So many people have asked me what ALS feels like or if I’m experiencing any pain. My body is getting weaker but I have no pain associated with ALS. Years ago, before doctors knew what ALS was, patients likened the muscle twitching feeling to little bugs running around under their skin. My muscle twitches feel like mild electrical shocks throughout my body. The twitches kind of remind me of what a blinking Christmas tree looks like. The blinks move to different muscles in my body like the lights on a tree.
My upper body reminds me of a ragdoll because when someone stands me up to walk my head falls forward because my neck muscles are no longer strong enough to support my head. My arms dangle at my sides so when I sit down I have to have someone place them on my lap. My right thumb is the only part of my hands and arms that still works. My legs still support my body somewhat and I’m grateful for that.
And my heart is still broken yet so full of love.