Starting a Group
Starting a Group
My name is Natalie and I was diagnosed with Parkinson's disease at the age of 49.
After finding that there were no support groups in my area for young onset Parkinson's disease (YOPD), I was encouraged to start one. My first reaction was "no way." Eventually, however, my desire to be a part of a support group outweighed my fear of attempting to start one. I was amazed at the fact that I lived in a highly populated suburb of a large city, and yet there was not a single young onset group to be found near me.
In April of 2010 we had our first meeting. I was scared to death. When I first started planning and thinking about the group, I wondered if anyone would show up at the first meeting. I was so excited when one person joined through Meetup.com (www.meetup.com/DuPageYOPD). Then another joined....and another....and another! So, thanks to MeetUp, I knew that others were coming. Over 20 people came to the first meeting!
I know that more people would like to attend, but often distance is a problem. People come from up to an hour away...and this is in a heavily populated suburb of a major city! I find it extremely sad that support groups are either nonexistent, or too distant for those who often have trouble traveling to reach them. By the grace of God, and in spite of my total lack of experience in this area, the support group has flourished. We now have over 50 members on the website and average 15-20 people per meeting.
I began this journey with APDA and am happy to be their new Young Onset Support Group Volunteer Coordinator. I have wanted to see more of these groups started across the country for a long time so am glad to be part of this effort.
What I have to share is not rocket science, it is just my experience - what worked and what didn't. I hope this will be a starting place for your journey and a place where young onset support group leaders can exchange ideas and share insights.