The Parkinson Education and Support Group of Sussex County had its first meeting in March. It is now a firmly established activity in the county and boasts 125 members. Half of the members have Parkinson’s disease, and the other half are caregivers.
|
Call Dennis Leebel at: 302 644-3465 »
|
“We obviously filled a big void in the community,” said Dennis Leebel, who cochairs the group with Kathy Woolman, caregiver coordinator at the CHEER Center in Georgetown. The community, especially Beebe Medical Center, has been very helpful, said Leebel. Beebe made a large conference room available for the monthly meetings, helped with the first newspaper announcements and will start a weekly exercise class for the members in January.
“The real story is about the members,” said Leebel. “They all exhibit different Parkinson’s symptoms to different degrees. Some have tremors; others have rigidity or postural instability, and some have a shuffling gait, but they are all there to share their stories and learn more about their affliction. They learn from guest presenters and talking to each other.
“Discussions are lively with everyone contributing,” said Leebel. “They are excited about the group and a number of the members believe their quality of life has improved as a result of attending the meetings. Anyone with any movement disorder is welcome and could benefit from hearing the speakers and participating in the discussions.”
The makeup of the group is in line with nationwide demographics: 75 percent of the people with Parkinson’s are men, and 25 percent are women. Most are older than 65 years, and most live within a 20-mile radius of Lewes. An estimated 1 million people in the United States have Parkinson’s disease, and 50,000 people annually are diagnosed with the disease. Within the general population, one in 10,000 people have Parkinson’s, and above the age of 60, the ratio is one in 100.
The causes of Parkinson’s are unknown environmental factors and a small heredity factor. While the disease is slowly progressive, it is seldom fatal. It is the most common disorder of the central nervous system.
In addition to the monthly meetings the group also has a monthly caregivers breakfast and a first responders effort to reach out and help those members having a difficult time. Each meeting requires a team effort. One couple makes and maintains nametags for everyone.
A four-person team maintains a combination email and telephone tree to keep in touch with members, and another member maintains a lending library and free publications for the members. Others take roll and act as greeters for the members.
There are even a few helpers who have no connection to Parkinson’s.
The emphasis in 2009 was on education with a number of guest speakers attending the monthly meetings. Past speakers included a neurologist, a physical therapist, two separate representatives from Johns Hopkins and one from the University of Maryland Baltimore Parkinson Research Centers, a Parkinson researcher from the University of Delaware, a Christiana Hospital social worker, an elder law lawyer and a number of others. There is a long list of speakers anxious to address the group, including a representative from the University of Pennsylvania Parkinson’s Research Center.
“The emphasis this year will be on small group discussions, becoming more visible and active out in the community, having more social events and continuing to learn more about the disease,” said Leebel. He said there may be spin-off groups established to serve the nearby Maryland communities of Ocean City, Ocean Pines and Salisbury.
|
