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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 3 days, 15 hours ago by Alyssa Silva.

    • Author
      • #21960
        DeAnn R

        Hey everyone!  Hope you’re all having a great start to the new year.

        The first episode of Dose of DeAnn for 2020 is live. As some of you may know, I lost my service dog, Roy, in November. In this video I tell you more about what happened. I address the question of whether or not I’m getting another service dog as well.  You’ll also see a glimpse of how I’m adjusting to not having a service dog, and some of the challenges I face. 

        It hasn’t been an easy transition for me.  Your love and support has meant the world to me. In the year ahead I plan on sharing life’s challenges, rewards, and everything in between.   

        What are some challenges you’re facing? Do you have anything in 2020 you’re looking forward to? I’d love to hear about it!


      • #21968
        Tracy Odell

        Thank you for sharing about your service dog. I don’t have a service dog but I imagine it is a big decision. Watching your video and seeing your ingenuity and picking things up maybe think that we should have a series of videos on this forum about all our tricks for doing everyday things. There’s a lot we can learn from each other! I haven’t tried your technique of using tape on a stick, but I do have an extendable stick with a magnet at the end which is helpful for picking up thumbtacks (which can give me a flat tire if I run over them), paperclips and pens with a metal clip.

      • #21971
        DeAnn R

        Thanks Tracy. Ha, ha I have driven around with a tack in my tire before. Luckily my tires are solid so no damage done. I also have a tool with a magnetic end. It is helpful, but is a little heavy and surprisingly I haven’t found much that it sticks to. We certainly have to be resourceful. Another of my favorites is a fiberglass arrow shaft with a target practice tip. It’s super lightweight and tape sticks to it really well. The blunt point tip works well for pushing buttons.

      • #21979
        Alyssa Silva

        I agree with Tracy! Watching videos of disability hack would be so useful! DeAnn— you are so much more creative than I am. 🙂

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