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  • chuck-kroeger

    Member
    May 13, 2020 at 7:58 pm

    We have no problem telling people that I have ALS.  I’m in a wheelchair with trilogy nose piece and curled fingers so you can see the curiosity in many people’s faces.  I feel like the more we tell, the better the awareness.  Most family members were told in person that I have it but we also used social media.

  • bill1949

    Member
    May 14, 2020 at 2:56 pm

    I neither feel obligated nor reluctant to tell people I have ALS. I told my family directly as well as close people at work or friends. At over two years after diagnosis, I’m a little different than many in that most people won’t notice anything wrong. I do at times wear a wrist brace and a couple of things to control finger curl. They don’t usually notice the muscle atrophy in my arm. When people ask about the wrist, I do tell them about my ALS. Sometimes I simply say I have a neuromuscular disease if there is no time.

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