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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 3 replies, 3 voices, and was last updated 5 months ago by Ryan Berhar.

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      • #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
        Participant

        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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