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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.

This topic has 3 replies, 3 voices, and was last updated 7 months, 2 weeks ago by Halsey Blocher.

  • Author
    • #21008
      Kevin Schaefer

      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

      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

        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

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

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