Alzheimer's: Experimental drug offers new hope for patients
A life hijacked: One year later
November 29, 2009 3:00 PM
Josie and Alan Romatowski return to UPMC Montefiore hospital for more tests and interviews. Alan was diagnosed with early-onset Alzheimer's disease in 2007.
By Gary Rotstein Pittsburgh Post-Gazette
The fluid flowing into Alan Romatowski's left arm for an hour could be a magical solution stopping his Alzheimer's disease in its tracks or a drug that fails to live up to its promise or even a placebo without any chance of helping him.
Neither the 58-year-old former airline pilot nor anyone else in the room -- his wife, his doctor or the clinical coordinator of UPMC's Alzheimer Disease Research Center -- knows what he's getting as one of several thousand participants in a national study.
But Alan, one of the 10 percent of Alzheimer's patients afflicted with the early-onset version of the disease before age 65, is hopeful. On a November morning, three years after showing dementia symptoms and two years after a devastating Alzheimer's diagnosis, he has done well on a periodic test of his mental abilities.
A Life Hijacked: Pt. IV
Two years after being diagnosed with early-onset Alzheimer's disease, Alan Romatowski returns to the hospital for more tests and interviews. (Video by Steve Mellon; 2009)
On this day, he's not forgetting words in midsentence. He doesn't feel confused about anything. Alan insightfully answers questions posed by his neurologist, Dr. Oscar Lopez, about what might be happening to the Alzheimer's-related amyloid plaque infiltrating his brain if he's indeed receiving bapineuzumab instead of a phony clinical-trial substitute. The tongue-twister of a drug is among the most promising -- though not yet proven -- counters to the disease.
He's like the old Alan Romatowski, who was so poised as a jetliner captain that he once coolly disarmed a hijacker when they were alone on a plane during the man's standoff with police.
"On a day like today, I'm sure I'm getting the drug," Alan says while briefly reclined in a hospital bed for a quarterly intravenous infusion. "I might be whistling in the graveyard, but I feel a lot more engaged."
The short, white-haired man uses that graveyard-whistling phrase a lot, but he shows no signs of being at death's door, or even at the end of his productive years. In some ways, he's never felt more useful and alive.
That's on his good days.
If only they were all that good.
A man on a mission
It's been a year since Alan was profiled in the Pittsburgh Post-Gazette as a local public face of Alzheimer's disease, which robs as many as 5.3 million Americans of memory, decision-making and other mental abilities to varying degrees. Most people are diagnosed when they are retired and already in their twilight years.
Alan's diagnosis came earlier, at age 56. The extensive testing he had to undergo as a US Airways pilot identified faulty brain functioning, such as difficulty computing numbers. He lost his job and went on disability.
Still articulate and outgoing, the resident of Middlesex, Butler County, recently completed a year of service on the national Alzheimer's Association Early Stage Advisory Group, made up of people like himself in the mild stage of the disease.
Now a board member of the Greater Pennsylvania Alzheimer's Association, Alan has made speaking appearances in Pittsburgh, Erie and Wilkes-Barre in the past year to discuss the impact of the disease on him. He has met with federal and state lawmakers.
He testified this month in Harrisburg, with his wife Josie, before the House Aging and Older Adult Services Committee.
Though sometimes losing his place while reading, he told the legislators: "While it seems so much has been taken away, I have had my eyes opened to so many things that I had taken for granted. But that is tempered by the guilt of my inability to be a breadwinner, the knowledge that in a short time I will become a burden and the fact that I will eventually leave my family far too soon."
Alan delivers to Meals on Wheels shut-ins in Butler County. He escorts nursing home residents to physical therapy as a volunteer at St. John Specialty Care Center at Mars. He has a part-time job preparing food samples at Costco in Cranberry.
This is not the dreaded portrait of Alzheimer's that most visibly accompanies the disease -- the lost souls wandering away from home, the dazed minds unable to recognize loved ones. People are not immediately robbed of all capabilities.
"He is a gentleman with a heart of gold," says Ruth Pfeifer, St. John's volunteer coordinator, whom Alan told about his diagnosis when offering to volunteer there. "Not only does he escort, but he has made friends with all of these people here. He makes them laugh, he makes them want to get out of their room to come to therapy."
The course of the disease can be slower in someone like Alan, who was diagnosed early because of his profession and started out with a high intellect that may take longer to erode. On his mission to raise Alzheimer's awareness with whatever years of competency remain, he is trying to prove that people in his shoes still can be productive -- even if they can't be trusted to fly a plane.
Dr. Lopez, the head of the Alzheimer Disease Research Center and the one who delivered Alan's diagnosis in September 2007, explains during the infusion how much better off patients are than in past decades. Alan is taking daily doses of two modern medications, Razadyne and Namenda, which are supposed to delay the disease's symptoms, though they don't cure it.
"In the old days, it was not uncommon to see people progress rapidly," says Dr. Lopez, a neurologist. "Now we see many people like Alan, who might plateau for two to three years."
In a separate interview, Josie Romatowski agrees about her husband of 21 years: "I thought there would be more decline in the past year."
But in the past month or two, she's been unsettled by changes. More and more, the reminders arise of the difficulties ahead for her and their three children.
At the same time Alan was breezing through a verbal and written test of his memory at the Alzheimer Disease Research Center, Josie was in a different room confiding her recent concerns to clinical coordinator Lori Macedonia.
Her husband can't reliably perform simple household chores, such as preparing a meal or washing dishes. Handling phone calls is sometimes a challenge. He increasingly stumbles for words. Participating in major household decisions is out of the question because he can't analyze consequences.
"It's to be expected," Ms. Macedonia says of the recent decline, while noting it's impossible to predict what traits are most affected and how quickly because the disease is so singular in how it affects each individual.
People who encounter Alan in casual ways would have a hard time guessing that this affable, talkative fellow has already started serving a life sentence of mental decline, ranging in span from a few more years to as long as two decades.
It's different when you live with him every day.
His stepdaughter, Katie Jarmin, 27, a college student who lives in their woods-surrounded, modern home along with the couple's younger son, 16, is protective of Alan but no longer surprised by his mistakes. When she leaves the house in the evening or on the weekend, he makes comments assuming she's headed out to class, though she's on a regular weekday schedule.
"A lot of associations that should come naturally aren't there," Ms. Jarmin says. "I know he realizes the disease is progressing, but I don't think he realizes how much."
While focused on his "clear" days, which he believes are the majority, Alan acknowledges he has cloudy ones that are troubling for both him and others.
"My short-term memory is less than adequate. I'll have to look for my wallet three times. I'll look for my car keys three times ... It's frustrating. I become irritated. Josie bears the brunt of it."
Apologetic on the one hand about how his condition might affect his family, he also makes clear how tough it is to hear his wife repeat instructions to him, each time sounding increasingly like she's addressing a 5-year-old.
"I get upset and I shouldn't," he admits.
The disease poses a strain for both Alan and Josie, which they deal with by attending monthly support group meetings sponsored by the Alzheimer's Association. In separate rooms there, they bare their troubles to others experiencing the same.
Talking of the wives there, all with spouses still with mild symptoms like Alan's, Josie relates, "I think what's frightening us most is our husbands are still relatively well, and if it's this difficult when they're still relatively well, gosh, what's it going to be like later?"
'I'm still me'
A big day is coming soon, one that is most dreaded in many Alzheimer's households. It is the day of a driver's recertification test.
When Alan showed too many cognitive troubles at a prior Alzheimer Disease Research Center test, the staff felt compelled to notify the state Department of Transportation that his driving abilities should be retested. PennDOT's letter reached the home two weeks ago. The exam will take place in December.
For an active, adventurous man who has been a motorcyclist, scuba diver and skydiver in addition to a pilot, it would be difficult to imagine anything worse than being stripped of the keys to his pickup truck.
"It's his independence, and I think [it would be] the realization that something really is wrong," Josie says. "He's still functional, still does things he really likes to do. That loss of license would mean, 'Yes, you really are affected.' "
In recent months, Alan has suffered two injuries. While rock climbing with friends, he cracked a rib in a fall. More recently, he was riding his motorcycle, slid on a hard turn and separated his shoulder.
He doesn't attribute either injury to his Alzheimer's, but Josie is glad that the onset of winter and the repairs needed on the motorcycle have shelved that activity, at least until spring.
Alan can't fathom failure on the driving test. His part-time job and other activities would be hard to continue without driving himself around their section of southern Butler County, where Josie runs a gift shop day to day.
He still has much that he takes pride in. In the Romatowski household, not much is discussed about Alzheimer's directly. When family members gather to watch Discovery Channel's trivia show "Cash Cab," as they often do, he still surpasses everyone with correct answers.
But Josie describes the disease as "like a cloud that hangs over the family that you don't ever get out from -- it's always there."
At the same time, she credits her husband for doing so much community work and advocacy with the disease instead of sitting at home.
Bob LeRoy, president of the Greater Pennsylvania Alzheimer's Association chapter, says that Alan, as the group's only board appointee with the disease, has been both perceptive and inspiring for the other members.
"He can tell his story -- our story -- in a particularly compelling way," Mr. LeRoy says, noting there were tears in the room when Alan testified about Alzheimer's for the House committee.
Alan is not one to shed tears himself. He is usually smiling, at least in public, and particularly when he feels like his old self instead of the uncertain, tired man he knows he can be on bad days.
Part of his effort to effectively use his remaining time is participating in the bapineuzumab trial, which is taking place at some 200 sites around the country. The research, recently taken over by a subsidiary of Johnson & Johnson, could be groundbreaking. Some early results suggested it might actually undo Alzheimer's damage, instead of just slow it.
Of all the Alzheimer's-related research Pitt is involved in, Dr. Lopez says, "This is the most important. This is No. 1."
Alan is realistic enough to know that if he's getting the drug, it's more of future value for the study than "an overnight breakthrough that's going to be a lifesaver for me."
Bapineuzumab-infused or not, he's still planning to spend months or years volunteering for the community -- something he never did when he was a pilot -- and speaking about the disease.
He was contacted by numerous people after his story was publicized last year, including families with their own early-onset diagnosis. He talks to them sympathetically and musters that same optimism he summons when speaking to politicians.
"The big point I make is I'm still here. I'm still me. And I can still advocate."