US Airways pilot Alan Romatowski received news on his 56th birthday, Sept. 5, 2007, that he was one of the estimated 200,000 people in the U.S. with the early-onset version of Alzheimer's disease randomly striking people before age 65.
The Butler County resident was devastated, as anyone would be. Then he began doing things that few others with the disease were attempting, and that presented a new and challenging chapter for the ever-bantering daredevil who had loved to ride motorcycles, sky dive and scuba dive, on top of flying airplanes since he was a teenager.
Mr. Romatowski began volunteer activities delivering meals to shut-ins and putting a smile on the faces of nursing home patients as he pushed them in their wheelchairs to physical therapy. He worked odd jobs at a gas station and Costco to help support a family that could no longer rely on his six-figure income from flying.
And most notably, without a trace of embarrassment, he made himself a local face of those afflicted by the incurable disease. Through the Alzheimer's Association, he made local speaking appearances and visited politicians in Harrisburg and Washington. He served on the state association's board and on the national association's first advisory panel of those with the disease. He and his wife, Josie, put themselves and their ordeal with the disease in the public spotlight through an annual series in the Post-Gazette that began in 2008.
And finally, Sunday morning at Arden Courts of North Hills, where he depended on aides and nurses to care for him since October, Mr. Romatowski became one of the half-million Americans who die annually from the disease, the nation's sixth-leading cause of death. The Middlesex resident was 62, and he left a trail of admirers even though his capacities had begun diminishing by the time they knew him.
"He didn't hide from the disease at a time when he easily could have covered it up," said William Klunk, co-director of the University of Pittsburgh's Alzheimer Disease Research Center. "His goal was to help fight the disease, and if that meant he gave up some of his privacy and own pride, he was very willing to do that."
Mr. Romatowski threw himself into major research studies that Pitt's ADRC was taking part in, with his wife driving him from Butler County to Oakland regularly for brain scans, experimental drug infusions and extensive neurological testing.
Typical of the determination with which Mr. Romatowski confronted Alzheimer's, he would try to jog his memory with notes, questioning from his wife and other techniques on the drive down Route 8. He hoped to boost his performance on mental ability tests by the time they reached the research center at UPMC Montefiore. He wasn't shy about telling anyone he had Alzheimer's, but he did not want anyone to think it had crippled him.
"They would always make him count backwards by 7, and he had that written down on a piece of paper he kept in his wallet and would pull out to try to memorize," Ms. Romatowski said in recalling a determination on her husband's part to remain productive -- and perceived by others as useful.
He succeeded in that for a good five years of activities after diagnosis, although his inevitable slide became more severe after 2012, exacerbated by a head injury he suffered from a fall last September outside his adult day care center.
"He really went past the diagnosis and did a lot with his life after Alzheimer's. He took it by the horns and he did what he could with it, and I really admire him for that," said Ms. Romatowski, who became a daily caregiver for all of his needs, such as dressing and hygiene, before he moved into Arden Courts.
Mr. Romatowski grew up in a farming family, but his father was also a licensed pilot. Alan became proficient in flying before he had a license to drive a car. He attended Rutgers University but left it to take a job as a commercial pilot, and he ended up flying for Pacific Southwest Airlines and then US Airways.
On a PSA plane preparing for takeoff in Stockton, Calif., in 1980, an armed hijacker took control of the cockpit. Mr. Romatowski, a brown belt in karate, ended up alone with him. When the man was distracted during negotiations with authorities, the 5-foot-7 pilot seized the gun and detained him until security agents came aboard, leading to a thank-you letter from FBI director William Webster.
He flew commercial airliners for 28 years before his confusion on standard tests required of pilots in the summer of 2006 gave the first indications something was wrong. He was grounded from flying and eventually lost his job. As with many Alzheimer's patients, the next devastating blow was losing his ability to drive, which he initially resisted with a fury. For Mr. Romatowski, it also meant giving up his beloved motorcycle, on which he had experienced a couple of falls.
In January 2008, he joined a few other men as part of the local Alzheimer Association's first support group meeting monthly for those at a young age in early stages of the disease. For the next few years, he was one of the group's jokesters, trying to keep up the morale of others who were declining at a faster pace.
"From the very beginning, he was very open, very direct and very straightforward," recalled Lois Lutz, the education outreach coordinator for the Greater Pennsylvania Chapter of the association.
Mr. Romatowski's willingness and ability to articulate his experiences made him a valuable asset as part of the association's advocacy efforts, she said.
"It's of tremendous value that you can physically see a person in his late 50s who says, 'I have Alzheimer's disease,' because most people think you have to be 85 years old," Ms. Lutz said. "It expands things from focusing on the caregivers to focusing on the people diagnosed and their needs and expectations."
As time progressed, Mr. Romatowski lost his ability do public speaking, and his stumbling in private conversations became more pronounced. Alzheimer's afflicts all of its victims differently, and in addition to difficulty in following instructions, his biggest problem became one of spatial orientation. He lost ability to navigate in his own home, or understand simple activities such as brushing his teeth or even sitting in a chair.
His wife stoically tolerated the care-giving burdens until his fall and head injury made them unmanageable. She hated the disease, but also was struck by flashes of humor from it, like when Alan watched a "M*A*S*H" rerun on TV about Corporal Klinger's mess hall cooking having made everyone sick. When she gave him dinner soon afterward, he was certain he had similar symptoms himself, and he blamed them on Klinger. In actuality, he was fine.
Ms. Romatowski said the impact of the disease included her husband's heightened awareness of the importance of his family, as well as the contributions he could make to the wider world.
"A lot of people are airline pilots, and a lot of people have dropped out of airplanes with a parachute, and a lot of people can tell jokes, but there's a special group of people that can be given a diagnosis as devastating as he got and make the best out of that diagnosis," she said. "Somewhere, somehow, he reached into the depths of his being, and by God, he did it Alan's way. It was hard for him, but he did it anyway."
In addition to his wife, Mr. Romatowski is survived by a daughter, Katie Jarmin of Butler; two sons, Marek Romatowski of Blossburg, Tioga County, and Yuri Romatowski of Butler; his father, Edward Romatowski of Luray, Va.; and two siblings, Joyce Woodward and Michael Romatowski, both also of Luray.
A celebration of his life is planned at 1 p.m. May 18 at the Runway Sports Bar & Grille, 473 Airport Road, Butler.
Memorial contributions may be made to either the Alzheimer's Association, P.O. Box 96011, Washington, DC 20090-6011; or the University of Pittsburgh Alzheimer Disease Research Center, UPMC Montefiore, Four West 200 Lothrop St., Pittsburgh, PA 15213-2582.
Gary Rotstein: firstname.lastname@example.org or 412-263-1255.