By Barbara Peters-Smith
Published: Saturday, April 23, 2016 at 8:51 p.m.
STAFF PHOTO / DAN WAGNER
Ed Greelegs and his wife, Susan Holik, at the Lily's Promise residence in Sarasota. Greelegs received a diagnosis of early-onset Parkinson's disease at 50. Now 65, he gets personalized care at this six-person home.
Tall, soft-spoken and dignified, retired from his pivotal career on Capitol Hill in Washington, Ed Greelegs spends his days in a comfortable home in an east Sarasota neighborhood.
He watches TV with his housemates, shares meals with them, takes the air in the back yard, and comes alive when anyone strikes up a conversation about politics.
Because of his Parkinson's disease, some days are better than others. The progressive neurological disorder that has made walking a struggle and most memories irretrievable is also fickle in the severity of its many other symptoms. His medications must be administered carefully, on a consistent schedule.
Another notorious quality of Parkinson's — making it difficult to diagnose and treat — is that no two cases are exactly alike. Some people develop its characteristic gait problems and fluttering hands right away, and others never do.
But few Parkinson's patients have experienced as many twists, turns and challenges as Greelegs, 65, a former longtime chief of staff for Sen. Dick Durbin of Illinois.
He received his diagnosis early, at the age of 50. After two near-fatal medical emergencies in Bethesda, Maryland, his wife, Susan Holik, had him transferred to Johns Hopkins in Baltimore, where they heard about a place in Florida that offered an unusual array of resources for people with Parkinson's: Sarasota.
In two and a half years here, as his symptoms progressed, the devastating setbacks continued. But now Holik believes she has found a safe haven for her husband where he gets careful attention from people who have come to know him. It's a six-person residence operated by a small company called Lily's Promise, using a model new to this area, and offering the kind of highly personal approach that a larger facility often cannot.
An estimated 1 million Americans have Parkinson's, with about 60,000 new diagnoses each year. About 4 percent of those, like Greelegs', are the early-onset variety. Researchers do not know what causes Parkinson's, or why it afflicts more men than women. The disorder worsens as a dying-off of neurons in the brain causes it to stop producing dopamine, the “feel-good” chemical that regulates movement as well as emotions.
“The thing that most people don't get about Parkinson's,” Holik observes, “is that it's not just a motion disease, that there's so much more to it: all these cognitive, emotional, behavioral and other issues that you don't really understand unless you make a study of it, or live with someone who has Parkinson's.”
Sunshine and a social life
Because most cases of Parkinson's are diagnosed after the 60th birthday, it makes sense that a region with more than 40 percent of its population in that age group would see a higher incidence of the disorder.
So far, the latest available county-level statistics on Parkinson's, from 2010, show no cluster in Southwest Florida that would exceed its demographic profile.
But those who work closely with families affected by the disorder say they know of people with Parkinson's who came here specifically for the combination of warm weather and local support.
Neuro Challenge Foundation, a free patient education and guidance service founded in 2008, hosts an annual medical symposium on Parkinson's disease that draws a national audience, and is serving some 1,400 clients, says just-retired executive director Judith Bell.
“One or two people told us that they came to the symposium, went back and sold their home and moved to Sarasota,” Bell says. “We also are hearing from adult children who are living here, who are encouraging their people to move down because of the Parkinson's services.”
When Parkinson Place, a drop-in center with daily classes and activities, opened more than three years ago, some in the local Parkinson's community wondered if there was room for two nonprofits competing for the same clients and donors. But the organizations appear to co-exist peacefully, referring patients to each other and creating a kind of network of services. Executive director Marilyn Tait says Parkinson Place has hosted about 750 people.
“They come to Sarasota, and they say they want to come to our center because it's their home away from home,” Tait says. “I tell them that if you have to have Parkinson's disease, you're in the right city. We have the finest resources anywhere.”
Lynn and Brad Schramek moved to Sarasota in 2012, when the harsh northern winters made getting around difficult for him. She brought with her the Parkinson Cafe, a cultural and social activity group that she founded in upstate New York.
“My husband Brad was diagnosed in 2005 when he was 45,” she says. “We found the right medical treatment, became involved, and by 2009 I was looking for a new program and I couldn't find one. Brad had been a Type A corporate executive; we had to recreate our lives and fill our days with things that we can do that we enjoy.”
Researchers have noted that the Parkinson's population includes a disproportionate number of knowledge workers — executives, engineers, doctors, accountants and even journalists. Coincidentally, this description also applies to Sarasota's retirement demographics. One theory is that people in more physically demanding jobs get more daily exercise, which can slow the development of Parkinson's; another is that more-educated workers live longer, and chronic disease risks climb with age. But it could also be that people who fit this profile are just more likely to seek and obtain a diagnosis.
A terrible thing
Susan Holik says their journey started when she noticed her husband's finger twitch, and immediately blurted, “I think you have Parkinson's!”
“He said, 'That's a terrible thing to say,'” she recalls.
After his diagnosis, which for Parkinson's consists of ruling out other possibilities, Greelegs continued working for a while. At his retirement in January 2007, Durbin honored him with a speech on the Senate floor, calling him “one of the most well liked, even beloved figures on Capitol Hill. ... He knows everybody and everybody knows him.”
About six years ago, Greelegs developed a urinary tract infection and ended up in a Bethesda emergency room.
“When you have Parkinson's and you get a UTI,” Holik explains, “your behavior changes and you look like you've lost your mind. They didn't know what it was, and thought maybe he was having a psychotic episode. They intubated him” — inserted a breathing tube — “and gave him massive doses of Propofol,” a general anesthetic. “He went into a coma. They said he would never emerge from the coma.”
After about nine days, Holik says, she agreed to withdraw her husband's life support. Friends came to say their goodbyes. And as the powerful drugs left his system, Ed Greelegs woke up.
After a second incident at the same hospital, where a dose of morphine brought on another coma, Holik transferred him to Johns Hopkins, where he was diagnosed with Parkinson's-related dementia. Physical recovery took a year. When a fall put him back into rehab, she gave up her career as a litigator to move to Florida. By that time, she had become an expert on Parkinson's.
“I'm someone, if you give me a project, I'll just look straight ahead and get it all done,” she says. “The winters are really hard if you have Parkinson's, especially with slipping on the ice. We needed to get into a warmer climate.”
Once in Sarasota, the couple took advantage of all the Parkinson's programs, as well as political and cultural pursuits. Then in May 2015, Greelegs fell while walking on St. Armands Circle, puncturing his liver. He needed surgery, and more anesthesia, which, Holik says, accelerated his dementia. After trying to care for him at their condo, she finally decided to place him in an assisted-living facility.
Then the facility informed her that he was falling too often, and had to go.
“I think I looked at every place in Sarasota for memory care when I was told I had 45 days,” she says. “A lot of people blackballed him, essentially, because he was already listed as a fall risk.”
Different every day
Patrick Bismuth and Kim Brownstein met when they worked together at a large retirement home in Columbus, Ohio. They modeled their new Florida venture after an Ohio business that operates a chain of nine small care homes — private residences, but with a 24-hour, certified staff instead of live-in owners. They have one house in east Sarasota, where Greelegs lives, and are in the hiring process for a second one in Manatee County, near Lakewood Ranch.
Lily's Promise is a licensed assisted-living facility, but on a very small scale. The staffing level exceeds what is required by the state, Brownstein says, so there is no extra charge for the added care needed as dementia progresses. The cost, she says, is comparable to that of memory care at a larger ALF. The difference is that the residents and caregivers see each other daily, in a homelike environment.
“I named the business after my mom, Liliane,” says Bismuth, the owner. “I wanted to follow a corporate culture where you almost put yourself second to everybody else you're caring for, which my mom did every day of her life.”
Bismuth and Brownstein, who handles the firm's marketing, hope to open two or three new homes a year, in response to what they see as a pressing need for personalized memory care. Every resident in Rolling Green, the Sarasota home, was asked to leave a larger facility that could not provide the extra attention they require. Greelegs is their first resident with Parkinson's.
“It's something we wanted to do when we started,” Brownstein says, “but we didn't have Parkinson's patients knocking on our door. With Parkinson's, that patient looks different every day. In a larger ALF, they can't adjust that level of care. Here, you get to actually know each resident. If someone's acting a little funny today, you're going to notice and tell someone.”
In larger facilities, Bismuth and Brownstein believe, most falls and toilet accidents happen because no one is available to help residents to the bathroom. At the Rolling Green home, staffers can monitor every room on a screen in the kitchen and on their iPads. A security system announces, gently, the opening of every door. Although the bedrooms are private, Bismuth says, residents spend 70 to 80 percent of their daytime hours in the common areas, watching TV or gathered at the large kitchen table.
“When folks move here they usually gain weight,” Brownstein says, “because of the scratch cooking, but also they're sitting around a table and the staff members are there to engage with them and do lots of prompting.”
A really urgent need
Andrea Gilmore-Bykovskyi, a School of Nursing fellow at the University of Wisconsin who has published research about the effect of person-centered care on the behavior of nursing home residents with dementia, says the value of such an approach is difficult to measure scientifically. But there is evidence that direct caregivers recognize changes in behavior a full day before nurses do. In larger institutions, she says, these aides are not always given a voice.
Stringent regulations are another barrier, she adds: “It is so hard to provide person-centered care in a nursing home. We can't have residents walk in the kitchen and make a cup of tea.”
So great is the desire for more dignified and safer memory care, Gilmore-Bukovskyi believes, that untested ventures like Lily's Promise will continue to create change through trial and error.
“One really clear message is that the development of new dementia care models, whether they're environmental or philosophical, is a reflection of a really urgent need. Some of this demand will facilitate some discussion about how policymakers can incentivize this, and stop making it so hard,” she predicts. “It's really an idea about how we respect and treat one another.”
Holik doesn't need any scientific evidence for the change she perceives in her husband's peace of mind after his move to the care home.
“He's much more content,” she says. “He's not agitated, and they don't have him just lying down sleeping. And not only that, he's much cleaner. Honestly, it's just incredible. They cater to each individual. One of the caregivers talks to him about the presidential race.”
Now that Greelegs can no longer take part in the local Parkinson's community, Holik feels fortunate to have found a place where he can still feel a sense of identity and security.
“It's so different than any of the other facilities. It's an awkward family, but families are all awkward,” she adds, laughing. “They sit together at the dining table and the caregivers are cooking in the kitchen. It's like home, and it's a nice home.”
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