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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 contains 3 replies, has 3 voices, and was last updated by  Halsey Blocher 2 weeks, 6 days ago.

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    • #21008
       Kevin Schaefer 
      Keymaster

      Hey everyone! Hope you all had a great weekend.

      For today’s Motivation Monday post, I want to talk about employment. October is National Disability Employment Awareness Month (NDEAM).  Though there are still plenty of stigmas about those of us with disabilities and our ability to work, there are plenty of employment opportunities for us. I know people with SMA who are entrepreneurs, engineers, writers, computer scientists, lawyers, and more.

      For me, my job is a big source of my motivation. I love what I do, and the people I work with (even though I work remotely). One of my colleagues who writes for our Muscular Dystrophy site echoed these sentiments in his latest column.

      Do you find work to be a source of motivation in your life? If you are unemployed, do you have any questions about seeking employment?

    • #21022
       Rachel Markley 
      Participant

      Work is a huge part of my daily motivation. It is hard to overcome the fatigue and the general challenges associated with navigating SMA and work (EX: a 2.5 hour wheelchair clinic this morning), but 98% of the time it’s worth it!

      • #21024
         Kevin Schaefer 
        Keymaster

        Totally understand the fatigue aspect. Spinraza has helped a lot in this regard, but I still have to be careful not to burn myself out. But like you, I find that the joys of working outweigh the negative aspects.

    • #21028
       Halsey Blocher 
      Participant

      Both my job here and my volunteer work are really important to me. Having productive things to is really fulfilling.

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