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Parkinson's Disease

Research

Parkinson's Patient Active as Research Advocate

Joel Grace
Photo courtesy of Parkinson's Disease Foundation

About three years ago, Joel Grace, then 75, noticed twitching in the fingers on his left hand as he sat at his computer. Mild at first, the twitching made him suspicious that something was going on that he ought to have checked out. His doctor quickly diagnosed him with Parkinson's disease (PD).

Today, the widower who lives in southern New York state says that he is "mildly impaired" by PD, mostly left-side weakness, with difficulty in his trunk movements, such as turning over in bed or getting in and out of cars. Buttoning shirts can be an issue, and he walks for exercise now, rather than jog.

"I do everything I used to do; it just takes me three times as long," he says with a laugh.

Gaining and Sharing Knowledge

From his diagnosis, Grace made up his mind that he did not want to be a passive PD patient.

"My involvement as a volunteer has made me feel like part of the research team, not just a passive subject."
—Joel Grace"

"I didn't like Parkinson's, and I wanted to do something about it," he says.

He read as much as he could about the disease, and decided that he would like to help others find out information and deal with their own PD as he was doing himself.

He now attends three different Parkinson's support groups in his area, passes along to fellow patients medical and legislative news about PD, and has become an active research advocate through the University of Rochester Medical Center, a Center of Excellence for PD research, and the Parkinson's Disease Foundation, a national nonprofit research organization.

Clinical Trials

With a PhD in research (physiological) psychology, Grace is also able through that training to help as an assistant monitor in clinical trials. Recently, he was selected to help as a data safety and monitoring board member for a clinical trial funded by the NIH's National Institute of Neurological Disorders and Stroke.

"The University of Rochester researchers recommended me to the Parkinson's Disease Foundation to be a research advocate for them, which has been wonderful," he adds. "Being diagnosed with Parkinson's makes you feel somewhat victimized. My involvement as a volunteer has made me feel like part of the research team, not just a passive subject."

The specific clinical trial that involves Grace as a monitor for patient safety is a 60-site clinical study to investigate whether the drug inosine can slow early PD. The University of Rochester Medical Center was selected as the coordinating center for data collection.

"I can't say enough about the University of Rochester Medical Center research team," says Grace. "They have been wonderful."

The National Institute of Neurological Disorders and Stroke (NINDS) conducts PD research in laboratories at the National Institutes of Health and also supports additional research through grants to major medical institutions across the country.

Current NINDS-funded research programs are studying how the disease progresses with a goal of developing new drug therapies. Scientists looking for the cause of PD continue to search for possible environmental factors, such as toxins, that may trigger the disorder, and study genetic factors to determine how defective genes play a role. Other scientists are working to develop new protective drugs that can delay, prevent, or reverse the disease.

Parkinson's Disease Research

No breakthroughs, but steady progress

The NIH's National Institute of Neurological Disorders and Stroke (NINDS) is the nation's leading funder of research on Parkinson's disease (PD). Researchers are working to better understand and diagnose the disease, develop new treatments, and, ultimately, prevent PD.

As these efforts continue, one outcome may be earlier diagnosis of the disease.

"Although there have not yet been definitive research breakthroughs in the identification of diagnostic biomarkers for PD, one important advance is that individual research groups are now coming together to identify other symptoms—such as sleep problems, anxiety, and depression—that may appear before the movement symptoms," says Beth-Anne Sieber, PhD, chair of the Parkinson's Disease Working Group at NINDS.

"The research I see coming together may well help us use these signs and symptoms to help in earlier diagnoses of PD before the tremors and rigidity," she adds.

"[I]ndividual research groups are coming together to identify other symptoms—sleep problems, anxiety, and depression—that may appear before movement symptoms."
—Beth-Anne Sieber, PhD, National Institute of Neurological Disorders and Stroke, NIH

There are clinical trials under way to help alleviate symptoms. "Another area of clinical trials is in how to halt the progression of PD," Sieber says. Other clinical trials relate to exercise and the quality of life for PD patients.

Still other PD research is being carried out through a bold new NIH project that aims to revolutionize understanding of the human brain. It is called the BRAIN Initiative—short for Brain Research through Advancing Innovative Neurotechnologies.

NINDS conducts PD research in laboratories at the NIH in Bethesda, Maryland, and also supports additional research through grants to major medical institutions across the country.

Read More "Parkinson's Disease" Articles

New Research Offers Hope for Better Diagnosis and Treatment / Symptoms and Treatment / Research

Winter 2016 Issue: Volume 10 Number 4 Page 27