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This topic has 2 replies, 3 voices, and was last updated 2 years, 3 months ago by DeAnn R.

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    • #13047
      Kevin Schaefer
      Keymaster

      My next column is about how losing my ability to play video games in my late teens and early twenties paved the way for more time to write, read, get outside and be more productive in general. It was hard to see the positive at first, but once I did it helped me greatly.

      I know it’s hard to lose physical abilities, but there are times when this can actually work to our advantage. Heck, if I didn’t have weak arm-strength I wouldn’t have my awesome robotic arm!

      In terms of how you all adapt to changes and SMA progression, do you have any particular strategy? I think it helps to prepare ourselves mentally and emotionally for the kinds of changes SMA brings.

    • #13052
      Ryan Berhar
      Keymaster

      I admire your ability to view all these negative things in such a positive light. I think I do a good job of remaining positive, but at the end of the day, SMA sucks. That’s just the reality of it. To be honest, I fail to find the kinds of positives that you do. But the ONE thing that I hold onto is that SMA allows me to touch lives in ways that I otherwise likely wouldn’t be able to. I have a powerful voice and story. That doesn’t make living with this disease any easier, but it provides me with a purpose. It means that I have the responsibility to live in a manner that doesn’t waste that powerful message. From that standpoint, SMA is a beautiful gift.

    • #13053
      DeAnn R
      Keymaster

      Typically I find an alternative way to do something until I absolutely can’t do it.  After that I find something else to fill in that void.  For years I didn’t read books because it was too difficult to hold them.  Instead I would to a lot of stuff online like enter contests and write stuff. Then e-readers came out and that got me reading again.

      I think it’s the most difficult when you lose a major function.  For example I think for type 3’s it’s difficult to lose the ability to walk. For me it was my swallow muscles.  That one wasn’t even on my radar.  I’ve had a feeding tube for over 3 years now and still hate it.  But as with everything with SMA you just deal with it.

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