Alzheimer’s at 39

Early-onset Alzheimer’s disease affects people under the age of 65, and Michael Ellenbogen started showing signs at just 39 years old. Since his diagnosis, he has dedicated his life to spreading the word about his disease and pushing for a cure

Michael Ellenbogen was 39 when he first started forgetting little things—acronyms related to his business, work meetings and phone numbers.

“I was always very good in the sense that I could remember everything,” Ellenbogen said. “I didn’t have to write anything down. I would just remember it. And then I started forgetting the names of my employees. I even started to stutter trying to say my own name.”

In the beginning, Ellenbogen’s wife Shari said she wasn’t overly concerned. “When he kept saying he was forgetting things, I would say, ‘Oh, I forget things, too,’” said Shari Ellenbogen, a nurse at Doylestown Hospital in Pennsylvania. She believed it was simply a natural consequence of growing older.

However, over time, Ellenbogen’s forgetfulness became troubling enough to schedule appointments with his doctor. But once he was there, he couldn’t remember what his problems were.

“Since I didn’t remember what was wrong, the doctors would say, ‘Well then there can’t be anything wrong,’” Ellenbogen said. “They didn’t get it.”

It took 10 years for Ellenbogen to be diagnosed with early onset Alzheimer’s disease at age 49.

“I think at my age, [doctors] don’t want to label us with Alzheimer’s,” Ellenbogen said. “They kept trying to tell me I was stressed or depressed—everything but what my real problem was.”

Frustrated, Ellenbogen abandoned his pursuit of a diagnosis. But his symptoms worsened over the years, prompting him to finally seek out a new doctor.

“I went to a few psychologists, and one of them asked, ‘Did you ever think of Alzheimer’s?’” Ellenbogen said. “My wife said no, and the psychologist said that could be it.”

A subsequent MRI scan came back normal, but Shari Ellenbogen asked the doctors to do a PET scan as well. The PET scan came back positive for Alzheimer’s.

“I went on the Internet and researched [early onset AD] after the psychologist suggested it,” Shari Ellenbogen said. “It’s very hard to diagnose, and a lot of people get frustrated—they’re told they’re depressed. Some of the symptoms sounded familiar. The doctor agreed to run it, and it came back fairly characteristic of early onset AD.”

“If it wasn’t for my wife, I don’t know if I would have a diagnosis today,” Ellenbogen added.

Life before Alzheimer’s

“Oh my God, I loved my life,” Ellenbogen said, about the years preceding his disease. “I was the go-to person at my job. I was working for a major bank [in the IT field], and it was so great to know people counted on you. I could get anything done.”

Before receiving an official diagnosis, Ellenbogen was fired from his job because his position required mental processing capacity he no longer had. Making matters worse, Ellenbogen could not collect the disability insurance he had signed up for with his company, because it took longer than two years after his termination for doctors to discover the Alzheimer’s.

“Now, I’m a burden to the system because I’m living off social security,” Ellenbogen said. “Fortunately, we had money set aside, but I know other people who lost everything. They don’t have a penny because they were wrongfully terminated due to a disease they couldn’t tell anybody they had. They weren’t diagnosed in time.”

After losing his job, Ellenbogen tried to take on new hobbies, like golf, but found tracking the ball’s path through the air was too challenging.

“I can’t follow the ball,” Ellenbogen said. “If I see where the ball falls, I can find it. If I turn around for a split second to get my clubs, I forget where the ball is at.”

“He struggles every day,” Shari Ellenbogen added. “He needs a lot of help with things. He has to move at his own pace, and he can’t multitask. I’ve taken over the financials because we figured out a couple years ago he was paying off the wrong credit card.”

The prognosis for people who develop early onset Alzheimer’s disease is the same for people who develop it in advanced ages. The average time frame for survival is four to eight years, though some—like Ellenbogen—can live much longer.

“I’m one of the lucky ones, if you can say that,” Ellenbogen said. “I’ve known I had something wrong with me since I was 39, but I’m still able to speak, and I can write—poorly. I’m ashamed of it, but it doesn’t stop me.”

The clinical trial

Ellenbogen is currently in a trial for an experimental drug to treat the disease. The trial is led by Dr. David Weisman, a neurologist at Abington Memorial Hospital in Philadelphia, Penn.

“We started working with Michael in December 2011,” Weisman said. “He’s in a rare group— in your 50s, it’s very unusual to have Alzheimer’s. It’s hard to say just how much—but by the age of 65, one percent of people are diagnosed with Alzheimer’s, so before that it’s even more unusual.”

In Weisman’s trial, there are four people who were diagnosed with Alzheimer’s in their early 50s.

“Historically, Alzheimer’s in old age and young people were thought to be completely different, but we now realize they’re exactly the same disease,” Weisman said. But there’s no explanation for why it would occur earlier in certain people, he added.

“What must have happened in him, and in others like him, is they inherited a wide variety of genes that made them susceptible and then throughout life, these genes somehow got triggered and beta-amyloid started collecting and damaging the brain,” Weisman said. “It’s a disease that can erode a person’s mind to nothing over a period of 15 years.”

While scientists have identified certain lifestyle factors that can decrease the risk of Alzheimer’s—exercising, not smoking, keeping weight in check—there are currently no drugs on the market that can slow or stop the disease progression.

Weisman and his colleagues hope to change this with a drug that targets the beta-amyloid protein, which collects in the brain.

“If it’s successful and if it delays the progression, then we could be looking at a very exciting time in Alzheimer’s because, for the first time, we’d have a medication to treat or modify the disease,” Weisman said. “This could be a revolutionary medicine like in the true sense where things are completely upended.”

In the meantime, Ellenbogen is on a crusade to raise awareness that Alzheimer’s disease, which is typically associated with the elderly, can affect younger people as well.

“If we can get younger generations to understand, we can change the perception of the disease and get people on board to find a cure,” Ellenbogen said.

Michael has started a advocacy website to get the word out about Alzheimer's disease. Check it out at MichaelEllenbogenMovement.com.

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