Illuminating Alzheimer's: Shining a light on progress and hope 1 year later
MIAMI — Three women. Three brains. One common connection: Their memories are fading, some faster than others.
"I think it's always scary," Amy Adaniel said. "You have all this life ahead of you to live. What happens if you don't remember it?"
"I just take pictures like crazy. I'm constantly getting reminders of anything that we do," Sury Veliz added. "At least my girls will be able to go through pictures and say, 'Oh, remember this? Mom was there.'"
In the year since the first "Illuminating Alzheimer's" special, CBS News Miami has continued to follow the stories of people living with the disease, the family members who give up their lives to care for them, and the doctors and researchers who have made it their mission to find treatments and possibly a cure.
This year, CBS News Miami's special coverage features three women facing memory issues — from mild cognitive impairment to early onset Alzheimer's and ultimately, advanced dementia — in an effort to shed light on the disease now impacting roughly 7 million Americans and their families.
Roughly twice as many women have Alzheimer's disease compared to men.
It's an especially important topic in South Florida, where studies have found Miami-Dade County has the highest prevalence of Alzheimer's disease in the country.
"The great news is that we really are in a new era of how we think about Alzheimer's disease. And what's changed is that number one, we can make an earlier diagnosis than in the past," explained Dr. Marc Agronin with the MIND Institute at Miami Jewish Health.
"We have medicines that treat symptoms and we have at least one medicine that's approved, that potentially is disease modifying," added Dr. James Galvin at the University of Miami's Comprehensive Center for Brain Health. "But those are not cures. Cures are very, very hard."
But, that's not stopping these women and their loved ones from celebrating the small victories to advocating for big breakthroughs.
"The only way that we'll see a difference is in clinical trial," Adaniel said. "And we're seeing that now."
"I'm going to be the first survivor," Veliz said. "I am going to be the spokesperson for surviving. That's my goal."
Alzheimer's diagnosis is getting easier
Thanks to new screening tools, diagnosis can happen earlier and easier.
But as one doctor warns, just because the tests are out there, doesn't mean we should all rush to take them.
Adaniel is used to working with the elderly.
She runs a home health care staffing business and she's been a longtime advocate and supporter of the Alzheimer's Association because of her family history. But despite all her experience, nothing prepared her for her own diagnosis.
"My diagnosis last February came to me as mild cognitive impairment, frontal temporal dysfunction," Adaniel said. "And I didn't see the signs in myself."
She said it was some tough love from her daughter that opened her eyes.
"It was one morning while I was getting ready to leave for work to go to run my home care company that my daughter said to me, 'We've already had that conversation 500 times and I'm not doing it again with you,'" Adaniel said. "And so I walked away crying, I cried the whole day."
But then she jumped into action, scheduling an appointment with a neurologist and beginning the testing process. She was 52 years old at the time.
"I had an MRI, I had an EEG and I had a full neuro-psych eval. So I was in a room for 2.5 hours, three hours. It was a long, grueling test," Adaniel said.
"So, we have them just walk. Then we have them walk while they're talking. Walk while saying the alphabet. And then we have them walk while they're doing subtraction," Galvin said, describing the screening process.
Galvin is leading a study to determine people's risk for the disease called the Healthy Brain Initiative. Like many people diagnosed with memory issues, Adaniel was having trouble hearing.
"If you can't hear, you can't get information in your head," Galvin said. "And if the information never got into your head, how could you possibly remember it?"
His clinic runs a series of tests, including a hearing exam. Adaniel eventually got a hearing aid. They check how people walk, talk, and even how they move their eyes. The clinic also measures muscle mass and body fat.
"People who have more muscle mass tend to have better memories and people who have more body fat tend to have worse memory," Galvin said.
These tests can help determine Alzheimer's risk, but they don't diagnose the disease.
"We have much more sensitive clinical tools to do this and we now have the advent of biomarkers so that we can look for biological markers of the disease through imaging studies through spinal fluid, and now, more recently in the blood," Galvin said. "And that's really going to be a game changer."
So, should we all be getting these blood tests as part of our routine physicals? Galvin says not so fast.
"You wouldn't want an asymptomatic person to get a blood test to see whether they have Alzheimer's changes," he said. "Because one, they may never develop Alzheimer's disease during their life. And two, there's nothing to offer people at this point in time."
Adaniel's tests show, as of now, that she doesn't have a specific protein in her blood that's a hallmark of Alzheimer's Disease.
"I could stay at mild cognitive impairment forever and not progress on to Alzheimer's and dementia and I'll take that. That, that'll be a win for me for sure," she said. "I decided I needed to take the bull by the horns and figure out what I need to do to be able to live a full normal life for myself and for my family."
Drug trials may hold the key to a possible Alzheimer's cure
Last summer in CBS News Miami's first "Illuminating Alzheimer's" special, Sury Veliz's story was introduced.
The 57-year-old is living with Alzheimer's disease and has been for the past five years. But, what may surprise some is that she can still drive, talk and remember stories from her childhood.
"I'm not going to stand by and wait until it catches me, I'm going to put up a fight," she told CBS News Miami in 2023.
One year later, Veliz still has that same mentality.
"I'm going to fight. I have to fight," she told Pastrana. "I have seen improvements. My girls have seen improvements. They're like, 'Oh my God, you remember that!'"
Just like last year, Veliz is still driving 70 miles weekly from her home in Key Largo to a clinic at HCA Florida Mercy Hospital in Miami to get her medication. She's part of an ongoing clinical trial of a drug to treat Alzheimer's disease.
"The shots hurt, so I try not to think about it because I can make myself pass out because of fear," she said.
"It's not easy. She's a trooper. She's a hero. She's doing it for us," said study administrator Maria Gallagher. "My mom had Alzheimer's. She's doing it for our futures and her daughters' future."
"I don't think I'm a hero. I'm just doing what I got to do. Not only to protect myself, but to protect my children," Veliz explained.
The drugs being tested are meant to reduce amyloid plaques that form in the brain, a defining feature of the disease. The FDA approved one such drug last July, Lecanamab, just weeks after Veliz's story was featured by CBS News Miami.
But she's part of a blind study, so she doesn't know if she's actually getting the medication or a placebo.
"I don't know what I'm getting. It hasn't killed me yet, so we're good," she joked.
An FDA panel of expert advisors voted unanimously this June to recommend the approval Donanemab, an Alzheimer's drug. However, some raised concerns about safety risks and insufficient representation of Hispanic and Black patients in the trial.
The potential side effects don't scare Veliz, at least not as much as full-blown Alzheimer's.
"I pray every time I get my shot. Every time. I pray because it hurts. And I pray that it works. I will use everything i can use to battle this disease," she said. "I'm hopeful that we get a cure. Even prevention. I don't want to be doing this all in vain. But like I said, I don't think I am. I think we're on the verge of something really great."
From dementia to "rementia"
Research has long shown things like music, dancing and even bilingualism may play a role in improved cognition. Experts say for that to really have a significant effect, it's best to start early and often. But can we really hit rewind on an aging mind?
CBS News Miami met with a local neurologist who hopes to take his wife from dementia to "rementia".
Bobby Ng loves a few things: music, puzzles and the occasional naughty joke.
"Do you hear about the new movie 'Constipation?'" she asked. "It's not out yet," she said to a round of laughter.
"She has a good sense of humor and I like to have her continue to tell jokes because telling jokes is like tightrope walking for the brain," said Dr. Larry Ng, her husband.
Bobby Ng started exhibiting dementia symptoms about 10 years ago. She was experiencing "sundowning," which is a state of late-day confusion, anxiety or even aggression.
"She had developed a need to drink at sundown and actually walked around," Larry said. "She began to get lost. She would get drunk and lost her way."
Larry Ng isn't just her husband of roughly 50 years, he's also a board-certified neurologist, educator and former executive at a pharmaceutical company that's currently developing Alzheimer's drugs.
"Even if we have a drug that would dissolve the plaques, the person will not be able to get up and function. So we need a program for them to relearn how to get back on the road to navigate the highway of life," he said.
The neurologist said the current medications on the market can't reverse the damage already done to the brain. But he believes his "dementia to 'rementia' model" might make a difference, and he's trying it out on his wife.
"It's an immersive multi-dimensional, multi-sensory program that is activating to restoke the furnaces of our brain, namely the mitochondrial system that is beginning to fail us, the energy production is beginning to fail us," he said. "'Rementia' is regaining agency over your mental capacity and over your physical capacity."
He uses his wife's personal narrative as a platform to develop activities that engage her attention and interest over a long duration, not just in short bursts.
He said he's seen improvement in her behavioral, emotional and cognitive function over time.
"I'm hopeful that we can slow the decline," Larry said.