Share Your Story
When Linda Giorgilli first signed up for Facebook, one of the world’s largest social networking sites, she thought it would be a nice way to connect with friends. In the past two years, it has become a lot more than that: a place where she has been able to share a very special part of her life — namely, her experience caring for her late father who lived with Parkinson’s disease (PD). She says she is, “in awe” of what has transpired.
Ms. Giorgilli’s father was diagnosed with Parkinson’s disease in 2001 at the age of 74. In 2008, his health began to deteriorate; and he and her mother decided to move from their native Baltimore down to Florida to be near their children. At this point Ms. Giorgilli made the decision to move in with them to care for her Dad. He had quite a life story: witnessing two atomic bomb testings, traveling on one of Admiral Richard Byrd’s expeditions to the South Pole and with his wife, living, “a wonderful love story.”
When she realized her Dad needed full-time assistance, Ms. Giorgilli left her job as a legal assistant to care for him. From then on, she spent every day with her Dad. She put herself to work learning about Parkinson’s disease, going to seminars and reading constantly. She accompanied him to doctor visits, and helped him to shower and shave.
She’s quick to note the relationship was reciprocal. “In my lifetime, I will never receive a larger gift than knowing that we were able to rely on one another as we did.”
When Mr. Giorgilli passed away in May 2009, Ms. Giorgilli found solace in part by writing about her time with her Dad. As a member of Facebook, she shared her writing with friends. She also joined PDF’s Facebook page, which currently has more than 5,600 members.
As she watched people “writing” on the PDF page, seeking advice and sharing their stories, Ms. Giorgilli began responding to their inquiries about life with Parkinson’s herself. She says “I’m not an expert, but I felt I had so much to share because of my time with my Dad. It was healing.” But she says these individuals responded positively, and were touched by her stories. Soon, she found herself corresponding with various people each day, writing on PDF’s “wall” (an open forum for discussion and questions). Within months she had over 40 new friends and had caught our attention as an inspiration!
Today, besides planning to continue her work in raising awareness for Parkinson’s disease, she is also writing a book about her experience caring for her Dad. She says she will never give up on the Parkinson’s cause. And the biggest surprise to her is what a difference a social networking site made.
As Ms. Giorgilli says, “The value of what unfolded with social networking — the power and strength that it gave me to cope with the loss of my father and fight for this cause — is immeasurable.”
PD Online Forums
Linda was able to find friendship and support by using online forums. Here are a few online communities with active Parkinson’s groups:
- PDF Facebook: http://www.facebook.com/parkinsonsdiseasefoundation
- Neurotalk: http://neurotalk.psychcentral.com/forum34.html
- Parkinson Information Exchange Network Online: http://www.parkinsons-information-exchange-network-online.com/
This article was originally published in the Winter 2011 edition of PDF's newsletter,News & Review.Posted by PDF Admin on January 26, 2011