Family, friends do ALS walk in memory of teacher from Orland Park
BY MIKE NOLAN firstname.lastname@example.org September 19, 2013 7:22PM
Samantha Matusiak holds a photo of herself (left), her brother Keith, and her mom Mary, near the "Bean" at Chicago's Millennium Park. Her mom died in June from ALS. A photo of her mother as a child is to the left. | Mike Nolan~Sun-Times Media
Updated: October 21, 2013 6:04AM
As thousands gather this Sunday to trek along Chicago’s lakefront and through Soldier Field for the 12th annual Les Turner ALS Walk4Life, Mary Matusiak’s unflagging sense of humor will be on display.
In April, when her daughter, Samantha, was signing up to take part in the walk, she needed a team name, and Mary suggested one — “ALS sucks.” About 50 family and friends will be marching under the banner to raise money for ALS research.
The name was, in part, a way for the Orland Park woman to thumb her nose at a disease that was then weeks away from taking her life. She was determined, her daughter said, to live with ALS on her own terms.
On a webpage soliciting support this past May for another ALS fundraiser, Mary Matusiak said that laughter was the “best defense” against the disease. She died June 3, just a few weeks shy of her 53rd birthday.
Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, according to the ALS Association.
At least eight members of her extended family over three generations have been diagnosed with it or suspected of having it, which is rare. Samantha Matusiak said that in just 5 to 10 percent of ALS diagnoses has the disease also been found in another member of the same family.
In November 2009, Mary Matusiak, a second-grade teacher at Hometown Elementary School, began having weakness in her hands, which soon spread to her legs. She was diagnosed with ALS in February 2011 and retired from teaching at the end of the 2011 school year.
“She knew at that point she couldn’t continue teaching,” her daughter said.
Her mom’s aunt had succumbed to ALS when Mary was 16 years old.
“She was real young when she got her first exposure to ALS,” Samantha Matusiak said. “My mom was pretty sure her grandpa had it too.”
Mary Matusiak took part in a study of a potentially promising new drug, Dexpramipexole, which, it was hoped, would slow the progression of the disease. However, in January 2013, it was determined the drug had not lived up to its promise and further development was halted.
Samantha Matusiak said her mom didn’t agree to take part in the study because she had high hopes the drug might prolong her life.
“She was a big believer in contributing in any way to science, which might help (others with ALS) down the road,” she said.
She said her mom wasn’t about to let ALS rob her of the opportunity to enjoy life the best she could. Mother and daughter went on trips to Boston, New York and Philadelphia, watched a rodeo in Houston and at the end of last year traveled to Jamaica, partly to celebrate Samantha’s birthday, who was born on New Year’s Day.
Trying to get her mom in her wheelchair down onto the beach wouldn’t work, so she was able to get some help carrying her on a lounge chair down to the surf.
“It’s easy to hole up and say, ‘This is horrible and it sucks’ because it’s hard, it’s hard to travel and get around,” Samantha said.
She took some time off from her job to help her dad, Ron, care for her, and it wasn’t until April that she needed the help of a caregiver.
“She was OK on her own; she really pushed herself,” Samantha said. “She was all bones. She had no muscle left.”
The family had made arrangements with a hospice provider just as her mother’s condition dramatically worsened, Matusiak said.
“Once your diaphragm muscle goes,” she said, her words trailing off. “The end came rapidly.”
For the walk, they expect to raise more than $7,000, with the money earmarked for research being done by Dr. Teepu Siddique at Northwestern University. His studies include trying to determine how ALS could affect so many members of Mary Matusiak’s family, her daughter said, noting one of her mother’s cousins has been diagnosed with ALS.
“With our family, he thinks he knows what’s causing it. Within our family there might be a specific gene marker that is a common thread in the family,” she said. “But then it’s a matter of figuring out how to stop it.”