My Story
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 support group to be found anywhere. With help from the American Parkinson Disease Association's Young Onset Center, I began the journey.
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. Then I was so excited when one person joined online on our MeetUp site. (See "Getting started" page.) 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!
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 100 members on the website and average 15-20 people per 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. The purpose in starting this website is to share my experience in order to help others start their own groups. Honestly, what I have to share is not rocket science, but I hope that in some small way my experience will help others.
For now, I will share my experience -- what worked and what didn't, and hopefully you can use it as a starting place for your journey. Please realize that my experience is limited and you may need to adjust your methodology to fit your location and situation. Please use the contact page to ask questions and offer suggestions for additions to this site. Thanks!
Please click on the Getting Started page above.
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 support group to be found anywhere. With help from the American Parkinson Disease Association's Young Onset Center, I began the journey.
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. Then I was so excited when one person joined online on our MeetUp site. (See "Getting started" page.) 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!
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 100 members on the website and average 15-20 people per 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. The purpose in starting this website is to share my experience in order to help others start their own groups. Honestly, what I have to share is not rocket science, but I hope that in some small way my experience will help others.
For now, I will share my experience -- what worked and what didn't, and hopefully you can use it as a starting place for your journey. Please realize that my experience is limited and you may need to adjust your methodology to fit your location and situation. Please use the contact page to ask questions and offer suggestions for additions to this site. Thanks!
Please click on the Getting Started page above.