‘So grateful’: Suburban man battling ALS honors 10-year anniversary of Ice Bucket Challenge
McHENRY, Ill. — A suburban man battling ALS organized an Ice Bucket Challenge to remember and continue the impact the social media movement made 10 years ago.
Scott Marsell, 52, of McHenry, started limping in the fall of 2016 and didn’t think much of it.
“I didn’t realize anything was wrong until a friend at work asked me why I was limping and I paid attention to it,” Marsell said. “He was worried. That started the slew of doctors.”
An MRI showed Marsell had a bulging disc in his back and doctors thought that was why he was experiencing right leg weakness and ordered him to start physical therapy.
In the summer of 2020, he noticed that his hands and arms began getting weak — which is a common symptom of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
In ALS, nerve cells break down which causes muscle deterioration all over the body. There is no cure and it’s always fatal.
The following summer, Marsell’s speech started to become affected, which is another symptom.
“I knew it was more than a back problem and a pinched nerve. Another neurologist ran through all the tests and told me it wasn’t ALS but he had no idea what it was,” Marsell said. “He referred me to a specialist. After seeing her and taking an EMG test and she confirmed it. Before that, I had done my own research, trying to come up with some idea, and everything led to ALS. So when she officially confirmed it — it wasn’t a great shock. It was a mix of emotions, for one relief because I finally had an answer to what was going on.”
It wasn’t all bad when he didn’t have answers. Moving back to McHenry in 2018, Marsell decided to switch physical therapists as he was being treated for the bulging disc. Little did he know, the switch helped him find his future rock — his wife Sarah.
After Marsell’s therapy sessions were up in 2019, Sarah and Marsell continued their friendship and ended up dating. But like some relationships, it didn’t work out in the beginning.
“We weren’t together when I got my diagnosis in February 2022,” Marsell said. “She knew my ALS and still wanted for us to be together, which speaks volumes about who she is and about her character. I couldn’t be more lucky to have such a wonderful person.”
The couple got engaged last year and married in May.
Officially diagnosed two years ago with symptoms presenting much longer than that, Marsell knew he wanted raise as much money as possible for ALS research while battling the deadly disease.
Marsell remembered the impact the Ice Bucket Challenge made in 2014 across the world and wanted to continue it after he was diagnosed.
The Ice Bucket Challenge went viral during the summer of 2014, When it was all said and done, around $220 million was raised for ALS research.
Golfer Chris Kennedy is credited with being the first to tie the challenge to ALS, which participants have an ice cold bucket of water dumped on them. It exploded after Patrick Quinn and former Boston College baseball captain Peter Frates, who were both battling the disease, got involved.
Soon, heads of state, famous athletes, celebrities and everyday citizens were posting their videos and challenging friends.
“When it first happened, people thought it may be a passing fad. It kept escalating and August 7 was the pinnacle,” President and CEO of ALS United Greater Chicago Julie Sharpe said. “It was an amazing time. The world was talking to individuals living with ALS. Over 17 million participated in 159 countries worldwide.”
Last Sunday, Marsell hosted his third annual Ice Bucket Challenge, but this year the 10th year anniversary brought extra significance.
Marsell of course wasn’t scared of a little cold water.
“It went very well. The final numbers aren’t in yet but we definitely had a lot of people there. It was very cold,” Marsell laughed.
Now ten years later, WGN News asked Sharpe about the impact the $220 million raised for ALS research and for those living with the disease.
Sharpe said there have been “extraordinary” scientific breakthroughs with 12 additional genes discovered. While there is still no cure, she said the new genes have led to more novel drug therapies aimed at slowing progression.
“Clinics have doubled. With today’s researchers — we are closer than ever to curing ALS,” Sharpe said. “There’s so many more individuals, researchers and scientists with eyes on this disease. There’s an excitement and I feel a sense of hope.”
The donations also have helped patients living with ALS to better communicate with the emerging technology.
Marsell is still able to communicate with his voice, but uses eye gaze technology as well.
“I can communicate by typing with my eyes and it focuses on words and letters,” he said. “It definitely makes life a little easier for me.”
Before it was widely available, Eric von Schaumburg, who lived over 10 years with ALS, tested the technology from his Hoffman Estates home.
“He was working with brain controlled-technology to allow ALS patients to communicate,” his brother Josh told WGN News last year. “He would spend everyday configuring it and sending back data with the hope other people could one-day use it.”
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Marsell, Sharpe and others in the ALS community will have their eyes on another inspirational person battling the disease — Steve “Mongo” McMichael. McMichael, who starred on the defensive line for the ’85 Bears, went public in 2021 that he had ALS.
He is unable to travel for the ceremony Saturday in Canton, Ohio, but Hall of Fame President Jim Porter, along with his wife Misty and teammates Richard Dent and Jimbo Covert will present him his iconic gold jacket and bust at their Homer Glen home that morning.
WGN’s Jarrett Payton will be giving McMichael’s Hall of Fame induction speech during the ceremony Saturday night in Canton.
McMichael will also be using the breakthrough eye-gaze technology to deliver a heartfelt message.
The moment will show progress is being made for the horrible disease, but more awareness and donations will be the vehicle that finally gets it cured.
ALS advocates and patients across the country are trying to revitalize the movement by posting their Ice Bucket Challenges with the hashtag #IceBucket10. Wednesday, the family of Pete Frates announced their intention to raise awareness as well.
“My son was a born leader, but even he could not have imagined the power we can unleash with such a simple act,” his mother Nancy Frates said. “One bucket of ice led to millions of beautiful tributes, and much more importantly, created a global platform for what had been a largely unknown, underfunded disease.”
The family will be honored at Fenway Park on Thursday.
Back in the Chicago area, Marsell’s former employer, Mitsubushi, is hosting donations for an upcoming Ice Bucket Challenge to honor Scott and raise money for research.
“I am so grateful for all of the support that my community shows us. It’s because of them that I am able to have the strength to truly fight this disease,” Marsell said. “My inner strength definitely comes from them.”
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