessible Travel with ALS

People living with ALS often face obstacles related to mobility, respiratory needs, communication devices, and transportation. Our team works closely with families to create customized travel strategies that support:

  • Power wheelchair transportation
  • Respiratory equipment management
  • Accessible lodging selection
  • Emergency preparedness planning
  • Safe air and ground travel

With advance planning and expert guidance, families can travel with greater confidence and peace of mind.

Real Experience: Navigating Summer Travel with ALS

Recently, Sarah, a Montgomery County, PA resident living with ALS, shared a video about her experience navigating beach travel with mobility challenges.

ALS Patient Reacts to Summer Travel Challenges at the Beach
Her story highlights common concerns, including:

  • Sand accessibility for wheelchairs
  • Navigating boardwalks and uneven terrain
  • Access to beach wheelchairs

Stories like Sarah’s help other families better prepare for similar travel environments.

Expert Advice: How to Travel with ALS

Alisa Brownlee, ATP, CLIPP, CAPS, WSP, CEAC/Mastery, Home Accessibility and Assistive Technology Specialist, supports families in planning safe and accessible travel.

She recently contributed expert advice to Your ALS Guide in their resource:
Your ALS Guide: Travel for People with ALS—How to Travel by Van or Plane

Key topics include:

    • Organizing important medical and personal documents
    • Preparing for mobility and respiratory equipment
    • Planning communication device access
    • Working with accessible travel agents
    • Traveling by train, airplane, cruise ship, or adapted van
    • Flying with a power wheelchair
    • Choosing accessible hotels and lodging
    • Connecting with peer communities like the Traveling with ALS Facebook group

    Flying with Power Wheelchairs and Medical Equipment

    Air travel requires additional preparation. The Muscular Dystrophy Association (MDA) offers practical recommendations for passengers traveling with medical equipment and power wheelchairs.

    Important considerations include:

    • Reviewing airline accessibility policies in advance
    • Labeling and photographing mobility equipment before departure
    • Carrying physician documentation for respiratory devices
    • Communicating directly with airline accessibility desks
    • Preparing backup batteries or charging solutions
    • Understanding TSA screening procedures for medical devices

    Proactive communication with airlines reduces the risk of equipment damage or delays.

    Key Travel Tips for People with ALS

    To help ensure a smoother trip:

    1. Plan Early
      Book accessible rooms and transportation well in advance.
    2. Confirm Accessibility Details
      Call hotels, airlines, and rental services directly to verify:
      • Door widths
      • Roll-in showers
      • Elevator access
      • Charging access for medical devices
    3. Prepare Medical Documentation
      Carry:
      • Physician letters
      • Equipment documentation
      • Emergency contacts
      • Medication lists
    4. Protect Mobility Equipment
      Label wheelchairs clearly and take photos before air travel.
    5. Connect with ALS Travel Communities
      Peer advice from others living with ALS can be invaluable.

      Support for Local ALS Families

      If you have questions about travel planning, mobility devices, or accessibility resources, contact your ALS United Mid-Atlantic social worker or reach out directly to:
      Alisa Brownlee, ATP, CLIPP, CAPS, WSP, CEAC/Mastery
      Alisa@alsmidatlantic.org

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