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Discussing ALS
Do you feel obligated to tell people outside of your loved ones that you have ALS? How did you tell your loved ones? Has telling people brought you support from unexpected places?
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2 Replies
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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.
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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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