CLEVELAND, Ohio — A diagnosis of ALS — amyotrophic lateral sclerosis, a fatal, incurable illness — is a devastating blow for patients and their loved ones.

There is an especially cruel aspect to the disease, notes Gia Polo, whose father, Carl Polo, died from ALS in November 2022 at age 71, just 18 months after his diagnosis.

“It always hits the best of us,” said Polo. “It always hits the best people.”

That certainly is true of her father, a hard-working family man who was devoted to his church and his community, Polo said.

“To know my dad is to love my dad,” Polo said. “There was no one who didn’t like him.”

Polo, general manager of the downtown Cleveland Kimpton Schofield hotel, is using her grief — and her hard-earned knowledge — to advocate for more research and support for the victims of ALS and their families.

She has enlisted in several organizations, particularly I Am ALS, founded in 2017.

For the Polo family, the diagnosis came out of the blue for a man who, his daughter said, had never been sick a day in his life.

That life began in 1951 in Villa D’Arco, in the province of Pordenone, Italy. Carl Polo came to America at age 6 with his mother, following his father, who had already immigrated here.

He grew up in the westside Fulton Road neighborhood and attended St. Rocco Catholic Church and School, serving as an altar boy. He remained active with the church his entire life.

He attended West Technical High School, and one of his first jobs following graduation was driving a truck for Beverage Distributors. He later obtained his own route, where he made many friends among the city’s restaurant and bar owners.

He married his wife, Lynn, a nurse, in 1984, and daughters Carli and Gia soon followed.

He drove a cement truck for the Tech Readymix company, which young Gia called the “swirly truck.”

Growing up, Gia and her dad enjoyed watching movies and “Jeopardy!” together, and every week he made “Sunday sauce,” a recipe passed on to his daughters.

Gia attended North Olmsted High School and Ohio University for her freshman year. On Fridays, her dad would drive the four hours to Athens, pick up his daughter at noon and drive back so she could spend the weekend with her friends and family.

“No one else did that for me,” Gia said.

Gia worked in the hospitality industry after college and had a prestigious position in Washington, D.C., when her father’s first symptoms began to emerge shortly after he retired.

We are ALS

It first hit his hands, although doctors did not recognize this as the onset of ALS. After surgery, his grip weakened, and his speech became slurred.

The difficulty with identifying ALS early is that it does not follow a direct path of attack, Polo said. Typically at first, it affects speech and swallowing, or in the arms and legs, she said.

There is no test for ALS, a neurodegenerative disease, she pointed out.

“You have to go through the ringer.”

Carl Polo was finally diagnosed with ALS on May 19, 2021. His daughter said he didn’t talk about it for three days.

Gia called her mother and asked, “Is this treatable?”

She repeated the question, and the answer was “No, it’s not.”

Then she asked, “Is he going to die from this?”

“Yes, he is.”

The family went into full support mode. Gia began coming to Cleveland every other weekend from D.C. to help.

When her father could no longer take care of himself, Gia quit her position in August 2022 and became her father’s 24/7 caregiver.

When people would tell her she was a “selfless daughter,” she would deny it.

“I said: ‘No, I’m not. I’m a daughter. I was raised by two really loving people.’ I would do anything for my dad, and I did.”

That included all the daily living tasks, from feeding to bathing to toileting, and eventually maintaining his breathing apparatus and administering morphine to ease his pain.

In the midst of this, she asked herself: “Where is the support? Where is the community?” of people having similar experiences.

That’s when she found I Am ALS, founded by Brian Wallach, an assistant U.S. attorney who had worked for Barack Obama.

Wallach was diagnosed with ALS in 2017, and now, at 42, continues to live with the illness and uses a wheelchair.

Wallach and his wife, Sandra, started I Am ALS as a patient-centered movement to advocate for research and funding.

“I needed to feel connected,” Gia Polo said of the time when she joined I Am ALS. “It became embedded in me.”

Her activities have included speaking of her experience at the National Mall in Washington, where 6,000 flags had been placed to recognize the new ALS cases diagnosed every year.

One flag had her father’s name on it.

The group has had its successes. Through Wallach’s advocacy, in 2021 Congress passed and President Joe Biden signed into law ACT for ALS, providing $80 million in funding, expanding federal research and giving patients more rapid access to treatments.

Polo said too many drugs are still “bottlenecked” before the FDA, but progress is being made. When her father was diagnosed, only two drugs were available, and now there are five.

But there is still no cure.

Carl Polo died Nov. 29, 2022.

Gia delivered his eulogy, saying his life was “founded in his faith, his friends and his family.”

Back in the CLE

Gia decided to remain in her hometown, and considers it her dad’s “last fatherly act” to make sure she was safe.

She applied for the position at the Kimpton Schofield, and missed not having her dad to consult with on such a big move.

His presence, however, was felt.

As Gia gazed out of the sixth-story window of the hotel’s presidential suite, onto Euclid Avenue, she saw facing each other a Beverage Distributors truck and a Tech Readymix truck — her father’s past occupations.

“That was his way of saying, ‘I’m watching you,’” Gia said.

She hopes to spread the word about the need for ALS research and treatment beyond those directly affected by the illness.

And as it takes the best, ALS sometimes brings out the best.

The ALS advocates “are some of the most beautiful souls I’ve ever met in my life,” she said. “Our friendships are rooted in mutual heartache, and it has turned us into stronger, more kind and patient people than we could have ever imagined.”

For information, visit www.iamals.org.

ALS Facts

Every 4.4 minutes, someone is diagnosed with ALS. And every 4.4 minutes, someone dies of the disease.

One out of every 500 Americans will be diagnosed with ALS, and there are 500,000 cases worldwide.

More than 60 percent of people surveyed by I Am ALS did not know that the disease is fatal.

More than 95 percent could not name an ALS support organization.

Ninety percent of those diagnosed have no family history of ALS.

A higher percentage of military veterans than civilians contract ALS, which is considered related to their service.

ALS patients live an average of two to five years after diagnosis.

Notable people who have had ALS include New York Yankees great Lou Gehrig (it is sometimes called Lou Gehrig’s disease), astrophysicist Stephen Hawking and actor David Niven.

Source: I Am ALS and ALS.org.