Moving to make a difference

On a recent Saturday, members of Life Time Athletic clubs sweated for a cause at their inaugural Life Time x Augie’s Quest GO90 Fundraiser Workout to Fight ALS. At Eden Prairie Life Time Athletic and 155 other clubs across the country, participants donated to join in a variety of 90-minute workouts offered at each club. All of the $240,000 raised benefits Augie’s Quest to Cure ALS and the Life Time Foundation. Donations are being accepted through Oct. 31. 

Augie’s Quest to Cure ALS was begun in 2005 by Augie Nieto, founder and chief executive of Life Fitness, after his own diagnosis of ALS (amyotrophic lateral sclerosis). The nonprofit organization strives to accelerate ALS research, enhance patient care and promote awareness in the effort to cure ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.

According to Gretchen Simoneaux, vice president of Augie’s Quest to Cure ALS, someone is diagnosed with ALS, also known as Lou Gehrig’s Disease, every 90 minutes. The length of the fundraiser workout was chosen to highlight that statistic.

For Chris Lee of the Life Time Eden Prairie Athletic club, that statistic hits hard, making this fundraiser very important to her. Her husband, Jack Lee, was diagnosed with ALS  in 2015 when he was 56 and died at 59.

Her roles as a fitness instructor and studio leader throughout the last 20 years at Life Time allowed many co-workers and club members to share in her experience.

“The people at my club walked this walk with me,” she said. “Even though it’s been six years since he died, they remember. So Life Time Eden Prairie has been very successful in fundraising.”

Jack’s symptoms began with muscle quivers (fasciculations), which he attributed to his workouts. He started losing strength instead of getting stronger, leading to many tests, doctor visits and hopes for an easily fixable explanation for his symptoms. But when a neurologist told them Jack  had “classic ALS,” Lee said, “I remember walking from the doctor’s office to the elevator in complete silence and thinking how our world had just completely changed.” 

With one daughter beginning college at the University of Minnesota and the other starting high school, “life was never the same after his diagnosis,” said Lee.

“Jack’s type of ALS was very aggressive and textbook in its progressions. He was in a wheelchair very quickly,” said Lee. In addition, “the strain of ALS Jack had was genetic, which is uncommon. That is why this is even more personal to me, because my two children have a 50 percent chance of having this gene.”

Lee soon experienced the unrelenting physical demands of caregiving while watching the disease overtake her husband.

“It is a surreal experience, and you have to do what you have to do,” she said. “You don’t have a choice. You can’t just fall down. You still have to be a mother, a caretaker; you still have to run the life you built.” 

Within 18 months, Lee’s husband, whom she described as “larger than life” and full of charm, could no longer speak, and “by the end, he couldn’t even lift his hand to scratch his face. It is absolute hell because their brain is still functioning, but their body can’t do anything.”

Despite the emotional and physical toll on Lee as a caregiver, the family also felt the love and support of friends, family, and even strangers.

A local lawn service that heard of their situation mowed the Lees’ lawn and tended their garden for two years. Friends built ramps at the front and back of the house so Jack could go outside, and his brother bought them a van so they could travel together. They made memories going to late-night movies, with Jack racing the kids down the aisle in his wheelchair.

“People come alongside you and you get your faith restored in humanity and it’s amazing,” said Lee. “When you think the world is horrible and you go through something like this, you see there is still good left in this world.”

Lee pays that kindness forward at Life Time. “I teach because I know that someone in my class is going through something,” she said. “I have no idea what kind of day or life someone is having when they walk through my studio doors. But you have to come alongside them, whether it’s to give them crap, encourage them or just make them smile.”

She also serves as a source of hope and as a resource for others affected by ALS or suffering other types of grief. “Everyone knows my story,” she said. “Widows come to find me; it’s kind of been my testimony.

 “People new to this don’t even know where to start or how to even get to the other side. But that is the hope, that you can see the other side.”

Recently remarried, Lee said, “I found love again. We all ebb and flow in this life, in the good times and bad.”

Lee and her daughter, Annie, teamed up to teach two 45-minute classes at the event. The Eden Prairie Life Time Athletic club was the top fundraising location nationwide, raising close to $12,000 so far.

“For them to tell me that every 90 minutes someone is diagnosed with ALS blows me away,” Lee said. “Everyone will, in fact, at some point know someone with ALS, whether they see it from afar or, God forbid, live this life. Right now, there is still no cure. I want people to know this kind of urgency because we want to be further along in this. There’s got to be something we can progress in, even if it’s having more quality of life after diagnosis. This is not something that is so far away from anyone.”

The  Life Time x Augie’s Quest GO90  Fundraiser Workout to Fight ALS continues to take donations through Oct. 31.