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ALS Worldwide
1800 North Prospect Avenue, Suite 4B
Milwaukee, WI 53202

ALS Worldwide
July 04, 2017

Sandy and Her Family Live And Cherish Each Day as a Gift, Despite ALS

"In June 2015, I was sitting alone in my doctor's office, waiting on the results of an EMG. I was focusing on positive thoughts when into the room they walk, box of tissue in-hand. I'm thinking 'this can't be good.'

My doctor starts talking; I hear Progressive Bulbar Palsy. All the while, I'm smiling and looking at that box of tissues. I'm a 'WebMD-er,' so I knew about Bulbar-Onset ALS. 'No, I don't have that,' I thought to myself. 'I'm a 45-year old woman, I exercise, and I'm rarely sick. They got it wrong.'

I did not shed a tear, just kept smiling until I got to my car. It took me a while to tell my family because I just couldn't say my diagnosis out loud. Only after I received a second opinion did I even think, 'Hey, this might be real.'

I've always had a strong Christian faith to get me through. Yet, this path is hard. I have times when I don't want to get out of bed. I get frustrated not being able to comb my hair or dress myself. I can still walk and talk a little, but I can no longer live alone and maintain my home. My mom, two sons, and a slew of relatives and friends help me push on. I'm praying I can beat this, and I will keep fighting. I'm 'living while I'm living.' Everyday is a gift."