Health Hackers: Alzheimer’s Patients Help Themselves

19 September, 2016

From VOA Learning English, this is the Health & Lifestyle report.

A group of friends from around the world have gathered because they all have something in common. They all want to have fun. They all want to exercise. And they all want to eat healthy.

Those reasons are great. But they are not why these people have banded together.

One hemisphere of a healthy brain (L) is pictured next to one hemisphere of a brain of a person suffering from Alzheimer disease. (FILE PHOTO)
One hemisphere of a healthy brain (L) is pictured next to one hemisphere of a brain of a person suffering from Alzheimer disease. (FILE PHOTO)

The have banded together because they all carry the APoE4 gene. That gene increases their risk of getting the brain-destroying disease known as Alzheimer's.

"We all found out that we carry one or two copies of the APoE4 gene. Which is ... it puts us at higher risk for Alzheimer's."

Susan, who gives only her first name, says her father died from Alzheimer's. As the disease progressed in his brain, doctors had little to offer except a memory-boosting drug called Aricept.

She adds that doctors had a fatalistic attitude, meaning they acted as if they could do nothing to reverse the damage from Alzheimer's.

Again, here's Susan.

"It was just more or less, well, we can try Aricept but it won't work for very long. And there's a fatalistic attitude with some doctors that once you have it, there's nothing you can do. And you just sort of have to get your affairs in order and expect that you're going to the nursing home next."

Four years ago Susan discovered that she has the APoE4 gene. She says that she was determined to do something. So, she went online and looked for other people with the APoE4 gene.

When Susan found other people with her genotype, they banded together to "hack" their own health. In other words, they wanted to figure out how to help themselves without the help of traditional doctors, nurses and hospitals.

"A bunch of us banded together and decided to see -- can we hack our own health."

One of those health hackers is a woman who goes by the name "Juliegee."

Before banding together with Susan, Juliegee had been anxiously watching as her "senior moments" increased. A "senior moment" refers to a time when an older person forgets something. But Juliegee was not really an older, or senior, person. She was only 49. Then she learned that she has the APoE4 gene.

"When I put the symptoms I was having together with my very high risk of developing Alzheimer's disease, I was pretty terrified."

Her fear turned to bravery as she helped build an online community named This community of health hackers researched the many conflicting studies about healthy brains. Then they directed their attention to leafy greens, healthy fats, exercise and more.

Juliegee made lifestyle changes. And now, she says, her thinking ability, or cognition, has improved.

"It's been a very exciting journey. My cognition is very much improved now."

The group's approach is confirmed by doctors and researchers in the medical community.

Dale Bredesen is a researcher at the Buck Institute for Research on Aging. He studies how combining lifestyle changes with other measures can reverse the weakening of a person's cognitive ability.

Bredesen has worked with the group for two years. In June of this year he added to their hope.

Bredesen documented a reversal in cognitive decline in patients with early Alzheimer's. He says that when he looked at the actual causes of cognitive decline, he found many lifestyle factors affect the brain, including stress and sleep.

"This is the first time in history that there's been reversal of cognitive decline in early Alzheimer's disease."

Bredesen calls the group a great example of people who are taking their health care into their own hands. They are using many different ways to help the brain, such as exercising, eating healthy foods, cutting down on stress and getting enough sleep.

"What's happened up until now is that people will say, ‘Don't bother to find out your APoE status because if you find out you're APoE4 positive, then there will be nothing to do about it.' And again, we disagree with that. There's a lot that can be done with it today."

Members of the group say the sooner a person starts taking control of their brain health, the more likely that a genetic risk won't become their fate.

"I can hopefully prevent it, but if not, at least put it off for decades."

Bredesen plans clinical studies to improve his methods for reversing cognitive decline.

The Alzheimer's Association calls his work a "promising possibility." The association adds that his research may help the United States develop national policies to "prevent or effectively treat Alzheimer's disease by the year 2025."

I'm Anna Matteo.

Shelley Schlender reported this story for VOA News in Boulder, Colorado. Anna Matteo adapted it for Learning English. Kelly Jean Kelly was the editor.


Words in This Story

fatalistic adj. the belief that what will happen has already been decided and cannot be changed fate n.

attitude n. the way you think and feel about someone or something

put your affairs in order phrase Ensure that one's financial and legal arrangements are properly organized, especially in preparation for one's death.

genotype biology n. the genetic constitution of an individual organism.

band together to form a group in order to do or achieve something <They banded together for protection.>

health hacker a person who uses the latest technology to research and care for their own health needs : also called biohacker

cognitive adj. of, relating to, or involving conscious mental activities (such as thinking, understanding, learning, and remembering)

decline v. to become worse in condition or quality

reversal n. a change to an opposite state, condition, decision, etc.

fate n. a power that is believed to control what happens in the future

to put something off phrase postpone something