About 1 million Americans live with Parkinson’s disease (PD), according to the National Institutes of Health. The progressive neurological disease causes a variety of motor and nonmotor symptoms, most commonly tremor, slowness and stiffness. Balance and cognitive problems also can occur, and as the disease worsens, individuals find their ability to perform the tasks of daily living becomes increasingly difficult without assistance.
For St. Louis area PD patients and those who care for them, the Greater St. Louis Chapter of the American Parkinson Disease Association (APDA) provides a lifeline. “We have turned our attention to empowering individuals to live well and make their quality of life better instead of just waiting for a cure,” says the chapter’s executive director, Deborah Guyer.
The national APDA, established in 1961, is the nation’s largest grassroots organization serving those with the affliction, Guyer says. “Our local greater St. Louis chapter was chartered in 1984 and has grown to be the largest APDA chapter in the nation. We annually serve approximately 12,000 people with Parkinson’s in Missouri and southern Illinois and serve as a model for other APDA chapters,” she adds.
Guyer, along with her small staff and team of volunteers, works directly with people who have Parkinson’s and their families to answer questions and provide support as they learn to live with and adapt to the disease.
“After receiving a Parkinson’s diagnosis, people are seeking information about how the diagnosis will impact their lives, their occupations, their families,” she says. “The amount of information on the internet can be overwhelming and is often conflicting. The APDA is a trusted source for the most current information about PD. We also connect people to support networks, including support groups and exercise classes in their local communities.”
Support groups and free exercise classes through the APDA are facilitated by individuals who have received specialized training in working with PD patients and their families. Because exercise has been shown to benefit people with the affliction, APDA offers 16 different classes, including stretching, yoga, tai chi, aquatic exercise and more at locations throughout the greater St. Louis area. “For those unable to attend classes, we have produced an exercise [DVD] for home use,” Guyer says.
Quarterly PD-education programs cover various aspects of the disease and methods for coping. Vocal exercises, group singing and instrument-playing, called Tremble Clefs, are physically therapeutic and provide friendship and support for participants.
Many of these activities occur at the chapter’s Parkinson Community Resource Center, located in Chesterfield. In addition to providing a common place to connect; socialize; and attend classes, wellness seminars and support groups, it offers a library full of books, magazines and videos on a range of topics related to the affliction.
“We are the only PD resource here in St. Louis,” Guyer says. “PD is a unique neurodegenerative disorder that is very different from some of the other common neurological disorders, such as Alzheimer’s disease or ALS, so having a designated place where people with PD can get resources is a huge bonus. In addition, the fact that we are local makes our center able to provide hands-on access to materials, classes and people and able to identify specific needs of this PD community in St. Louis and provide for those needs.”
The chapter provides funding for ongoing research. “We provide a grant of $100,000 annually to the APDA Center for Advanced Research at Washington University School of Medicine, under the direction of Dr. Joel Perlmutter, our medical director,” Guyer says. “We have advanced research efforts in Parkinson’s disease through continued advocacy, such as encouraging participation in clinical trials and funding promising clinicians and scientists both here and around the country.”
One of only eight APDA Centers for Advanced Research across the country, the center at Washington University has provided pilot data for six currently funded National Institutes of Health grants and studied biomarkers for PD and cognitive impairment, as well as participated in research on exercise, emphasizing gait and balance. The chapter’s Scientific Advisory Board reviews scientific projects and helps determine where to allocate research funds. Additional funds help support postdoctoral and junior researchers.
As the American population ages and more people are diagnosed with PD, which is more common in older people, the organization grows with it. “Numbers are definitely increasing,” Guyer says. “We are currently in the process of expanding our resource-center space so that we can accommodate even more exercise programming and adaptive equipment to make the challenge of living well with Parkinson’s a realistic goal.”
Although there is no good time to have the affliction, “This is the most hopeful time in our history to have it,” Guyer says. “PD is something that you live with, not that you die from, so we are here to help make living with the disease easier.”
Greater St. Louis Chapter of the American Parkinson Disease Association (main office), 1415 Elbridge Payne Road, #150, Chesterfield, 636-778-3377, stlapda.org
Volunteer Spotlight – Craig Miller
Craig Miller’s mother was diagnosed with Parkinson’s disease 15 years ago. Looking to help his mother fight the disease, Miller found information indicating that tai chi was beneficial, “and trying to be a good son, I thought I would take my mom to a few tai chi classes to get her interested.” Miller attended a few classes with his mother, not intending to continue himself, but hoping that she would.
“It turned out that I felt better when I did tai chi, and Mom felt better, so she and I did that together for the rest of her life,” he says. In fact, Miller became so involved he began teaching the exercise that promotes serenity through gentle, flowing movements. At the same time, he began attending support groups at the Greater St. Louis Chapter of the American Parkinson Disease Association (APDA), where he says a reoccurring theme that arose involved problems people with Parkinson’s faced regarding balance, stiffness and posture.
Miller shared his knowledge and experience of how tai chi had helped his mother at his APDA support group, and the concept was met with interest. Before long, Debbie Guyer, executive director of the Greater St. Louis Chapter of the APDA, asked Miller to begin teaching tai chi as a new addition to the other APDA exercise classes. “Now I teach one meditation class and three tai chi classes every week for the APDA,” Miller says. He estimates he has about 50 students per week and finds the movement and meditation, in the form of progressive relaxation, help ease muscle rigidity and tremors.
Miller’s mother died two years ago, and he notes that “for 13 years, we did tai chi together on a weekly basis. It was a blessing, and I feel continuing to teach is a great way to honor my mother.”
Miller encourages everyone who has Parkinson’s disease and their caregivers to take advantage of all the Greater St. Louis Chapter of the APDA has to offer. “I think a lot of people don’t know the APDA even exists here or how much it does,” he says. “All the resources are absolutely amazing. It’s such a gift.”
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