At his breakfast table in March 2010, Tommy Harris' brain behaved like a broken record.
For a couple of years, his loved ones had taken quiet notice of how Harris, a gregarious man with a breezy laugh, began to leave in the middle of conversations. He acted "just kind of like he was lost," his wife, Jackie Harris, said from their shared homestead in Hope.
Then, while eating breakfast that March morning, Tommy's eyes "looked wrong," Jackie said. He kept saying over and over that he was going to eat the eggs on his plate.
"It was like his brain got stuck," she said.
Jackie called an ambulance, and a Texarkana hospital treated Tommy for symptoms of a stroke. It wasn't until 2013, after Tommy's health declined even further, that he got an accurate diagnosis from the University of Arkansas for Medical Sciences: progressive supranuclear palsy.
The rare brain disorder comes with a list of symptoms as long as its name. It impairs movement, speech, the ability to swallow, eyesight and balance. It also can sour the patient's disposition, cause forgetfulness and prompt random outbursts of emotion.
Worst of all, the symptoms take hold quickly. Five years after his diagnosis, at the age of 67, Tommy's gaze is permanently locked forward. His joints are contorted. Though his mind is sharp, he spends all of his time on an in-home hospital bed, often with a grandchild curled up by his hip. He uses hand signals to communicate.
As of right now, progressive supranuclear palsy can't be cured. After symptoms first emerge, the life expectancy is five to seven years, according to CurePSP, a national organization that supports patients with neurodegenerative diseases and their families.
But Tommy's family has been, and continues to be, full of hope. By spurring what they think will become a viral social media campaign, they seek to raise the national profile of progressive supranuclear palsy so other patients, and the medical community, can be informed about the warning signs.
Sitting at her father's bedside on a May afternoon, Randi Haley repeated the slogans she'd learned.
"Hope changes everything," she said. "Awareness leads to cures."
DAUGHTERS AND CHICKENS
Tommy was the type of child to hoard lizards and frogs in his pockets. Always adventurous, he met Jackie while working in construction in Deer Park, Texas. They fell in love and raised four daughters together. Tommy also has another daughter from a previous relationship.
He retired after spending 26 years as a heavy-equipment operator, sometimes manipulating iron while suspended 200 to 300 feet in the air, said his sister, Sarah Webb.
Tommy's philosophy was, "You don't miss work. Even for the flu," Jackie said.
In 1997, the couple purchased a 10-house chicken farm in Hope. They expanded to 14 houses in 2000 and ran the operation mostly by themselves. Eventually, they sold the farm and decided to build retirement homes.
For fun, Jackie and Tommy attended auctions, hunting for collectibles. Randi even became a certified auctioneer.
"We looked like Sanford and Son, coming home," Jackie joked.
The family would throw parties with dancing and karaoke, a favorite pastime of Tommy's. He preferred old-fashioned country like Gene Watson, a crooner most famous for his 1975 hit "Love in the Hot Afternoon."
As Tommy lost the ability to sing and speak, he showed affection in other ways. A wood board painted with the phrase, "Buckwheat's love pats" hangs next to his bed. Tommy, whom Jackie nicknamed Buckwheat, presses his hand against the board, matching his fingers to a sky blue hand print, when he wants to show love.
Even as the disease has progressed, Tommy has kept in good spirits, his family said. Progressive supranuclear palsy is known to cause outpourings of emotion, either laughing or crying spells, Jackie explained. For Tommy, it was typically laughter.
"Thank God," Jackie said. "Because I couldn't handle the crying."
PIES FOR PSP
Still, the care Tommy requires is intensive. His food must be blended, then strained, so it won't clog his throat. He must be taken everywhere, including to the bathroom.
Jackie employs a helper who works 26 hours a week. Jackie, family members and friends fill in the rest of the time.
Tommy's military benefits -- he served in the Army -- do not cover his medical costs. Jackie said she has reached out to U.S. Sen. Tom Cotton and U.S. Rep. Bruce Westerman about possible legislation that could help.
A spokesman for Cotton said in an email that his office has been in contact with Jackie and that it's working with her to explore possible assistance from the U.S. Department of Veterans Affairs.
When a loved one is diagnosed with a rare disease, it can feel isolating. Friends "kind of look at you in awe that all this stuff is happening," Randi said.
"You feel alone because nobody really knows about it," Jackie said.
Progressive supranuclear palsy affects 5 to 6 out of every 100,000 people, according to current medical research. In the U.S., it's slightly more common than amyotrophic lateral sclerosis, known as ALS or Lou Gehrig's disease.
Yet, the first time people hear the phrase "progressive supranuclear palsy" is usually in a doctor's office, according to CurePSP. And though it affects about 17,500 people in the U.S., only a quarter of those people are accurately diagnosed, the organization estimates.
To combat this lack of knowledge, Tommy's family cooked up an idea: Pies for PSP.
Like the Ice Bucket Challenge -- a campaign that raised hundreds of millions of dollars for ALS research -- Pies for PSP was designed to saturate social media.
Randi, in particular, came up with the concept: Shoot a video of someone taking a pie to the face and post the video online to encourage others to do the same, along with making a donation.
She created a Facebook page. CurePSP helped make a GIF and choose a branding color, an aquamarine hue.
Lucas Metherall, marketing manager for CurePSP, said that when Randi told him about her idea, he thought it was brilliant.
"It might take a while to take off, but it's a fantastic idea. And it will get there," he said.
Donations lead to real medical breakthroughs, Metherall said. Researchers have reportedly credited funding from the Ice Bucket Challenge with helping them identify a new gene behind ALS.
Plus, the cost of actually caring for someone with progressive supranuclear palsy, or anyone with a neurodegenerative disease, is staggering, Metherall said. His organization provides grants to supplement some in-home care so the primary caretaker, usually a spouse, has a chance to unwind, if only for a little while.
Pies for PSP has gathered social media steam over the past few years. The mayor of Hope took a pie to the face, as did the county judge of Hempstead County and Bob Clausen, a news anchor with KARK in Little Rock, Jackie said. The family has heard from people as far away as France and Australia.
Metherall said he's been in discussions with the Nickelodeon network and the Detroit Tigers Foundation about possible partnerships.
The family also started an Arkansas support group that meets regularly in Little Rock. In the past three years, seven afflicted people involved with the group have died, Jackie said.
"You hate losing them, once you get close to them," she said.
Sitting across from her husband on a recent day, Jackie began to busy herself with what needed to get done. Next on the to-do list was lunch. She had to turn Tommy's meal of McDonald's hamburgers into something drinkable. Since he transitioned to a liquid diet, Jackie's gone through several blenders.
Randi smiled as her daughter climbed into bed to sit at Tommy's feet. Despite the challenges of the past several years, caring for her father, and being inspired by him, has brought everyone even closer, she said.
"We hug each other more often," she said. "All of us do."
A Section on 06/03/2018