It has been more than 30 years since Lorrie Smietanski lost her beloved husband, Gary “Smitty” Smietanski, to Amyotrophic Lateral Sclerosis, an aggressive disease that only needed six years to cut him down in his prime.
So much has changed in the world since the father of one, a former forklift driver, left it in 1991.
But ALS continues to kill indiscriminately.
So Lorrie continues to extend hope for a cure to others who are in the throes of this heartbreaking disease.
Every year, even during COVID, Lorrie has organized a Walk for Life team to raise awareness about ALS and the Les Turner Foundation (lesturnerals.org), which provides education and support to those suffering with ALS and their loved ones.
The 22nd Annual Les Turner Walk for Life kicks off at 10:30 a.m. Saturday at Soldier Field in Chicago.
“It’s an event,” Lorrie said. Her group — Smitty’s Laughing Fools — is made up of mostly family, including her daughter, Jenna, and some of her friends.
“It’s really sweet how supportive they are,” Lorrie said. After the walk, the team returns to Lorrie’s Lemont home to reminisce.
Other teams come from across Chicagoland, including many of the suburbs. Participants include those honoring the memory of a lost loved as well as people currently living with ALS, some of whom walk with supportive devices, such as canes, and others of whom are in wheelchairs.
“Over the years I’ve seen an increase in the number of participants, younger people and people from different ethnic groups. This disease does not discriminate,” Lorrie said.
They walk to raise money for the foundation, which offers medical supplies, information and support to anyone struggling with the disease. The organization also strives for a cure.
According to the foundation, “ALS … weakens the muscles we use to move, swallow and breathe. It can, in some cases, also cause changes in behavior and thinking. The effects of ALS grow more severe over time and eventually become fatal.
“There is no cure for ALS yet. But the pace of research has significantly increased in recent years, and organizations like the Les Turner ALS Foundation are ready to provide help and support to people living with ALS, caregivers and everyone affected by the disease.”
On its website, it cuts to the chase: “ALS is scary. Really scary. But we’re here to answer your questions, provide encouragement and ensure you, and those you love, feel comforted and confident as you progress in your ALS journey.”
Lorrie said her husband was diagnosed with ALS soon after they became engaged in the 1980s. His doctor, noticing some muscle atrophy in his hands, ordered some tests.
The diagnosis was devastating, even to doctors, because Gary was only 30, she recalled.
The couple married and moved into an apartment near Midway Airport. They soon had a daughter.
“The disease was hard on him and everybody,” Lorrie said. “It’s not easy when you still have your mind but your body is failing.”
Gary often felt bad that “he should be taking care of us instead of us taking care of him,” she said.
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His mom would come during the day and stay with him until Lorrie came home.
“Then I would take care of him. That was our day,” she said.
Because of his physical challenges, Gary was rarely able to leave their second-floor apartment.
“We couldn’t get him out of the building. But he didn’t want to go out either,” she said.
The foundation helpful them find resources and doctors, and provided needed equipment, she said.
Giving back after Gary passed, Lorrie said, is easy.
Lorrie recently retired from her job as an inpatient mental health activity therapist and now works part time with Southeast Association for Special Parks and Recreation in Downers Grove.
She first became involved with fundraising for ALS with the Les Turner Foundation’s annual Music Mart events. Two decades ago, that event ended and the Walk for Life began.
In 2014, the Ice Bucket Challenge brought nationwide attention to the disease. While some of that has waned, Lorrie said, the current campaign to get former Bears defensive tackle Steve McMichael — who announced he had ALS in 2021 — into the Hall of Fame is helping to renew interest.
The goal of the foundation, Lorrie said, is to find a treatment to slow the progression, to find a cure and, in the meantime, help people with services and equipment.
“A lot of people don’t get a lot of help,” she said. “If you don’t have good health insurance, it’s expensive.”
So she helps any way she can. “During COVID we couldn’t congregate at the lakefront, so (my team) walked my neighborhood,” Lorrie said.
Even now, so many years after Gary died, Lorrie said, she feels grateful for the opportunity to walk in his memory and in hope of a cure.
The event, she said, “gives more to me than I give to it.”
Donna Vickroy is an award-winning reporter, editor and columnist who worked for the Daily Southtown for 38 years.