My disease progression continues, but this time it’s different. I can live without the use of my legs; I can live without the use of my arms. It’s not easy, but doable. But now, my progression is reaching the point... Continue Reading →
I’ve never known such pain as that of my broken heart, a physical presentation of indescribable grief. My ALS journey, a treatise on grief, started with the loss of cute shoes, then my career and mobility. Sometimes I threw things... Continue Reading →
Unpublished blog posts sit abandoned in my draft folder. One is bitter; Another begs victim hood. That is not what I want to put out into the universe. So here I sit, gazing at my keyboard, trying again. I’ll just give it to you straight.
I was sprinkled a Methodist, confirmed a First Congregational, dunked an evangelical, and spent years in between with the Presbyterians and non-denominational folks. My life-long Christian tradition provided encouragement, comfort, community and opportunities to serve others. For this, I'm grateful.... Continue Reading →
I've been on this ALS journey for nearly five years. That alone makes me one of the lucky ones as half of those diagnosed die within two years. And, thanks to the VA, I have access to the equipment and... Continue Reading →
I'm an awkward physical mess and sometimes an emotional mess. Sadness catches in my throat and rolls down my cheeks without warning. Let's express and validate our sadness when needed. But let's not stay there.
My latest ALS progression has me looking like Dr. Spock. I noticed that I can't close the gap between my middle and ring fingers -- Live Long and Prosper! This got me thinking about what it means to live long... Continue Reading →
Legs are relatively easy to replace with equipment and ramps. I use a power chair, shower chair, patient lift, lateral rotation bed, and a van with a ramp and hand controls. Once I'm showered, dressed and lifted into Ruby Tuesday... Continue Reading →
Death is a constant in the ALS community. Yet this one hit me particularly hard. My dear friend and adopted sister won her battle with ALS on Wednesday, January 18th. I met Karen and her amazing family in May, 2014... Continue Reading →
Shelly Hoover 
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