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Thanks for Your Support

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Rabbi David Kaplan, diagnosed with Parkinson’s in 2006, says being part of a support group helped him keep a positive attitude. He recently formed a Parkinson’s support group in Newark. Photograph by Jared CastaldiWhen Rabbi David Kaplan was first diagnosed with Parkinson’s in June 2006, he had no interest in attending a support group. In fact, the idea was somewhat terrifying.

“I was vehement about not going to a support group. I was afraid I would see the worst there,” says Kaplan, 63. “I wanted to stay positive. I had watched someone in the final stages of Parkinson’s who suffered and shook continuously. That’s what I assumed I would see if I went to a support group. I didn’t want to see that.”

Kaplan was already participating in several clinical trials designed to study various treatments and medications for the central nervous system disorder. That was all the support he needed.

Then, in 2009, a nurse who worked with Kaplan suggested he go to New York and visit the Parkinson’s Disease Foundation in Manhattan. The foundation trains individuals to organize community support groups.

Kaplan’s visit to the PDF changed everything. While there, he came to realize Parkinson’s support groups weren’t so terrifying. The groups offered resources, medical advice and fellowship.

“When I was diagnosed, I thought of Parkinson’s as a death sentence and a painful way of dying,” says Kaplan. “I came to realize there’s an awful lot I can do to improve my quality of life. For many of us with Parkinson’s, the impulse is to just sit on the couch and watch TV until the Parkinson’s overtakes us. Now I exercise every day. I stretch all the time. And being part of a support group has gone a long way to trying to keep a positive attitude.”

When it comes to Parkinson’s, a positive attitude helps. The disease has no known cure.

Early symptoms, which typically surface after the age of 60, include shaking, rigidity, slowness of movement, and difficulty with balance and walking. In its most advanced stages, some cognitive and behavioral changes can occur, including dementia, sleep disturbance, and depression. And while there are several medications and treatments that can help alleviate symptoms and slow the disease’s progression, the suffering that comes with Parkinson’s is often solitary, painful, and embarrassing.

“If I’m out with a group of non-Parkinson’s people, I sometimes feel a little strange,” says Kaplan. “But I realized that if I’m with others who suffer from Parkinson’s I know they’ll understand.”

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Kaplan returned to his home in Newark, anxious to join a Parkinson’s support group. None existed there, but he found groups in Dover and Wilmington. Several individuals across the state were trying to get groups running, but there was little communication and coordination. Kaplan created a group that would become the Delmarva Parkinson’s Alliance.

He started by contacting a man named Dennis Leebel, who had formed his own group in Rehoboth Beach after he and his wife moved there from Maryland more than two years ago.

“When David contacted me more than a year ago, the idea was to help foster new groups, help encourage existing groups, and exchange information with one another,” recalls Leebel, whose wife was diagnosed with Parkinson’s in 2002. “It was a wonderful exchange. That was the beginning of the Delmarva Parkinson’s Alliance.”

The alliance had its first meeting on Jan. 21, 2010. Chaired by Kaplan—who also formed his own Newark group in October—the meeting outlined the objectives of the support network.

The DPA would promote communication and provide resources that improve the quality of care for Parkinson’s disease support group members and their caregivers throughout the Delmarva Parkinson’s community. The alliance would comprise support group members and leaders, healthcare providers, and caregivers brought together to develop comprehensive treatment plans and educational information designed to improve the care of people affected by Parkinson’s disease.

Today, the DPA consists of five support groups in Delaware (two in Newark and one each in Dover, Rehoboth Beach and Wilmington) as well as three in Maryland and one in Virginia. Together they share resources that include important information on new and existing medications, myriad physical therapy treatment options, and guest speakers who range from Parkinson’s specialists to yoga instructors.

Leebel, whose group encompasses a 20-mile radius of Delaware’s coastal communities and is currently the largest with more than 150 members, says, “We have a voracious appetite for education. At every meeting you always hear someone say, ‘What would we do without this group? We’d just be stumbling around in the dark.’”

This past November, the DPA held its most comprehensive symposium to date. It included speakers like Deborah Brooks, co-founder of the Michael J. Fox Foundation, as well as specialists from Johns Hopkins University, the University of Pennsylvania, and the University of Delaware.

“I want people to carry the message that there’s hope,” Kaplan says. “There are things we can do. And belonging to a support group is one way of learning how to cope with the disease.” For more about the DPA and its member groups, or to start a support group of your own, visit
delmarvaparkinsonsalliance.com.
 

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