WAUWATOSA, Wis. — Each year, about 5,000 people in the U.S. will be diagnosed with Lou Gehrig’s disease (ALS), according to the ALS Association. 

ALS is a neurodegenerative disease that affects nerve cells in the brain and spinal cord, resulting in muscle atrophy. 

What You Need To Know

  • ALS is a neurodegenerative disease that affects nerve cells in the brain and spinal cord, resulting in muscle atrophy

  • Sue Lauer was diagnosed in 2019 at 60-years-old

  • Her symptoms began in 2017 when she noticed twitching in her right arm

  • While there’s currently no cure for ALS, there are treatments and clinical trials

ALS can impact anyone. For about 90% of all cases, there’s no family history.  

Sue Lauer was diagnosed in 2019 at 60-years-old. Her symptoms began in 2017 when she noticed twitching in her right arm.

“I don’t know if you call it denial or didn’t want to realize what was happening,” said Lauer. “I knew ALS patients only live two to five years, but it seemed surreal. I couldn’t believe it was happening to me.” 

Sue said she’s been taking advantage of her slow progression. The first couple of years, she lived on the east coast near her son. 

“I got to see my first grandson born and my son is in the navy so he would get deployed,” said Lauer. “My daughter-in-law would have me over. It was during the pandemic, so we were each other’s company.” 

She also wanted to take the time to travel, one of her passions. A trip to Paris was canceled because of the pandemic. 

Lauer is now back in Wisconsin and getting around is becoming more difficult. 

“I’m to a point where I get nervous,” said Lauer. “Trying to get out of here. There’s so many things to think about. Just going to a restaurant. Will there be a ramp, will my chair fit at the table, will there be a bathroom with an automatic door?” 

Dr. David Shirilla, a neurologist who specializes in ALS at Froedtert and the Medical College of Wisconsin, said while there’s currently no cure for ALS, there are treatments and clinical trials. 

“We always tell people it’s a heavily researched disease,” said Shirilla. “We’re doing our best to come up with ways to not only slow the progression of the disease but also improve your quality of life. There’s a lot of new technology being development to give people functionality back they lost because of their weakness.” 

Lauer keeps busy. She said she enjoys visiting the zoo, attending ALS support groups and keeping in touch with her family. She’s looking forward to meeting grandson number two this summer. 

“Just taking it one day at a time,” said Lauer. “Trying to find the little fun. The joy in everyday. To keep myself motivated. A smile on my face helps.” 

Related Stories