Once Bob Dein kept his family struggles hidden. Now this fearless Gator is transforming lives by raising his voice for Parkinson’s support. (And he’s enjoying a Second Act!)
“Sometimes when you’re in a dark place, you think you’ve been buried, but actually you’ve been planted.”
These words, by author Christine Caine, sum up the courageous life journey of Dr. Robert “Bob” Dein (MD ‘71), a retired pathologist-turned-philanthropist who’s bringing hope to others by supporting key research at UF and candidly sharing his own trials as a long-term caregiver.
“It almost sounds corny,” said Dein, “but I really love giving things – and giving of myself.”
Today, that giving is joyous. In the past, though, it almost destroyed him.
For 12 years, Dein struggled as the sole caregiver of his wife, Barbara Padgett Dein (BSMT ’70), who had Parkinson’s disease. She made him swear to tell no one close to them – not even their grown son – about her illness, and Dein complied, not realizing how hard things would get. When she began to experience hallucinations and psychosis, Dein stuck by his vow and kept those disturbing symptoms from even her doctors, all the while sinking deeper into depression and hopelessness.
And Other Tips for Long-Term CaregiversRead More
It was a stretch, he admits, that nearly drove him to suicide. Only when he brought his wife to a hospital for observation was he able to take the steps to save himself and get her the level of care she truly needed.
From that dark place bloomed a determination to ease others’ burdens.
Two years ago, Dein endowed a UF professorship for Parkinson’s research in Barbara’s name.
His generosity supports the work of professor Irene Malaty, MD, a Tourette’s specialist and medical director of the National Parkinson Foundation (NPF) Center of Excellence at the University of Florida. He also has given generously to the NPF Center’s umbrella institute, the Fixel Institute for Neurological Diseases at UF Health, which offers access to integrated, interdisciplinary care.
“I just turned 70,” Dein explained by phone. “And now, to me, it’s a big deal to help other people.”
Love, the Second Time Around
These days, Dein is upbeat and full of life –- and not just because he’s lending others a hand. Love has blossomed a second time for the UF philanthropist, who rang in 2019 by marrying the new love of his life, Priscilla Joyner Dein, on a Disney cruise.
The couple have walked the same difficult path: Priscilla was a lifelong caregiver to a son who died at age 26 from a neurological disease.
Given all they’ve been through, the newlyweds are determined to treasure their time together. That includes getting to know each other’s children and grandchildren and, in Bob’s case, making room for Priscilla’s canine pal, Molly, a feisty Maltese-poodle mix.
“Molly’s just seven and a half pounds, with a tremendous alpha personality,” laughed Dein about his newly adopted pet. “If you’re playing fetch with her and you try to grab the toy, she’ll growl and tug – she wants to win at everything.”
If go-getter Molly sounds like a Gator at heart, the same can be said of Dein. From his earliest days, he was determined to come out on top, spurred on by a father who expected great things of his son.
A Floridian since age nine, Dein still retains the distinctive accent of his native New York. Born in Queens at the start of the baby boom, Dein and his family spent several years on Long Island before heading south in the mid-1950s for Florida sand and sun. The town they settled on, Englewood, south of Sarasota, was back then a small, sleepy fishing village.
Going to school meant catching a bus north to Venice, “about an hour each way, with stops,” Dein recalled. Egged on by his father, Dein skipped a couple grades and graduated from Venice High School two years early.
In 1964, just four years after the University of South Florida opened its doors, fresh-faced Dein enrolled at USF, majoring in biology. True to form, he earned his degree in three years, rather than four, and charged ahead to enter med school at the University of Florida.
He was just 19.
“I was the youngest in the class,” Dein said, admitting his age was a bit of a social handicap: “I wasn’t that mature.”
In the second year of medical school, he became close to fellow student Barbara Jean Padgett. Barbara was studying for a BS in medical technology (a major no longer offered at UF), and the smitten scholars had more than a few things in common: She was also from Florida’s west coast, had previously earned an undergraduate degree at USF, was passionate about medical science and loved the Gators.
In fact, Barbara and Dein had been in some of the same classes back at USF, but he’d lacked the confidence back then to approach her, he says.
The couple got married at the end of Dein’s third year of medical school. By then, he’d set his sights on becoming a pathologist – a specialist who interprets and diagnoses the changes caused by disease in body tissues – and after earning his MD in 1971, the couple stayed on for four more years in Gainesville while Dein did his residency at UF.
Meanwhile, the Vietnam War was raging, and Dein was squarely in the age bracket targeted for the draft. Luckily for him and 42,000 other US medical students, a special military program known as the Berry Plan enabled him to defer active duty until he completed his residency.
In 1975, the same year the war ended, Dein joined the US Naval Reserves and began active service at a naval hospital in Orlando. A son, Jeffrey, had been born the previous year, and the Dein family relocated to Winter Park. Two years later, his tour of duty over, Dein and his family moved to Florida’s Gulf Coast. They eventually settled in Venice.
“I joined a pathologist who was at Venice Hospital, which was a fairly small private hospital, nonprofit at that time, and stayed there for close to 30 years,” he explained.
Adrift at Sea
Life was good for Bob and Barbara Dein for many years. In addition to avidly supporting their favorite team, the Florida Gators, the Deins were active in the local boating community and took long sea voyages together.
“We went to the Bahamas 13 times in our own boat,” said Dein.
Dein was planning on retiring early when Barbara was diagnosed with Parkinson’s disease in 2002. She swore him to secrecy, not even allowing him to tell Jeffrey, who by this time had moved to Georgia and gotten married. Dein complied with Barbara’s wishes, thinking it would be easy for him to care for her on his own as a retiree.
“I figured we could pick up several good years together before things started turning south,” he said. “It was a good thing I did that because we did have some good years, and then things really did go south.”
In addition to having problems moving, Barbara began to experience the nonmotor symptoms that come with Parkinson’s. After 10 years with the disease, she started hallucinating, inventing stories and throwing objects. (More than half of all PD patients eventually develop psychosis, according to the American Parkinson Disease Association.) To shield his wife, he told no one, not even her doctors, all the while sinking deeper into despair.
He even contemplated suicide, an admission he shared with a columnist in 2018.
“I didn’t see any other way out,” Dein said. “It sounds selfish, but I wasn’t thinking anything but, ‘I have to get out of this place.’”
A New Dawn
Dein finally got Barbara the skilled care she needed in 2014 when he checked her into a hospital for observation. Based on doctors’ recommendations, he moved her into assisted living, then into a memory care unit. Those acts lifted his caregiving burden and protected her:
“You’re doing them a great favor,” he said. “They get professionals around who can help them all the time. And you save yourself so you can help them when you have to. You’re not going out of your mind.”
An understanding therapist helped Dein reclaim his own wellbeing, empowering him to step into a productive future after Barbara’s death in 2016.
First on his list of priorities: Advance Parkinson’s research by supporting the career of someone poised to make a lasting impact.
That “someone” turned out to be Dr. Malaty, a protégé of Dr. Michael Okun, a leading force at UF’s Fixel Institute. (Another fellow of Dr. Okun’s had overseen Barbara’s care in Sarasota.)
Dein felt an immediate affinity with Dr. Malaty’s focus on the nonmotor aspects of Parkinson’s. He also appreciated her popularity with residents and fellows in the neurology department. That rapport guaranteed her influence would have a “ripple effect” in the field, with graduating students incorporating her methods into their own research and practices.
“Dr. Okun’s comment about the endowment was, ‘This will move the needle,’” said Dein. “That’s what I wanted to do with a major gift: Make a difference.”
Dr. Malaty joyfully received the Barbara Padgett Dein Professorship in Parkinson’s Research in a ceremony honoring newly endowed faculty members at the McKnight Brain Institute on October 27, 2017.
A photo from the event shows doctors Malaty and Dein embracing next to a commemorative hardwood chair made especially for the young researcher. Their hug encapsulates the transformative partnership forged between a donor and his endowed faculty member.
Addressing the audience that day, President Fuchs remarked: “In my position, I’m lucky in that I get to hear stories from both sides of the equation.
“For the benefactors, these stories are often deeply personal, of both tragedy and hope. For the faculty receiving these chairs, their stories are about gaining the freedom to fully pursue their lives’ work.”
Better than a Bucket List
Dein may have given a “chair” to Dr. Malaty, but he’s not ready to sit down, yet. He and Priscilla hopped aboard a Disney cruise to the Bahamas and said their vows in front of eight family members on January 2, 2019.
“We had our wedding over a holiday to get all the kids and grandkids together,” he said. “With work and school, it’s hard to round them all up otherwise.”
Photos from the onboard wedding show Bob and Priscilla in coordinated tones of taupe and tan – “I love the phrase ‘understated elegance,’ said Dein – and a multigenerational garden of love blooming around the lucky couple.
Back home in Venice, Dein is settling into married life with Priscilla (and Molly). He serves on the board of the nearby Neuro Challenge Foundation and counsels distressed patients and their caregivers.
“People just need a sympathetic ear,” he explained. “I tell people the truth about what it’s like to care for someone with this disease – no sugarcoating — and they appreciate that.
“It’s incredibly rewarding to help people when they’re in such a tough place.”
Volunteering for a Parkinson’s organization might not be everyone’s idea of the perfect retirement, but Dein wouldn’t have it any other way:
“My therapist said to me, ‘You’ve got some money, you’ve got time, you’re retired. What do you want to do with the rest of your life? What’s on your bucket list?’
“I don’t have a bucket list,” said Dein. “I could hop on a plane tomorrow, go to Europe, but I don’t. I enjoy what I’m doing right here, right now, helping people with their lives. That’s what I want to be remembered for.”
“Does that sound too corny?”
And Other Tips for Long-Term Caregivers
Dr. Bob Dein shares lessons learned from the caregiving trenches:
Your loved one's illness is not your fault. Do not take on guilt. Likewise, if the illness involves psychological or psychiatric symptoms, remember you are the cognitively healthy one, so stand your ground. Do not let the inmate run the asylum.
Make sure you get adequate sleep, healthy food, exercise and medical care. You cannot help your loved one if your health fails.
Keep up with friends and family. Allow for some hobby time. This may require securing some respite time for yourself. Enlist a family member, neighbor or hired caregiver to give you time off.
Mentally stay in the moment, hour and day. Do not waste time fretting about what might happen in the future.
Get financial and legal affairs in order early in the game. An eldercare attorney can be a huge help, but do not wait until the end is near. Be proactive.
Give yourself time to attend to spiritual needs. Pray, meditate, do yoga, etc. – whatever floats your boat. Each minute spent in these activities can add hours, or days, to your life.