Since New Jersey State Director Myra Hirschhorn first heard about the Parkinson’s Action Network (PAN) 10 years ago, she has become a fierce advocate and leader for people with Parkinson’s disease in her local community and the state of New Jersey.
Myra was the first to notice a tremor in her husband’s hand about 15 years ago and told him he should get it checked out. She was familiar with Parkinson’s because her grandmother also had the disease. After her husband received his diagnosis, she said things didn’t change right away. His symptoms weren’t too severe and he was able to continue working for about seven more years. But she wanted to learn more and started going to support group meetings at Virtua Memorial Hospital in Mt. Holly, NJ. She also attended a meeting of the NJ chapter of the American Parkinson’s Disease Association, where she saw PAN CEO Amy Comstock Rick speak.
At the time, the thought of going to Washington to advocate on behalf of her husband and others with Parkinson’s in NJ seemed intimidating. But about four years ago, she retired and had more time on her hands. Then she saw the opportunity to receive a scholarship to attend the PAN Forum in Washington, DC. She thought, why not?
“It’s such a rewarding experience,” Myra said about meeting with her Members of Congress. “By advocating, I feel like I’m getting more control and learning what’s going on. It’s exciting to be part of that and be aware.”
Since getting involved with PAN, Myra said she’s able to provide her support groups a lot more information about what is available to them. Recently, she’s taken her experiences with PAN and translated them to benefit her own issues with leukemia. She’s currently in remission, but earlier this month she was able to use her experience with PAN to return to the Hill and start advocating with The Leukemia & Lymphoma Society.
In addition to contacting her Members of Congress, Myra continues to be active in her local community organizing support groups, sharing resources, and distributing information about PAN and other Parkinson’s disease organizations at health fairs and other events.
Also, in early December she encouraged occupational therapists and physical therapists at a LSVT-BIG training to sign on as PAN advocates to work towards removing the Medicare therapy caps. LSVT-BIG is the therapy used to promote high-amplitude movements in people with Parkinson’s disease.
Myra said she’s happy to continue to show people with Parkinson’s that there are plenty of resources for them. She said she thanks PAN for its leadership in that.
“I really do support all that PAN does and appreciate all that it’s doing and what good direction we’ve had through [PAN’s CEO], Amy, all these years,” she said. “When you think of PAN as a small group and how much they do, it’s just incredible!”