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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 2 replies, 2 voices, and was last updated 7 months, 2 weeks ago by Kevin Schaefer.

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      • #18159
        Kevin Schaefer
        Keymaster

        Happy Monday everyone! Hope you all had a great weekend.

        Check out the latest episode of the SMA News Today Podcast here. In this episode, I interviewed Angela Titcombe and her husband Justin. Angela is a schoolteacher from Houston, Texas who has SMA Type 2, and she and Justin got married in June of 2018.

        When Angela and I met on a panel at the 2018 Cure SMA conference, I knew I had to have her on the show. I was fortunate enough to get both her and Justin on, and they spent a lot of time in this interview talking about their story and relationship. This is hands down one of my favorite episodes of the podcast, and I hope you all give it a listen.

        Let me know your thoughts on this conversation, and be sure to subscribe to the podcast for more stories like this.

         

      • #18554
        DeAnn R
        Keymaster

        Great interview Kevin! Finally got a chance to listen to it. Perfect example of a couple who does what works for them. Love when he had that “ah ha” moment so early in their relationship after she dropped her phone. Something a lot of people never grasp. One time my Mom said she tried laying in one position most of the night herself and couldn’t do it and she said she didn’t know how I do it. Well, I do it because I can’t move. That was an “ah ha” moment for her. I typically turn once a night, rarely twice or not at all.

        I could never have been a classroom teacher. Sounds like a great career for her though. Glad Spinraza has helped with her energy and stamina. It’s really awesome her job can accommodate her because I think kids can learn so much about life at that age.

        • #18556
          Kevin Schaefer
          Keymaster

          Thanks DeAnn! Yeah I really enjoyed doing this one.

          That’s interesting about your Mom trying to sleep in one position all night to put herself in your shoes. I think people like us and caregivers don’t always quite grasp each other’s struggles fully, so that’s cool. Yeah, I have to turn at least once a night.

          And it was fascinating hearing Angela talk about her job. She mentioned last year at the SMA conference that her students help her out all the time, which is really convenient. And it is cool that her school is so accommodating.

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