Introduction

     I should have wrote about this long ago.  Perhaps I was hopeful that a cure was available, or that ALS was going to be a walk in the park. Instead we were hit head-on with the full brunt of this beast called ALS.  Since Dad's diagnosis and immediate onset, ALS progressed rapidly, ravaging my Dad's physiology and psyche.  This of course spiraled into emergent healthcare crises, transforming me at once from a flourishing academic with the joie-de-vivre– into his around-the-clock nurse, caregiver, medical insurance billing specialist, durable medical equipment coordinator and companion–all of which has consumed my free time, my academic studies, my mind, my body and spirit.

     "Amytropic Lateral Sclerosis."  

     I will never forget that name or the fact that I had never heard of this disease before.  We all drew a complete blank when the doctor gave the diagnosis, frozen with naive smiles on our faces because we didn’t know what else to do, or how to react.  Mom’s face painfully irritated me.  I wanted to protect her from the hurt; her girlish innocence captured in the awkward smile of not knowing what do to or how to interpret the physician’s look of seriousness and sorrow.  Our naive smiles, half innocent and half crying inside from reading the doctor’s nonverbals.  For some reason our awkward half smiles at the diagnosis of ALS made me feel naive, and we would soon come to know how naive we were.   In the aftermath of the ALS rapid progression, the heavy burden of Dad's caregiving on mom and I would devastate us in such a way that only another family with limited resources grappling directly with ALS and the intense caregiving would understand.

“It’s a neurological degenerative disease where the motor neurons in the brain cease to send signals to the muscles wherein the nerves are damaged and the muscles begin to wither.  It affects all the muscles, resulting in quadrapelgia, paralysis, loss of breathing and eventual death…”

the neurologist said scientifically. She continued,

“Normal lifespan is generally two to five years since the onset of the disease…I’m so sorry”

     Professionally composed, she pivoted on her high heels and walked out the door and let us absorb the initial shock of the diagnosis while she set up additional meetings with supportive medical professionals and therapists to lay out a plan of action.

     We all sat in deafening silence.

     That was about two years ago.


    Since then, Dad has progressed to the late stage ALS and Mom and I now  have the high honor of being the primary caregivers for Dad.  


     Prior to being transformed by ALS, Dad was quite the independent jet setter, galavanting the world with treasured vacations he saved up for, including humanitarian and medical missions to disaster sites around the world.  All of that, now cut short, with the devastating reality of rapid onset Lou Gherig's Disease.