ALS News Today Forums Forums Living With ALS Are you covering up your ALS symptoms in social situations?

  • Dagmar

    Member
    October 29, 2024 at 12:25 pm

    When in public, I don’t like drawing attention due to my symptoms (movements, speech, etc.). I’d rather have people notice that I’m wearing something unique…like a hand-knit scarf… or, blend in all together. I don’t think anyone wants to be noticed for their symptoms.

  • babs

    Member
    October 29, 2024 at 3:32 pm

    I live in a complex which provides a daily lunch. The other residents know my diagnosis but I’m struggling to eat independently. This makes me feel embarrassed, although no one has passed comment. When eating out, I usually try to make light and say that my hands don’t work properly if it comes to the attention of other people but I try to position myself so that other people can’t see me eating.

    • Dagmar

      Member
      October 31, 2024 at 12:34 pm

      Babs, kudos for your ability to keep engaged with others and feel OK about your

  • Mort

    Member
    October 30, 2024 at 7:28 am

    Yes. I have lower leg weakness in both legs. I am wearing a walk on AFO on the left leg for foot drop and an ankle AFO on the right side as my right leg is now getting weaker. I have a brace on my right knee because I have a bad right knee that can not be operated on because of ALS. I am still using a European Style Rollator at all times to prevent falls. I am continually asked about getting knee surgery. Only then do I explain I have ALS. Most do not understand at which time I explain Lou Gehrigh disease and still most do not appear to understand. I do not bring up unless asked.

    • Dagmar

      Member
      October 31, 2024 at 12:38 pm

      Mort, I have the same challenge when trying to explain my ALS. Most folks still are not aware of it or its effects.

      I wonder what other members do and how they explain their condition in simple and easy-to-understand terms.

  • Tara

    Member
    November 1, 2024 at 9:09 am

    I attend weekly breakfast meetings of a civic group, monthly dinner meetings of book club, weekly lunch with a family member and occasional get-togethers with friends. Currently speech is very obviously affected, use adaptive silverware and am very selective in what I eat (easily choke/cough) and eat far less than pre-ALS. With these groups, given my long association with them, they have been very gracious and kind-reiterate my order to the wait staff, open the coffee creamer, offer to cut up my food, etc. I’m very blessed.

  • Beth Gabel

    Member
    November 6, 2024 at 7:04 am

    I’m in a wheelchair all the time so I can’t really hide much. I get very uncomfortable when people ask what happened and I have to explain. I say as little as possible and try to make seem that it not as bad as it is

  • deb-winters

    Member
    November 7, 2024 at 6:31 pm

    I have been living with a LS for 2 1/2 years. My dominant hand is unable to work at all, my left hand is getting weaker. This to say, eating out and eating in front of others can be a challenge. In addition, I use a cane / crutch to walk. I wear a name badge that says Deb Winters, living with ALS. While I don’t enjoy the deficits I’m learning to live with, they are not of my choosing or design. I don’t exaggerate them in any way ever! For instance, I don’t order soup in public. However, I proudly and gladly answer questions of other adults, and particularly of children who I catch looking. I know their adults are listening as well. Education and awareness of ALS and the challenges it provides is critically important in our culture. Take a moment – answer questions – point people to a resource. Let them know how they can help and make a difference.

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