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    • #18319
      Michelle Gonzaba
      Moderator

      There have been more than a few times where my MG made simple situations more complicated.

      One example that comes to mind is when I was invited to a baby shower at a restaurant. I was already experiencing weakness in my legs, so while I could slowly walk on my own for short distances, I avoided stairs. When I got to the restaurant, I found out we would be sitting upstairs.

      This put me in a weird position. Only my immediate family knew of my medical issues and I didn’t feel the need to explain my medical history to others. Eventually, I slowly made my way up the stairs (there was no elevator for me to use).

      How do you deal with situations where your MG affects your ability to do things in front of people who don’t know you have it? Do you explain your situation or do you find a workaround without telling them what’s going on?

    • #18324
      Anonymous
      Inactive

      Good morning, mundane is a great word ir term.
      After my initial diagnosis I did watch for things going awry.
      I was having trouble walking at a stezdy gait. The left sude of my face seemed to be hanging sort of out ic shape.
      Then the easiest of all my “Mundane” tasks, chewing and swallowing became a very careful and watched over chore.
      Having trouble swallowing and breathing did scare my wife more tgan myself but I knew something was terribly wrong.
      It’s years later, every ince and a while I have trouble. swallowing. My doctors say take it easy and pay attention to the eating process.
      I do try. Mundane as it comes, eating, something I’ve done my entire life has to be watched. Anyone else with this malady let me know
      Thanks
      Stanley Schildkraut

    • #18325
      Anonymous
      Inactive

      Good morning, mundane is a great word ir term.
      After my initial diagnosis I did watch for things going awry.
      I was having trouble walking at a stezdy gait. The left sude of my face seemed to be hanging sort of out ic shape.
      Then the easiest of all my “Mundane” tasks, chewing and swallowing became a very careful and watched over chore.
      Having trouble swallowing and breathing did scare my wife more tgan myself but I knew something was terribly wrong.
      It’s years later, every ince and a while I have trouble. swallowing. My doctors say take it easy and pay attention to the eating process.
      I do try. Mundane as it comes, eating, something I’ve done my entire life has to be watched. Anyone else with this malady let me know
      Thanks
      Stanley Schildkraut

    • #18337
      Kelley
      Participant

      I’m always honest. All my friends and family know. For strangers I simply say that I have a neuromuscular disease that makes this (whatever it is) very difficult for me. If needed, I offer options or simply decline. I alone am responsible to keep myself from backsliding or going into crisis.

    • #18338
      Craig
      Participant

      My situation is similar to Kelley’s, all my friends and family know though it took some time for the word to get around and, because I “don’t look sick” I sometimes have to remind them.  For strangers I don’t tell them anything unless I need to, but I give them (and friends and family) a solution right away if there’s something I can’t do – “You folks go up the stairs ahead of me, I have a medical condition that will make me very slow on the steps.  I’ll see you up there!”

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