(Originally published in Foundations, Winter 2007, Volume 6, Issue 2)
“It’s hard to give money away,” says Rosalyn Newman. “You have to carefully choose the right charity, the right person. I choose Lisa.”
Newman - mother, lawyer, philanthropist - walked into Dr. Lisa Shulman’s life some 15 years ago via a circuitous route. Newman was diagnosed with Parkinson’s disease in 1989. “The first doctor? I don’t know if I didn’t like him because of the diagnosis or because he was generally a dislikeable sort,” says Newman. “He said, ‘You’ve got Parkinson’s.’ Just like that. And I said, ‘You’re nuts.’”
There was never any question about it. Newman intended to fight the disease with all the force she could muster. But she wasn’t about to go into battle with just any neurologist. She left New York, found a Dr. Lieberman in Phoenix who mentioned a Dr. Shulman in Miami.
“Initially she came to Miami to participate in a study of a new drug for Parkinson’s disease,” says Dr. Shulman, associate professor of Neurology, co-director of The Maryland Parkinson’s Disease and Movement Disorders Center and The Rosalyn Newman Distinguished Scholar in Parkinson’s Disease at the University of Maryland School of Medicine. “She lived in Palm Beach and regularly took two trains to travel to the Parkinson’s clinic in Miami.”
“I’m a quick study,” says Newman. “I loved her immediately.” Every time Newman visited the clinic, she brought yogurt shakes to share with Dr. Shulman and her assistant. “That’s how we got to know each other. Over yogurt shakes.”
At the conclusion of the drug study, Newman described an interest in funding a study of alternative therapies for Parkinson’s disease. In response, Dr. Shulman designed a study of acupuncture for Parkinson’s symptoms and presented it, explaining that clinical trials are costly. Newman asked, “How much?”
“To my surprise, the very next day she was in my office with the check,” says Dr. Shulman, “and our research collaboration began.”
It turned out that acupuncture was not effective for Parkinson’s disease, but the relationship between the two women strengthened. Newman was impressed with the systematic and efficient manner with which the study was conducted, and found satisfaction in her involvement, from the inception of the study idea to publication of the results in a national journal. This experience led Newman to establish an endowment within her private foundation in Dr. Shulman’s name, to fund her research. Newman has complete faith in Dr. Shulman, trusting her to use the money wisely to seed investigative studies in Parkinson’s disease.
Unbeknownst to Newman was Dr. Shulman’s appointment to a federal post in Washington D.C., a one-year fellowship in health policy in the House of Representatives. When Newman presented the idea of the endowment to Dr. Shulman, she had to tactfully decline because of her previous commitment. “It is not every day that someone comes to you and offers such a gift,” says Dr. Shulman,“but I had to turn it down — at least temporarily.”
With her irrepressible optimism, Newman put a positive spin on the situation. “Someone else had already recognized how great she was. I was thrilled.” The money sat with the Newman Foundation until Dr. Shulman was ready to take a position with an institution and continue her work in Parkinson’s disease.
BRANCHES OF A TREE
In 2000, Dr. Shulman brought her work to the Department of Neurology at the University of Maryland School of Medicine, and Newman’s unique endowment was soon put to good use. Dr. Shulman’s immediate goal was to create a comprehensive patient database for the University of Maryland Parkinson’s Disease and Movement Disorders Center. Born of a collaboration of five faculty members, the center has grown to be the largest in the region and draws patients from Maryland’s Eastern Shore, Virginia, Washington D.C., Delaware, Pennsylvania and New Jersey.
“Her gift enabled me to establish the infrastructure to track the progress of all patients visiting the Movement Disorders Center,” says Dr. Shulman. The center began collecting data about three and a half years ago. All patients who visit the center are assessed using a variety of scales and questionnaires. With each subsequent visit the patients add information to the database. Using this information, the physicians can closely monitor over time how each patient is doing in terms of disease severity, mental health, disability,daily functioning and overall quality of life.
“It is a unique situation,” says Dr. Shulman, “to be able to capture all this data and have access to it for patient care and research. While more than half the database is devoted to assessment of patients with Parkinson’s disease, many other neurological disorders are also represented —Alzheimer’s disease, Essential Tremor, Huntington’s disease, depression and the full range of movement disorders. The database now contains 2,500 patients with over 6,500 office visits. “The year of training in health policy convinced me of the importance of tracking meaningful health outcomes of disability and quality of life, rather than focusing solely on improvement of symptoms,” says Dr. Shulman.
“The database continues to grow and spawn new insights and opportunities,” says Dr. Shulman. “We have presented analyses of this data at symposia and conferences nationally and internationally. This unique resource is attracting increasing attention.” In the last year the data has reached a “critical mass,” and as word has spread through the medical community, medical students, graduate students, residents, junior faculty and even pharmaceutical firms have contacted the center requesting permission to use the data for various research projects. The center now employs two full-time research assistants — wholly subsidized through the Newman gift — who greet patients, explain the value of the project and help them complete the questionnaires.
“This is a growing treasure that can be used in so many ways to advance the body of knowledge concerning Parkinson’s and related diseases,” says Dr. Shulman.
PASSION FOR IMPROVING LIVES
Dr. Shulman uses the database as an essential resource for her own extensive research in the field of Parkinson’s. She is especially interested in improving the quality of life of Parkinson’s patients. “Our culture tends to focus on the headlines of curing disease; often neglecting the importance of improving the daily lives of our patients. Certainly there are many promising areas of research that may lead to major breakthroughs,” says Dr. Shulman. “But it is equally important to conduct research on how people can live well with the symptoms in the here and now. We need to find better ways to help people cope, to function better and to maintain a higher quality of life while living with Parkinson’s disease.”
Dr. Shulman studies both the physical and psychological ramifications of Parkinson’s disease. She is seeking answers to what were once elusive and unasked questions. How do individuals cope with the initial diagnosis? How do daily lives change as a result of the disease? What is the significance of personality, attitude and optimism in dealing with the disease? How does the relationship between spouse and patient affect daily life and symptoms? And what type of health care fosters optimum function and quality of life?
Because functional status determines many of the clinical decisions in Parkinson’s disease, Dr. Shulman conducts structured performance tests of walking, eating, dressing, medication management and other daily activities. She found that patients with early symptoms are more likely to underestimate their reports of disability, while patients with more advanced symptoms often overestimate their disability. In another study she determined that optimism and internal locus of control are associated with less disability and greater quality of life. And in yet another study, self-efficacy (confidence in one’s ability to manage one’s daily activities) had the greatest single impact on reports of disability and quality of life.
IT’S ALL ATTITUDE
Rosalyn Newman is a prime example of the role attitude and optimism play in coping with the disease. When a doctor explained to her that Parkinson’s disease results in the death of brain cells involved in motor function, Newman replied, “Doctor, I choose to think that they are simply sleeping.” Disarmed, his retort was, “Your guess is as good as mine.” “Indeed, Mrs. Newman’s approach to Parkinson’s disease embodies the goals of the research that was made possible by her generosity,” says Dr. Shulman.
“I get up every morning and I say to myself, ‘You will not hurt today. You will get up without pain and you will have a great day.’” Newman is now dealing with dyskinesia, a symptom that manifests itself with involuntary movements that affect the whole body. “I can stop moving if I want to,” Newman said in a recent interview, “I just have to focus on it.” And with that she centered herself, folded her hands into her lap and remained motionless.
“We are still in the early stages of measuring the impact of behavioral factors such as resilience and optimism in Parkinson’s disease,” says Dr. Shulman. “We are beginning to see that these factors make a difference, but are still asking, how do they make a difference? How do we foster new attitudes in Parkinson’s patients? We are starting to look at things we never would have been able to look at before because of this database.”
WORTHWHILE GIVING HELPS
But it is not just for research. With the information gathered at each patient visit, the center puts together an instant snapshot of the patient and uses this information to fine tune and improve patient management and outcomes. Often, the data raises red flags and the physicians can detect individuals who are suffering from depression or who may need assistance in the home. Increasingly, we are able to recognize symptoms and trends that previously would not have been possible.
“None of this would have happened without Mrs. Newman’s faith, trust, vision and generosity,” says Dr. Shulman. “As time goes by, the broader implications of a single gift from one patient to one physician becomes clearer. These funds have given me the time and resources to explore new areas of inquiry. And the more we publish our results, the more we attract others to add to this body of knowledge.”
Already, these early preliminary studies have resulted in the awarding of a Michael J. Fox Foundation grant to study the effect of exercise on the motor and non-motor symptoms of Parkinson’s disease, and plans are underway to apply for an NIH grant in the near future.
“She has made all these things possible,” says Dr. Shulman. “Because I am fortunate enough to have it, I want to share it,” says Newman. “Worthwhile giving helps so many people.”