Women & Parkinson’s Initiative (Part 2)

I am truly honored to be part of this distinguished group of women.  I read everyone’s bios, but they do not do them justice.  Each is remarkable in her own way.  And Parkinson’s brought us together.  I have heard many times how their lives have been enriched, yes enriched, by having PD.  No, we don’t want to be defined by our PD.  But what has happened is that because we have PD, each of our lives has gone in a new direction.  We have taken skills from our “former lives” and are using them to reach out to other women who also have PD.

The goal of the conference is to teach us about how women are affected differently with PD than men.  We will then go back to our communities on behalf of the Parkinson’s Disease Foundation and plan a retreat, event, support group or other educational program specifically for women with PD.  Today we took our first steps in the planning process and will work out the remaining details once we return home.

Yesterday we heard from three women who gave us some of the tools we will need to plan our program. Many of these observations are from fellow blogger Darcy Blake from Parkinson’s Women Support

Rutgers Professor Roseanne D. Dobkin shared with us her recommendation to stave off depression: meaningful involvement with daily exercise, social interaction & personal goals in life.  She says we can’t control what goes on around us but we CAN control how we respond to it.  With our diagnosis things immediately become different. If we don’t take care of ourselves, everything else falls by the wayside.  That includes our spouses, children and work.

The second speaker was one of our own women, PD self-efficacy guru Diane G. Cook who said, “Achieve influence over conditions that affect one’s life. Believe in possibility!” Very true!

Dr. Rebecca Gilbert, from the Division of Movement Disorders, NYU Langone is an incredible speaker.   Those who are her patients are fortunate, indeed. “Become a force for good, don’t wallow,” she said. Dr. Gilbert, who covered every aspect of medications, symptoms and future developments, also answered a flurry of detailed questions from our very educated audience without hesitation. She is like a key to the library of Parkinson’s disease, and we are so thankful for her!

IMG_0386Our last session before dinner was an energizing hour with Dr. Becky Farley who put us through PWR! Parkinson’s Wellness Recovery moves and a boxing demo, featuring Jennifer Parkinson (yes that is her name) and me.  We ended with pranayana breathing (a form of yoga breathing) and a meditation.  We left her session refreshed after a long day of sitting.

At dinner we celebrated coming together with some great laughter thanks to the humor of Robin Morgan and some soul lifting by Maria De Leon, who talked about her journey as a Neurologist specializing in PD, who was diagnosed with early onset PD herself. Her book, Parkinsons Diva, and “The Peripatetic Pursuit of Parkinson’s” by the Parkinson’s Creative Collective graciously given to us by Katherine Huseman, another of the Fab 25, were our gifts to take home.  And for the finale, Ann Boylan, and three other brave women, performed a hula that she choreographed  specially for the evening.

As I return home, I look forward to working with Jennifer Parkinson to create a unique event for women with PD in Southern California.   More on that soon.

Women & Parkinson’s Initiative (Part 1)

Magic lies in telling stories

Robin Morgan, PDF Research Advocate and conference organizer

Roberta and Sharon fighting for their dinner


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.
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