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Creating a Supportive Parkinson's Community
April 1, 2015
Creating a Supportive Parkinson's Community

JF&CS News Spring 2015

Dale & Marilyn OkonowBy 2006, Dale Okonow had become very familiar with the challenges facing people with Parkinson's disease, their families, and their caregivers. His father suffered from the disease for years and Dale knew that while monies were being spent on research to find a much-needed cure, there was little, if anything, being done to help people with Parkinson's and their families cope on a day-to-day basis. “I saw first-hand the severe emotional and physical toll [my father’s] illness took on my mother and the rest of our family. Although my parents lived in Florida, I saw the need in the Boston community for a program that could provide support and comfort to those people in our area who had Parkinson’s, their families, and caregivers,” Dale explains.

“I had been involved in JF&CS as a Board member for several years and had seen the great work JF&CS was doing with similar support programs for the elderly,” adds Dale. That is when he, along with real estate developer and investor Mitchell Robbins, approached Sy Friedland, who was the CEO of JF&CS at the time, with their vision for the Parkinson’s Family Support program. With both of their fathers suffering from the disease, Dale and Mitchell understood the need for such a program, and together they provided the seed money for it.

    

Join the Okonows in supporting the Parkinson’s Family Support program. 

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Thanks to the Okonow and Robbins families, JF&CS has been providing a supportive community for people with Parkinson's and their families for more than eight years. In addition to support groups, the program also provides art-based therapeutic activities, information, referrals, and resources. Tools and approaches for self-management of Parkinson’s disease (PD) are all part of the programming. Nancy Mazonson, director of the program since its inception, adds, "Parkinson's Family Support is here to help with the challenges of living with PD and to help improve quality of life.”

Over the years, the therapeutic programming component has expanded dramatically. There is now a therapeutic drumming group as well as a dance and movement group, which was recently described by David Leventhal, Director of Dance for PD at the renowned Mark Morris Dance Group, as "one of the most established in the nation." There is even a chorus for people with Parkinson's and their caregivers, called the Tremble Clefs.

Interestingly, the Tremble Clefs is led by Dale's wife, Marilyn Okonow. In 2009, the Okonows received an update from Nancy Mazonson about a new singing program she was starting for people with Parkinson's. When the original choral director did not work out, Marilyn offered to help. Unbeknownst to Nancy, Marilyn had years of professional voice and music training.

After graduating from Cornell University, where she studied music and voice performance, Marilyn received a masters in music education from the New England Conservatory of Music. She had a successful career as a professional singer, pianist, and arranger, appearing with her quartet in Philadelphia, Atlantic City, and New York. While raising her two children, Marilyn was a driving force in developing a music curriculum for the Rashi School and she has also been a frequent cantorial soloist at Wellesley's Temple Beth Elohim.

When Nancy described the program to her, Marilyn said, "I can do this!" and she became the group's director.

Six years later, Marilyn's passion for the Tremble Clefs only gets stronger. "I have become emotionally attached to all the singers. To watch everyone come week after week, through the rain and the snow, with the challenges they face in just getting out of the house, is incredibly inspiring to me," says Marilyn. "The group is very close and everyone supports one another. There is a strong sense of community. They leave humming and with smiles on their faces. For a period of time each week they can forget about their immense challenges and just have fun. Their entire demeanors change once they start singing."

During practices and performances, Marilyn tries to reinforce some of the concepts of formal speech therapy, using vocal techniques specifically designed for people with Parkinson's. "One of the effects of Parkinson's is that people sometimes lose the ability to speak loudly and be heard properly. Singing helps them learn to project their voices. We work on breathing techniques, posture, enunciation, consonant and vowel production, phrasing, and dynamics, just as any chorus would. Rehearsals are run just as any chorus rehearsal. Musical elements are discussed and worked on, and it is the immersion into the music itself that has a profound effect on the singers, along with the experience of making music with others," explains Marilyn.

"Our participants notice an improvement in their ability to speak, thereby allowing them to be heard on the phone, for example, or participate in normal conversation. But it is the power of music expression at the heart of the Tremble Clefs," she adds.

Despite the challenges they face, Marilyn describes seeing spouses holding hands. "It's hard not to see the love and the dedication they have for one another. They motivate others to be positive in life and to play the hand that has been dealt to them as best as they possibly can. One woman, who lost her husband to Parkinson's, still sings in our chorus," she marvels.

The significance and reputation of the Tremble Clefs has not gone unnoticed in the professional musical community. “As a person whose mother, her two sisters, her brother, and their mother (my grandmother) all suffered from Parkinson's disease, I feel a particular connection to your group and your efforts,” remarks John Oliver, conductor and founder of the Tanglewood Festival Chorus. “The power of choral singing to connect and engage people of all ages and backgrounds cannot be overstated. When singing together, we are united in the creative process and the barriers in our lives that prevent us from connecting with one another are overcome. The work of [JF&CS] with the Tremble Clefs is a tremendous opportunity for those living with Parkinson's disease,” he notes.

Both Dale and Marilyn are deeply involved in Jewish philanthropy in Greater Boston. Dale, a partner at the Watermill Group, a private equity investment and management firm in Lexington, serves on the CJP Board of Trustees and is Chair of the CJP Committee on Development. He also co-chaired the 2012 CJP Annual Campaign. Additionally, he is a member of the Board of Trustees at the Rashi School, the Board of Directors of the Friends of Yemin Orde Youth Village in Israel, and the JF&CS Board of Directors. Dale is also on the Hematology/Oncology Visiting Committee of the Dana Farber Cancer Institute, where he helped establish the Okonow/Lipton Family Lymphoma Research Fund, and he serves on the Board of Directors of the iF Foundation, a charity that does economic development work in Haiti.

Aside from directing the Tremble Clefs, Marilyn serves on the Hematology/Oncology Visiting Committee of the Dana Farber Cancer Institute, is on the Board of Directors at the Vilna Shul/Boston's Center for Jewish Culture, and is the outreach coordinator for the Jewish Genealogical Society of Greater Boston. She is also on the JF&CS Board of Advocates and was the 2012 recipient of the Simone Lottor Exceptional Service Award for volunteering as musical director for The Tremble Clefs.

Dale and Marilyn are now working to find donors in order to permanently endow the Parkinson's Family Support program so that it will be financially stable in the future and so that all who participate in the program, from those afflicted with the disease, to their caregivers, spouses, siblings, and adult children, can enjoy an improved quality of life.

“My hopes for the future of the program are to grow our service offerings and widen our geographic base and reach in Greater Boston – to serve as many Parkinson’s patients and caregivers as possible. Eventually, I would like to see our program develop so it can be rolled out on a national scale to JF&CS agencies all over the country,” adds Dale.

For more information, call 781-647-JFCS (5327) or email your questions via our contact us page.
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