The Young-Onset Support Group that was started in April 2007 by the National Parkinson Foundation Western Pennsylvania has been growing by leaps and bounds. The group meets monthly on the fourth Thursday from 7:00 to 9:00 p.m. at Christ Church at Grove Farm in Sewickley. Members come from five different counties around the region.
“The growth in membership has been very satisfying,” said David Von Hofen, Director of Programs and Outreach for the Foundation. “Since there are fewer people with young-onset Parkinson's disease we weren’t sure what kind of participation we would get when we started the group. We have new members attend almost every month,” he explained.
Young-onset Parkinson's disease (YOPD) occurs in about 15 percent of people diagnosed with Parkinson disease. While the average age of Parkinson's disease diagnosis is 57, YOPD can occur in a person’s mid-thirties, an age when most young adults are building careers and families.
“Given the unique issues of a young person with Parkinson's disease, we find the support group to be an excellent source of information and education, along with the opportunity to network with others in the same situation,” said Mr. Von Hofen.
Four Pittsburgh-area persons with YOPD traveled to the Washington, DC area in July 2006 to attend the fourth annual Young-Onset Parkinson Network Conference presented by the National Parkinson Foundation. As a result of the trip, local attendees made plans to start a new YOPD support group for the Pittsburgh region.
Recent programs included representatives from Medtronic, Inc. explaining the deep brain stimulation surgery, an explanation of Apokyn, the injectible dopamine agonist and its usefulness in reducing “freezing” episodes. Valerie Suski, DO, a neurologist and movement disorders specialist, frequently visits to discuss symptoms, management and teach helpful osteopathic manipulations. The group also has discussed the process of applying for Social Security disability and other similar issues. As a result of the group members’ outreach and networking, a number of news articles and stories featuring group members have appeared in local newspapers.
The group welcomes new members. Spouses, caregivers and other family members are encouraged to attend. In addition to a regular schedule of speakers, the meetings feature open discussion and time to socialize.