Parkinson Foundation Western Pennsylvania steps out to boost support
When Brian Jay sought a diagnosis for body stiffness tremors about 12 years ago, a neurologist told the then-24-year-old that he was probably suffering from pre-wedding jitters.
When he sought a diagnosis for the persistent medical problems a year later, another neurologist told him that he had early-onset Parkinson's disease, a progressive disorder of the nervous system that typically affects people 60 and older.
Four years ago, to control his symptoms, Jay underwent deep brain stimulation. A battery-operated medical system was implanted in his brain and under the skin of his chest to deliver electrical stimulation to control body movement. He is responding well to the surgery and his medication, he said.
“I'm one of the guys that takes one day at a time. … I like to live my life as it comes,” said Jay, 36, a married West View father of two daughters.
The Parkinson Foundation Western Pennsylvania is working to educate the public about the disease, which includes changing perceptions, especially in April, which is Parkinson's Disease Awareness Month.
“The main message is the fact that the face of Parkinson's disease is changing, and we want to make people aware that Parkinson's disease is something you live with,” said Barbara Farrell, executive director of the Ross-based foundation.
The Parkinson Foundation's April awareness events included partnering with a business fraternity, Alpha Kappa Psi, from Miami University of Ohio on Friday to distribute informational postcards and tulips, the latter of which is the international symbol for Parkinson's, at five Pittsburgh-area locations, including Katz Plaza in the Cultural District, Lawrenceville and SouthSide Works.
The group wore T-shirts featuring the foundation's new hashtag campaign, #GracetoGive, which asks potential donors to “find the grace to give” to the foundation.
Catherine Wertz, 20, a sophomore from Upper St. Clair, was one of the fraternity members handing out tulips and postcards at Katz Plaza on Friday.
She has seen the physical effects of Parkinson's disease on her grandfather, Ron Wertz, former president of the Hillman Foundation. She also has seen him continue to live an active life.
“He kind of uses Parkinson's to live his life to the fullest. He travels frequently. He's always helping my nana around the house,” she said.
The foundation's other awareness initiatives planned for April include 13 billboards going up across Pittsburgh on Monday that feature the hashtag and direct readers to the foundation's website. Public service announcements will air on TV and KDKA Radio.
The foundation provides support groups, exercise programs, educational sessions and other programs for about 13,000 people — both those with Parkinson's and their caregivers.
The foundation's annual budget of $386,000 is funded by grants and donations, Farrell said.
“I think that people are more aware that we're out there. I think for a long time we didn't have a voice. We were very quiet about what we did,” Farrell said.
Among the foundation's long-term goals is to buy the building it has been leasing on Babcock Boulevard since 2011 and renovate it to provide more on-site programs and services. In the short-term, it plans to hire a part-time employee to help lead a “drop-in” center where caregivers can bring patients for a few hours to participate in exercises, arts and crafts and educational activities, Farrell said.
Tory N. Parrish is a staff writer for Trib Total Media. She can be reached at 412-380-5662 or [email protected].