I am Susan Hoerber

living with ALS


I AM ALS and I want to make a difference in fighting the beast called ALS.

I AM ALS … I was diagnosed with ALS in January 2018, but it took three years from the onset of symptoms to be diagnosed. It started with weakness in my arms in 2015 and funny twitches with my thumb and index finger. I kept dropping things. Then one night while I was fishing, I could not hold my pole and reel the fish in. … From the very beginning I knew there was something wrong with my body. After many more falls, I decided to seek out another neurologist who happened to have a doctoral thesis on EMGs. He performed my third EMG on my whole body (not just a hand or right leg and arm, which abnormalities were said to be from neuropathy). The look on his face confirmed my worst fears: He told me I had ALS and my symptoms were pretty advanced, and he referred me to the ALS multidisciplinary clinic in Miami. In January 2018, a day before my 62nd birthday, they confirmed the ALS diagnosis (ALSFRS 35). My reply was “What can I do to make a change in how ALS is diagnosed?” I signed up for the University of Miami Biomarker Research Gene Study. Moving forward to now, I have been able to advocate on Capitol Hill, speak at an ALS walkathon, and join many online ALS advocacy groups. With the loving support of my husband and son, they make this possible. You see, I am now a full quadriplegic. But I still fight against the beast. … In the end, I have signed up to donate my brain and spine to the University of Miami Brain Bank and my whole body to research. I’m not wealthy or famous … I AM ALS and I want to make a difference in fighting the beast called ALS.

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