Pilot's life is hijacked by early-onset Alzheimer's disease
First of two parts
November 30, 2008 3:00 PM
Early-onset Alzheimer's patient Alan Romatowski undergoes a brain scan at UPMC Presbyterian in November. The scan was part of a study at the University of Pittsburgh Alzheimer Disease Research Center.
Alan Romatowski, 57, has been diagnosed with early-onset Alzheimer's disease. His home is set in a wooded area of Middlesex, Butler County.
Josie Romatowski talks about the impact of early-onset Alzheimer's disease on her husband, Alan, and their family. The Romatowskis live in Middlesex, Butler County.
Courtesy of Romatowski family
Alan and Josie Romatowski at their wedding in 1988. Mr. Romatowski has been diagnosed with early-onset Alzheimer's disease.
At UPMC Presbyterian, Alan Romatowski prepares for a brain scan on Nov. 20 as part of a study at the University of Pittsburgh Alzheimer Disease Research Center. Mr. Romatowski is battling early-onset Alzheimer's disease.
By Gary Rotstein Pittsburgh Post-Gazette
Alan Romatowski sits in the tasteful suburban living room of his older neighbors listening to Georgia Molloy talk about her husband Garry's descent into the mindlessness of Alzheimer's disease.
Alan's eyes fix on a window while Mrs. Molloy explains the ordeal of caring for a husband who no longer knows her after 55 years together. Mr. Molloy interrupts occasionally with unrelated comments, mostly incoherent references to the picture book of Ireland in his lap.
Alan had not spent any time with the 80-year-old Mr. Molloy in months. He minimizes eye contact now with this white-haired, bespectacled man , who resembles a college dean on his day off, but who has the mental reasoning of a toddler.
When they shake hands for a goodbye minutes later, Mr. Molloy's arm is limp -- he has no recollection of the gesture's significance. Afterward, Alan, 57, walks the 600 feet up a winding, asphalt driveway back to his own Middlesex, Butler County, home. He pauses at the kitchen door.
"Man, that was kind of chilling," he remarks. "I'm sitting there, listening to him, thinking, 'That will be me.'"
What's ahead is worse
It is the most troubling time of a risk-taking life for Alan Romatowski, a motorcyclist and skydiver who fulfilled a dream of flying commercial planes for a living, only to be grounded by a wretched, unexpected disease for which there is no cure.
A short, blue-eyed man, with the trim features of Johnny Carson, he is alert, physically fit and active. He's well-read, speaks articulately and cracks jokes. He makes deliveries for Meals on Wheels, serving the needs of shut-ins decades older than he.
But he's aware that he is gradually being robbed of all that. He is one of fewer than 10 percent of Alzheimer's patients with the "early-onset" version of the disease. Like older counterparts among an estimated 5.2 million Alzheimer's patients, early-onset victims -- defined as those under 65 -- suffer the same gradual debilitation from relentless growth of plaques and tangles clouding the brain's memory and judgment.
Alan's disease was caught early. He's still in a mild phase, of undetermined length preceding years of moderate to severe symptoms that will eventually erase the traits that make him Alan Romatowski.
Already, he's working a minimum-wage, part-time job at a gas station, instead of flying passengers around the world for US Airways as he did before. He's slow on the cash register, but no one guesses his condition.
He doesn't fit the picture most people have of dementia, either by age or symptoms. His sentences make sense. He doesn't wander. He recognizes everyone.
His most visible symptoms, 14 months after conclusive diagnosis, are losing keys and eyeglasses and forgetting words. He knows a time is ahead when those will be the least of his problems -- and certainly the least of the burdens upon his wife, Josie, and their three children ages 15 to 26.
A diagnosis can be even more devastating to early-onset Alzheimer's victims than it is to those afflicted later in life, says Dr. Oscar Lopez, Alan's neurologist, who is co-director of the University of Pittsburgh's Alzheimer Disease Research Center. "For a person maybe 75 or 76, retired for 10 years, not doing much at home, their living situation could be a buffer," he says, meaning they're not necessarily cheated out of prime years of life.
Alan, meanwhile, has lost a six-figure income he had counted on to support him and his family for years ahead. It's become harder to mentor his teenage son from high school into manhood. He had intended to buy a two-seat plane in retirement, stuff a sleeping bag in the cockpit and fly wherever he wanted, whenever he wanted.
That future is gone, and he prefers not to dwell on what will occur long term. "It's kind of dismal," he acknowledges.
Shorter term, he has a plan. The plan is to be useful.
This year he became one of 14 members of the national Alzheimer's Association Early Stage Advisory Group, helping advise professionals about what it's like to experience the disease. He gives local speeches about Alzheimer's. He proffers ideas on how to help doctors recognize Alzheimer's earlier in their patients. He is enrolled in a University of Pittsburgh study of the disease, will join an experimental drug trial at Pitt and plans to volunteer in the Alzheimer's Association's local office.
"I can't just sit here and deteriorate, you know? I feel like I need to be doing something," he explains one day in the living room of the large, woods-surrounded home in southern Butler County that the Romatowskis moved into in 1991.
They left his wife Josie's native California behind so Alan could fly out of US Airways' Pittsburgh hub. Fifteen years later, it was the airline's rigorous testing requirements that enabled detection of Alan's Alzheimer's much earlier than is normally the case. The early diagnosis bought some time and offered some explanations, but the news was no less stunning.
Josie did not imagine that anyone in his mid-50s would have Alzheimer's, let alone her highly skilled husband.
"That's just a devastating prognosis. I don't think you can wrap your arms around something that is that big," recalls the 56-year-old former flight attendant. "It was like, 'Holy cow, how can this be?' "
A failed check ride
The confusion started in the summer of 2006, 28 years after Alan began flying commercial airliners.
He'd become distracted and forgetful during household projects. He'd neglect to help Josie when her hands were full of packages. But most importantly, his reliability in the cockpit slipped.
No one ever expected flight problems for Alan Romatowski, who began piloting airplanes before he had his motor vehicle license. He grew up in a farming family in East Brunswick, N.J., with a father trained as a private pilot. Flying fulfilled him, starting with a two-seater with a propeller spun by hand. He regularly flew solo when still a teenager.
But a little more than two years ago, he began forgetting radio frequencies he was given by air traffic controllers during flights. His math equations on mid-flight fuel levels didn't add right. He'd joke about his "senior moments" while double-checking vital information with a more junior co-pilot.
Flying a commercial airliner is a complex task that would faze almost anyone, but it had always been a natural gift for Alan, who quit Rutgers University to fly professionally. The planes he flew for Pacific Southwest Airlines and US Airways (which acquired PSA in 1987) would sometimes lose an engine. It never caused a serious problem. He knew how to handle it.
In 1980, a would-be hijacker stuck a gun under his throat on a PSA flight preparing for takeoff at the Stockton, Calif., airport. They were alone for six hours, talking, while a SWAT team gathered on the tarmac. Alan kept himself and his bigger assailant calm until a moment of distraction. A brown belt in karate, Alan snatched the gun from the man's waistband and knocked him across the galley, enabling authorities to capture the man with no harm to plane or person.
This was one cool, professional pilot with a spotless record, verified annually on tests to maintain a license and employment. But in 2006, trying to gain certification to fly the airline's largest, international jets, he failed a series of flight simulation tests, which pilots pass 99 percent of the time. The airline was in a downturn and some of his US Airways colleagues were suffering from stress and depression and taking medical leaves. Alan hadn't, but he was advised by November 2006 to receive a medical evaluation, for a diagnosis and treatment that might preserve his job.
First a psychologist diagnosed him with resolvable anxieties -- due to health problems experienced by his wife and airline cuts affecting pilots' salaries and pensions -- and pronounced him fit to resume flying. But he failed another "check ride," as the tests are called, in February 2007.
Threatened with termination, he saw a neuropsychologist the next month. She gave him tests commonly used to evaluate cognitive functioning. He had trouble drawing cubes. He could not recall words he had been told to remember a few minutes earlier. Counting backward from 100 by 7's flummoxed him.
"I was amazed at how little I could do," Alan says. "It was awful."
The neuropsychologist was the first to mention, in April 2007, that he might have Alzheimer's. That led to a visit to the Memory Disorders Clinic of Pitt's Alzheimer center, where the Romatowskis were told the next month that the disease was not only possible but probable.
More examinations followed. Alan underwent a sophisticated photographic scan analyzing blood flow to the brain. The images were the wrong color, green, indicating dying cells and low circulation in the upper right rear of his brain. His ability to understand spatial relationships and perform equations was most severely affected.
On Sept. 5, 2007, 10 months after Alan's first medical evaluation for his cognitive problems, Dr. Lopez sat him in a room at UPMC Montefiore in Oakland. He told him he was certain Alan had Alzheimer's.
"Well, that sucks," responded the pilot-no-more.
'It's permeated … our lives'
Once a month, Alan meets at the Sewickley Library with a group of other individuals -- all men, by coincidence -- who, like him, are relatively young and in the early stages of dementia. Their six spouses converse in another room while a coordinator for the Alzheimer's Association leads discussion among the men.
One by one, the men discuss how their lives have changed and how they're perceived by others. When Alan's turn came at one recent meeting, he talked about the sense of isolation from his former social contacts.
"With the exception of one or two people, every one of them has dropped off our radar scope," he said of the invitations he and Josie once received to dinners, barbecues and picnics. "At a block party, it's hard to talk to people -- they're dismissive."
He's a man who's always been confident and sociable. You don't fly planes, sky dive, scuba dive and ride motorcycles without some sense of your ability to handle situations. The onetime English major is a good storyteller and joker based on his adventures and wide reading.
Now his self-esteem is waning. His wife is making all of the family's key financial decisions. Son Yuri, 15, impatiently finishes sentences for him when he forgets a word. When his wife's three siblings arrived from California for a recent visit, the noise bothered him -- he retreated upstairs for quiet time. He hesitates to join group conversations.
"I feel like the invisible man," he says.
He recalls seeing a Tom Selleck movie, "Folks," in which an elderly character has only fleeting coherence among his loved ones, little flashes of awareness that disappear as quickly as lightning bugs. "I guess that's what scares me the most," Alan explains, "losing the ability to talk and think and recognize people."
The reasoning ability he retains can work to his detriment. He feels responsible for turning his family's life upside down. His income is less than half of what he received as a pilot, though thanks to his US Airways disability benefits and health insurance, his household is better protected than many others in which a working-age person is struck by Alzheimer's.
The Romatowskis had to refinance their home to cover expenses, and they have mulled selling it. They've made other cutbacks, such as terminating Yuri's gymnastics lessons.
"I'm the one who let everybody down," he says. "I know it's not my fault, I didn't do it on purpose. I can rationalize that all day long, but …"
Josie senses her husband's waning pride. Ever since the diagnosis, he's been pragmatic about switching their possessions entirely into her name and giving her power of attorney for him. But it's created a sense of imbalance that has required adjustment for both. Alan can still quote Hamlet, but he can no longer balance a checkbook.
"I'm beginning to take on a mothering role for him, and that's really strange," Josie says. "I don't think he sees it, but I feel it."
She can't request more than one thing at a time from Alan, because he's likely to forget instructions that are any more detailed. She finds it hard to discuss long-term planning with him. And the topic of Alzheimer's is rarely raised aloud.
"I probably hold back from discussing a lot of things, because I just don't think he's -- I think it's just too painful for him to think about Alzheimer's. He thinks about it in superficial ways, but in a sense, it's permeated every single aspect of our lives."
Alan has no trouble acknowledging his disease to others. He began making public speeches about it in April, when the Alzheimer's Association needed a local spokesman with the disease at a news conference. He gave another presentation in October for hundreds of fellow patients and their relatives attending the Alzheimer's Memory Walk fund raiser at the Pittsburgh Zoo and PPG Aquarium.
He stood at a microphone under a tent, with the crowd chattering at an annoying level as he and others tried to speak. He continued on, a white sheet of paper with facts at his side. He talked about Alzheimer's receiving less government research funding than other diseases. He described his career as a pilot ending.
"Fortunately, I was diagnosed very early," he explained. "I'm going to make it my goal with whatever remaining time I have to combat the disease."
Some people live with Alzheimer's for as long as 20 years after diagnosis, though that's unusual. Alan is counting on eight years, though the course of the disease varies in every individual, and his robust health could enhance his longevity. He also started earlier than many others in taking anti-Alzheimer's medications, which can help stave off symptoms of the disease, though not reverse it.
During an annual evaluation at the Alzheimer Disease Research Center at UPMC Montefiore this month, Alan's performance on cognitive tests showed just a slight drop-off from a year ago. He looked baffled in organizing colored blocks to fit a pattern, but did well on paper tests matching words and symbols.
No one knows why Alan got Alzheimer's so young. In a small fraction of early-onset cases, an Alzheimer's gene is passed directly from parents to children. Alan had no such family background. He's among the majority of cases based on unexplained genetic or environmental factors.
The skill required in his piloting job may, ironically, help him fight the disease even though it's what prompted early diagnosis and ended his career.
"There's a brain reserve there, based on your education and how challenging cognitively your work is," said Dr. Steven DeKosky, a neurologist who headed Pitt's Alzheimer Disease Research Center before becoming dean of the University of Virginia School of Medicine. "If he were doing factory work, it might be easier for the disease to take over him. … He's been in a relatively challenging field with lots of retraining, so he's one of the people who ought to have a significant amount of cognitive reserve."
Alan's abilities won him an invitation to serve on a national Alzheimer's Association advisory panel of 14 patients who converse monthly by conference call, assisting the association's staff in its public education efforts. The panel changes annually, as members commonly experience decline in abilities.
Alan wants to help the association do whatever possible to make more family physicians -- not just Alzheimer's specialists -- aware of potential signs of the disease at all ages. The massive number of baby boomers is expected to swell the ranks of early-onset patients in the near future, and double or triple all cases in the next few decades.
Enjoying what's left
Members of the Romatowski family grow most emotional when talking about the disease's impact on other family members, not themselves.
Son Marek, a Penn State junior in engineering, worries about the weight on his mother, who has already endured more than her share of hardships: a rough first marriage ending in divorce; difficult surgeries for health problems; one stillbirth of a child with Alan and the death of an infant with special disabilities in her first marriage.
Josie's voice breaks, and her eyes well up, when discussing how the disease limits Alan's present and future relationship with Yuri, their computer-oriented, teenage son. But the long-term effects actually will be most traumatizing for her, the primary caregiver. It's not something she focuses on, but she does pray frequently. Brought up by tough Sicilian parents, she tries to remember how caring for the infant son who died strengthened her.
"I tell myself, 'Josie, it is what it is, you go day to day,' " she explains. "If I start thinking about the future, it becomes way too overwhelming. There are times I do that, and it's not very productive. ... When I have my bad days, I feel like my life is over, as much as Alan's life is over."
Alan's strategy is to keep as busy as possible, minimizing his own long-term thoughts. He has confided in quiet moments to a few friends -- motorcycle buddies he took overnight trips with last summer to get away from things -- that his diminished role in the family already wounds him, though he doesn't bring it up around the house.
Instead, he shows up with a smile Friday mornings at the South Butler Community Meals on Wheels program at a church on Route 8, joining a corps of drivers delivering lunches. When other volunteers ask why a reporter and photographer are along, he jokes, "These guys are with me until I drool."
Driving is a concern for him only in his ability to check and follow written directions to get from house to house while behind the wheel. A GPS system helps him sometimes, or another volunteer comes along to navigate. He hopes he's many years away from giving up his keys. He was riding a beloved Harley Davidson motorcycle regularly until a few weeks ago, when it was damaged in a collision with a car.
He had a mild concussion after flipping into the air and landing on his head and helmet. Did the Alzheimer's affect his judgment that afternoon?
"I don't think so," he says. "If my physician said I shouldn't be riding, I wouldn't."
Josie never liked his motorcycles, but he's planning to use his insurance payment to acquire another one. It may be a more conservative bike than the Harley, but offering that same feeling of freedom -- that thrill he once found in a cockpit.
"It's all I have, you know?" Alan said last week, while preparing for an annual ritual of deep-frying the Romatowskis' Thanksgiving turkey. "It's all I have left as far as something I enjoy."
Family members have seen decline elsewhere. Josie bought him a digital watch after he had difficulty interpreting traditional minute and hour hands. He had trouble setting his clock-radio alarm, so Yuri has programmed Alan's cell phone to wake him each morning. He gets up early to make Yuri's lunch for school, but sometimes forgets to put refrigerated items away.
One way Alan and family members deal with such things is simply to joke. When Josie misplaces her own keys, Alan says, "I thought I was the one with the Alzheimer's. What is it, contagious?"
That's the kind of self-awareness that has eluded his neighbor, Mr. Molloy, a long time now. That sense of humor -- and desire to get the message out about the disease -- are the healthiest signs that he's still Alan Romatowski. For how long, neither he nor anyone else knows.