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    Planes, Trains, & Accessible Travel With SMA

    Talk to your doctor to determine if you or your child is fit to travel.

    Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.

    I have always flown with Leah by myself, just the two of us. Call me crazy; it’s OK, I am. There are some things we have learned that have made it so much easier for us.

  • This topic contains 8 replies, has 5 voices, and was last updated by  Kevin Schaefer 3 months, 3 weeks ago.

    • Author
      Posts
    • #19494
       Kevin Schaefer 
      Keymaster

      Hey everyone! Hope you all had a great weekend.

      I know I’ve posted about this before, but I’m traveling this week for the 2019 Cure SMA conference in Anaheim, California. It’ll be my first time flying with my wheelchair, and my family and I have done everything we can to prepare.

      Also, read my column from a few months ago about flight accommodations for wheelchair-users.

      Does anyone here have any last-minute tips? We’re going to wrap my chair in bubblewrap to keep it protected, but I’m open to other suggestions as well.

      Thanks!

    • #19527
       DeAnn R 
      Keymaster

      No tips as I have zero experience with this. Just wanted to say good luck and have fun!

    • #19528
       Tracy Odell 
      Participant
      • Don’t forget to pack your charger.
      • Check that the outlet you use for your charger in your hotel room stays on when the room light is turned off. Otherwise, you will find yourself running out of power and wondering why.
      • Remove your seat cushion and keep it with you – either sit on it so your back is at a better height compared to the seat height of the plane seat, or if your feet don’t reach the floor, put it under your feet.
      • Remove anything from the chair that you can put into your onboard like each – like the control joystick. These are very vulnerable to being damaged.
      • Use a lot of zip ties to firmly attach wires to the chair. They can get snagged and torn off easily otherwise.
      • If your footrests are removable, put them in your luggage.
      • Use packing tape or electrical tape to tie down loose bits that stick out.
      • I don’t know if your airline has this service, but sometimes you can ask for a crate for your wheelchair to be transported. That protects it from a lot of damage from other things falling onto it in the cargo hold.
      • Don’t have anything to drink for at least 12 hours beforehand unless you have an easy way to use their washroom on board. Some airplanes apparently have wheelchair accessible bathrooms on board but they are quite small and you might not have room for someone to help you inside the bathroom.
      • Use the washroom as close as possible to getting onto the plane to buy you some extra time. After you land, you may find takes an extra 1 or 2 hours for them to get you off the plane, to your wheelchair, and then to an accessible washroom.
      • Have a list of wheelchair repair places handy available at your destination…just in case!
      • Enjoy the trip!
    • #19539
       Ryan Berhar 
      Keymaster

      Good luck man. I would say just be as vigilant as possible about taking care of your chair. I know it’s out of your hands for the most part.

      • #19557
         Kevin Schaefer 
        Keymaster

        Thanks! And yeah, fingers crossed that the airline folks take proper care of it.

    • #19542
       Adnan Hafizovic 
      Participant

      Kevin can you spend 12 hours without water?

      • #19558
         Kevin Schaefer 
        Keymaster

        Hey Adnan. Well, it’s not that long a flight, but also I wear a catheter everyday. I never use public bathrooms. Thanks for your concern though. I appreciate it.

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