From PPAC: Parkinson's Isn't Newsworthy ... Until It Personally Touches You

By Peggy Willocks, member, PDF People with Parkinson's Advisory Council

April is Parkinson's Awareness Month. And it won't be newsworthy that I came all the way from Tennessee to New York to participate in this past Saturday's Parkinson’s Unity Walk, where about 10,000 people with Parkinson's, friends and family "walked" through Central Park as a symbolic gesture to raise funding for research.

As a member of the Parkinson's Disease Foundation's (PDF) Advisory Council, it isn't newsworthy that I am also here as a voice of the patient in helping to have better and faster approval of therapies for the debilitating illness. PDF adopts the promise of a cure by creatively incorporating the opinion of those who actually live with the disease into the research program. After all, who wants to find a cure more than the patient? We met with PDF, the oldest established Parkinson's non-profit organization, for the final two days of last week.

But it should be newsworthy that Lizzie Graham was there from across the pond. Graham is Director of Fundraising and Global Communications of the European Parkinson's Disease Association (EPDA) from the UK. Maybe with the two group's collaboration we will make some headway.

What does it take to be newsworthy? Finding a cure would definitely be great news. The gold standard treatment is a pill discovered over 40 years ago. We won't find a cure this year. One reason is the cutting of funding from the NIH budget due to sequestration. Another is the lack of participants in clinical trials for Parkinson's.

It isn't newsworthy that this year marks my 20th year with the disease. But it may be newsworthy that this is my 13th year of having been one of six people in the world who allowed transplantation of retinal cells into my brain from a donor eye in hopes of producing dopamine, the chemical my brain lacks. However, the trial was halted several years later due to not meeting its endpoints.

Parkinson's is more than a tremor or immobility. Many are plagued with non-motor symptoms such as depression, psychosis and dementia, creating an economic burden of over $14 billion. Living with Parkinson's isn't a death sentence; it is a life sentence.

I hope I live to see the cure - now that would be newsworthy.

Peggy Willocks of Johnson City, TN, is a member of the PDF People with Parkinson's Advisory Council. Learn more about her work in the Parkinson's community by reading her biography on PDF's website here.

A Positive Spin: Creativity and PD

We all appreciate the headlines that help us understand PD symptoms and side effects. But we also find it refreshing to see last week's selection of stories covering ways to take charge of PD with creativity.

Victoria Tane featured in the 2013 Creativity & Parkinson's Calendar

The Science Behind the Spin
Last Thursday, we saw a review published on, "The Awakening of Artistic Creativity and Parkinson's" by Rivka Inzelberg, M.D., in Behavior Neuroscience.  Dr. Inzelberg looked at more than 10 studies investigating, "the ability to produce innovative aesthetic works" in people living with Parkinson's.  She found that:

• People with PD who are not already artistic, may became so when treated with certain PD drugs,­ namely dopamine agonists and levodopa. 
• Creativity could be used by occupational therapists as a method to help people with PD.
• The relationship between PD treatments and creativity may help to scientists to understand artistic creativity generally.

The People Behind the Project
In second headline, we saw a real life example of creativity and PD. PDF's own Creativity and Parkinson's Project artist, Victoria Tane, was profiled in a Union Leader article you can read here.  Victoria was diagnosed with PD in 2010.  As an artist and jewelry maker since the 1980s, she has found her creativity a positive way to cope with PD. Victoria's jewelry, "Bits and Pieces ­- Six Geometric Bracelets," was chosen as the featured work of art for the month of February, in PDF's annual wall calendar. The calendar is a part of PDF's Creativity & Parkinson's Project which exists to explore, support and encourage the therapeutic value of creativity in Parkinson's.

The One Day Vote
As part of our annual T-Shirt Design Contest, PDF unveiled our five finalist designs. All were created by people living with Parkinson's or loved ones. The winning design will be featured on a t-shirt worn by thousands during April, Parkinson's Awareness Month.

What Next?
If these stories resonate with you:

• Vote in the Parkinson's Awareness Month T-Shirt Design Contest here.
• Browse the gallery to get inspired by the creative works of others.
• Get creative. Talk to an occupational therapist about creativity or consider taking an art class.
• Submit your works­, paintings, illustrations, pottery, and more,­ to the Creativity and PD gallery.
• Order a free copy of the 2013 Creativity & PD calendar by emailing info@pdf.org or clicking here.

We hope you enjoyed these stories as much as we did. As Victoria Tane says, "Being an artist is part of the respite, the refuge and the reason that I am able to deal with Parkinson's disease in a pretty positive way."

We think that sums it up pretty well.

"Wow," I Have Parkinson's: Reactions to A Late Quartet and an Early Retirement

Last month, PDF hosted a special screening of the film, A Late Quartet in New York, NY, followed by a conversation with its Director, Yaron Zilberman, PDF Scientific Director Dr. Stanley Fahn and PDF Research Advocate Pam Quinn.

If you haven't yet heard of this film, which is produced by Entertainment One Films, it stars Philip Seymour Hoffman, Catherine Keener, Mark Ivanir and Christopher Walken as a string quartet struggling to stay together in the face of competing egos and ... Parkinson's disease.

As you too often tell us, your neighbors and friends may not truly understand the disease.  So when a film puts a spotlight on Parkinson's disease, it is an opportunity to give Parkinson's a name, to let people know the realities of the disease.  It's the same reason we all work so hard to raise the profile of Parkinson's disease all year long, particularly during April's Parkinson's Awareness Month.

We would really love to hear your reactions to the film, and its portrayal of Parkinson's disease. Have you seen it? Click here to find a list of screenings.

To start us off, here are a few questions and observations, from PDF:

• Diagnosis: What did you think of the moment when Christopher Walken's character is diagnosed with PD? To many viewers, his silence, followed by a simple "wow" seemed to hit home effectively, communicating a variety of emotions with just one word.   Is this similar or different to your own reaction to your diagnosis or a loved one's diagnosis of PD?
• Exercise: You may recognize PDF's own Research Advocate Pam Quinn in the film.  She portrays an instructor in an exercise class for people with Parkinson's.  In this scene, she talks about how the movements in PD get smaller and smaller, and so people have to make them bigger and bigger. Some viewers pointed this out as a favorite scene. Do you agree? Why or why not?
• Retirement: The time frame of the film seems fairly short, with Christopher Walken's character retiring rather quickly after his diagnosis.  Clearly, as a musician his physical dexterity is a very important part of his job. What do you think about the timing of his retirement? How does this cause you to reflect upon the impact of PD on your career?

Building on this last question, we'll leave you with a comment from one of PDF's Facebook friends, a musician, who commented on how PD impacted her musical career. We hope you add to the discussion:

Jane: It sure rings true for me! I was dxed with PD over three years ago and I was a concert violist. Due to the tremor in my right hand I can no longer play the way I used to and have had to retire from professional viola playing. It is a great loss and have suffered depression as a result. I have had to accept the fact that I can only play simple music, now. This illness has really impacted my life more than it would have if I had not been a musician.

Thanks to all who joined us in New York City for the screening.

How Will You Get an Early Start to Parkinson's Awareness Month, April 2013?

Are you planning yet for April 2013? Sounds pretty early to plan for spring, but several months ago, PDF asked the community how we could better support you during April's Parkinson's Awareness Month 2013.

You all had the same answer ... start earlier!

So, we are taking your advice. Today, we sent you an e-newsletter, letting you know about ways that you can plan now to make a difference next April.

Our tips include ordering free supplies now, planning an event, entering the t-shirt design contest and taking the PDF Champions challenges.

Some details on these ideas are below. Do you have other strategies for preparing early? Share them! Let's use the comments section of this blog to brainstorm for April 2013.

Imagine the impact we can make six months from now, if we all start ... now!

Order Your Free Parkinson's Awareness Month Supplies
If you didn't grab a free copy of our toolkit last year, order it now. It offers tips for making a difference in your community during April - whether you choose to host an educational event, collaborate with your library, or work with local public officials - and personal stories from those who have successfully raised awareness in their communities. You are also invited to browse our website for other tools, such as template letters to the editor and printable posters.
Order Now
Browse Online Tools

Enter the Annual T-Shirt Design Contest
Whose t-shirt design will be worn by thousands of people in April 2013? It could be yours! See our regulations and submit your design by Tuesday, January 15, 2013. The community will vote among five finalists in February.
Learn More

Take the PDF Champions Challenge
Could you imagine the impact on Parkinson's awareness if PDF Champions held 30 events around the country in 30 days next April? What about an event on each college campus? You can make a difference by signing up for the PDF Champions Challenge. Whether you host a bake sale, a walk/run or a party, we will work with you every step of the way to ensure your effort is a success.
Learn More


P.S.: Cyber Monday was a hit yesterday, but did you know that today is Giving Tuesday? Today, we honor ALL ways of giving back, including raising awareness, advocating and fundraising! Follow us on Twitter @PDFparkinson for #GivingTuesday updates.