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ALS Update: Three and five

Three years and five months ago, I was diagnosed with ALS. I feel heavier each day. Gravity, the weight of it bearing down upon my chest, my arms, my legs; the weight of gravity pressing my buttocks hard into the mattress. Caregivers have trouble grasping the reality of weight pressing down on me when nothing "heavy" is on me.

Muscle spasms are an ongoing problem, increasing in intensity, inexorably marching me toward total immobility. I am a quadriplegic but I take heart in the small movement that remains, my thighs retain the ability to open my legs into a cobbler's pose, sometimes I can bend my knees sideways but not upwards, defying gravity. Likewise, I can move my upper arms toward my torso and, at times, away but not enough to lift my arms nor defy gravity. Calf and forearm muscles are wasted away, appallingly flabby, skin absent of mass.

Muscle spasms also occur on the inside and the muscles around my organs quiver and clench. The most vulnerable muscle is the diaphragm, And mine is spasming every time I change body position.

Neck muscles are under major blitz attack, small muscles spasm, seize, dig in deep and hold. I notice their eventual death when my head bobbles in unexpected ways. Operation of my Tobii eye gaze-operated alternative and augmentative speech device is getting more difficult as my neck weakens. The left side of my mouth, my upper lip, has lost function and hangs awkwardly over my teeth. When turned onto my left side, saliva pools in that direction and spills out, as drool. Oh, the Horror! (Snicker)

Speaking of saliva, I'm increasingly unable to distribute saliva in my mouth, leaving sections bone dry, or others overwhelmed. As a consequence, my gums have receded back to the nerve roots of several teeth, leaving me fearful of tooth loss. Prior to ALS, my teeth and gums were in great shape.



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