Having a High Quality of Life While Living With SMA

[Kevin Schaefer]

Hey everyone! Hope you’re all having a great week so far.

Check out my latest column here. I recently had a couple friends on the SMA News Today Podcast, and we spent a lot of time talking about their late son Carson. Carson was a friend of mine, and it was cathartic for me to talk with his parents about his life.

Among other things, we talked about Carson’s quality of life. His parents decided early on that they didn’t want his life to be dominated by doctor’s appointments and medications. I think there’s a lesson to glean from this. In the SMA community, we spend so much time focusing on our physical health. In doing so though, we often neglect our other needs. With this column, I wanted to emphasize that our quality of life is just as important as our physical well-being.

Can you relate to this notion? Do you have any takeaways?

[Alyssa Silva]

I was going to make a comment about the importance of really relishing in the so-called “good days,” but then I read your column and saw the last sentence! haha but I wholeheartedly agree with everything you said.

There’s a fine line between living with SMA and living FOR SMA. If I lived for SMA, I wouldn’t have experienced some of my most cherished memories. I wouldn’t have some really cool stories to tell. I wouldn’t have the quality of life I’ve fought so hard for which is why I choose to live with SMA, instead.

I honor my body. I make sacrifices when necessary. but, I will never let this disease have the upper hand.

Great column, Kevin.

[Rachel Markley]

I personally have never missed anything because of cold and flu season. Most people know to miss out if they’re sick and I’m in attendance and I have always felt I have to trust them. To me, being out and about is more important and I’m willing to take the risk. I mean, I work at a hospital, I know all about risks 🙂

[Author]

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