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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 3 replies, has 3 voices, and was last updated by  Ryan Berhar 1 month, 1 week ago.

    • Author
      Posts
    • #19624
       DeAnn R 
      Keymaster

      Whizzing Through Summer: Altering Urination to Enable Hydration

      I hope everyone is having a fantastic Wednesday! I wanted to share with you Katie’s latest column, Whizzing Through Summer: Altering Urination to Enable Hydration. It’s an article regarding a topic that’s been on my mind lately…having to pee when I don’t have the opportunity. I’m still of the “just hold it” club, but as Katie mentioned that’s not the healthiest. She talks about a procedure she’s had, a Mitrofanoff appendicovesicostomy, eliminating the need to hold it or become dehydrated doing “pee-math.” For her it’s been life changing. I know others who have a SPC. If I would have known about these options when I was younger I probably would have done it. Now though I’m hesitant to do surgery, but I can certainly see the benefits. Have you done anything to alter urination? I would love to hear more stories since I’m still on the fence.

    • #19721
       Rachel Markley 
      Participant

      I, too, wish I had known about this at a younger age! I am seeing a urologist for this now and hope to do an SPC with just local anesthesia.

      • #19736
         DeAnn R 
        Keymaster

        Let me know what you find out! It’s something I would consider, but not if I have to be put under.

    • #19739
       Ryan Berhar 
      Keymaster

      Very interesting. For me, it’s really only an issue on trips. I sometimes have to hold it in these cases. I’ve considered looking into an external catheter, but the thing is I need to get out of my chair a few times a day anyway to prevent pain. On trips I just do the best I can, usually laying down in the backseat of the van. I know that’s not really an option for the ladies. Us guys have it a bit easier in this department.

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