Young Parkinson's patients have long-term challenges
September 29, 2010 8:00 AM
Cindy and Skip Goettman of Mars and Dan and Bonnie Goncar listen to a presentation at a meeting of the young-onset Parkinson's disease support club at the Christ Church at Grove Farm in Sewickley.
Michael J. Fox, now 49, was diagnosed with Parkinson's disease while filming "Doc Hollywood" in 1991.
In the movie "Love and Other Drugs," made in Pittsburgh and scheduled for a Nov. 24 release, Anne Hathaway plays a young woman who has young-onset Parkinson's disease. Jake Gyllenhaal plays her boyfriend, who must decide whether he cares enough for her to stand beside her.
By Tina Calabro Special to the Post-Gazette
Last fall, Jake Gyllenhaal and Anne Hathaway came to Pittsburgh to shoot the film "Love and Other Drugs," based on Jamie Reidy's 2005 memoir, "Hard Sell: The Evolution of a Viagra Salesman."
The movie, scheduled for release on Nov. 24, concerns the advent of the outlandishly successful drug for erectile dysfunction and the evolving relationship between a Lothario-like pharmaceutical rep (Mr. Gyllenhaal) and, Maggie, a woman who challenges his modus operandi (Ms. Hathaway).
An element added to the screenplay is Maggie's diagnosis with young-onset Parkinson's disease and the question: Does her lover care enough to accept the uncertainties of the progressive neurological condition?
About 25 local people who have Parkinson's (most with the young-onset type) were recruited as extras for scenes in the film that deal with Maggie's diagnosis. Those who participated say it was not only a chance to watch the film's stars at work, but also an opportunity to participate in a project that raises awareness of how Parkinson's affects younger patients.
The typical age for a Parkinson's diagnosis is 60 or older. The young-onset type is usually diagnosed in patients in their 30s or 40s. Actor Michael J. Fox, who was 30 when he was diagnosed with Parkinson's in the early 1990s, has done much to bring awareness to the early-onset condition.
Parkinson's is a disorder that affects neurons in the brain that control muscle movement and coordination. These neurons, which make a chemical called dopamine, do not work properly. Symptoms include tremors, stiffness, poor balance and coordination. Over time, people with the condition develop problems with many basic activities.
The cause of Parkinson's is unknown. About 10,000 people in the six contiguous counties of Western Pennsylvania have the condition, according to the Parkinson Foundation of Western Pennsylvania.
Parkinson's is not life-threatening, but its symptoms require constant management, said David Von Hofen, director of programs and outreach for the foundation. "It affects quality of life."
People with the young-onset type have to manage those symptoms for a long time, said Susan Baser, medical director of the Spasticity and Movement Disorders Center at Allegheny General Hospital.
She has had the difficult task of delivering a Parkinson's diagnosis to many young adults in her 13 years at the center. Many of them "cry and cry," she said.
"I tell them that younger people are more sensitive to the medicines [than older people] and do very well with them. That they will have a normal life except they have to manage the disease for more years. It's chronic and progressive, but the majority do well. I try to be as positive as I can."
The main medicines used to ease the symptoms of the disease work by increasing the level of dopamine in the brain or by affecting neurotransmitters in the body. Deep brain stimulation is another intervention. Dr. Baser said that promising research is being done on new classes of medications, new ways of delivering nerve growth factors to the brain, genetically modified cells, and new sites for surgery.
She refers patients to support groups such as the young-onset group held in Sewickley, facilitated by the Parkinson Foundation.
Mr. Von Hofen said it's important to offer such support groups because members have different concerns from the typical Parkinson's patient. "These are folks in the prime of their careers and peak earning years," he said. "They are concerned about maintaining health insurance, planning for their families. It's really tricky."
Work issues have been a particular concern for two members of the support group. When Dennis Graham, 62, of Shenango in Lawrence County was diagnosed with Parkinson's in his 50s, he continued in his job as a postal carrier, but recently decided to take an early retirement because he was losing efficiency.
"When my medication starting wearing off [in the midafternoon], I would lose dexterity," he said. "Fingering the mail was difficult, and I was shuffling when I walked."
Baldwin Borough resident Pete Ferrari, 45, also left his job recently. "I had to call off too much," he said about his job as an electronics technician. "I couldn't guarantee how I would feel, so I couldn't guarantee myself to my employer."
Self-care is another big issue in the support group. Emerging research is showing the benefits of exercise for people with Parkinson's, said Mr. Von Hofen, who oversees exercise programs for the foundation in Sewickley, Monroeville, South Hills, the East End and Washington County.
Mr. Ferrari has taken this advice a step further by taking weeklong backpacking trips and writing a book about his experiences.
Diane Acerni, 52, a support group member from Jefferson County, has lived with Parkinson's for 17 years. Among her concerns was how it would affect her children, who were in elementary school in the early years of her diagnosis.
"I didn't want Parkinson's to alter their experience," she said.
Parkinson's also took a toll on Ms. Acerni's marriage. Now divorced, she is happily engaged to a man she met through an online dating site.
"I told him about my Parkinson's before we met," she said. "He didn't know much about it, but he wanted to know more."
Ms. Acerni and others with the early condition say they can relate to the doubts about long-term relationships expressed by Ms. Hathaway's character in "Love and Other Drugs."
Writing on a website devoted to the film, one person with Parkinson's mused: "Early-onset Parkinson's is mostly an inconvenience. ... But it has a future that is unknown and uncomfortable and dehumanizing. So even when you're not very sick, Parkinson's challenges your sense of yourself, knowing that you will someday lose your independence. It also challenges your trust in your partner, no matter how deeply they love you now. Will they really be there for you?"
As the date for the film's release approaches, local people who participated in it say it was an enjoyable experience.
Dr. Baser, who served as medical consultant for the Parkinson's scenes, said it was fun to observe the "choreographed madness" from her perch on a tall director's chair.
One of her jobs was to help Ms. Hathaway look realistic as a person with the condition. Another task was to ensure that the 25 extras with Parkinson's were treated with care during two days of shooting. Most of them were needed for a scene involving a so-called "unconvention" of Parkinson's patients filmed in a social hall on the South Side. A few extras were used in a scene at a doctor's office at Magee-Womens Hospital.
Dr. Baser also was gratified to see that the experience brought people with young-onset Parkinson's together and that seemed to have a therapeutic effect.
"Parkinson's is an old person's disease. The film put a young face on it."