Alzheimer's at 57: 'It's the subtle things'
Read the original story at courierpostonline.com.
Carly Q. Romalino, Courier-Post
Phil Gutis, a former New York Times reporter and American Civil Liberties Union spokesman, felt like taking an ax to his desk.
He couldn't find a small strip of paper. It was there. Somewhere. He knew it. The frustration of an unfocused search was enraging.
Like an incident days before, when he brought the dog leash to his bedroom instead of his socks, Alzheimer's intervened, making a simple task seem overwhelming and nearly impossible for the 57-year-old.
"It's the subtle things," Gutis said.
"I definitely feel like I struggle more than I did a year ago."
Early onset Alzheimer's Disease — an aggressive form of dementia — is the reason he's leaving his job — a job he loved dearly — in January.
Alzheimer's is the reason he faces depression realizing the cognitive skills he's quickly losing.
The disease is the reason he's dragging his husband Tim Weaver along to Alzheimer's Association events, where Gutis speaks about his experience while he still can.
"That's me. I'm an advocate at my core," said Gutis, the association's national Early Stage adviser.
"I went from being a guy who managed tons of people and knew what everyone was doing ... to being unable to complete a small project on my own."
He remembers memory issues back to his 20s. At about 53, simple math, like calculating the waiter's tip at dinner or comprehending driving directions, were increasingly difficult, if not impossible.
"It was almost like speaking Greek to me," Gutis explained.
"I started complaining, 'God, there's something wrong with me.' I don't remember when it crossed my mind it could be Alzheimer's."
Gutis doesn't fit the dementia stereotype. He's a former marathon runner, finishing 14½ 26-mile races in his lifetime. Plus, he's not 80.
Changes in behavior brought on by cognitive changes are key signs of dementia at any age, according to Dr. David Libon, a neuropsychologist and professor of geriatric gerontology at Rowan University's School of Osteopathic Medicine in Stratford.
"Most people assume dementia means memory," Libon said. "It's more complex than that."
Subtle hints often manifest in impairments in everyday complex activities, he noted.
The doctor often asks prospective Alzheimer's patients and their families: Is the checkbook balanced? Are there odd purchases? Is medication managed? Are there changes in eating habits, willingness and capacity to prepare food?
"If somebody does something outlying once, you don't need to pick up the phone," Libon said.
"If this starts to become something frequent, unusual and very atypical, it would probably be a good thing to get a consultation."
For decades, Libon's patients at the Stratford medical school's Institute of Successful Aging were in their late 70s and early 80s when family finally noticed their inability to complete daily tasks.
In the last 10 to 15 years, the average age cognitive issues are first recognized has become younger, he said. And it's not a 50-50 split on how the cognitive issues are recognized. A decade ago, older patients were almost always brought in by worried family members. Now, Libon said, about 50 percent of his patients are "self-referring," or recognizing changes in themselves and scheduling evaluations.
"People are more aware," Libon said.
The basics of Alzheimer's and dementia have "filtered into the popular culture," he noted.
"A lot of patients I'm seeing now were born after World War II," the doctor explained. "These patients presenting to me at the clinic younger are more formally educated."
Gutis, while educated, never guessed four years ago that his trouble finding slips of paper on his desk or tipping his server was an early indicator of Alzheimer's.
In fact, the Bucks County, Pennsylvania, man didn't discover his diagnosis in a doctor's office.
He was notified in an email.
Typically, someone suspected of a dementia diagnosis would see their primary doctor first. Then be referred to Libon. The neuropsychologist would perform an exam, flanked in his Stratford office by two more professionals — a social worker and a psychiatrist.
"We get together and as a team we look at them and devise a treatment plan," Libon said.
Libon would order an MRI and look over the results of the brain scan. He's "looking for nothing" on the scan, in order to rule out tumors as the cause of cognitive changes. In Alzheimer's cases, however, the brain shrinks, he explained.
The next step is a three-hour neuro-psychological exam. It's part full medical and family medical history, and part cognitive test. Libon's potential patients are directed to draw the face of a clock with the hands of the clock set at a specific time. Often, they're shown several items and later asked to recall what those items are.
Gutis' exam was similar. He had the MRI. He remembers taking a drawing test and "failing miserably."
When he began noticing major memory failures in his early 50s, his sister spotted a drug trial looking for symptoms similar to what her brother experienced. He filled out an online application, and made it to the phone interview round. He was a candidate for an in-person exam, the RBANs, or Repeatable Battery for the Assessment of Neuropsychological Status. It helps doctors detect Alzheimer's.
"You need an 85 or less to proceed on," Gutis said.
By proceeding on, he means admission to the drug trial. Admission means he has Alzheimer's.
He scored 71.
His husband remembers the day the drug trial news was delivered to Gutis' email inbox.
"It's congratulatory from them," Weaver explained.
"'Congrats! You're in the Biogen study.' The down side is you have early-stage Alzheimer's."
Weaver drove 100 miles an hour through New Hope to reach Gutis, after receiving his husband's tearful call about the emailed news.
"We're planning for the future. I promised him, hell or high water, I'm going to keep him home," Weaver said.
Through Gutis' advocacy for Alzheimer's awareness and research, he's met others "very angry" with their diagnosis. He's been angry, too.
"Crying is part of dealing with it. It's awful news," Gutis said, although he is at peace with the diagnosis in some ways.
He's "had a good run," he said flippantly.
"Even though I'm on this drug trial, my gut tells me they're not going to have a cure in time to save me," he said.
Gutis has experienced some progress since he started on the drug. In drug trial testing, the same test he failed miserably, he's breezed through recently.
"It's important to engage your brain, but to understand something awful is happening and not to push yourself," he said.
When you want to take an ax to your desk, stop. Take a breath. Look for the scrap of paper again later.
Carly Q. Romalino; (856) 486-2476; firstname.lastname@example.org