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    • #19311
      Jodi Enders

        Are you a singer with Myasthenia gravis? 


        What impact does it have on your ability to sing or perform? How have you learned to adapt? What keeps you from giving up?

      • #19326
        Mary Ann

          I find I am too tired to sing….. and my voice is off….. except when I’ve taken the predisone and am feeling “chirpy”… Then I have energy to talk and even sing a bit… 🙂 …. but I wiggle my toes with neuropathy to the music anyway….;)   I sing for my enjoyment. 😉

        • #19340
          Debbie Butler

            I love to play the guitar and sing old country music.  I don’t play as often anymore, but do if the power goes out.  I dig out the guitar and play for about 30 minutes and sing to the dogs … LOL.  I don’t have the voice I used to have or the air to carry some notes … but I entertain myself and my two little dogs … sometimes they even sing (or howl) with me.

          • #19331
            Michele Ayers

              oh, my gosh..this scares me the most! well, that and dying..and blindness…well, everything about mg!

              I AM a singer…and I’m trying to sing as much as I can because I don’t know when I won’t be able to anymore.

              so, prednisone helps, Mary Ann?

              I have less breath control. I can’t sing as long on a phrase….sometimes it’s not as clear…small differences so far vocally..

              mostly breath related.

              well, I just made new business cards..and  the order was accidentally

              cancelled 2 days ago by vistaprint..and I thought “great! I didn’t want to do it anyway”…

              but then today I reordered…I love to sing..and yet I don’t most days..I feel disconnected..

              but then when I do perform…I am alive…so I need to do it as long as I can and not take it for granted.

              I’m glad to hear you’re singing for enjoyment Mary Anne! I need to do that more!

              oh, I wanted to share that my girlfriend and I were out last week and we heard someone singing very quietly at the table across from us…they were singing Happy Birthday…

              all of a sudden (sometimes I act before I think) I asked the people at the table the name of the birthday man….they told me and I said in a medium voice to a medium room in a medium restaurant…”It’s Maynard’s Birthday..let’s all sing!” and most of the people in the restaurant sang Happy Birthday to Maynard!…it was so fun!..and people were smiling because they were having fun singing too!…as my girlfriend and I were getting ready to pay the check ..the waitress said, “It’s been taken care of…”…I just wish she had told us before the people had left!…the birthday family had paid our bill!..but the joy was in leading the restaurant in song and seeing the joy

              so..what keeps me going when I want to give seeing teh joy it brings to others and to myself




            • #19381
              Douglas Manning

                The impact on my ability to sing is probably my single greatest “loss” with MG. I can deal with the more limited mobility issues, vision issues, swallowing issues and weakness that pop up, but one symptom that is with me always is getting breathless, losing control of my breath, slurring words after several minutes and hoarse and hushed output. Bummer. Nevertheless, I still love to sing for myself, as well as listening to and take great joy in seeing others use their talents. I keep looking forward to the day when I take a few more steps towards a remission/more controlled state. And even if my “voice” remains elusive, I can still enjoy having music in my life.

              • #19393
                Michele Ayers

                  oh, Douglas..I’m so sorry

                  I hope to be as strong and appreciative of music around me when I can’t sing anymore…

                  thank you for sharing. I want to be able to accept and not be so fearful



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