April 11 was World Parkinson’s Day, with advocacy groups in countries all over the world hosting activities to raise awareness about the strides being made to combat Parkinson’s disease. Iconic buildings were lit up in blue to “spark the night” for Parkinson’s awareness.
Drivers near or over the Mario Cuomo (Tappan Zee) Bridge saw its blue lights blazing in the nighttime sky. The bridge lighting was arranged by the Parkinsons Wellness Project, a unique Rockland County-based group founded in 2019 that helps people with Parkinson’s and their caregivers learn about the best treatment, improve their lives and keep up with the latest research. Parkinsons Wellness Project joined with advocacy groups around the world for World Parkinson’s Day.
The Parkinsons Wellness Project was honored by the county on April 11 at Clover Stadium in Pomona, New York. Area dignitaries, people with Parkinson’s and caregivers who have benefited from the group’s work gathered in a box overlooking the Clover Stadium field to hear presentations. Proclamations were presented to Parkinsons Wellness Project CCO Susan Lust and Executive Director Maurice Lust by Rockland County Executive Ed Day, Legislator Aney Paul (District 14), and Town of Ramapo Supervisor Michael Specht.
In his remarks to the audience before presenting his proclamation also acknowledging April as Parkinson’s Awareness Month, Day said, “Today, as we reflect on World Parkinson’s Day, it’s imperative that we not only raise awareness about this complex condition but also stand in solidarity with those who are affected by it. Let’s acknowledge the remarkable resilience of individuals living with Parkinson’s, as well as their caregivers and loved ones.”
The proclamation presented by Paul, signed by the Honorable Jay Hood Jr., chairman of the legislature, recognized the Parkinsons Wellness Project for its work on behalf of people living with Parkinson’s. “Parkinsons Wellness Project offers updates on the latest research and medications, promotes best practices in diet, exercise and social well-being for individuals with Parkinson’s disease, and is dedicated to helping people with Parkinson’s live the best possible life. Parkinsons Wellness Project also works to reduce tension and fear by demystifying Parkinson’s disease and overcoming the physical, mental and emotional challenge that Parkinson’s brings.”
The proclamation presented by Specht named April 11, 2024 National Parkinson’s Awareness Day in the town of Ramapo, stated that Parkinsons Wellness Project “leverages the power of technology and communication to bring informative and inspiring events either through in person conferences in the tri-state New York City region or online webinars anywhere.”
The program also honored Harriet Cornell, former Rockland County legislator, and Michael Hoblin, Rockland County deputy executive. Cornell first got involved with Parkinsons Wellness Project due to having a good friend with Parkinson’s disease and recognizing the need for a dedicated advocacy organization in Rockland.
Hoblin cared for his father who had Parkinson’s. He initially met Lust at the launch of an initiative she started at Clover Stadium to plant a large garden of multicolor tulips, the official flower of Parkinson’s, and he immediately recognized the value of her work. He made the arrangements for the Mario Cuomo (Tappan Zee) Bridge to be lit up that night. “Susan does so much so fast to bring awareness to Parkinson’s,” he said in a phone interview with The Jewish Link. “She brings people together and is helping to change the narrative to one of finding a path to a cure instead of just accepting and living with Parkinson’s. I appreciate the hard work being done by the Parkinsons Wellness Project to shed light on this illness and push for a cure.”
In her remarks, Lust talked about breaking the fear and stigma of Parkinson’s disease with all the programs they have to offer — workout classes, educational events, referrals to doctors and therapists and a new program for women who are caregivers for their spouses who have Parkinson’s disease. Parkinsons Wellness Project events help people with Parkinson’s feel less alone and gives them an opportunity to create new, meaningful friendships. In a conversation after the event, Lust said, “I’m grateful the county is recognizing us and helping us reach more people living with Parkinson’s.”
Dr. Phil Schneider, a speech pathologist who works with people who have Parkinson’s and was diagnosed himself nine years ago, shared with The Jewish Link, “Parkinsons Wellness Project makes it their mission to help you help yourself,” he said in a phone interview. “Parkinson’s is isolating by nature; it pulls you inward so you don’t feel like being with people. This group pushed me. My tendency was to slow down. It opened a door and gave me a whole new specialty helping people with Parkinson’s.”
Schneider said the classes and workshops the group runs with experts give him new tools to help himself. “I went to a class one Sunday with an expert on sleep issues. I came away motivated to make changes. Same with breathing exercises; I never thought about it in terms of Parkinson’s. If it wasn’t for Parkinsons Wellness Project, there are a lot of things I wouldn’t be doing. On top of that, the organization accommodates Orthodox Jews with kosher food at its events and has programs for men and women separately.”
Parkinson’s disease is a progressive neurological disorder of the brain that results from a loss of cells that produce dopamine. Loss of this neurotransmitter causes instability of posture or balance, gait difficulty, stiffness or rigidity of the arms, legs or neck, general slowness of movement and tremors or trembling. Other symptoms may include depression, mental confusion, difficulty writing and speech problems.
Parkinsons Wellness Program has two programs for the public coming up at the Crown Plaza Hotel in Suffern, New York. “Discover Mount Sinai Multidisciplinary Approach for PD” will take place Sunday, May 5 from 11 a.m.-2 p.m. and “Discover Columbia University Medical Center Patient Empowerment, Research, Advanced Treatment” will be held Thursday, June 6, from 5-7:30 p.m.
For more information about Parkinsons Wellness Project visit parkinsonswellnessproject.org.
Bracha Schwartz is special sections editor at the Jewish Link.
