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    • #14130
      Leah Leilani
      Keymaster

      Do you believe that there will be a cure for your type of MD within your lifetime? How do you feel about hope? Do you think a healthy amount of hope is good but too much can be dangerous? Has too much hope ever made you disappointed?

    • #14134
      Amir
      Participant

      Great questions.

      I have FSHD and I do believe there may be a treatment for FSHD in 7-10 years.

      I think hope is good but too much hope could be harmful if you put your life on hold and just wait for a cure and don’t do anything about your condition.

      I go swimming twice a week and do physiotherapy once a week even due it is not easy but it helps my health.

    • #14141
      Stephen Myall
      Participant

      Hi Leah,

      Hope is wanting something to happen or to be true or to desire something with anticipation.

      It is okay to hope providing you are comfortable and content living for the present.  Hope is for the future and you dont always have the control to influence what happens.  In the majority of cases it is how you react to what happens in the present that will determine what you hope for in the future.  On a rare occasion fate can lend a hand.

      Yes, I hope there will be a cure for FSH MD in my lifetime, but I live my life not depending on it.  With this mindset, I will never be disappointed.  Good Question

    • #14160

      Like many of you, I hope that a cure for FSHD will be found soon. Until then, the link below describes what “cures” didn’t work and those measures that help keep me as healthy possible:http://redscooterdiaries.com/2018/03/08/almost-dying-for-a-cure/

    • #14898
      Leah Leilani
      Keymaster

      Wow, brilliant article. Thank you so much for sharing! You have a lot of determination to find a cure. I’m not sure I would have the courage to put myself through those kinds of procedures.

    • #14901
      Janee’ Sconiers
      Participant

      Having hope is thinking positive thoughts which, I believe, is a win win emotion for us living with MD. I have LGMD2L every year is worse. I have to believe there’s a cure coming soon. Good question.

    • #14902
      Leah Leilani
      Keymaster

      Janee ’, I know what you mean. When our diseases progress all we want is for it to disappear. Hope for a cure is sometimes the only way to cultivate positivity when being faced with the reality of a degenerative disease. But I think depending on a cure can become unhealthy as well. What do you think?

      • This reply was modified 8 months, 3 weeks ago by Leah Leilani.
    • #14929
      Janee’ Sconiers
      Participant

      Hi, Leah.  I think not believing and hoping for a cure would be like giving up.  I’ve had ten years of patiently waiting for a diagnosis all the while searching, advocating and making contacts with scientist (I’m beyond doctors) to grab any info. I can find. Saying this I have witness so much progress these years compared to the last twenty or so years. Oh yeah I think believing there will be a cure in my life time is healthy, for myself at least.

    • #14946
      Leah Leilani
      Keymaster

      I think there is a wide spectrum of healthy Hope and it’s different for everyone. For me, personally, I don’t spend much time thinking about a cure because my disease is so rare although the science is always improving. I am thankful that there are people like you that advocate for a cure. I believe people like you really do make a difference.

    • #14961
      Pete Barron
      Participant

      I like the quote: “Hope is the scent of a flower that still clings to the heal that crushed it.” I get tired of all the “cure” announcements that I see and then don’t develop. I’m okay with where I’m at, my biggest regret is passing this muscular dystrophy on to my kids and now grandkids. Mine is adult onset, so we don’t expect to see any signs until their mid forties. My hope is that there will be a cure or at least some treatment by the time my descendants get there.

    • #14969
      Pete Barron
      Participant

      Thanks Dani, you put it well that hopefully society will catch up on inclusion someday. I have developed a pretty thick skin, so attitudes don’t bother me. What I really want to see is affordable wheelchairs and curb cuts and ways around stairs everywhere anybody would want to go. I don’t think that”s asking too much, because the “temporally able bodied” can go anywhere they want!

    • #14971
      Leah Leilani
      Keymaster

      Pete, what a beautiful quote! I too get bothered by the “cure” announcements because there really is no cure for anything. Just treatment, prevention and management. My mom had adult onset as well and passed Muscular Dystrophy onto me but, so far, not my brother. Be gentle with yourself, there’s no way you could have predicted that you would have MD.

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