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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, 4 voices, and was last updated 8 months ago by Halsey Blocher.

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    • #20777
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you all had a great weekend.

      For today’s Motivation Monday post, I wanted to talk about the importance of getting a good night’s sleep. It’s a simple concept, but our society has such a go-go-go mentality that it’s often overlooked. We as people need adequate rest, and I think we need to make rest more of a priority.

      As people with SMA, getting a good night’s sleep can be especially difficult. Between respiratory issues, trouble turning, and general discomfort, we have more obstacles to deal with than most people. For me, things like wearing my BiPAP machine at night, getting into a good position, and using pads to prevent ear sores help me significantly. But the biggest thing for me is getting to bed at a consistent time every weeknight.

      How do you prioritize sleep? Do you have any tips for getting a good night’s sleep?

    • #20798
      Ryan Berhar
      Participant

      Sometimes subtle things can make a significant difference. Like I’ve noticed when I lay on my side, it helps to sort of straighten out my back a little as it takes some of the weight off my shoulder.

    • #20801
      Crystal
      Participant

      My biggest tips are 1. speak up and 2. get creative. For awhile, I was having terrible pain on my hip area cuz my tailbone is out of place due to my scoliosis. I told my mom and my bro, and they started positioning me where the pain was at least tolerable. Then once my bro left for college, my mom put his foam piece on my bed along with a soft folded blanket. It helps a lot! I still have to communicate a lot about random things that keep me up at night – like using a certain type of pillow under my feet – but me and my mom are great at figuring out new solutions that may seem weird but work nonetheless.

      Here lately though, my Trilogy machine has been beeping a lot saying something about a low circuit leak and that’s been keeping me up. We got a new machine but its still doing it. We’re both so confused and frustrated with it.

      • #20802
        Halsey Blocher
        Participant

        Crystal, you might want contact the company that provides the machine. Mine has done similar things in the past, and my RT at the company can usually help shed light on what might be causing the problem. And if you can’t figure it out, you can deactivate that alarm. You just have to be careful with that because if you start turning off alarms you might end up needing them at some point and they won’t be there.

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