Growing up in Indonesia, Edmond de Bie often faced confrontations from other boys seeking fights, whereas his cantankerous identical twin brother Edward would carry magazines under his jacket to cushion the blows, usually coming at his own instigation.
“My dad was a small South Asian man, but he was scrappy,” Connie Bailey says of her father, Edward, whose eventual struggle with Alzheimer’s disease led Connie to proactively plan for her own health and care should she ever face the disease.
As twins, Edward and Edmond were very close. They immigrated to the United States together, worked as engineers at the same company in Wisconsin, and were neighbors when they retired with their wives to Florida. When Edward started showing signs of memory loss around 2013, his children back in Milwaukee attributed it to aging and being tired. Then, one day, he left for what was supposed to be a quick trip to the grocery store. Instead he was gone for hours.
“That’s when my brother, Eddie, flew down to Florida,” says Connie. “Dad was 73, and still so vital and healthy, you don’t think Alzheimer’s. But my brother called and said it wasn’t good.”
Connie and Eddie convinced Edward and their mom, Eileen, to return home. Back in Wisconsin, the family struggled to have Edward diagnosed and to cope with his steadily declining health. Around the same time, Edward's twin, still in Florida, was himself diagnosed with Alzheimer’s disease.
“In hindsight, it was obvious, but it took a long time to get a diagnosis,” Connie says.
When he was finally officially diagnosed with Alzheimer’s disease, rules required that Edward move into a memory care ward — alone.
“When he was separated from my mom, that’s when he got worse,” Connie says.
Edward passed away at age 77, not too long after the move to the Alzheimer’s floor, and Eileen followed him a few months later. Connie says her mother died of a broken heart. Edmond is still battling the disease and every day asks when he’s going to see his brother again. Edmond’s wife simply reminds him that Edward moved back to Milwaukee and will visit soon.
“That’s a big takeaway for me: Tell them whatever the happiest and most positive outcome is,” Connie says. “Give them that moment, because in two seconds they’ll forget and the confusion and anger will set back in.”
Things have started normalizing for Connie, and Eddie and his family followed a job opportunity to China. Perhaps the biggest lesson Connie absorbed from her father’s illness is that she wants to take steps to protect her own health, for the sake of her son, age 13. She’s taken out a long-term care insurance policy and signed up with Alzheimer’s specialists at the University of Wisconsin and is hoping to undergo assessments and create a baseline for herself for future comparison as she ages.
Connie says she is excited about a new drug that can potentially reduce amyloid plaques in the brain. In a large, 18-month study, treatment with the drug was proven to slow the progression of early Alzheimer’s. People with mild cognitive impairment (MCI) resulting from Alzheimer’s disease or with mild Alzheimer’s dementia are potential candidates.
This new therapy requires a set of four magnetic resonance imaging (MRI) scans — taken before the start and again within the first six months of the therapy — to allow the clinician to evaluate potential adverse side effects of the treatment. Also, the presence of amyloid plaques in the brain, which the new therapy is targeting, need to be confirmed, which can be done using an amyloid PET scan to visualize the plaques. GE HealthCare solutions and technologies span across this new Alzheimer’s disease patient care pathway, from diagnosis to therapy planning and delivery to evaluation. Its suite of solutions can help clinicians see the finer details of the entire brain structure through improved efficiencies and enhanced image processing. It also helps clinicians achieve an early diagnosis of cognitive impairment due to Alzheimer’s and helps them visualize the progress of the disease.
Given her family history, Connie says she wants to explore every option and be prepared for any eventuality.
“If I’m doomed to be stricken with this, I don’t want my son to have to be put through what I was,” she says. “I’ve been a healthcare advocate for other people for 10 years, and now I’m advocating for my own future and health. It’s really not for me, though. I’m doing all this to protect my son.”