Johns Hopkins secretary helps students, faculty see Parkinson’s disease from patient’s perspective – Baltimore Sun

Julie Bullock remembers the day she was diagnosed with early-onset Parkinson's disease in September 2011. She walked to her car after her doctor's appointment and sat in the parking lot searching the internet on her phone.

"Will Parkinson's disease kill me?" the Essex resident recalls typing.

It wouldn't. She returned to her job that day as a secretary in the Johns Hopkins University's department of psychological and brain sciences the office where she began six months before her diagnosis, working with students studying conditions like hers.

Five-and-a-half years later, Bullock, 48, hasn't let the tremor in her right hand stop her from making homemade jams and other foods to spread the word and drum up funds for the Parkinson's Disease and Movement Disorders Center at Johns Hopkins Hospital, and she's recruited local restaurants to put on a series of fundraising events throughout April, Parkinson's Awareness Month.

She also serves as a firsthand resource on Parkinson's for students and faculty. Even as they impart medical knowledge about her disease, she can explain how it feels to live with it.

Parkinson's is a progressive degenerative disease that causes people to lose control of their movements as a result of the deterioration of dopamine-producing brain cells. The exact cause of Parkinson's is unknown, though factors including rare genetic mutations and environmental triggers can contribute to its development. While the condition itself is not fatal, complications from Parkinson's can be.

Bullock's condition has been slow to progress. Her tremor is constant but not painful, and she said it feels like "when you've crossed your legs and you've put all your weight on them for like 40 minutes it's like pins and needles, except you don't quite know the dimension of your own limb anymore."

Bullock explained the feeling during a guest lecture for an undergraduate class on positive psychology. She asked for volunteers and called on Joshua Langfus when his hand went up.

"She said, 'OK, stand up please and pick a body part any body part and start shaking it. And don't stop until I tell you to stop,'" said Langfus, 24.

He picked his right knee and wiggled for 25 minutes before she told him to stop.

"At the end she finally said, 'All right, well, so imagine that is what your life is like,'" said Langfus, now a manager for the vision lab in Bullock's department. "You don't have control over your limbs."

"It wasn't meant to be morose," Bullock said. "It was hopefully just kind of eye-opening. No matter how bad that fake twitch that you had was, it's how it feels to someone."

Hrag Pailian, who taught the class, said he still gets notes from students who remember that lecture.

"She's so matter-of-fact about it," said Pailian, who received his Ph.D. from Hopkins and is now a post-doctoral fellow at Harvard University. "She doesn't play the victim card... and she's very open in talking about it."

Not all of the students in Bullock's department study movement disorders, but many they said they have learned from her. Pailian, for instance, works with human memory, including some of the components of the brain affected by Parkinson's.

"I'd never met anyone who had Parkinson's before so she's kind of been the face of Parkinson's for me," Pailian said. "I'm hoping some of stuff I'll be working on will help Parkinson's patients."

And for Bullock's part, she said her work environment gives her more confidence in combating the condition.

"Because of the sheer volume of scientific terms that I'm made aware of on a regular basis, I feel like I get better grasp on what I'm dealing with by virtue of where I work," she said.

With 31 students at all levels of study, it's a close-knit department. Bullock calls them her "kids" she knows their hobbies and their spouses; they swap recipes and frequently go out for dinner and drinks.

"In our program she's a very, very central person," Pailian, a cognitive neuroscientist, said. "Anything you need, you go to Julie."

About 20 students and faculty have joined Pacing for Parkinson's, which uses the Baltimore Running Festival as its primary fundraiser for Hopkins' movement disorder center. Last year the group had about 300 runners and walkers in the festival, and since its inception in 2009, the organization has raised $656,000 for Parkinson's research.

"It makes us stakeholders in the whole project," Langfus said.

The students bring a young energy to the group, Bullock said. She and her husband Brandon have served on the organization's executive board for the last two years.

Corbin Cunningham, 29, is a fifth-year Ph.D. candidate in Bullock's department studying attention and perspective. Some of his work involves interaction with patients, and he said it's been valuable working with Bullock as he considers what impacts his work could have on other cognitive functions.

"Neuro-psychological diseases often are inter-related in terms of certain symptoms, and so it's always kind of interesting to get Julie's perspective, being someone who's like, 'This is what it feels like, this is what it's like,'" he said. "And so it's interesting to think about that and in terms, too, of like, what am I doing right now, and what potential linkages are impacted?"

Estimates vary as to how many people are living with Parkinson's because the disease can be hard to diagnose and conflated with other conditions. Dr. Zoltan Mari, director of Hopkins' Parkinson's Disease and Movement Disorders Center, puts the number conservatively between 700,000 and 800,000 people in the United States, but some estimates run higher than 1 million. Up to 60,000 new people are diagnosed in the U.S. every year.

The average age for diagnosis is 62, according to the National Parkinson Foundation, but Mari said it's not uncommon for people in their early 40s, like Bullock was, to be diagnosed.

"I find this myth when I talk to laypeople that '40s it's just so outrageous and it's very rare.' It's not rare at all," he said.

Still, Bullock doesn't picture herself when she thinks of Parkinson's.

"There's a typical vision when someone thinks of a Parkinson's patient," she said. "I don't think that's who I am."

She defies stereotypes of Parkinson's patients with sharp wit and a healthy dose of humor.

"I think the only person that appreciates my tremor when it gets really bad is the cat," she said.

Bullock, a San Francisco native, first noticed a tremor in her hand when she was in her 30s. A resting tremor (movement in a muscle when a person isn't actively using it) on one side of the body is a common early Parkinson's symptom. Other signs include a lack of swinging in one arm when a person walks, loss of dexterity, problems walking and balancing, losing sense of smell (anosmia) and REM behavior disorder, which causes people to move and talk in their sleep.

Bullock was originally diagnosed with an essential tremor, a common movement disorder that causes shaking. She got a second opinion and a correct diagnosis when she became part of a clinical trial Mari was running for people with Parkinson's to test a possible treatment for the disease. The study found the drug was not effective.

Drugs and other therapies can treat the symptoms of Parkinson's. Deep-brain stimulation, for example, uses electrodes implanted in the brain to block abnormal nerve signals that cause shaking. And deep-brain ultrasound therapy is another new treatment that uses targeted ultrasound waves to destroy damaged brain tissue to calm tremors.

Nine of the 27 pills Bullock takes daily work to control her tremor. But there's no cure for Parkinson's and no treatment to slow its progress. Although few breakthroughs have been made in Parkinson's treatment during the last several decades, Mari is hopeful multiple treatments will become available soon to curb Parkinson's itself, rather than its symptoms.

"I really believe that we will have some major breakthrough within five years," Mari said. "So I would put and I am putting a lot of money on [it]."

Parkinson's affects people differently, and there's no way to how quickly it will progress. Bullock takes comfort in that. Eventually, patients can lose the ability to speak and swallow.

"I'm not in denial, I know what my future could look like," Bullock said. "I don't know what's going to happen but I don't think waiting around for something to occur good, bad or otherwise is the answer."

Since her diagnosis, Bullock said she's had to make few adjustments. She's lost some fine motor skills writing by hand is a challenge; she switched to using an electric toothbrush; and she can't use a whisk.

"I can't shake my own martini, but I can damn well drink 'em," she said.

Pacing for Parkinson's held a cocktail contest the aptly named "Shake Off" last year at Argosy Cafe, and the group is bringing it back at Cosima later this month. It's part of Bullock's effort to expand the group's fundraising beyond the running festival.

She and Brandon, avid foodies who met on a message board for fans of Alton Brown's "Good Eats," have paired their passion for food with the cause, making jams, pickles, pulled pork and cinnamon buns under the brand "Frankly My Dear..." in exchange for donations.

"Food brings people together," she said. "Food makes things OK."

Brandon estimates they've made around 120 flavors of jam, experimenting with combinations ranging from smoked cherry to bourbon brown sugar peach.

Julie said she's raised about $25,000 since she got involved with Pacing for Parkinson's in 2012. She's aiming for $8,000 this year and is partnering with local restaurants including Paulie Gee's, Blue Hill Tavern and Gertrude's throughout April, Parkinson's Awareness Month, to raise funds.

It can be a tough sell because Parkinson's is not a glamorous cause, Brandon Bullock said.

"If you're fundraising for at-risk kids or homeless pets, I think it's easier to get a positive response from the community than it is [for]what we sometimes refer to as 'shaky old people.' And that's the public perception of Parkinson's I think," he said. "We don't see a lot of people like Julie with Parkinson's, but they're out there."

Whether cruising in her Mazda Miata or sipping margaritas with her students, she's happy to challenge that image.

"Again, when I think of Parkinson's, I don't come to mind," she said. "And I'm still very OK with that."

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Pacing for Parkinson's is hosting a series of fundraisers at restaurants and other venues throughout April, Parkinson's Awareness Month.

April 11: Paulie Gee's in Hampden (3535 Chestnut Ave.) will host "Pizzas for Parkinson's" from 5 p.m. to 10 p.m., donating 10 percent of gross food and drink sales to the organization.

April 22: The Orioles will donate $5 per ticket purchased for the Orioles- Red Sox game through orioles.com/tix/parkinsons to Pacing for Parkinson's.

April 27: Cosima in Mill No. 1 (3000 Falls Road) will host "The Shake Off 2.0" cocktail competition from 5 p.m.-9 p.m. for Pacing for Parkinson's.

Throughout April: Blue Hill Tavern in Canton (938 S. Conkling St.) will donate $1 from every Chateaubriand for two ordered. Gertrude's at the Baltimore Museum of Art (10 Art Museum Drive) will donate $1 from every crab quiche it sells. And Alizee American Bistro (4 W. University Parkway) will donate $1 from each fried pickles appetizer and $2 from every jambalaya pasta plate it serves.

Source: Pacing for Parkinson's

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Johns Hopkins secretary helps students, faculty see Parkinson's disease from patient's perspective - Baltimore Sun