The primary indicators of hassle have been unmistakably odd.
It wasn’t like Chad Amond to neglect the identify of somebody he knew as they greeted. Not as soon as however twice.
And it definitely wasn’t like him to ask his spouse, Amy, when she introduced dwelling a brand new kind of his favourite ginger snack, “What’s ginger?”
“There’s positively one thing occurring,” Amy Amond advised her husband of 22 years. “Let’s name somebody and determine this out.”
Over the subsequent 18 months, the Amonds discovered themselves in a dizzying hunt for solutions — Googling signs, assembly docs, trying to find something to clarify why the affable, gregarious Amond was immediately stumbling over his phrases and struggling to complete sentences. Their lives grew to become an countless cycle of fixed letdowns as docs thought of all kinds of eventualities.
Nate Smallwood | Tribune-Assessment
Chad Amond poses for a portrait whereas working on the Westmoreland Chamber of Commerce in Greensburg on Aug. 11.
The reply arrived in March, when a neurologist confirmed a risk that they had feared. At simply 45 years outdated, Amond was identified with a uncommon type of dementia that may finally rob him of his capability to talk, write, learn and perceive anybody. Worst of all, the illness — known as major progressive aphasia — has no treatment.
“It’s irritating and so unhappy for me,” Amond mentioned throughout an interview together with his spouse at their Unity dwelling. “It’s unhappy that it’s not curable.”
For Amond, president and CEO of the Westmoreland Chamber of Commerce since 2011, the analysis has upended a busy life as a high-profile neighborhood advocate. Household and pals name him the center and soul of the county, as he spends lengthy hours at breakfasts, dinners and enterprise conferences. He speaks at about 128 occasions a yr to advertise the area, the place he grew up in Derry Township. He has been, unabashedly entrance and middle, one of many county’s loudest cheerleaders.
And phrases all the time got here simple.
“Once I spoke on the podium, I might have three bullet factors on the again of my enterprise card and I might converse for 20 minutes,” he mentioned, happy with his capability to command a roomful of individuals.
That talent has immediately vanished.
The talking engagements have come to a halt. Though the pandemic additionally performed a job, his illness has emerged as a formidable foe. As sufferers lose their communication abilities, the illness impacts every part from their temper to their relationships with others.
Shane Dunlap | Tribune-Assessment
Chad Amond, as president of the Westmoreland County Chamber of Commerce, addresses the group with opening remarks earlier than the beginning of a discussion board for candidates operating for Westmoreland County Commissioner on Oct. 29, 2019, on the Westmoreland County Group Faculty’s Science Corridor Auditorium.
That’s particularly devastating to pals Jim Smith and Jason Rigone — who together with Amond have been informally anointed the county’s “Three Amigos” — banded collectively to push for the area’s progress.
“He’s a perfectionist,” mentioned Rigone, govt director of Westmoreland County Industrial Improvement Corp. “Every time he’s concerned in one thing, he’s going to regulate the main points. He’s enthusiastic about making Westmoreland County an awesome place.”
Amond, Rigone and Smith textual content one another nearly each day, not solely about their skilled lives but additionally about their doings outdoors of labor.
“What Chad all the time does is discover a option to carry a a lot completely different perspective to the dialog,” mentioned Smith, president and CEO of Financial Development Connection. “He has taken us all to high school in one of the simplest ways attainable with communications. It’s taking the man that was probably the most eloquent of the three of us and taking away that brilliance of communication that he had. It’s a really merciless factor.”
Chad and Amy Amond joke that they met on a avenue nook. They have been each attending Fort Ligonier Days in 1996 when Chad, then dwelling in Philadelphia and dealing in gross sales and advertising for the Flyers and 76ers, was enthusiastic about a younger lady carrying a Grove Metropolis Faculty sweatshirt and jacket.
“Do you go to Grove Metropolis?” Chad requested Amy.
The 2 struck up a dialog and met at a celebration later that evening. By the tip of the weekend, Amy had left a gentle boyfriend for her newfound love. They have been engaged inside seven months.
When Amy says she was charmed by his humorousness and fast wit, Chad jumps in as if to show the purpose:
“I wasn’t good-looking?” he says, and each erupt in laughter.
Amy’s Western Pennsylvania roots — she grew up in Ligonier — appealed to Chad, who was trying to transfer again dwelling.
“I liked the Flyers and Sixers, however I simply wished to have my household right here,” he mentioned.
Courtesy of Amond household
The Amond household throughout a trip in July at Bethany Seashore, Del.
As they inform the story of how they met, the couple’s 4 kids — Maddie, 17; Katie, 14; Alex, 11; and Abby, 8 — watch their dad and mom as they sit in a comfortable household room lined with guitars utilized by three generations of Amonds.
“Weren’t you guys like 4 years aside at one time?” Abby requested, perplexed that her dad and mom are just one yr aside.
“Only one time,” an amused Amy responds. “Then we caught up to one another.”
“How did I not know this?” Abby fired again.
The Amond kids describe their dad as humorous, wonderful and hardworking. His humorousness is off the charts, all of them agreed, then rapidly revealed his obsession with basic rock, baseball and foolish dad jokes.
On a scale from 1 to 10 — with 10 being one of the best dad — Chad Amond is “simply a 12,” mentioned Maddie, who’s about to start out her freshman yr at Slippery Rock.
Minutes later, with the youngsters having gone upstairs, Amy broke down in tears when requested how the youngsters are doing.
“That’s a tricky one,” she mentioned as her husband brings a tissue.
Maddie and Katie know extra in regards to the actuality of the illness than their youthful siblings. They’ve looked for data on-line and haven’t shied away from conversations in regards to the illness with their mother.
“I can actually say I don’t suppose the little ones fairly perceive what’s coming,” mentioned Amy, who speaks with the calm and assurance of a veteran mother.
The youngsters have been the primary the couple advised about Chad’s analysis.
They already knew one thing was amiss. They’d overheard discuss assessments and MRIs and a attainable mind damage.
There’s one thing unsuitable with Dad’s head, the dad and mom advised them in March.
The youngsters cried and hugged their father.
Alex was unfazed.
“What do you imply there’s no treatment?” the sixth-grader requested.
“Covid’s been occurring for 2 weeks, and so they’re already speaking about therapies. Don’t fear, Dad, they’re going to search out one thing. It’s going to be fantastic,” he mentioned.
Courtesy of Amond household
Westmoreland County Chamber of Commerce Chad Amond high-fives his son, Alex, after throwing out a primary pitch earlier than the Pirates recreation in opposition to the Cubs on Wednesday, July 3, 2019, at PNC Park.
A ‘irritating’ sickness
Discovering that “one thing” is probably not simple, consultants mentioned.
The sickness, which some name a detailed relative of Alzheimer’s illness, damages the entrance and temporal lobes within the mind tissue. That a part of the mind, which in Chad’s case has shrunken in dimension, controls speech and language.
“It’s irritating to us that we don’t have higher therapies,” mentioned Dr. Eric Weisman, a neurologist at Allegheny Well being Community who’s main Amond’s care.
Amond’s illness has not adopted the everyday development documented in medical journals. Most sufferers first expertise speech hassle, whereas reminiscence loss turns into an issue later.
In Amond’s case, reminiscence issues manifested early, he and his spouse mentioned. He got here dwelling from work on two events and advised his spouse that he couldn’t keep in mind the identify of somebody he had encountered, though he clearly knew the particular person.
“I acknowledged his face however couldn’t consider his identify,” Amond mentioned.
Then got here the incident with the ginger, which Amond has all the time liked and likes to place in Moscow mule cocktails.
Due to these reminiscence lapses, docs first explored the chance that Amond’s signs have been being attributable to a traumatic mind damage. He had performed soccer till 10th grade, did intramural boxing in school and had a nasty fall whereas snowboarding in 1995.
Amond’s younger age and demanding job prompted docs to additionally think about nervousness and stress as attainable causes for his reminiscence lapses and verbal slip-ups.
An MRI dominated out a tumor and mind most cancers.
Medical doctors lastly steered that Amond endure neurocognitive testing, which concerned six hours of exams to measure each side of his mind operate, from remembering phrases to recognizing geometric figures.
The check sealed the analysis. However it didn’t present the diploma of aid that they had envisioned.
“There’s a certain quantity of aid having a reputation to place to it,” Amy Amond mentioned. “Sadly, when it’s one which doesn’t have any kind of treatment, you form of go proper again into that mode of unhappiness.”
Finally, sufferers with major progressive aphasia grow to be mute, Weisman mentioned.
“It’s very upsetting not to have the ability to get your phrases out,” Weisman mentioned. “In contrast to different situations, there’s such an acute consciousness that an issue exists. They reside it.”
Consequently, he has seen as many as 75% of individuals with the illness develop a temper dysfunction, he mentioned, with tendencies to grow to be simply upset or withdrawn.
Within the absence of therapy, docs have tried to alleviate signs with a few of the medicine used to scale back signs of Alzheimer’s. Amond has been taking varied doses of the Alzheimer’s drug Namenda for nearly three months.
“Sadly, he’s not seeing a lot enchancment,” mentioned Amy Amond, a medical pharmacist with a doctorate.
Weisman mentioned sufferers with the illness can profit from utilizing an digital gadget similar to an iPad, which might converse for them.
The subsequent step for Amond will probably be to enhance his weight loss plan with the assistance of a nutritionist, a step his spouse believes can assist her husband’s physique heal itself.
“You concentrate on what you are able to do,” she mentioned. “You may be wholesome. You may be optimistic. You may be non secular.”
Each day routine unchanged
When Amond’s speech first grew to become slurred in early 2019, he frightened individuals would suppose he had a substance abuse downside.
“It nearly seemed like he’s had a few beers,” his spouse mentioned.
Because the illness has progressed, he can observe a dialog and formulate what he desires to say in his head, however, strive as he may, generally he can’t get it out, she mentioned.
When he talks, he depends on his spouse to fill within the gaps and full his sentences. He pauses steadily, typically stopping mid-conversation. As Amy Amond places it, he can describe every part round a phrase with out really saying it.
“Lots of belongings you learn in regards to the illness use the instance of how they gained’t have the ability to keep in mind the phrase ‘horse,’ however they’ll say it’s an animal that you just journey with a saddle,” she mentioned.
Nate Smallwood | Tribune-Assessment
Chad and Amy Amond outdoors of their dwelling in Unity on Aug. 4.
Amond hasn’t modified his each day routine.
He drives, goes to work and takes Alex to baseball observe. As he describes it, “I’m pondering appropriately.”
He has remained outwardly optimistic and has caught to the corny humorousness that makes his children snigger.
“I can nonetheless juggle,” he mentioned laughing.
Amond’s colleagues on the chamber, lots of whom have grow to be pals, have given overwhelming assist. They reward his dedication and fervour and vow to stay behind him.
“He has been so instrumental in every part that the chamber has carried out,” mentioned Christina Jansure, chair of the chamber’s board and vice chairman of gross sales and advertising for Jeannette Specialty Glass. “He’s the voice and the face of the chamber. We’ll proceed to work with him so long as he’s ready.”
For Amy Amond, the shortage of a concrete therapy has been the largest supply of frustration. She contrasts her husband’s scenario to 1 by which a affected person can take an antibiotic to beat an an infection.
On probably the most private stage, it’s tough for somebody who has devoted her grownup life to serving to individuals overcome sickness to not have the ability to assist her personal husband.
“It’s terribly exhausting not having the ability to repair it,” she mentioned. “I repair all people. That’s what I do.”
As she says that, her husband chimes in, half-joking: “Why can’t you repair me?”
Courtesy of Amond household
Chad Amond and his 4 kids, together with their mini Goldendoodle Maggie, have a good time his 45th birthday at their dwelling in Unity.
Amy Amond is the primary to say the uncertainty of the times forward won’t be simple to navigate and it’s sure to check their endurance.
“I don’t suppose we all know what to anticipate, I’ll be very trustworthy,” she mentioned, rapidly including, “It’s not a enjoyable development.”
The assist of Chad and Amy’s dad and mom — Charley and Lugene Amond of Derry and Tom and Janis Shearer of Ligonier — has been essential, the couple mentioned.
The grandparents are a continuing presence, serving to shuttle the Amonds’ children to actions and, within the case of Chad’s dad, serving to to construct a powerful bar of their dwelling’s basement.
“We’re each very happy with Chad,” Charley Amond mentioned. “He all the time wished to do his greatest and excel at something he did. When he bought into school, that’s the place he actually took off and made it for himself. What stands out is his capability to stroll right into a room and simply management it nearly or have a very good really feel for what’s occurring.”
A couple of weeks in the past, after they have been within the kitchen, Alex seen his dad was having a tough time saying one thing.
“Mother,” he requested, “is it getting a bit worse for Dad?”
Chad Amond is aware of the longer term is grim. Sufferers reside wherever from three to 12 years after the illness is identified.
He wasn’t in search of sympathy.
“This isn’t about me,” he mentioned.
What he desires is a approach for researchers to launch extra medical trials to check potential therapies. As he explains this, his spouse helps him discover the appropriate phrase.
“Consciousness,” she mentioned.
His eyes immediately mild up, and he jumps in to complete her sentence.
“Consciousness,” he repeats, “to assist individuals sooner or later get cured.”
The Amonds mentioned they’re decided to face the illness as a household. They settle for the fact, however in Amy’s phrases, they’ve a “glass half-full” perspective.
“I’m not keen to say that there’s nothing that may be carried out,” she mentioned. “We’re not carried out with this but. It’s not the tip.”
Luis Fábregas is editor of the Tribune-Assessment’s Alle-Kiski Valley content material. Comply with him on Twitter @LuisTrib.
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