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  • Moments out of your control

    Posted by deann-r on August 29, 2018 at 11:20 am

    With life in general there are things that happen that are out of your control.  With SMA, those moments are a little more of a big deal.  For example my service dog just puked in the hallway an hour before I have someone stopping for a pca interview.  No biggie if I wasn’t trapped in my office.  My attempt to cover it with a piece of paper (remember I’m in my office) failed as the paper floated past the spot.  I think I’ll try to straddle it trying my best to avoid getting it in my back casters.  Wish me luck!  Make me feel better, what are some of your stories?

    ryan-berhar-2 replied 5 years, 6 months ago 5 Members · 7 Replies
  • 7 Replies
  • kevin-schaefer

    Member
    August 29, 2018 at 12:09 pm

    Yep I can definitely relate. My next column is about my robotic arm malfunctioning, but I have numerous other stories. About a month ago I got my robotic arm stuck as I was trying to move my phone on my tray. It got stuck in an awkward position, and I had to call my Mom on my Echo Show to come help me.

    When your caregiver does come, just say, “hey I have a little surprise for you!”

  • deann-r

    Member
    August 29, 2018 at 4:46 pm

    Here’s the link to my personal vlog if you want to see how I got out of this one! https://www.youtube.com/watch?v=fsbDKMu_dtw

     

    • mike-huddleston

      Member
      August 30, 2018 at 4:50 pm

      Hahaha!  Priceless video!

  • michael-morale

    Member
    August 29, 2018 at 5:23 pm

    DeAnn, I had to get a Kleenex to wipe the tears from my eyes because I was laughing so hard I was crying. I got a husband-and-wife that live with me and they are my primary caregivers. They brought their little dog who is an absolutely wonderful dog to have around the house, but one day, the doorbell rang and I had to go out of my office to open the door. Little did I know that Lola had decided to relieve herself right outside my office door. Luckily, it was on the tile, but I had to do the same thing you did. I didn’t realize that my wheelchair was that maneuverable. We have since added a doggy door to the back door so that she could go outside, but I think everyone that’s in a wheelchair has had to face this particular problem. I love your “I made it” comment at the end of your video.

  • ryan-berhar-2

    Member
    August 31, 2018 at 12:30 am

    I don’t get into trouble with these kinds of incidents you guys are talking about, because someone is always nearby to help me. It’s a double-edged sword, though. I may always have help when I need it, but on the other hand, this limits my independence.

    • deann-r

      Member
      September 1, 2018 at 10:52 am

      Ryan- Hope you don’t mind my asking, does having someone around all the time get on your nerves?  I just know for myself sometimes I can’t wait for my PCA to get here, but after they’ve been here a bit I’m so ready for them to skedaddle.  Maybe you just get used to it?

      • ryan-berhar-2

        Member
        September 3, 2018 at 2:42 pm

        Oh yes. Absolutely. But that’s just how it has to be. Whether it’s family or nurses, I need someone around.

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