Michelle Whitney knew in her heart that her husband would be OK.
The doctors would take his blood, run the genetic tests and tell Brent Whitney that his future didn't hold the same demise that his father met.
Her heart was wrong.
“I'd like to think for me and Brent being a younger couple, we will be together forever,” Michelle said. “It's just that forever isn't going to last as long as we'd like it to.”
Like his father, Brent Whitney has a gene mutation that almost guarantees he will develop early-onset Alzheimer's.
Doctors say Brent will likely develop the disease around the same time his dad did — at 48 or 50. Brent is 34.
Running through generations
Growing up in Grove, Brent's parents never really talked about Alzheimer's. The only thing he remembers is his mother telling him that the disease ran in the family, and that their relatives thought it “skipped generations.”
“So, it's either going to skip Dad's generation, or it's going to skip your generation,” she told Brent.
The gene mutation — N141I — plagues Brent's family. His grandmother carried the same gene mutation and died at 55 from early-onset Alzheimer's. Nine of her 14 siblings met the same fate.
Among his grandmother and her siblings' 36 children, 25 are at risk for carrying the gene mutation. So far, five of those children, including Brent's dad, have died in their 50s and 60s.
Brent is one of 87 grandchildren, 44 of whom are at risk. Brent is one of the few who have had genetic testing.
Several of his family members are involved in research known as the Dominantly Inherited Alzheimer Network, an international partnership of scientists. They're researching a rare form of Alzheimer's that's caused by gene mutation.
Dr. Randall Bateman, a researcher with the DIAN study, said they're researching people like Brent because of how likely they are to develop Alzheimer's. It enables scientists to better understand what happens earlier in the disease.
At one point, a doctor told Brent he had a 97 percent chance of developing Alzheimer's. Brent jokes that's because the doctor didn't want to tell him 100 percent.
But Bateman said there are a few reasons that doctors steer away from saying that Alzheimer's is an absolute for people like Brent.
“Occasionally, depending on the mutation and who has it, there have been reports in the literature of people who have apparently had a mutation and didn't develop the disease,” he said. “Those are quite rare.”
‘Is the disease here now?'
After Brent joined the DIAN study, he pursued genetic testing to find out whether he carried the gene mutation.
One night, about two months after he got his test results back, he was cooking pancakes, eggs and bacon for dinner. His family loves breakfast for dinner.
He had everything on the table, and Michelle and their children were waiting on him.
He went to the fridge to get the butter. He grabbed it and sat down at the table.
“I set it down and everybody looked at me like I was crazy,” he said. “I looked down, and I had grabbed the carton of eggs. I laughed it off, but it scared the hell out of me.”
Brent has countless examples of moments when he questions, “Is the disease here now?”
He frequently misses turns when he's driving. The old Brent did that, too, but post-genetic testing, it's harder to shake. His memory of his daughter's birth is foggy. Is that the disease's fault?
For the past two years, Brent has been left wondering, worrying and thinking about the future.
He has a list of things he wants to do with his family. He'd like to go to the Grand Canyon, see Mount Rushmore and visit the Redwoods in California.
“And I want to be here for my grandkids — and not just physically, mentally, also,” he said.
Brent doesn't have any of those yet. Right now, he's busy raising a preteen and teenagers, Marissa, 12; Brent, 14; and his stepdaughter Jessica, 17.
He and Michelle told their children about the gene mutation about a year ago. So far, they haven't asked many questions.
“Right now, they're just busy being kids, and I think it's going to stay that way until they're probably around 16 or 17,” Brent said. “And then they'll probably start thinking about it.”
At this point, he and Michelle will share opposing viewpoints.
Deciding on whether to test
Whether Brent should or shouldn't have taken the test is one of the few things that Michelle and Brent disagree on.
At first, Michelle supported Brent being tested. Over the past two years, her opinion changed.
Michelle can tell when Brent is thinking about Alzheimer's. He has a look to him. She'll ask him what's wrong. “Nothing,” he'll say. She knows better.
Maybe some day she will change her mind and agree that knowing is better than not.
But it's hard to see the person she loves most go through emotional highs and lows.
“I just want him to be happy — right now,” she said. “He needs to be happy now. This is when he does not need to go downhill.”
There are no medications he can take, and at this point, all he can do is lead a healthy life and hope for the best.
He went on a diet and lost 60 pounds.
“The main thing on my mind at that time was ‘I need to lose weight so my wife can pick me up easier when the time comes,'” he said. “That's not something a 32-year-old should be thinking about, but that's what was on my mind.”