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  • This topic contains 3 replies, has 4 voices, and was last updated by  Halsey Blocher 3 weeks ago.

    • Author
    • #20777
       Kevin Schaefer 

      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 

      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

      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 

        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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