May 27, 2024
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The Parkinsons Wellness Project Targets Loss Of Movement With Structured Exercise

Maurice and Susan Lust on the set of the music video for “I Got You.”

It seems counterintuitive, but the best treatment for Parkinson’s disease is exercise. Parkinson’s is a progressive disease that affects the nervous system and the parts of the body controlled by the nerves. Medicine can only help control the symptoms. Exercise can slow progression of the disease and improve quality of life.

Susan Lust, a professional dancer, and her husband, Maurice Lust, started the Parkinsons Wellness Project (PWP) to give people with the illness a structured and enjoyable way to exercise and stay upbeat. The program has three exercise classes for men and three for women every week. The classes get the body moving. The emotional lift from interacting with others keeps people coming back. “People with Parkinson’s need to exercise every day,” said Susan Lust. “Exercise has been shown to slow progression.”

She studied dance at Boston Conservatory of Music and received a bachelor’s degree in dance and theater from Bard College. From the start of her professional life, she was interested in using dance to help people. Lust became a certified dance therapist from The New York Medical College and taught creative movement to young adults with special needs.

Arlon Bennett singing.

She started teaching dance to people with Parkinson’s about 16 years ago. “I was inspired by them,” she said. “They were struggling so hard with something I loved so much—movement and music—and I knew this was something they needed. They need rhythm in their life, because their rhythms have changed; they need movement because their bodies are stiff and contracting. This disease contracts every part of your body. So you have to fight back and fight those impulses which are caused by a lack of dopamine. You have to be a warrior, not a worrier.”

Lust’s students introduced her to the Mark Morris Dance Company, where dancers were learning how to work with Parkinson’s patients in a way that’s creative and fun. She called the company and took a course with them. She has been teaching the same style ever since. “These teachers spoke my language and helped me teach people with Parkinson’s,” Lust said. “It’s all about how to live well with this chronic, progressive disease. You have to be disciplined and motivated, and have a positive attitude. Most important is to reach out to others and stop being afraid to let people know. People who are diagnosed often have unknowingly had the disease for many years. It’s important to start on an exercise program as soon as possible.”

When COVID hit, Lust hired teachers and started working with her husband to produce programs for people with Parkinson’s. The nonprofit Parkinsons Wellness Project developed from their shared interests and complementary abilities. After coming up with ideas together, Lust takes on the role of executive producer and account director to develop program content. Maurice Lust is both the IT and creative director, writing and keeping up the website, and developing all promotional materials. One of their first events was to partner with the Jewish Home at Rockleigh to bring in Israeli teacher and author Alex Kerten, who wrote “Goodbye Parkinson’s, Hello Life.”

One of the teachers at the Parkinsons Wellness Project is also a patient. Alex Tressor is a jazz and ballet master. He was diagnosed in 2007 and spent two years testing out exercise routines on himself. “Doctors would tell me I have to exercise, but they didn’t go beyond that. They weren’t keen on explaining how,” he said.

Coach Yuri in the studio.

After learning what worked and what didn’t, he began to share his methods with others. “I use my natural balance being a dancer but not the same ballet exercises,” he said. “I wouldn’t be able to walk again!” He concentrates on exercises to target the specific parts of the body that need help. “Parkinson’s attacks the extremities. You see people shaking or their feet are delayed. I have a narrow focus on a body part—the calf, thigh, hips. I try to improve their balance and work with them to get stronger.”

Attitude and perseverance are essential. “The phrase ‘I can’t do it’ doesn’t exist for me,” Tressor said. “Some people only exercise lying on the floor. But it’s amazing what people can do if they’re consistent and get stronger. People have come who are bedridden and should be in a wheelchair. I make them understand what they can do and how they can do more.”

Yuri Milshtein teaches boxing and martial arts to people who want to gain confidence in defending themselves. Lust reached out to him about teaching for the Parkinsons Wellness Project after hearing about him from her daughter, who was friendly with one of his students. “Susan showed me a video about Rock Steady Boxing, a non-contact, boxing-based fitness curriculum, from another program,” he said. “I told her I do that already.”

Over the last five years, he got to know more about Parkinson’s disease and made sure his approach was beneficial. Parkinson’s makes people move less and take smaller steps. Boxing is about stability and bigger movements. It’s forced intensity. “The move has to have force, you move with a purpose, because small movements don’t reach as far. Gradually the movements change,” he explained. “In boxing, you have an opponent. We treat Parkinson’s as an opponent. A fighter goes into a match and trains hard to defeat his opponent. I use the same approach.”

Milshtein has seen people come in wheelchairs and two weeks later come with a walker. He pushes them to put in the effort. “The effort has to come from within,” he said. “They see so many things they can’t imagine doing. But the body can do it. Parkinson’s is impeding their desire. They have to fight harder. They think they can’t move their foot or move their knee. Parkinson’s is not letting the message get through. You must have that push. In a gym there are machines but no one is there to push you or motivate you. Most people don’t have the willpower. In my class, we don’t let you walk out. We have fun. I teach real techniques, and they gain confidence. They learn all these skills and practice.”

Some of Milshtein’s students get better and some stay the same—which is almost as good since it indicates the disease may not be progressing. “I see success. I get feedback from doctors and family members that they notice a change and the person is doing better.”

In addition to exercise classes, PWP conducts webinars, and connects newly diagnosed people with doctors and therapists. The fall schedule will include a four week series on nutrition and postural therapy. The classes have recently started to receive funding from the Rockland County Health Department.

PWP also holds events for the public. As a way to bring awareness and inspiration to Parkinson’s patients, Supernus Pharmaceuticals started an initiative to encourage people to plant tulips, and send them photos to show at the World Parkinson’s Congress, held every three years. Maurice, Susan and community volunteers planted 4,000 tulip bulbs at the entrance to the Clover Stadium in Pomona in 2021 and 2022. The area is becoming the Garden of Hope, a year-round space for quiet contemplation, accessed by “A Path to a Cure,” a walkway made of bricks that are sponsored to raise funds for PWP with messages of support.

For the World Parkinson’s Conference taking place this week, July 4-7 in Barcelona, PWP sent a music video they produced with Rockland County singer/songwriter Arlon Bennett, who has Parkinson’s. Bennett sings “I Got You!,” his original song dedicated to caregivers everywhere. The dreamy video, which can be viewed on the PWP website, includes beautiful tulips, dancing and music, and features PWP dance teachers and patients.

For more information about the Parkinsons Wellness Project, visit https://parkinsonswellnessproject.org or call 845-300-4511.

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