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ALS Worldwide welcomes any questions or comments you might have.  We provide free, personalized and confidential support services to anyone in the ALS community—whether you are a patient or a loved one, friend, health care professional or caregiver of someone diagnosed.

Get help now! Fill out the Online Profile Form or if you would prefer to talk with someone by email or phone first, please contact us at [email protected] or 1-608-663-0920.

For all other inquiries, please use the email form to the right and we will respond promptly to your request.Thank you.

ALS Worldwide
5808 Dawley Drive
Fitchburg, WI 53711‑7209

ALS Worldwide
July 11, 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."

Sandy Waller,
Virginia, United States