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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 2 months, 1 week ago by Kevin Schaefer.

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    • #22825
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you’re all staying safe and healthy out there.

      So with everything going on in the world, I thought I’d do a lighter post about entertainment recommendations for quarantine. This is just my personal list of book, movie, and Spotify recommendations. I’m leaving out TV, since there are just too many shows out there.

      1) If at Birth You Don’t Succeed by Zach Anner: Zach Anner’s 2016 memoir If at Birth You Don’t Succeed:My Adventures with Disaster and Destiny is hilarious, touching, and relentlessly witty. Anner shares his experiences as a comedian who has cerebral palsy, as well as numerous stories and idiosyncrasies from his childhood. This book is great for people with disabilities, but it’s also just a great read for anyone.

      2) Stardust by Neil Gaiman: I’m a big Neil Gaiman fan, and Stardust is one of my favorite books of his. It contains star-crossed lovers, witches, and swordsmen competing for their late father’s throne. It’s a familiar and subversive take on the fantasy genre, and it’s available in several formats. There’s the standard prose version, and the original graphic novel which Gaiman co-created with artist Charles Vess. I also love the 2007 film adaption with Charlie Cox and Claire Danes.

      3) Fighting with My Family (2019): Florence Pugh stars in this dramedy biopic about WWE champion Paige, and her wrestling family from England. So yes, it’s a British wrestling comedy, and the film is as unique as its premise. Writer/director Stephen Merchant injects plenty of humor and heart into this story, and he knows exactly how to balance the two. Co-stars include Vince Vaughn as the no-nonsense WWE coach, and Nick Frost and Lena Headey (Game of Thrones) as Paige’s eccentric parents. Plus, Dwayne Johnson plays himself in two brilliant cameos. Stream this movie on Amazon Prime or Hulu.

      4) Booksmart (2019): Olivia Wilde made her directorial debut with this teenage comedy. Taking cues from Superbad and John Hughes classics, the film flips the script on the genre by focusing on two overachieving students on their last day of high school. Realizing that they’ve unnecessarily spent all their time studying and doing extracurricular activities, they decide to cram all of their partying into a single night. The result is a hilarious and touching coming-of-age story. Stream this movie on Hulu.

      5) Tides of a Teardrop (Album) by Mandolin Orange: I mostly listen to rock, but I do love folk music. Mandolin Orange is a North Carolina indie folk band, and their 2019 album Tides of a Teardrop is one of my favorites. It’s simple, melancholic, and soothing to listen to. My favorite track is called “The Wolves.”

      6) Office Ladies (Podcast): Any fans of The Office here? You’re in luck! Jenna Fischer and Angela Kinsey (who played Pam and Angela on the show) now host a podcast called Office Ladies. Each week, they revisit and discuss an episode of The Office, and share tons of behind-the-scenes anecdotes with listeners. It’s a delightful and funny podcast, offering perfect escapism for people right now.

      I hope this list helps! What are your recommendations?

    • #22859
      Alyssa Silva
      Keymaster

      Love the Office Ladies shout out! Playing off that, I’ve been watching videos and teaching myself how to use new programs. For example, I’m learning how to use Adobe Illustrator, so when I’m practicing I listen to that podcast! The Office is my favorite show.

      The best way for me to stay (healthily) distracted by what’s going on is by finding creative outlets whether that’s writing, designing, or drawing. Yesterday I stumbled upon this long list of courses for creatives and every single one is free until March 31st! I’m giddy over it. That’s considered entertainment right?? 🙂

      I also learned that you can purchase all the Friends seasons on Amazon Prime. With it off Netflix now, I bought a couple of seasons to tie me over. It’s my feel-good show.

      That and Boy Meets World which is on Disney+!

    • #22873
      Mike B
      Participant

      If you liked 2020 Oscar Best Picture winner Parasite, check out the South Korean film ‘Burning’ which is available on Netflix.

      i recently read Margaret Atwood’s The Handmaid’s Tale which has been on my to-read pile for years, along with the sequel The Testaments. Both books provided ample escape from the somewhat surreal daily life we’re all experiencing.

      The website/app nugs.net has been providing free video concert streams from its archives of a variety of jam bands in the evenings. If you’re in the mood for a little jamband music one night this week, try it out.

    • #22900
      Kevin Schaefer
      Keymaster

      Thanks Mike! I knew you’d have some good suggestions.

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