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 ALS friends, we must unequivocally and unilaterally persist. We cannot stop when we hear a no. Go around it. Start a social media shit storm. Do whatever it takes. We have to because our lives depend upon it.
The act of breathing in. The process of being mentally stimulated to do or feel something, especially to do something creative. The supernatural work of the Holy Spirit. I received a pleasant surprise in the mail today. This picture of... Continue Reading →
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 →
I practice in my Christian tradition that: my mind is to be fixed on praiseworthy things Finally, my brothers and sisters, always think about what is true. Think about what is noble, right and pure. Think about what is lovely and... Continue Reading →
Oh, there is much I want to do in 2017. Find a cure for ALS. Advocate for social justice. Travel to Europe. Walk. Write a book. There is much to do, but I'm not resolving to DO anything. My new... Continue Reading →
Much of my emotional suffering is a result of unmet expectations. The visible suffering of ALS is obvious in loss of ability to control my body. Sure it's frustrating for me and everyone who loves me. So we slow down,... Continue Reading →
Shelly Hoover 
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