• Posted by kevin-schaefer on December 20, 2017 at 11:11 am

    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!

    kevin-schaefer replied 6 years, 3 months ago 2 Members · 2 Replies
  • 2 Replies
  • michael-casten

    January 4, 2018 at 2:05 pm

    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?

    • kevin-schaefer

      January 4, 2018 at 2:24 pm

      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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