Alan Romatowski still views himself as "almost 100 percent." He says, "The biggest problem I have, and it's the same I had last year, is dealing with math. I don't dare to do the checkbook, but that started two years ago."
Josie Romatowski says, "I just try to deal with things one day at a time."
By Gary Rotstein Pittsburgh Post-Gazette
It was Sept. 21, and 59-year-old Alan Romatowski heard the worst news since the moment three years and 16 days earlier when he was officially diagnosed with Alzheimer's disease.
His doctors at UPMC's Alzheimer Disease Research Center told him that based on his annual evaluation, they no longer felt it was safe for him to drive. They would advise the Pennsylvania Department of Transportation to revoke his license.
Alan recoiled. The former airline pilot from Butler County had been striving to maintain an active lifestyle ever since the unexpected diagnosis of early-onset Alzheimer's cost him his job with US Airways. He was working part time at Costco, driving himself there and to volunteer positions for Meals on Wheels and at a local hospital.
And the longtime adrenaline lover had his motorcycle to ride -- the one thrill in life that the disease had not yet cost him.
Stunned by the doctors' pronouncement terminating his mobility, he bolted from the conference room.
"I was steamed," he says now, recalling the moment clearly. "I was going to blow off the whole program."
For someone with his affliction, his memory function remains strong.
A slowing pace
Alan Romatowski is one of an estimated 5.3 million Americans with Alzheimer's, only 10 percent of whom have it before age 65 like him. He began encountering problems on routine airline checkups of his abilities in his mid-50s.
He was forced in 2007 to stop flying, a skill he'd acquired as a young teen in New Jersey before he even had his driver's license. It was the only livelihood he'd known, and suddenly he, his wife Josie and their three children were faced without the healthy income that had been counted upon into his 60s.
While undeniably devastating, Alzheimer's is not a disease that immediately robs its victims of their functioning. Patients often follow a downward trajectory for five to 10 years from diagnosis -- experiencing memory loss, confusion, loss of daily functioning and even of self-identity -- with the symptoms and rate of decline varying for each individual.
For someone like Alan, with a job that both required an analytic sharpness and regular evaluations of his mental abilities, diagnosis came at an earlier stage than for most patients. Rather than shrink from it, he chose to become a spokesman for the disease.
In addition to sharing his story publicly with the Post-Gazette for the past two years, he has served on an advisory panel of the national Alzheimer's Association and recently completed a one-year term as the first Alzheimer's patient ever on the board of the Greater Pennsylvania Alzheimer's Association. He has made numerous public speaking appearances and lobbied politicians in Harrisburg and Washington for Alzheimer's programs and funding.
The pace of those activities has slowed, however -- even before he turned in his driver's license to PennDOT several weeks after his doctors determined he could not be trusted behind the wheel.
The genial, ever-talkative ex-pilot still holds conversations, but stammers more, forgetting the occasional word. He has trouble tracking days and times. If he receives instructions -- such as his wife's requests around the house -- it's difficult to follow anything but one simple step.
Alan, however, still views himself as "almost 100 percent."
"The biggest problem I have, and it's the same I had last year, is dealing with math. I don't dare to do the checkbook, but that started two years ago."
His confidence in his remaining abilities could be influenced by his own need for self-esteem. Family members have seen more slippage than he concedes in the past year, in a husband and father now hard to trust with household tasks.
He took apart the broken humidifier recently, thinking he could put it back together. It was left to Josie to pick up the pieces. She's used to that by now, or to repeatedly closing the microwave door he leaves open. He washed his own clothes for a while to try to help out, but can no longer handle the steps involved.
And yet, there's been solace -- if small solace -- that Alan's still able to function as well as he does, compared to other Alzheimer's patients. The people who receive food samples from him at Costco or who are wheeled around by him at St. John Specialty Care Center would be hard-pressed to identify his disease, though he's willing to tell anyone about it.
"If you just look at how long it's been since we diagnosed him as having any problems, he's progressing slowly," observed Dr. William Klunk, a psychiatry and neurology professor who is co-director of the Alzheimer Disease Research Center.
Negotiating changing relationships
The strain of Alzheimer's is usually hardest not on patients themselves, but their caregivers.
Josie, 58, is a patient, strong-willed former airline attendant who runs a gift shop on Route 8 near their Middlesex home, with one son preparing to graduate high school and two older children finishing college.
The couple don't deny their marriage has been strained over the past year, as Josie has juggled roles with the added stress of a sometimes-confused husband, in addition now to serving as his chauffeur. He, meanwhile, has sometimes felt ignored by his wife and children, like he's an intrusion in their lives.
"In day-to-day living, it's a lot of small things that add up" to cause frustration for everyone, Josie says. "I figured out that agreeing with everything works best, because a lot of times reasoning doesn't work. To point out he's missing the boat is something that's just not the way to go."
The couple still attend monthly meetings in Sewickley of an Alzheimer's Association support group created several years ago for people in early stages of the disease.
Now that time has passed since they started, Alan and the fellow patients who meet there are speaking less, and have less coherent things to say. Meanwhile, Josie and the other spouses have bigger stories than ever about their loved ones that cause both laughter and tears.
Again, the Romatowskis know from the support group that Alan is better off than the man there who can barely communicate verbally or the one who questions his wife incessantly, or who sometimes can't remember the name or function of basic items.
"It's been a godsend," Josie says of the ability to talk to others who understand her own trials. Other than that, she said, "I just try to deal with things one day at a time. I try not to think too much about the future. ... I'm still worried but I've learned to live with it."
A mistake and a loss
There remains no cure for Alzheimer's, now or in the foreseeable future. Alan takes two Alzheimer's drugs, Razadyne and Namenda, that are supposed to help slow the symptoms of the disease.
Earlier this year, he completed participation in a drug trial of Bapineuzumab, in which he was one of several thousand Alzheimer's patients nationally receiving infusions of either that drug or a placebo -- he doesn't know which.
Some preliminary studies suggested the drug could erase some of the amyloid plaque that is associated with the disease by its infiltration of the brain. Alan is supposed to be given Bapineuzumab in the future as a reward for participating in the drug trial, though it may not be known for years if it's actually effective.
He acknowledges he may be "whistling in the graveyard" in hoping the drug has, or will, do something for him.
He also admits one mistake in the past year: drinking. In riding the 2007 Harley-Davidson Super Glide he bought early this year to replace another bike damaged in a 2009 accident, he would often have a beer or two with friends he rode with.
"I spent a great summer riding that motorcycle all over the place," Alan said, without having any accidents. But alcohol can cloud the brain more for someone with Alzheimer's, which is already rubbing away mental sharpness, than for other people able to sustain normal functioning after moderate consumption.
He'd had alcohol on many days, he says, preceding the Sept. 21 checkup and test at UPMC Montefiore. He handled some aspects of testing fine, but was flummoxed on others, including an assessment of spatial reasoning abilities that involves reproducing drawings of cubes.
Dr. Klunk said that test and other issues led to his physicians' recommendation of license revocation. Last year, they merely recommended that the Department of Motor Vehicles retest his driving skills. He passed that test on the third try.
Dr. Klunk said that for the hundreds of patients evaluated at the ADRC annually, "This is absolutely the most difficult part of our job. ... The first impactful change we run into is the driving issue. We all know what driving means to an American. That's your independence."
After Alan angrily left the meeting when told he shouldn't be driving, Josie followed him out and helped her husband cool off. They returned a few minutes later to discuss Alan's options with the doctors.
In a follow-up phone call, he told Dr. Klunk he believed the recent alcohol had clouded his test performance, that he had quit drinking and that he'd like another try at showing his abilities in hopes of regaining his driving privilege.
"The odds are against Alan," Dr. Klunk said, as most people with Alzheimer's never perform better on a new test than a preceding one. But he said the ex-pilot will get an upcoming chance to prove abstaining from alcohol has helped him.
For now, he's getting rides most places from Josie, who says she also thinks his clarity has improved since his drinking stopped.
Alan remains strong in believing he can help champion the Alzheimer's cause. He's on a regional council of the Alzheimer's Association that meets quarterly. He was also profiled in a training video a private company developed for training of long-term care staff.
And in chance encounters like those at Costco where someone might mention their own forgetfulness -- joking that they must have Alzheimer's -- Alan volunteers that he has it himself, and if they're serious, there are ways of getting help.
"That's how I'm still fighting the disease," he says. "I'm going to live my life to the fullest as best I can."