CLEVELAND, Ohio — ALS or Amyotrophic Lateral Sclerosis, better known to many as Lou Gehrig's Disease, is a degenerative nervous system disease that weakens muscles and impacts total body function. Every 90 minutes, someone is diagnosed and dies from ALS.
The life expectancy is between two to four years after diagnosis. There is still no cure for the more than 30,000 people in the U.S. who are fighting it each day.
A Northeast Ohio woman now aims to change that.
Gia Polo is raising awareness and attempting to make a difference after she lost her own father to the disease.
Her goal is to change lives and one day find a cure.
She's spreading her message during May's ALS Awareness Month.
Choking back tears— Polo is now working each day to preserve her father's memory and make sure no one forgets his name or illness.
"He was so loved. He was the type of guy that anywhere he went-- he always knew somebody," Polo said.
She wears his pinky ring on a necklace, and she even tattooed her right pinky finger to pay homage to him.
Captured in countless photographs—she sees the joy, love and faith of her father, Carl Polo's 71 incredible years of life.
"One of my favorite photos of the two of us. We're dancing. I never got to have a father-daughter dance," Polo said.
Tragically—it was all punctuated by an illness she wished she had never known of.
"In 2021... On May 19, my Father was diagnosed with ALS," Polo said.
The current General Manager of the Kimpton Schofield Hotel in Downtown Cleveland was then working in Washington D.C. as a hotel manager when she received a call from her sister and then her mother that would change everything.
"I remember her saying, Dad has ALS, and I dropped the phone and I probably turned shades of white. And I couldn't talk, and I was physically ill to my stomach. I said is this treatable? And I remember her saying no."
The days and silence that followed were deafening.
She would ultimately move home—reuniting with her family—to begin around-the-clock care.
She couldn't help but replay in her mind and repeatedly question how long her father had unknowingly been living with ALS.
"In September of 2020, he had started to have issues in his right hand. I remember talking to him once and saying he was having a really hard time opening the toothpaste tube," Polo said.
She says it took months for doctors to ultimately determine what was wrong.
He even underwent extensive surgery on that hand as doctors believed it was a contracture.
"ALS is diagnosed by the process of exclusion of other diseases. There's no test you run that says you have ALS," Polo said.
Over time, she watched her dad's strength, speech and overall physical abilities regress.
"He just seems so weak. He just seems like, I'm starting to hear it in his voice. I'm starting to see it in his hands," Polo said.
Polo says her father went from golfing each week with his buddies and making sauce in the kitchen while listening to his record collection including his favorite Bruce Springsteen, to his primary means of survival being a constant BiPAP Machine.
"Towards the end—I couldn't have it removed for more than 10 seconds to give him a quick toothbrush, put it back on, give him a minute. One hundred percent tube fed. Not being able to speak. Not being able to breathe," Polo said.
Hospice nurses moved in and worked with her loved ones to make her father comfortable.
She says it was clear he was present and fully aware of the situation.
"They are always 100% there cognitively. That's what's really scary. You become a prisoner of your own body," Polo said.
Carl Polo lost his battle with ALS on November 29, 2022—roughly 18 months after he was diagnosed.
"I will never be able to fully wrap my head around it. But I'm getting close to it by talking with different people who have ALS," Gia Polo said.
Polo has since gotten a tattoo on her arm—each flower a symbol of her family's birth flowers.
Her fathers is at the top, showing his ability to bring her mother, sister Carly and herself together.
She hopes those who are battling the illness or even have it themselves fight to bring change and awareness.
She says It takes the best people at any age.
"It's un-treatable. There's no drugs that are going to help reverse the disease and no drugs right now that will stop the disease," Polo said.
Polo says fundraising is a critical part of helping support research efforts.
She's working on an event in the near future.
She dedicates her free time as an advocate and works directly with the ALS Therapy Development Institute, ALES for ALS and the Live Like Lou Foundation.
Polo has also rallied for the passage of ACT for ALS (the “Accelerating Access to Critical Therapies for ALS Act”).
She credits Hospice of the Western Reserve and countless family members for their support—including her father's sister Anna and Anna's husband Dennis.
For more information on ALS, click here.
