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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 2 replies, 3 voices, and was last updated 1 month, 3 weeks ago by Patrick Lenihan.

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    • #22986
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you all had a safe and relaxing weekend.

      So since we’re all stuck at home right now, I was wondering if anyone had any good podcast recommendations. Since I work from home anyway, I listen to a lot of podcasts during the day. My favorite is called Beautiful Anonymous, a conversational show hosted by comedian Chris Gethard. This one is a great mix of human interest stories. Some episodes are hilarious, while others are more emotional and moving.

      I also listen to a lot of pop-culture podcasts, and a history show called Our Fake History. In that one, host Sebastian Major breaks down historical myths like Atlantis, and looks at what’s real and what isn’t. It’s perfect for nerds like me.

      Who here is a podcast connoisseur? Do you have any recommendations?

    • #22991
      Tracy Odell
      Participant

      What about a podcast on access to hospital care, including ventilated care for people with SMA?

      Some areas are putting protocols in place which would put us low on the list for interventions if hospitals were short of space or equipment due to COVID-19. Our family members who help us may not be allowed to be in the hospital with us to visit/provide care.

      What is the situation? Who is doing what? What should we be doing?

      See Alice Wong’s article and this article in The Mighty about ableism and how dangerous those attitudes are.

      Tracy Odell

    • #23000
      Patrick Lenihan
      Participant

      Some of my podcast recommendations are WTF with Marc Maron, The Moth, The Splendid Table, My Dad Wrote a Porno, Quirks and Quarks, Car Talk, Radiolab, Snap Judgement, American Masters, Stuff You Missed in History Class, and Ouch.

       

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