Forum Replies Created

  • rita-lepper

    January 8, 2021 at 9:30 am in reply to: Supporting One Another

    I definitely need some emotional support.   Physically,  I am doing pretty well.  The disease has not really limited me in any way yet.  I have had fasciculations for years and never thought anything of it.  I have experienced weakness in my legs for a few years, but attributed it to getting older. The fasciculations are getting much worse and I notice my voice gets weak sometimes. I exercise regularly and feel well, even upbeat most of the time.  For a while I saw very little progression and was beginning to hope I was misdiagnosed.   But I seem to be noticing subtle changes almost daily.  It really scares me.  I don’t know how I can emotionally handle giving up control of my muscles and be unable to take care of myself.  I know that I will have to deal with it, so will try my best to stay positive.

    The problem is that it’s  hard to talk to family and friends about it.  I get the impression that some of them think that accepting my diagnosis is giving in and giving up.  And perhaps I will want to give up at some point.  I have been told that I need to have faith to expect a miracle.  I believe  in miracles and would love to have one, but I think I need to be realistic. I don’t want people preaching to me.  I don’t want people telling me I have to remain positive all the time.  I don’t want people pushing their herbal remedies and supplements on me.

    I guess they are just in denial at this point.

    I know many of you probably have it much worse.   And  guessing everyone goes through this.