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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, 4 voices, and was last updated 4 months, 4 weeks ago by Krystal.

    • Author
      • #18974
        DeAnn R

        Getting new equipment should be fun and exciting. Especially since much of the time we have to fight tooth and nail to get it. Unfortunately it can cause a lot of anxiety. One of my favorite blogs, Elizabette Unplugged, sums it up perfectly as she’s starting the process of getting a new chair.
        Red Tape, Duct Tape & The Wheelchair Vortex

        Can you relate to this? Do you welcome change, or resist it as I sometimes do?

      • #18977
        Kelly Miller

        Oh my gosh, I can TOTALLY relate to what she says in this blog! I hold on to my chair as long as I can, sometimes making it last 12+ yrs. before I even think about calling the DME. It’s such a stressful situation, and then the waiting period from when you get all the paperwork to the wheelchair company, after it’s been approved by insurance, to when the DME finally calls you to say it’s in. Those 5 to 8 months can be the most grueling for me because that’s when I tend to mull over all the possibilities of how it could go wrong. The seating won’t be right, the height won’t be right, the armrests won’t be right, all kinds of things that could make it not only uncomfortable but absolutely unacceptable. Because, no matter how hard my Alan & I try to replicate everything down to the minutest of details, something will be off. And then we start the adjustments…

      • #19655
        Yvette Haas

        I just commented about this on a different thread, so sorry for the duplicate, but I’m just going to copy and paste because the answer is the same:

        Yeah… So my chair is somehow from 2001 (Yes, that 2001!) and still going strong. The other crazy part of this story is that I’ve been working on getting a new chair since 2011!!! It’s been the most ridiculous process ever, but I’m happy to say that it’s fiiiiiiiiinally about 95% tolerable. I can’t even get into the issues, but basically, I’m just going to say that I’m eternally grateful for the fact that my old chair has been amazing for 18 years, and still counting =)

      • #19750

        I am anxiously waiting to get my 19-month daughter a Permobil Koala. She trialed the Permobil wheelchairs and felt the Koala was the best one for her. We won’t be expecting the chair until fall or even winter of this year, but I am excited for when it arrives so she can become more mobile during long-distances! But when that happens, it will be time to look into getting a larger car to fit her chair! There’s so many to-dos, but I’m excited to help my daughter in any way that I can to give her the equipment she needs to build confidence and independence.

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