Magic lies in telling stories

Robin Morgan, PDF Research Advocate and conference organizer

Greetings from New Jersey where I have been privileged to be part of the first Women and PD conference sponsored by the Parkinson’s Disease Foundation.  This first ever conference was organized by 4 amazing women from across the US who have all received previous training by the PDF to be Research Advocates.  All of them have PD and all are passionate about helping others fight the disease.

There are 25 participants who are all very accomplished in different ways.  One woman is a neurologist who had early onset PD.  Others include lawyers, physical therapists, teachers, researchers and even a pioneering feminist who has a weekly radio show.  Several have written books on PD, including “The Peripatetic Pursuit of Parkinson’s” which I highly recommend, Parkinson’s Creative Collective and “Parkinson’s Diva”  Parkinsons Diva  (I have not yet read this one).

The goal of the conference is to bring women together to learn in a small group setting about living with Parkinson’s Disease and issues that are unique to women with PD.   Each of us will then plan an event, retreat or other program to share what we have learned with other women with PD.  The better informed we are, the better equiped we are to deal with whatever PD brings us in the future.

Today I also met Roberta Marongiu, founder of Rock Steady Boxing NY/LA, the boxing program that I attend in LA.  Since she is located in NY, this was the first time we met.   Roberta is a researcher who focuses on the genetic causes of PD and the developement of new gene therapies for PD.

Sessions today included a very informative talk on Gender Differences in PD by Allison Willis, MD, a discussion on Sexuality and Women with Parkinson’s Disease with Sheila Silver PhD. and finally a lecture by Becky Farley, PT, PhD, who developed PWR! Parkinsons Wellness Recovery.  PWR! emphasizes doing exercies with amplitude, or large movements.  These movements can help with posture, balance and may even help repair the brain.   Today she led us in some basic movements.  Tomorrow we will spend an hour actually working out with her program.

I have also met several other bloggers here.  When talking about the proliferation of books and blogs about PD, one woman said that if you have PD,  you have to write a book.  Another one said she heard about a man who was working on finding at least 10,000 blogs on PD.  I guess the one thing we all have in common is that we want to tell our stories.
Don’t forget to follow my Facebook Page for the latest news on PD research.