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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 6 replies, has 4 voices, and was last updated by  Kevin Schaefer 2 months ago.

    • Author
    • #19339
       Kevin Schaefer 

      Hey everyone! Hope you’re all having a great week.

      Check out my latest column here. I had to get bloodwork done a few weeks ago, in preparation for my eighth Spinraza injection. Finding a vein to draw blood from is tough for a lot of us. Fortunately though, this particular appointment went great.

      This situation made me think about the idea of “finding the sweet spot.” I wrote about how this concept applies to positioning in my wheelchair and bed, working at my computer, and other things. I hope you enjoy.

      Can you relate to this notion? Do you have any other examples?

    • #19348
       Tracy Odell 

      Wow! I can certainly relate!

      • #19353
         Kevin Schaefer 

        Thanks for the feedback! Yeah it’s crazy how many scenarios this idea applies to.

    • #19351

      Nicely wrote column Kevin, lots of humor, but ”Lexington, Kentucky” line was the best one for me:D Is Lexington, Kentucky really notorious for accessibility, or is it like generally one should not expect many accessible sites in Kentucky state? Whatever the reason is, I like how the whole sentence sounds.

      So as I said I like the humor, but it is really kind of text that shows how much trouble people with SMA have to go through every single day.

      • #19354
         Kevin Schaefer 

        Thank you!

        And yeah my parents and I were in Lexington in May, which I wrote about. Oy. it was a hassle.

    • #19365
       DeAnn R 

      I can certainly relate. A few years back during a hospital stay I questioned if I’d ever be comfortable again. It’s also why I’m hesitant to get a new chair. Luckily most people understand that I’m seated for an extended amount of time so it’s important to be comfortable. I try not to be too picky though.

      • #19437
         Kevin Schaefer 

        I hear ya. I try to hold on to the same chair for as long as possible. Getting comfortable in a new one can be tricky!

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