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Shelly Hoover

Author Educator Advocate

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It’s Different This Time

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 →

Guest Post: Patient Voices Matter

I’m grateful the National ALS Association gave me a platform to be heard.

The Official Blog of The ALS Association

This guest post is from Shelly Hoover, EdD, a member of the Patient & Caregiver Advisory Committee, and does not necessarily reflect the opinions of the Association staff, its Board of Trustees, or its chapters.

By guest blogger Shelly Hoover

Patient voices matter, yet the collective ALS patient community has been too patient and too quiet for too long.

The ALS Association led an unprecedented effort to develop an FDA Guidance Document for Industry. Here’s a quote from the introduction:

“In February of 2015, The ALS Association launched this effort to develop the first-ever community-driven drug development guidance for ALS with funding from the ALS Ice Bucket Challenge, bringing together over 100 participants including people living with ALS, caregivers, researchers, clinicians, and industry experts from across the world to contribute their expertise and experience. In parallel with this effort, a committee was formed to update the ALS clinical trial…

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Get On Board or Get Out of My Way

I'm done playing nice. I’m supposed to be dead. This is an urgent call to action. Keep reading. I need your help!  With an ALS diagnosis in 2013, I was given 2-5 years. I’m alive but being protected to death... Continue Reading →

Checking In

Unpublished blog posts sit abandoned in my draft folder.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.

The Little Things 

It felt like God gave me a gentle kiss on the forehead. This morning I was waiting for the ALS Advocacy conference to begin and in walked Chrissie, my sister from another mister. We embraced for a moment longer than... Continue Reading →

Preparing for Life without Hands

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 →

Balance: Mind, Body & Spirit

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 →

Resolutions with a Twist

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 →

My Shrinking World

Some is my own doing; some is a consequence of declining mobility and function. But no doubt, my world is shrinking. My constant go, go, go has been reduced to a single go and rest the remainder of the day.... Continue Reading →

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