A Good Resource for all things Parkinson’s

You can’t control the wind, but you can adjust your sails.

Yiddish proverb

I just saw this post on Parkinson’s Women Support about a site called Parkinson’s Patients Support Groups.  Although it is based in the Bay Area, there is a lot of good information about Parkinson’s organizations, the latest news on PD and clinical trials.  A similar sight with resources in the LA area is The NeuroCommunity Foundation  which has support groups and other services in the Valley and points north.

In addition, I was informed this morning that I have been featured in a testimonial on the Parkinson’s Disease Foundation website.  One of the goals of the Women & Parkinson’s Initiative conference that I attended is that participants will reach out to other women with Parkinson’s.  I will be planning an event in the spring for Women with PD living in in Los Angeles along with Jennifer Parkinson, who also attended the conference.  If you are a woman with Parkinson’s or know a woman with PD living in Los Angeles or the Valley, please contact me at twitchywoman18@gmail.com to be put on our email list.  You will not want to miss this exciting event.  More info to come.

Finally, a note from Parkinson’s Action Network.  Take the FDA Survey on Parkinson’s by Oct. 30
There’s still time to join more than 2,400 people with Parkinson’s and their caregivers who have taken the community-wide survey on Parkinson’s disease. Learn more about the survey here.

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.