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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 6 replies, 4 voices, and was last updated 1 year, 3 months ago by Kevin Schaefer.

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    • #17191
      Kevin Schaefer
      Keymaster

      Good morning everyone. Hope you all are having a great week!

      I really enjoyed Alyssa’s latest column: https://smanewstoday.com/2019/02/08/on-hiring-new-caregivers/

      This one is very relatable, as I have similar experiences when it comes to hiring and managing caregivers. I especially like when Alyssa writes about the nuances of training a caregiver to position her hands on her wheelchair’s joystick. The whole “a little to the left/no you’re not hurting me!” is so poignant and relatable.

      What did you think of this column? Could you relate to Alyssa’s experiences? What questions do you have about hiring caregivers?

    • #17226
      Halsey Blocher
      Participant

      I can very much relate to being guarded with new caregivers! It is always strange to have to trust someone new with so many aspects of your life! And I can also relate to new caregivers being terrified of hurting me. It always takes a few weeks – sometimes months – for a new caregiver to fully realize that I am not a china doll, and they will in fact have to tug a bit to get my arm through the sleeve.

      • #17243
        Kevin Schaefer
        Keymaster

        Right?! It’s like our muscles are sensitive, but we can still be moved without breaking something lol.

    • #17232
      Ryan Berhar
      Participant

      Kevin, how much did you pay for the shoutout? Haha

      • #17244
        Kevin Schaefer
        Keymaster

        Shhh. I was hoping someone wouldn’t notice.

    • #17239
      DeAnn R
      Keymaster

      What I really resonated with is the relief of the other caregivers when you finally find someone.  Like with Alyssa’s parents my other PCA’s and even my Mom are more than willing to fill in the gaps, but it gets to be a lot.  I’m sure they’re glad to get back to their normal schedules as I’m very happy to be back to my routine even if I have to go through it step by step.

      • #17245
        Kevin Schaefer
        Keymaster

        Absolutely. I had been without a Saturday morning caregiver for a while, and I always felt guilty when my dad had to get me up and ready. It’s a huge relief now that this is taken care of.

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