• Making Adaptations

    Posted by katie-griffith on August 17, 2021 at 10:00 am

    As a mom of a son with FA, I feel like life is constantly changing. Just when it feels like things have finally settled down, progression happens and adaptations need to be made. Do you find it hard to deal with the constant changes that a degenerative disease brings? What helps you cope with these changes?

    katie-griffith replied 2 years, 8 months ago 2 Members · 2 Replies
  • 2 Replies
  • karina-jeronimides

    August 17, 2021 at 3:44 pm

    Knowing that the change will end is what helps me.  And working viciously to fight it with PT/doctors/new procedures or/and adaptations that will make up for my loss of independence.  But yes, change is the hardest part of this illness, and figuring out what to do to make up for it. I hope OMAV can give us all a break from it.  If it doesn’t we need to keep fighting. It’s why I feel like Sisyphus.   Who according to Albert Camus still managed to be happy.

    • katie-griffith

      August 17, 2021 at 8:03 pm

      Great suggestions! Having a community that understands is huge as well as hope and joy even in hard circumstances. Keep fighting!

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