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    • #16556

      Since diagnosed with ALS I’ve been living with this shadow overhead and it feels like I’ve been sleeping with a cloud above my bed.   I’ve been suffering for so long, trapped and I just can’t seem to move on. I’ve been hiding all my hopes and dreams away just in case a cure is found someday. I’ve been setting aside time, to clear a little space in the corners of my mind.   All I want to do is find a way back to the life I once had.   I can’t make it through another day without some hope for a way back….

      I’ve been watching but the stars refuse to shine.   I’ve been searching but I just don’t see the signs. I know that it’s out there.   There’s got to be something for my soul somewhere.   I’ve been looking for someone to shed some light. Not somebody just to get me through the night. I could use some direction and I’m open to any and all suggestions.   All I want to do is find a way back to the life I once had.     I can’t make it through another day without a way back.   And if I open my heart again, I guess I’m hoping maybe you’ll be there for me in the end….

      There are moments when I don’t know if it’s real or if anybody feels the way I feel. I need inspiration not just another medical negotiation.   All I want to do is find a way back to the life I once had.   I can’t make it through without a way back.   And if I open my heart to you, I’m hoping you’ll show me what to do. And if you help me to start again, you know that I’ll be there for you in the end…….I Promise

    • #16569
      Marianne Opilla

      Hello Dan,

      We all feel the sadness, hopelessness, horror, and the dark cloud that you describe.  And true, it seems that no matter how much we learn, and seek out, the end is the same: nothing. There is really no help for us.  We grieve all that we have lost and it seems endless. You are not alone. I was a runner, biker, skier, hiker, and worked full time as an RN. I worked out several times per week in the gym. All of these things are gone from my life.

      But, to exist in a constant state of sorrow is not good for your body.  The negative energy is draining mentally and physically. My son suggested reiki, and I was doubtful, but it has helped me immensely.  I have learned to live for the moment, and be calm and peaceful. Gentle yoga has benefitted me.  I have given up so much, but try to find new pastimes that I never tried before.  I also take Neudexta, which has been helpful in reducing crying and despair.

      I find that short rest periods are helpful for re-energizing.  I recently had to accept a wheelchair in the airport, but otherwise, I wouldn’t have made my connection.  Held back the tears and humiliation and just accepted it as a means to an end. I have discovered that I can ride an Adult  tricycle with ease. Cant walk very far, but on that easy to ride trike,  I can keep up with the grandchildren.  I try to do things with friends and family so maybe for a moment I can feel “normal”.

      Remember, “It doesn’t matter what we do, it matters why we do it.”

      Take Care and I hope you find your way to some degree of acceptance.   You are not alone.


    • #16581

      “Let nothing disturb you

      Let nothing frighten you

      Everything passes

      But God does not

      Patience obtains all

      Whoever has God lacks nothing

      Only God sufficies

      St. Teresa of Avila

    • #16588

      This old piece of advice repeats in my mind:  offer it up. I cannot physically engage but I can mentally help others through the spiritual realm. I do a lot of praying. Trying to pray more for others than for myself although I always am begging for new treatments and a cure, in time for me and for you. Every PAL is on my daily prayer list. May God have mercy on us all.

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