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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 10 replies, 7 voices, and was last updated 8 months, 2 weeks ago by Kelly Miller.

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    Posts
    • #20467
      Kevin Schaefer
      Keymaster

      Sorry for the long title of this post haha.

      Hey everyone, check out my latest column here. It’s amazing how much SMA can affect the most mundane tasks, like flipping through a book. I wrote about this situation not to complain, but simply to highlight the struggles that most people don’t see.

      On the flip side, these situations tend to make me more resourceful and creative. Hope you all enjoy this column!

      Can you relate? Have you been in similar situations?

    • #20469
      Rachel Markley
      Participant

      Literally me staring at my dinner last night while my parents heated their dinner, fed the dog, heated up the oven…

      • #20470
        Kevin Schaefer
        Keymaster

        Totally understand. It’s cathartic though just writing about these situations.

    • #20476
      Halsey Blocher
      Participant

      I also love physical books! I have hundreds of ebooks, but they just aren’t the same. I sometimes have trouble getting my books to stay open and holding them open can be quite tiring, but to me it’s worth it!

      • #20481
        Kevin Schaefer
        Keymaster

        I hear ya! And yeah, flipping the pages can also be good exercise for us haha.

    • #20477
      Adnan Hafizovic
      Participant

      It’s a nicer feeling to read paper books. Even though they have that smell. It’s just like when someone says that sex is better without a condom than with a condom. A bit of a joke.

      • #20482
        Kevin Schaefer
        Keymaster

        Haha. And yeah there really is nothing like holding a book in your hands.

    • #20478
      DeAnn R
      Keymaster

      I gave up on physical books long ago. Every day though something comes up that I just can’t do. Many times I spend way too much time trying anyway, sometimes successfully, sometimes not. Other times I just forego it until someone can help me. It’s certainly frustrating.

      • #20485
        Kevin Schaefer
        Keymaster

        I hear ya. Often, I try really hard to figure out solutions as well when stuff like this comes up. It’s tough when you realize that asking for help is the only option, especially when the task is so small.

    • #20539
      Ryan Berhar
      Participant

      The little things are often the most frustrating. Like i know I can’t run up a flight of stairs, but that’s easy to accept. It’s things that I can almost do, but not quite, like reading a book, that are the most frustrating.

    • #20631
      Kelly Miller
      Participant

      I hear ya, Rachel! Last night my husband & I made dinner (I’m the “chef” of the operation & he’s the muscle.) He dished out my plate of sautéed shrimp, risotto, & brussels sprouts then set it on the table in front of the TV. I got to look at it while he got the bread out of the oven, fed the dog, washed the shrimp pan, poured our drinks, & dished out his food. I can’t remember the last time I had a meal that was warm. I’m not complaining necessarily because it’s just how it goes, but sometimes I do get nostalgic for HOT mashed potatoes!

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