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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


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This topic has 19 replies, 9 voices, and was last updated 1 year, 4 months ago by Halsey Blocher.

  • Author
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    • #12316
      Ryan Berhar
      Keymaster

      I wanted to share another tip. If you’re like me, your ears get sore laying on them throughout the night. What I did was take a block of memory foam that’s about three inches thick and carve a hole in it. It may not work for you because of spinal curve. For example, I can only use mine on my left side. But it helps a lot and may be worth a shot!

    • #12328
      Kevin Schaefer
      Keymaster

      Great idea! I have this problem as well. Between being on my side all night and wearing my BiPAP, my left ear definitely gets irritated. I’ll try this out.

      • #12349
        Ryan Berhar
        Keymaster

        Worth a shot. Another thing is you gotta make the hole fairly large. Like big enough to fit a baseball into.

    • #12344
      DeAnn R
      Keymaster

      Good idea for us ladies (or gents) who have ear piercings as well!

    • #12458
      David Z
      Participant

      Carving memory foam is great, but I’ve found this really helpful as well. It was ~$100 direct from manufacturer.

      http://www.molnlycke.us/turning-and-positioning-system/molnlycke-z-flo-positioner/

      • #12460
        Kevin Schaefer
        Keymaster

        Thanks David!

      • #12462
        Ryan Berhar
        Keymaster

        I’ll check it out! Thanks!

      • #12608
        Jenny Rellick
        Participant

        How do you use this to protect your ear in a full side-lying position? The video says to start with the patient on his back, but I can’t do that.

        • #12612
          David Z
          Participant

          You can mold/use it however you want. I just start out with it flattened, and have my PCA push down under where my ear is pressing.

    • #12606
      Ryan Berhar
      Keymaster

      Hey Jenny, good to hear from you! I actually don’t experience any of those issues, so I’m afraid I can’t help you there.

    • #12609
      Jenny Rellick
      Participant

      Wow. Maybe it’s just me. But, Amazon reviewers talk about this problem a lot. I only developed the ear problem in my 30’s. I developed the sweat problem as soon as I began using memory foam toppers.

      • #12610
        DeAnn R
        Keymaster

        Jenny, have you ever used one of those air exchange toppers for your bed?  Not sure the technical name, but I tried one years ago and disliked it because it pumped room air so was too cool for me.  It has chambers that alternate inflation levels throughout the night. A medical supply company would know what I’m talking about.

      • #12611
        Ryan Berhar
        Keymaster

        Well one thing I have learned is that everyone with SMA is just so different. I mean, as I said, I can’t use a pillow of any kind on my right side. You just gotta figure out what works for you personally.

    • #18125
      Noahoscar986
      Participant

      Yeah, I am having this same ear sore problem, I really much irritated from this issue, I also like your suggestion as well, but I bought a curve pillow from My Pillow discount code at Reecoupons and I really feel much better after using this pillow.

    • #18165
      Kelly Miller
      Participant

      David, which size did you get? I would love to have the one that goes under my head. I can’t figure out how to order it. Did you have to go thru a medical supply company? When I click on the actual line for the product (the one with the item # etc.), it doesn’t do anything.

    • #18232
      Halsey Blocher
      Participant

      I’ve heard of people doing this but haven’t tried it. One thing that I do to prevent eat sores is to fold my ear forward so that the back of my ear is against my pillow. I’ve had a lot of people tell it’s strange, but it helps tremendously. I also sometimes roll up a wash cloth or hand towel and tuck it next to my head to lift some of the weight off of my ear. It’s nothing fancy but it works and it’s cheap.

      • #18234
        Ryan Berhar
        Member

        Wow that’s interesting. My ears have to be perfectly straight or else they’ll hurt like heck.

        • #18254
          Halsey Blocher
          Participant

          Yeah, like I said, it’s strange. I’ve learned that most people’s ears aren’t even flexible enough to try it.

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