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Care for the Care Partners
April 11, 2018
Care for the Care Partners
Posted by Jordyn Rozensky

Forty-five years ago, at the time of their wedding, Richard carried Myra over the threshold of their home. Now, after several years of him fighting an aggressive form of Parkinson's disease, Myra finds herself helping Richard in a similar way. The poignancy - and challenge - of this moment is not lost on Myra. "We lived such an extraordinary life. And now, we have had to change everything," shared Myra. "I am a person with an incredible amount of gratitude and love of life; every moment is a blessing beyond belief. Even so, it’s hard to feel that these days." 

One place where Myra continues to find blessings is with the JF&CS Parkinson's Care Partner Support Group. The group is just one aspect of the Charlotte & Richard Okonow Parkinson’s Family Support program at JF&CS. The support program specializes in helping families live life as fully as possible despite the many challenges of Parkinson’s disease.

Myra meets regularly with the caregiver support group. She found the group in quite a fortuitous way - Myra was selling a pair of chairs on Craigslist when she met a woman whose husband also had Parkinson's. The two shared stories, and Myra learned of the educational programs offered around Parkinson's at JF&CS. From there, the support group was a natural next step. The professionally-facilitated group meets twice a month, and the women who attend have grown to rely on each other for support, advice, connections, and humor. The group leader, Barbara Sternfield, makes sure everyone is heard and honored.

Myra shared that "there are so many benefits from being with a group of people who understand. We bring up things that are going on in our lives, and it’s like opening Pandora's box: someone says something, and the rest of us open up and share on that topic. For me, that’s a really important part of the group—sharing the feelings, sharing the difficulties, and sharing the things we really wouldn't feel as comfortable sharing with people who wouldn’t 'get' it."

Myra, who is Jewish, appreciates the non-denominational nature of the group. Everyone has something to bring to the table, and the diverse backgrounds and religions of the group add to the mix. "The group offers information and resources that we could never all know about on our own, " Myra shared. "Everything from products that could be helpful to caregivers, to medical support, to doctors and studies. When someone has a question, we know that among the eight or nine of us, there will be somebody there that knows the answer."

Throughout the course of their marriage, Myra, Richard, and their daughter traveled the globe. They've seen it all, often acting as a goodwill ambassador for the Boston area and the United States as they sought out new destinations and experiences. At the height of their travel, they were taking seven international trips a year, many in search of wildlife and remote corners of the world. Their life now, which was recently blessed with a new grandbaby, is entirely different. While they still welcome world-travelers to their Boston-based Bed and Breakfast, traveling is now more about appointments, specialists, and complicated logistics. The partner support group helps Myra process these kinds of life changes.

The group comes out for one another in other ways as well; recently, Myra, who is an oil painter, held an open studio event. Members of the group came to see her work and to celebrate her success. The group is there for one another, providing support in ways Myra could have never imagined. 

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