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As dementia symptoms increase, doctor living with Alzheimer's knows exactly what his future holds

UPDATE: In the days since this story was published, readers have responded to the portrayal of Dr. David Kramer by sharing the struggles their afflicted family members face. They also commented on the difficulty for society and the plan Dr. Kramer has for the end stage of his disease:

"Obviously this family has resources. But it makes you think of the thousands if not millions of baby boomers without resources who are dealing with this or who will be dealing with [it] soon." tish729

"I can plan now … but by the time the symptom appears I will not have the mental ability to remember to follow through with my planned response. I understand trying to train 'muscle memory' – so smart." ted teger

Join the conversation by adding your thoughts in the comment section below or at our Facebook page.

Our original story, first published online Oct. 1, follows:

———

The doctor waited in the emergency room for the crush of patients to come.

A mile away, a nail-laden bomb had splintered the summer night, wounding more than 100 people in Atlanta's Centennial Olympic Park.

Dr. David Kramer was the senior attending physician at Grady Memorial Hospital that July night in 1996, the man responsible for the dozens and dozens of patients wheeled through its doors.

As if on autopilot, he choreographed the disaster plan he'd helped create, dispatching residents and treating the wounded. Adrenaline kept him sharp as the night rushed into day.

"That was his element," said Dr. Jude Malican, then medical director of Grady's emergency care center. "He was very quick to make decisions. He knew what needed to be done."

Kramer gave a vivid account to the Atlanta Journal-Constitution the next day.

"In my mind's eye," he said, "I have this vision of this continuous train of ambulances pulling up to the emergency care center, and more and more patients coming and coming. The imagery is pretty intense."

Two decades later, at his home in Naples, Kramer can recall that he played a crucial role.

But at age 59, the imagery — sirens and broken bones, shrapnel wounds and swarm of patients — evades his grasp.

• • •

Not long after the bombing, Kramer noticed a poised young woman in the hospital cafeteria getting her grandfather a hamburger. Their first date was a four-hour phone call.

Kramer found Tiffany — a dancer who had performed in the opening ceremony at the Atlanta Olympics — smart, self-confident and beautiful.

Tiffany found in Kramer the first man who really listened to her.

"He would remember everyone's name, every incident," she said. "He would ask as if it were a book, 'What happens in the next chapter?' "

They married six months later, the 16-year age gap never an issue.

"I'll live the end of my life by myself," Tiffany said, "but why would I give up everything in between?"

"I've been optimistic ever since I met her," he said.

Kramer grew up in Brooklyn, N.Y., the son of a physician. At Oberlin College in the mid 1970s, he realized he could bring the worlds of teaching and medicine together.

After Kramer and Tiffany married, they moved to York, Pa. There at WellSpan York Hospital he ran the emergency medicine residency program, the position he had held at Emory University in Atlanta.

He taught residents how to treat everything from minor scrapes to gunshot wounds and how to guide families through unimaginable pain.

WATCH THE VIDEO: Living with Alzheimer's

"He was a great motivator and able to get people to understand the big picture and get them moving in the right direction," said Dr. Michael Bohrn, once a resident under Kramer and now his successor in York.

The perfectionist in Kramer loved the pressure of his work, the weight of the stress. He revamped York's program and joined the board of directors of the American Board of Emergency Medicine.

The Kramers' children — Nicholas, a Cornell University graduate at 18, and Taylor, a ballet dancer like her mother — remember their dad during those years as a disciplined do-gooder, a tightly wound jokester who scheduled their vacations: beach time at 3 p.m., ice cream at 5.

One night, on a walk, Kramer confessed something was troubling him.

"Honey, something just isn't right," he told his wife. "I'm really struggling to remember things."

• • •

First it was mild lapses after his 50th birthday — conversations unraveling as he lost the words, the maddening feeling of drawing a blank again and again.

Flurries of yellow sticky notes gathered on his computer.

"What room was that patient in?" he'd ask. "What was her name?"

At home, Kramer heard a recurring refrain: "Dad, I already told you that."

Study nights went later, lecture preparations grew longer, the lessons of a new ultrasound course disintegrated as quickly as they came.

Once, he'd been able to juggle four or five patients at a time.

"And all of a sudden I was saying, 'Hold on a minute. Two is what I'm going to take,' " he said. "I just wasn't able to keep it all in my head."

Tiffany initially brushed off her husband's concerns. He was probably just overworked.

But Kramer's anxiety mounted. He began to worry about a future without his job, the outline for so much of his identity.

And the lapses were spilling into his home life: a car breakdown he couldn't manage, a habit of asking Tiffany if familiar dresses were new. When his family told stories, it was like he was opening a book at random and finding all the characters were strangers.

To most everyone else, he seemed sharp as ever.

"Looking back, I could say I did notice something there, but it was never major gaps," said Bohrn, his York colleague. "It was really this insidious type of thing that snuck up."

• • •

Kramer left one doctor's visit near tears, the lack of a clear answer to the problem wearing him down.

He began to see specialists at 54. A neurology colleague said he didn't see a problem, and another specialist told Kramer he was too young to have dementia. A battery of tests — blood work, a CT scan, an EEG — showed nothing. Kramer asked if he could keep working and was told he could.

Then his scores on a brain-function test came back average.

"I was upset and tried to explain to (the doctor) that this was proof I was having a problem," Kramer later wrote online. "I told him I was never 'average.' "

On the ride home from the appointment, Tiffany teased him for trying to convince the doctor of his intellect. But Kramer felt only desperation. No one seemed to share his urgency.

For Nicholas, then in his late teens, it was becoming harder to ignore that their usual witty banter was dissolving. On a cruise, he tried to explain a card game and watched as his father failed to understand its rules.

Distraught, Nicholas pulled his mom aside.

"I can't believe that's my dad," he said. "That's the guy I could never beat at chess."

Tiffany, too, had grown concerned. It felt like Kramer wasn't listening to her anymore. He seemed distracted, far away.

Kramer took another brain-function test a year after the first. This time it showed significant decline in all areas. A neurologist ordered a scan for functional evidence of Alzheimer's.

When the Kramers walked into his office, they knew the results from the neurologist's demeanor. The part of Kramer's brain that handles new memories was shrinking. At 56, he was diagnosed with early-onset Alzheimer's disease.

There was a moment of validation, then the blow of reality.

Kramer had seen what his father endured at the end. His dad had been an obstetrician-gynecologist. He was never diagnosed with dementia but clearly had been afflicted, though later in life. He forgot Dave's name and talked to people in the refrigerator. He woke in the night, saying he had to deliver a baby, though he hadn't worked in 30 years. In the end, he would sob and beg his son: "Just kill me."

Kramer and Tiffany rode home from the doctor's office in near silence.

• • •

At the York hospital, Kramer called an all-staff meeting, commanding the room one last time.

"It was definitely very hard to see," Bohrn said. "It's almost like sports figures. You see a world champion, and then they can't use their legs. It's something like that."

Surrounded by wet-cheeked residents and staff, Kramer shared his diagnosis, how he knew it was his duty to retire from patient care immediately. A mistake would be inexcusable.

"He doesn't turn red very often, but he was red during that speech," Bohrn said.

Without work, Kramer lingered at home for weeks, sitting in the same chair for hours on end. Tiffany watched him wallow in his sorrow, his life in limbo.

She wasn't ready to be alone this soon.

"I'm already being cheated out of time with you, so snap out of it," she finally erupted. "That was that life. Let's just start a new life."

They had bought a little bungalow in North Naples a few years before, a retirement dream in a sun-splashed city where they loved to vacation.

"What the hell are we doing in Pennsylvania?" Tiffany asked.

Instantly, Kramer snapped out of his inertia. With his retirement had come Phase 1 of his personal disaster plan. It was time for the rest.

• • •

Most mornings, the Kramers walk five or six miles along the white-sugar sand as the sun rises. They sip coffee and read the Naples Daily News on the balcony of their beach club, lazy fans whirring overhead.

In the summer, when the snowbirds have vacated the leafy suburbs, Kramer and Tiffany, 43, ride bikes through the sinuous streets. Often they stop for ice cream: Häagen-Dazs Belgian Chocolate Chocolate.

Kramer used to work holidays, write emails on weekends, plan for each coming week.

"He really had to learn to live his life after his diagnosis," Tiffany says.

As Alzheimer's progresses, there's chronic memory loss and trouble registering new information, said Dr. William Justiz, a neurologist who sits with Kramer on the board of an Alzheimer's support group.

There's the loss of ability to plan your day, to remember the sequence of events that begins with putting the key in the ignition and guiding the car out of the garage.

So for Kramer, there is no average day, no meticulous schedule.

"Everything is positive, but not everything is perfect," he says. "Overall, I'm trying to take the road that we're going to get the most out of life and enjoy the hell out of it."

Numbers vary, but most people have about five years from diagnosis to advanced disease or death, Justiz said.

Kramer says he's on the 20-year plan.

He and Tiffany have visited the Panama Canal and gone behind the scenes at Disney World. They've hiked and sung along to Shania Twain. But in terms of bucket list items, Kramer's wants are simple: time with his family.

"When people get a cancer diagnosis, they're often at the end," Tiffany said. "Though we know what scary things are coming up, we're right at the beginning. I think we have a honeymoon period where we can just enjoy life."

But they know that one of the crueler aspects of Alzheimer's is that it eventually erases the ability to recognize one's disease.

"Kramer is fortunate in that he realizes that 'I have a problem, and I buy it, and my clock is ticking, so let's go nuts, let's go skydiving, let's go to the Grand Canyon, let's go watch a sunset,' " Justiz said. "The clock is ticking for all of us — for me, for you, not just Dr. Kramer."

• • •

In a hushed room with pastel green walls, a white-haired woman asks: "Does the Alzheimer's patient feel pain for the last year or so?"

This August afternoon, the couples seated at the long table turn to Kramer, with Tiffany. He pauses, then begins in a diplomatic manner.

"For me, it's not about pain," he says. "It's about quality of life."

Today's topic at the Alzheimer's Support Network early-stage group meeting is a difficult one: end-of-life planning.

"These tend to be very real conversations that are filled with both joy and profound sadness," said Clarke Pollard, executive director of the network. "The discussion will be, 'This will probably be the last trip we take to Brazil, or to Seattle, because it's getting harder.' "

Alzheimer's disease affects about 5.3 million Americans. There is no way to prevent it, no cure for it and no way to slow its progress.

Kramer falls among the roughly 4 percent with the disease who are younger than 65. Among the support network members at the table, Kramer is younger than most.

He and Tiffany began coming to meetings a year after moving to Naples. Kramer didn't go in with the intention of becoming a leader, or a board member, but it didn't take long for him to garner respect. As other members turned to him for guidance, that familiar feeling of esteem returned, one he didn't realize he had missed.

In many ways, the scrupulous physician inside Kramer has softened. He cries more easily, drives more passively, forgives more quickly.

But he faces the future like the doctor he is. Matter-of-fact. Self-aware. Even clinical.

He understands the erosion to come, fears that the breakdown of his mind and body will become a burden to his wife.

"You can't feed yourself, you can't take care of your bowels and bladder, you can't bathe yourself, you can't do anything," Kramer tells the room. "That kind of dependency upon others without being able to enjoy what makes us human, to me, takes away the quality of life.

"I don't want to live that way," he says.

What he wants is the option to end his life when he believes the time has come, he says, despite realizing how difficult it will be to know the right moment.

A few members nod. One woman, whose husband has the disease, begins to cry.

"I think you're very brave," Christine Kriss says. "But I feel for your wife, too, because I'm in that position. But you deserve to live your life."

As the afternoon wanes, Tiffany suggests a lighter topic next time: what unexpected benefits there are in the midst of such sorrow.

• • •

Flip-flops are flung about at every entrance to the Kramers' home. Inside, spotless countertops and tile floors give it a model-home feel, tidy and cool.

At first, Taylor refused to acknowledge her dad's condition. Now 17, she has a deepened respect for his commitment to optimism. Nicholas, 21, doesn't like to think about what's ahead.

"I'm constantly, continuously losing my dad now," he said. "There's going to be a date when he's alive and he's not my dad anymore."

Alzheimer's symptoms include the waning of complex language and the inability to recognize things such as a favorite Publix, a familiar front door and, eventually, one's spouse.

"You lose the ability to do everything, in the very end," said Justiz, the neurologist on the board of Kramer's support group. "Think about what you knew as a newborn baby. That's what Alzheimer's will take you down to. It will make you just like a newborn baby."

Kramer still drives sometimes, but the maps come undone in his mind. More and more, Tiffany has become his "accessory brain," his calendar-keeper and guide.

If a conversation splits into multiple threads, Kramer often can't find his way back to the original topic.

"What was I saying?" he'll ask. With a few subtle words, Tiffany will return him to the page he has lost.

What upsets Tiffany the most is the loss of the friendship she and her husband have, like someone wrote down their history, then erased whole parts, only she doesn't know which ones.

Kramer reads thrillers these days, their characters interchangeable. He finds that he has to go further and further back in a book each time he picks it up.

He forgets to drink his coffee while it's hot. He forgets where to find the forks.

"You have no idea how frustrating this is," he said, hands trembling.

Kramer estimates that he's straddling mild to moderate stages of the disease. His dreams, splashy and vivid, confuse him in the instant of waking, and he wonders what was real.

Humor has become a way to cope, as it was in the emergency room. He tries to shrug off the vocabulary flubs ("That's the ice cream on the cake!") and the memories just out of reach. He'd rather laugh about "Alzheimer's Mad Libs" and getting to enjoy the same new things over and over.

On his Facebook page, Living Well with Alzheimer's, Kramer catalogues the complexity of his changing life.

"I am at times embarrassed, but am getting used to the 'I am what I am feeling,' " he wrote in June 2014. "I'm starting to enjoy the tricks my brain plays on me. I laugh at myself rather than cry. It is what it is."

He has been working to commit his "activities of daily living" to muscle memory, a road map for his uncertain future. In the shower, he washes himself in the same order every time, brushes his teeth the same way. When he flosses, each tooth has its turn.

He hopes the motions will return to him even when his mind has mostly gone.

Times researcher Caryn Baird contributed to this report. Contact Claire McNeill at [email protected] or (727) 893-8321. Follow @clairemcneill.

Symptoms of Alzheimer's disease versus what's typical

A definitive Alzheimer's diagnosis can be made only via autopsy. If you think you or someone you know may have Alzheimer's, here's a guide for assessing behavior.

• Disruptive memory loss. Forgetting new information or important dates, relying on memory aids, asking the same thing over and over.

Typical: Forgetting a name but remembering it later.

• Challenges in planning or solving problems. Trouble following an old recipe or keeping track of bills.

Typical: A few mistakes when balancing a checkbook.

• Difficulty completing familiar tasks. Struggling to remember the rules of a favorite game or directions to the mall.

Typical: Age-related changes such as needing help with the DVR.

• Confusion with time or place. Losing track of seasons, having trouble planning ahead. Forgetting how you got somewhere.

Typical: Forgetting it's Sunday but figuring it out later.

• New problems while speaking or writing. Trouble following a conversation or using the right words, repeating yourself.

Typical: Searching for a word from time to time.

• Losing the ability to retrace steps and find a misplaced item.

Typical: Misplacing something temporarily but remembering where it is later.

• Poor judgment, such as ill-advised money decisions, and withdrawal from work or social activities.

Typical: The occasional bad decision or feeling tired of social obligations.

Source: Alzheimer's Association

Dr. David Kramer's Web page

>Alzheimer's Association Florida Gulf Coast chapter>

As dementia symptoms increase, doctor living with Alzheimer's knows exactly what his future holds 10/08/15 [Last modified: Thursday, October 8, 2015 7:59am]
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