• Frankie a reex posted an update 1 year, 2 months ago

    Well I haven’t came 100% to grips yet with this disease ALS, everything that I do is a challenge just to get dressed is mine blowing all I really do is figure out ways to die..man I was always full of life now I’m full of thoughts of death…sad truth

    • Hi Frankie – – yes, it’s a new learning experience to teach ourselves how to live our lives while living with ALS. I too was surprised at the slowness of my movements, getting dressed was in itself a “workout” and, the dips in energy were new too. But you/we still have our brains – – and can figure out creative ways to keep our lives moving forward despite our ALS. It helped me to imagine my body had a re-boot, and I was back to default, factory settings – – and had to relearn/reteach my body how to do previously known movements. But, it is possible… I invite you to read about my experiences:

      Are You Stuck in the ALS Waiting Room?


      and

      When We Do Something, Something Happens

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