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October 26, 2014 | by Barbara Rosenthal | [Editors note: Barbara Rosenthal is a Parkinson’s Women Support member, she’s attended PD events around the country, and she is a PWS team member who will walk at Moving Day Silicon Valley on April 25.] DB

BARBARA ROSENTHAL’S JOURNEY WITH PARKINSON’S DISEASE

Parkinson’s Institute in Sunnyvale

I was diagnosed with PD in 2012 by Laura Banks, a Monterey neurologist. After the initial denial, shock, fear, and depression, I started researching and sifting through resources both local and on the internet. I asked everyone I knew if they knew anyone with PD who would talk to me.

My neurologist referred me to Dr. Grace Liang at the Parkinson’s Institute, a National Parkinson Foundation Center of Excellence in Sunnyvale. She helped me focus on the possible, and patiently fielded my questions and my family’s questions. She also told me about an incredible group of women with Parkinson’s who gathered monthly, usually for lunch, without any agenda except to support each other on their common journey.

 Parkinson’s Women Support in Silicon Valley

The first PWS gathering I attended was at the Asian Art Museum in San Francisco. Finally, I had found my “people.” They were a strong, passionate, and engaged group of women who, by the way, happened to have Parkinson’s. I was enchanted! By their example, I learned to face my disease with action rather than resignation. They helped me find the silver lining and humor in the day to day idiosyncrasies of this quirky disease. And most importantly, they demonstrated how to joyfully live the life they have been dealt, rather than mourning the life they thought would be.

The unstructured nature of the PWS lunches promotes open discussion and sharing, without judgement, only support. These monthly gatherings, organized by Susan Foster, and embellished with fieldtrips organized by other members of the group are unique and provide a critical support and educational role in dealing with my PD.

Moving Day Chicago

Meanwhile, in Chicago, my daughter Alice had become involved in a Parkinson’s fundraiser sponsored by the National Parkinson Foundation. She jumped in with the enthusiasm only a 25 year old can muster. I joined her for Moving Day Chicago, a community-based effort to educate, fund-raise, and build support for the local Parkinson’s community. Every resource, medical, social, commercial and volunteer was represented. Registration was free, food was donated, mini workshops in movement, yoga, tai chi, boxing, and vocalization were available. A children’s area kept the little ones engaged. Multi-generational family teams, company teams, and individuals all came together to honor someone they knew who had PD by practicing the best medicine for PD-Movement. It was energizing and gratifying to see everyone pull together for a common community-based focus on Parkinson’s.

Kripalu Workshop in the Berkshires

After the event in Chicago, I flew on to a National Parkinson Foundation sponsored event in Massachusetts- a weeklong Yoga/Parkinson’s workshop at Kripalu in the Berkshires for those newly diagnosed. It was a life-changing week. Sessions focused on facilitating movement, balance, and focus. Specialists included prominent neurologists, physical therapists, counselors, and nutritionists, available for informal discussions during meals and in the evenings. Joyce Oberdorf from the National Parkinson Foundation was also there, and I was excited to hear her say that they would be bringing Moving Day to the Bay Area.

Dr. Becky Farley’s PWR! Retreat in Arizona

In May of this year, I participated in Dr. Becky Farley’s PWR! retreat in Arizona. This was facilitated by a gift certificate I bid on that Dr. Farley donated to the PWS Holiday Bazaar in honor of Dr. Melanie Brandabur. This year, I’ve been working with Darcy, Charmaine, and other community representatives to bring Moving Day Silicon Valley on April 25 to life. Once again, I participated in Moving Day Chicago with my daughter and friends. My daughter’s company generously matched the donations her team raised and I was personally moved by the support of her friends and coworkers.

Moving Day Silicon Valley

We have the opportunity to mobilize and focus the technological, fiscal, and social resources of Silicon Valley to create a unique Moving Day for our community. I hope everyone pitches in to create an event that unifies the focus of individuals, groups, institutions and business to raise awareness, honor, educate, raise funds, and unify local actions to work with the National Parkinson Foundation’s goals to support those with PD.

Barbara

Register for Moving Day: http://www3.parkinson.org/site/TR?company_id=5360&fr_id=1910&pg=company


About Parkinson’s Women Support  The  mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s Disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen

 

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