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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 4 replies, 3 voices, and was last updated 2 months, 2 weeks ago by Kevin Schaefer.

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    • #22705
      Kevin Schaefer
      Keymaster

      Hey everyone! Sorry I’ve been a little absent here lately. I’ve been busy with my management job, but I still check in here daily while DeAnn and Alyssa run the show.

      Anyhow, I’m sure many of us are on edge with the Coronavirus, and hopefully staying home. It’s a tough time, but I wanted to share some of my personal tips for staying sane and productive while on lockdown.

      1) Read: Netflix and Hulu are great, but nothing gets your mind going like a good book! I just finished the latest Stephen King sci-fi/horror novel The Institute, and am currently reading a Robin Williams biography. I also read a graphic novel this morning.

      2) Call Friends and Family: We often use the excuse of “being too busy” to keep in touch with people. Don’t worry, I’m guilty of this too. Well, now the majority of us are stuck at home, so we have time to invest in our relationships. Today I talked with an SMA friend who I hadn’t talked to in a while, and it was great. We had an hourlong conversation, and it was comforting for both of us.

      3) Get Outside When Possible: I realize this isn’t an option for everyone, but try to spend time outside if you can. Even just a few minutes in the backyard refreshes the soul. On day three of my lockdown, I took my dog for a short walk down the street, and it was great for both of us to get some fresh air.

      4) Watch Good Movies and TV: I have plenty of streaming recommendations, so ask me anytime. Take advantage of the time in isolation to watch some good movies and shows. And if you live with family or caregivers, have mini watch parties! Just yesterday, I introduced my Dad to the Wes Anderson classic The Royal Tenenbaums, which is something he would have never watched otherwise. He liked it! My film professors would be proud.

      5) Listen to Music and Podcasts: This is another simple and stimulating activity. Check out all of the wonders that Spotify has to offer. You may discover an artist who really speaks to you, or a great storytelling podcast. I also have recommendations in this department.

      It’s an uneasy time, but we’ll get through it together! What lockdown tips do you have?

    • #22734
      Halsey Blocher
      Participant

      These are great ideas! The local library has closed for now, but I luckily have a whole stack of books waiting to be read. And getting some fresh sounds wonderful. The weather is gradually improving (at least most of the time. Weather is very unpredictable in Indiana), so I’m hoping to be able to read some of those books on the back porch. I’d also like to try some of the virtual museum tours that are being offered.

    • #22735
      Alyssa Silva
      Keymaster

      Such great ideas, Kevin. Thanks for sharing.

      My friend sent me this link today. It’s 450 Ivy League courses you can take FOR FREE online. Kind of a genius thing to offer during this quarantine. As a nerd, I sure am pumped about it— signed up for an entrepreneurship class at UPenn. 🙂

      https://www.freecodecamp.org/news/ivy-league-free-online-courses-a0d7ae675869/

    • #22746
      Kevin Schaefer
      Keymaster

      Halsey, I heard about the virtual museums too! That’s really cool.

    • #22747
      Kevin Schaefer
      Keymaster

      Alyssa, that’s great!

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