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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 5 replies, 3 voices, and was last updated 2 months, 1 week ago by Alyssa Silva.

  • Author
    Posts
    • #22764
      Alyssa Silva
      Keymaster

      Hey everyone. How are you all doing during this challenging time?

      I’m sure things are a little stressful and chaotic being that the world feels like it flipped upside down. But, today I wanted to ask you how you are handling caregivers and the coronavirus.

      I had to suspend my services until further notice because both of my PCAs work in hospitals part-time, and my back-up PCA’s wife works in a hospital. It just isn’t worth the risk to be exposed to them during this time.

      While I’m incredibly fortunate to have my parents able to step in, I’m devastated and had a good cry on Monday when I let them go lol. My PCAs are the vehicle to my independence and to lose that for an unknown amount of time is really the last thing I wanted right now. Alas, I know it’s for the best. My health comes first.

      Did you suspend caregiving services until things slow down a bit? What precautions are you taking with people coming in and out of your home?

    • #22796
      Halsey Blocher
      Participant

      One of my nurses was planning to take some time off right now anyway, but the other one is still coming. This is her only job, and she’s being cautious outside of work to protect both me and her elderly parents. Fortunately, my parents are also able to take over completely if needed, but it’s still good for them to have a break. Hopefully it doesn’t get to the point where we have to ask either of them to stop coming.

    • #22812
      Alyssa Silva
      Keymaster

      I hope it doesn’t get to that point either. I’m also afraid that if my PCAs are suspended for too long, I’ll lose my services altogether. Such a fine line I’m “walking” on right now.

    • #22820
      Halsey Blocher
      Participant

      I can definitely see why that would be a concern. I hope you’re able to bring them back soon!

    • #22868
      DEBORAH Schulte
      Participant

      Unfortunately, I have to have all my people work.  Some of them work in Dr’s office part time.We are super careful.  I am OCD anyways, lol, so Im always wiping down surfaces, everyones washing hands constantly!  I have no choice, I need them to live!….Alyssa, Im in CT, we should chat and meet sometime!  I feel like I know you through your Instagram and blog!  Be safe everyone!

    • #22896
      Alyssa Silva
      Keymaster

      Hi Deborah— yes! I recognized your name from Instagram. Which part of CT do you live in? Would be great to get together one day. 🙂

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