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    • #16308
      Matt Lafleur

      It seems to me that life with FA is all about randomness. What abilities are affected when – are different for every single patient.

      I wrote about embracing chance and taking risks here:


      What do you think?

    • #16319
      David Riley

      Since nobody seems to want to post these days, I will.

      You know Matt, I read your article and understand and agree with the sentiment you express. We can and should strive forward always. There is a will to live victoriously – that you express well.

      Where I must disagree with you is on your view of randomness and embracing chance. I disagree at the presuppositional level: God is in control, “I form light and I create darkness; I make well-being and I create calamity.” Even what a person sees as random is under a sovereign hand. And of course, I will not just appeal to truth claims taken from some authority you may not believe. Also: I am 35 and have living with FA since childhood, my brother too, except he is 40 and has had a much more severe case than I. Whereas I use a manual chair and have enough lower and upper body strength and coordination to be able to fight and often feel victorious after the battle, my brother is in a power chair and is in a worsening state all the time. All that is to say: without this “randomness,” I would be living a life of insignificance, my brother too. Instead, God has given me FA to humble me enough so I could see greater, eternal things. Of course, God opens the eyes of others who have not experienced such sorrow, but do they get to experience such closeness and nearness to the God of the universe? Do they feel as much intimacy with the Man of Sorrows, Jesus Christ, as me?

    • #16320
      David Riley

      Oh yeah, about change. I was noticing that the placebo effect for the Omav trial remained roughly with the drug for the first four weeks. Since this is purely mental, image what the human spirit is capable of. Of course you can gain back what you lost in two months.

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