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This topic has 2 replies, 2 voices, and was last updated 2 years, 11 months ago by Kevin Schaefer.

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    • #10925
      Kevin Schaefer
      Keymaster

      Welcome to the forum for SMA parents and caregivers. This is a public space for members to ask questions and share experiences. For a privatized space to discuss more personal topics, please join the parents and caregivers group.
      To get things started, I’d like to hear from you all what kind of topics you’d like to discuss here. I’m an SMA patient, so I’m leaving the bulk of the discussion here up to you all. Feel free to reply to this discussion topic or post your own. Thanks for joining us!

    • #10943
      Michael Casten
      Participant

      Thanks for the forum. There are so many topics worth exploring:

      • Spinraza
      • Gene Replacement Therapy
      • Loss of sleep
      • Toileting
      • Bathing
      • Dressing
      • Pain
      • Contractures
      • Coping through a day
      • Nutrition
      • Hope (or lack thereof)
      • Emotions
        • Anger
        • Guilt
        • Hopelessness
        • Fear
      • What will happen to a child as they mature and go out into the world on their own?
      • Co-dependence
      • Public stares
      • Medical equipment
      • Play
      • School
        • IEP
        • Teaching assistants
        • bullies
        • friendships
        • physical and occupational therapies
      • Siblings
      • Travelling
      • Winter and wheelchairs
      • Home modifications

      Anybody want to add to the list?

      • #10944
        Kevin Schaefer
        Keymaster

        Absolutely! These are all great topics. And for those who haven’t already, be sure to check out Michael’s column “Five Servings of Strength” here on the site.

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