The first signs of trouble were unmistakably odd.

It wasn’t like Chad Amond to forget the name of someone he knew as they greeted. Not once but twice.

And it certainly wasn’t like him to ask his wife, Amy, when she brought home a new type of his favorite ginger snack, “What’s ginger?”

“There’s definitely something going on,” Amy Amond told her husband of 22 years. “Let’s call someone and figure this out.”

Over the next 18 months, the Amonds found themselves in a dizzying hunt for answers — Googling symptoms, meeting doctors, searching for anything to explain why the affable, gregarious Amond was suddenly stumbling over his words and struggling to finish sentences.

Their lives became an endless cycle of constant letdowns as doctors considered all sorts of scenarios.

Nate Smallwood | Tribune-Review Chad Amond poses for a portrait while working at the Westmoreland Chamber of Commerce in Greensburg on Aug. 11.  

The answer arrived in March, when a neurologist confirmed a possibility they had feared. At just 45 years old, Amond was diagnosed with a rare form of dementia that will eventually rob him of his ability to speak, write, read and understand anyone. Worst of all, the disease — called primary progressive aphasia — has no cure.

“It’s frustrating and so sad for me,” Amond said during an interview with his wife at their Unity home. “It is sad that it is not curable.”

For Amond, president and CEO of the Westmoreland Chamber of Commerce since 2011, the diagnosis has upended a busy life as a high-profile community advocate. Family and friends call him the heart and soul of the county, as he spends long hours at breakfasts, dinners and business meetings. He speaks at about 128 events a year to promote the region, where he grew up in Derry Township. He has been, unabashedly front and center, one of the county’s loudest cheerleaders.

And words always came easy.

“When I spoke at the podium, I could have three bullet points on the back of my business card and I could speak for 20 minutes,” he said, proud of his ability to command a roomful of people.

That skill has suddenly vanished.

The speaking engagements have come to a halt. Although the pandemic also played a role, his disease has emerged as a formidable foe. As patients lose their communication skills, the disease affects everything from their mood to their relationships with others.

Shane Dunlap | Tribune-Review Chad Amond, as president of the Westmoreland County Chamber of Commerce, addresses the crowd with opening remarks before the start of a forum for candidates running for Westmoreland County Commissioner on Oct. 29, 2019, at the Westmoreland County Community College’s Science Hall Auditorium.  

That’s especially devastating to friends Jim Smith and Jason Rigone — who along with Amond have been informally anointed the county’s “Three Amigos” — banded together to push for the region’s growth.

“He is a perfectionist,” said Rigone, executive director of Westmoreland County Industrial Development Corp. “Whenever he’s involved in something, he’s going to control the details. He is passionate about making Westmoreland County a great place.”

Amond, Rigone and Smith text each other almost daily, not only about their professional lives but also about their doings outside of work.

“What Chad always does is find a way to bring a much different perspective to the conversation,” said Smith, president and CEO of Economic Growth Connection. “He has taken us all to school in the best way possible with communications. It’s taking the guy that was the most eloquent of the three of us and taking away that brilliance of communication that he had. It’s a very cruel thing.”

Family man

Chad and Amy Amond joke that they met on a street corner. They were both attending Fort Ligonier Days in 1996 when Chad, then living in Philadelphia and working in sales and marketing for the Flyers and 76ers, was smitten by a young woman wearing a Grove City College sweatshirt and jacket.

“Do you go to Grove City?” Chad asked Amy.

The two struck up a conversation and met at a party later that night. By the end of the weekend, Amy had left a steady boyfriend for her newfound love. They were engaged within seven months.

When Amy says she was charmed by his sense of humor and quick wit, Chad jumps in as if to prove the point:

“I wasn’t handsome?” he says, and both erupt in laughter.

Amy’s Western Pennsylvania roots — she grew up in Ligonier — appealed to Chad, who was looking to move back home.

“I loved the Flyers and Sixers, but I just wanted to have my family here,” he said.

Courtesy of Amond family The Amond family during a vacation in July at Bethany Beach, Del.  

As they tell the story of how they met, the couple’s four children — Maddie, 17; Katie, 14; Alex, 11; and Abby, 8 — watch their parents as they sit in a cozy family room lined with guitars used by three generations of Amonds.

“Weren’t you guys like four years apart at one time?” Abby asked, perplexed that her parents are only one year apart.

“Just one time,” an amused Amy responds. “Then we caught up to each other.”

“How did I not know this?” Abby fired back.

The Amond children describe their dad as funny, amazing and hardworking. His sense of humor is off the charts, they all agreed, then quickly revealed his obsession with classic rock, baseball and silly dad jokes.

On a scale from 1 to 10 — with 10 being the best dad — Chad Amond is “easily a 12,” said Maddie, who’s about to start her freshman year at Slippery Rock.

Minutes later, with the kids having gone upstairs, Amy broke down in tears when asked how the kids are doing.

“That’s a tough one,” she said as her husband brings a tissue.

Maddie and Katie know more about the reality of the disease than their younger siblings. They’ve searched for information online and haven’t shied away from conversations about the disease with their mom.

“I can honestly say I don’t think the little ones quite understand what’s coming,” said Amy, who speaks with the calm and assurance of a veteran mom.

The kids were the first the couple told about Chad’s diagnosis.

They already knew something was amiss. They had overheard talk about tests and MRIs and a possible brain injury.

There’s something wrong with Dad’s head, the parents told them in March.

The kids cried and hugged their father.

Alex was unfazed.

“What do you mean there’s no cure?” the sixth-grader asked.

“Covid’s been happening for two weeks, and they’re already talking about treatments. Don’t worry, Dad, they’re going to find something. It’s going to be fine,” he said.

Courtesy of Amond family Westmoreland County Chamber of Commerce Chad Amond high-fives his son, Alex, after throwing out a first pitch before the Pirates game against the Cubs on Wednesday, July 3, 2019, at PNC Park.  

A ‘frustrating’ illness

Finding that “something” may not be easy, experts said.

The illness, which some call a close relative of Alzheimer’s disease, damages the front and temporal lobes in the brain tissue. That part of the brain, which in Chad’s case has shrunken in size, controls speech and language.

“It’s frustrating to us that we don’t have better treatments,” said Dr. Eric Weisman, a neurologist at Allegheny Health Network who is leading Amond’s care.

Amond’s disease has not followed the typical progression documented in medical journals. Most patients first experience speech trouble, while memory loss becomes a problem later.

In Amond’s case, memory problems manifested early, he and his wife said. He came home from work on two occasions and told his wife that he couldn’t remember the name of someone he had encountered, even though he clearly knew the person.

“I recognized his face but couldn’t think of his name,” Amond said.

Then came the incident with the ginger, which Amond has always loved and likes to put in Moscow mule cocktails.

Because of those memory lapses, doctors first explored the possibility that Amond’s symptoms were being caused by a traumatic brain injury. He had played football until 10th grade, did intramural boxing in college and had a bad fall while skiing in 1995.

Amond’s young age and demanding job prompted doctors to also consider anxiety and stress as possible causes for his memory lapses and verbal slip-ups.

An MRI ruled out a tumor and brain cancer.

Doctors finally suggested that Amond undergo neurocognitive testing, which involved six hours of exams to measure every aspect of his brain function, from remembering words to recognizing geometric figures.

The test sealed the diagnosis. But it didn’t provide the degree of relief they had envisioned.

“There’s a certain amount of relief having a name to put to it,” Amy Amond said. “Unfortunately, when it’s one that doesn’t have any type of cure, you kind of go right back into that mode of sadness.”

Eventually, patients with primary progressive aphasia become mute, Weisman said.

“It’s very upsetting not to be able to get your words out,” Weisman said. “Unlike other conditions, there’s such an acute awareness that a problem exists. They live it.”

As a result, he has seen as many as 75% of people with the disease develop a mood disorder, he said, with tendencies to become easily upset or withdrawn.

In the absence of treatment, doctors have attempted to alleviate symptoms with some of the drugs used to reduce symptoms of Alzheimer’s. Amond has been taking various doses of the Alzheimer’s drug Namenda for almost three months.

“Unfortunately, he’s not seeing much improvement,” said Amy Amond, a clinical pharmacist with a doctorate.

Weisman said patients with the disease can benefit from using an electronic device such as an iPad, which can speak for them.

The next step for Amond will be to improve his diet with the help of a nutritionist, a step his wife believes can help her husband’s body heal itself.

“You focus on what you can do,” she said. “You can be healthy. You can be positive. You can be spiritual.”

Daily routine unchanged

When Amond’s speech first became slurred in early 2019, he worried people would think he had a substance abuse problem.

“It almost sounded like he’s had a couple of beers,” his wife said.

As the disease has progressed, he can follow a conversation and formulate what he wants to say in his head, but, try as he might, sometimes he can’t get it out, she said.

When he talks, he relies on his wife to fill in the gaps and complete his sentences. He pauses frequently, often stopping mid-conversation. As Amy Amond puts it, he can describe everything around a word without actually saying it.

“A lot of things you read about the disease use the example of how they won’t be able to remember the word ‘horse,’ but they can say it’s an animal that you ride with a saddle,” she said.

Nate Smallwood | Tribune-Review Chad and Amy Amond outside of their home in Unity on Aug. 4.  

Amond hasn’t changed his daily routine.

He drives, goes to work and takes Alex to baseball practice. As he describes it, “I am thinking correctly.”

He has remained outwardly positive and has stuck to the corny sense of humor that makes his kids laugh.

“I can still juggle,” he said laughing.

Amond’s colleagues at the chamber, many of whom have become friends, have given overwhelming support. They praise his commitment and passion and vow to stick behind him.

“He has been so instrumental in everything that the chamber has done,” said Christina Jansure, chair of the chamber’s board and vice president of sales and marketing for Jeannette Specialty Glass. “He is the voice and the face of the chamber. We’ll continue to work with him as long as he’s able.”

For Amy Amond, the lack of a concrete treatment has been the biggest source of frustration. She contrasts her husband’s situation to one in which a patient can take an antibiotic to overcome an infection.

On the most personal level, it’s difficult for someone who has devoted her adult life to helping people overcome illness to not be able to help her own husband.

“It’s terribly hard not being able to fix it,” she said. “I fix everybody. That’s what I do.”

As she says that, her husband chimes in, half-joking: “Why can’t you fix me?”

Courtesy of Amond family Chad Amond and his four children, along with their mini Goldendoodle Maggie, celebrate his 45th birthday at their home in Unity.  

Amy Amond is the first to say the uncertainty of the days ahead will not be easy to navigate and it is certain to test their patience.

“I don’t think we know what to expect, I’ll be very honest,” she said, quickly adding, “It’s not a fun progression.”

The support of Chad and Amy’s parents — Charley and Lugene Amond of Derry and Tom and Janis Shearer of Ligonier — has been crucial, the couple said.

The grandparents are a constant presence, helping shuttle the Amonds’ kids to activities and, in the case of Chad’s dad, helping to build an impressive bar in their home’s basement.

“We are both very proud of Chad,” Charley Amond said. “He always wanted to do his best and excel at anything he did. When he got into college, that’s where he really took off and made it for himself. What stands out is his ability to walk into a room and just control it almost or have a good feel for what’s going on.”

A few weeks ago, when they were in the kitchen, Alex noticed his dad was having a hard time saying something.

“Mom,” he asked, “is it getting a little worse for Dad?”

Chad Amond knows the future is grim. Patients live anywhere from three to 12 years after the disease is diagnosed.

He wasn’t looking for sympathy.

“This is not about me,” he said.

What he wants is a way for researchers to launch more clinical trials to study potential treatments. As he explains this, his wife helps him find the right word.

“Awareness,” she said.

His eyes instantly light up, and he jumps in to finish her sentence.

“Awareness,” he repeats, “to help people in the future get cured.”

The Amonds said they are determined to face the disease as a family. They accept the reality, but in Amy’s words, they have a “glass half-full” attitude.

“I’m not willing to say that there’s nothing that can be done,” she said. “We’re not done with this yet. It’s not the end.”

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