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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.’”


This topic has 6 replies, 6 voices, and was last updated 2 months, 3 weeks ago by Halsey Blocher.

  • Author
    Posts
    • #23463
      DeAnn R
      Keymaster

      In the near future I’ll be participating in a Courageous Conversations panel.  One of the questions is, “What do you feel is the biggest thing that “fully-abled” people take for granted?”  My first thought is the ability to do what you want when you want to without giving it a second thought.  Does that make sense?  What else?

    • #23467
      Rachel Markley
      Participant

      Doing things alone – i.e. shower, bathroom, eating, etc.

    • #23468
      Alyssa Silva
      Keymaster

      Their overall health. Kind of general but, in my opinion, very true.

    • #23472
      Robert Stump
      Participant

      Everything in our lives must be planned.  How different it must be to not think one tiny bit about the “task” of getting in bed tonight.  I have no idea what it must feel like to just go lay down and start to fall asleep the moment you are ready.

    • #23480
      Crystal
      Participant

      Being able to unconsciously move yourself in the middle of the night when you’re uncomfortable instead of the uncomfortable feeling getting so strong that it wakes you up and you have to either suck it up and wait until morning or wake someone in the house, if you can.

    • #23487
      DeAnn R
      Keymaster

      OMG!  Yes to all of those!

    • #23505
      Halsey Blocher
      Participant

      I totally echo Rachel’s! What I wouldn’t give to take a shower in private! Another one is the ability to do things that a lot of people don’t actually enjoy doing like housework. I would love to be able to do my own laundry. Or there are times where I look at my bedroom floor and realize that it needs vacuumed, but I don’t want to interrupt what other people are doing to ask them to do it.

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