Early onset Alzheimer’s can’t keep CT ’84 Olympian from a full life
MILFORD — Dorothy Franco-Reed is describing the photo on her wall taken when, as a 1984 Olympic handball team member, she posed with first lady Nancy Reagan.
The words are pouring out, the excitement undimmed after 35 years.
“I’m about three rows deep from the stage. President Reagan does his thing and then Nancy Reagan came out to address all the U.S. athletes,” said Franco-Reed, adding that she suddenly had decided to give the first lady her Olympic pin.
“I just spontaneously parted the Red Sea” and jumped onto the stage, she said. “I’m going after Nancy Reagan with my pin in hand … and these Secret Service agents came out of nowhere. … I didn’t mean to cause a ruckus.”
Franco-Reed is wrapped up in the memory of Los Angeles in 1984.
“I hugged her real tight,” which wasn’t the greatest of ideas because “she’s fragile and we’re so used to being physical,” she said.
She told Reagan, “On behalf of all the Olympians here — I know they support me on this — I want to give you one of our team pins.” And she pinned it on Nancy Reagan, making her promise not to trade it away.
Franco-Reed will always have that memory. But other, more recent events, may begin to fade. She is just 61, but Franco-Reed has Alzheimer’s disease.
Of 5.8 million Americans living with Alzheimer’s — 78,000 in Connecticut — just 200,000 were diagnosed under age 65. Franco-Reed’s mother, Dorothy Franco, was diagnosed in her 80s and lived until she was 94. Franco-Reed, diagnosed in February 2018 at 59, and her family know the road ahead will be difficult, although they can’t predict how the disease will progress.
Today, Dorothy Franco-Reed is living her life at full tilt. She and her family took a trip around the country last year, then went to Peru, where her son was playing on the national handball team in the Pan American Games and made a winning goal during a game against the eventual winner, Cuba. They even got to Machu Picchu. She still held her annual high school volleyball camp in Milford this year. She volunteers for clinical trials of experimental drugs.
And she’ll be on the stage at the Alzheimer Association of Connecticut’s Walk to End Alzheimer’s at Lighthouse Point Park in New Haven Sept. 29. She will hold up a blue flower, representing those living with the disease. Her daughter, Kyley Reed, leads the Walk for the Dots team, which had raised $5,950 as of Friday.
Dot Franco-Reed is a competitor. She participated in five sports at various times before she graduated from Milford High School in 1976: softball, swimming and diving, basketball, volleyball and tennis. She continued in volleyball and basketball at the University of Alabama.
“I was one of the foolish ones,” she said. “You can’t play two sports at the Division 1 level. It just wears you out.”
She’s a member of the Connecticut Women’s Volleyball Hall of Fame, as is Kyley Reed, class of 2017. She coached the sport at the University of Minnesota (she had the job lined up before the Olympics), Tulane University and Alabama, the last two with her husband, Tom Reed. She then worked as athletic coordinator at Newington High School and as a commentator at ESPN, where Tom Reed works in the graphics department.
It was on her way home from a cruise after college graduation that a friend asked her if she’d like to try out for team handball, a sport similar to soccer, but played by passing a ball.
Franco-Reed was new to the sport. “I’m lacing up my sneakers and they’re telling me the rules of the game as I’m getting ready for them,” she said. During her tryout, she took a shot at the goal and “it ricochets off the corner post and goes in. That’s my game!” she told herself.
She trained in Colorado Springs and Lake Placid, N.Y., and took part in the National Sports Festival, where Olympic hopefuls would show their talents. She was cut twice from the team, but said, “I think it was a blessing that I had to go that path because it made me appreciate what it takes to get to that level. I just tore it up. I was so hungry.”
When she was called into a room with 14 other women — there are 15 on a team, with seven players at a time — she didn’t realize she had made the Olympic team, didn’t even hear her name called. When it hit her, “I made a fool of myself, I’m sure. … I cried. It was crazy.” She called her mother to give her the news.
It’s at this point in the story when the tears come. Remembering her mother, who was so supportive of her but who died of Alzheimer’s disease, brings up a surge of emotions. “She got hers later, though. Wish mine would have held off. She was a rock,” Franco-Reed said.
Dorothy Franco was a rock who had eight children. Franco-Reed was the seventh. She said the time when her mother had Alzheimer’s “was a blessing. I wouldn’t trade a day of it.”
Before the Olympics, the team traveled to Yugoslavia, Germany, Sweden, South Korea, China and Japan. “You have to stay in shape, and you have to compete,” Franco-Reed said.
In Los Angeles, Franco-Reed’s team finished one goal short of a bronze medal, according to the Hall of Fame website. Yugoslavia took the gold. The 23rd Summer Games, led by Peter Ueberroth, were a huge success, largely, Franco-Reed said, because of the introduction of corporate sponsorships that enabled the Games to make a huge profit.
As an athlete, “everything was accessible to you,” she said. “They treated you like kings and queens. Everyone was just so generous and proud.” She was told not to bring anything with her. Even toiletries were supplied. “I felt like I was in a dream state the whole time. … I just remember it being so insanely wonderful.”
Humiliating and demoralizing
Now, facing a progressive disease, Franco-Reed said she knows she repeats things. She thinks some friends avoid her. “It’s terrible in the moment and can be humiliating but at least the better memories aren’t being stolen,” she said.
“I don’t have a fear of communicating,” she said. “I have a fear of repeating and I’m a communicator, so I engage a lot.” But realizing she’s repeating herself leaves her demoralized at times, she said.
“I don’t care if you repeat the same stories over and over again because I want to hear them,” Kyley Reed said. Better to hear them than forget them, she said.
Reed first sensed that something was wrong when she was attending Rice University, four years before the diagnosis. But during a visit to London, when Reed was studying abroad, “My mom said something about dementia and [said] ‘I think I might see a neurologist’ … and I started sobbing.”
Reed said her mother’s repeating things, as well as her confusion at times, was difficult to deal with at first, when Franco-Reed “was sad and depressed and crying all the time.” Both have had their rough patches.
“I’ve been extremely stressed out,” said Reed, an English teacher at Jonathan Law High School. “I’m just kind of panicked.” It happens especially at night, and when she thinks about the future. “There’s this constant question mark of how’s her life and how’s my life going to turn out?”
But day to day is much easier than it was before they knew Franco-Reed’s diagnosis. “I’ve made a little more room for acceptance,” Reed said.
“You have to make the switch to kindness,” Reed said. “You might be uncomfortable or frustrated … but it’s only going to result in shame” if it’s expressed too bluntly.
A faster decline
Dr. Kristina Zdanys, a geriatric psychiatrist at UConn Health in Farmington, said early onset Alzheimer’s brings its own challenges, such as “developing symptoms that aren’t immediately identified by their physician as Alzheimer’s disease.” Patients may have young children or be “at the peak of their careers.”
“Additionally, the rate of decline is faster and more aggressive with people with younger onset,” she said.
“I work a lot with patients and their families before and after diagnosis and the emotional impact on younger onset and their families can be devastating,” Zdanys said. “It can be associated with depression and anxiety. … The best way we can help these families is to help them build a community of support that includes help on a variety of levels.”
Caregivers also need support, including with such basic tasks as helping with driving and shopping, she said. “That can make their quality of life a lot better because caretaker burnout is strong. … The Alzheimer’s Association is a huge resource for families who are going through a similar experience.”
There is a form of early onset Alzheimer’s that is genetic, and a test can determine whether the disease can be passed on, but “about 40 percent of people who have early onset have no family history of Alzheimer’s whatsoever,” Zdanys said.
While many people experience memory loss as they grow older, Zdanys said, forgetting where their car is parked, for example, “the key is that there’s a pattern of worsening where these symptoms become more frequent and more significant.” When forgetfulness affects daily activities, such as cooking, household chores, managing finances or medications, “it’s worth bringing up at an annual physical” and seeing a neurologist.
“The key for slowing the progression is to keep the brain as healthy as possible and we worry about the tiniest blood vessels in the brain sustaining damage over time,” Zdanys said. Keeping blood pressure and cholesterol in the normal range and controlling diabetes are important.
Two medications can slow, but not stop the progression of Alzheimer’s: acetylcholinesterase inhibitors (donepezil, rivastigmine, galantamine) for mild to moderate disease, and NMDA receptor antagonists (memantine) for moderate to severe disease, Zdanys said.
Be honest, be kind
Franco-Reed doesn’t want others to minimize the symptoms, and she doesn’t find it helpful to be reminded that she’s just said the same thing she said five minutes ago. At the same time, she wants others to “be honest, and then I can share more and let them understand.”
The test came in 2018, when the family planned a 50-day road trip across the top and bottom of the country and along both coasts. “We planned to go and then she got diagnosed and doctors at Yale New Haven were saying ‘You should go on the trip,’” Reed said. “It became this really famous event among our family and friends.”
“It was far and away the best thing I’ve ever done,” Franco-Reed said, even though there were difficult times. “Montana was rough,” Reed said.
Then, this summer, they were in Lima, Peru, as Ty Reed made a penalty shot to win a tie game. Somehow, Franco-Reed got on TV, cheering on her son. “My mom gets all this camera time; the American flag is billowing in front of us,” Kayley Reed said.
“The lesson is, just to keep a positive attitude and keep on living your life, surrounded by people who love you the most, and don’t let the disease define you,” Franco-Reed said.
Another way she keeps living her life is by volunteering for clinical trials. She has participated in one, for a drug made by Biogen called aducanumab, which targeted the beta amyloid protein that is believed to create plaques in the brain. However, the study was stopped when it was found not to be effective.
Now she’s being screened for a similar drug, BAN2401, sponsored by Biogen and a Japanese company, Esai.
“I felt like I was running out of options,” she said. “You take a chance. I know it’s experimental, but I trusted these doctors. They’re so devoted and dedicated to the cause.”
The Alzheimer’s Association has developed a clinical trial matching service, called TrialMatch, in which people can be anonymously connected to studies that may help them.
Franco-Reed also works out with weights in her condo and watches her diet. And aside from her symptoms, which are mild so far, she’s still the same high-energy person she’s always been. “My mom is extremely fun, competitive; everything becomes a game,” Reed said. “Honestly, part of why I wanted to go into teaching … is because of the constant support and confidence that my mom instilled in me. … She just made me feel I could do absolutely anything.”
Franco-Reed is facing the future with her eyes open, but she isn’t going to be beaten by the disease. “We need to not be embarrassed,” she said. “We didn’t ask for this, we didn’t choose it, so you make the best of it.”
The Alzheimer’s Association of Connecticut offers support and resources for those living with the disease, their families and caregivers, including support groups and an online support called ALZConnected. Go to alz.org/ct or call the help line at 800-272-3900.