By Celine Klosterman
IOWA CITY — Mary Jo Loria just takes things day by day.
The member of St. Patrick Parish in Iowa City used to spend sleepless nights worrying about a future with ALS, a neurodegenerative disease that gradually paralyzes all of a person’s voluntary muscles. But family, friends, faith and a new perspective help her take advantage of each day, she said.
“I’ve got so many friends and family members, and we love to get together and just laugh,” Mary Jo said. “It saves me.”
Support from them, husband Joe and sons Adam and Jeremy have helped keep her going since being diagnosed with ALS in December 2007. Shortly before then, she was tearing down wallpaper in the Williamsburg house Jeremy had just moved into when she noticed something was wrong.
“My arms kept getting weaker, and I couldn’t raise them,” Mary Jo recalled.
A doctor initially suggested a nerve in her neck was pinched. But after multiple tests, she received devastating news.
Her condition, formerly known as Lou Gehrig’s disease, is fatal. Most afflicted with it die in two to five years – usually when chest muscles can no longer help the lungs breathe. As that point approaches, routine tasks such as walking, getting dressed and feeding oneself become impossible.
“It blew us away,” Mary Jo said of the diagnosis. “I never in my life dreamt of something this serious.”
Over two months, her fate slowly sank in. Sometimes, anxiety about “the worst part, the end” would consume her.
“But I couldn’t live that way,” she said. “You have to pick yourself up and start dealing with it. I had to put it out of my mind, had to focus just on this day.”
So she did. Until June 2008, she continued her data entry job in West Liberty. When reaching files on top shelves and flipping pages grew difficult, her right hand’s strength allowed her to punch keys. When getting ready in the morning proved exhausting, people drove her to work.
But when Mary Jo could no longer dress herself, she decided to apply for disability benefits. “I’d been working all my life, but now to stay at home with nothing to do was extremely hard.”
She tries to keep busy where possible. Though she now can’t move her arms or walk more than a few steps, special electronics allow her to control a computer, phone and TV with her voice.
She prays often, too. “My faith has gotten a lot stronger… I’ve learned to turn things over to God. I need the help.”
When friends visit, they sometimes read books that generate discussion on religion. The companions help as much as they can, Mary Jo said, but Joe is her “savior.” He continues to work full-time as an account clerk at the University of Iowa to take advantage of health insurance benefits, but also serves as his wife’s primary caregiver.
“I don’t know if I could’ve handled this as well as she has,” Joe said. “… This is something you always think will happen to someone else. You ask why, but who knows. You’ve got to play the hand you’ve been dealt.”
According to Adam, Mary Jo has played that hand admirably. “Through all of this, Mom has shown so much courage and strength. Her positive attitude on life continues to inspire others. Even though the disease has taken so much away from her, she continues to remain upbeat.”
He added that his family is grateful for friends’ and relatives’ support.
“For Adam and I,” Jeremy said, “watching her go through something like this has just made us want to be there for her more than ever, because she was always there for us.”
The two sons have helped organize an upcoming benefit at St. Patrick’s Aug. 29 to raise money for a new motorized wheelchair and wheelchair-accessible van. Those purchases will help Mary Jo get more out of what she hopes are another two to three years of spending time with family, including four “beautiful granddaughters.”
Her goals for that time are simple, but optimistic. “I hope to enjoy as much as I can,” she said.