Expression vs. Insensitivity: A Message to Kanye West from a Person with Parkinson’s

From Tom Palizzi
Chair, PDF People with Parkinson's Advisory Council



Kanye West is without question a richly talented and multifaceted artist. With utmost respect for freedom of expression and the inherent controversial nature of art in general, there is, however, a fine line between expression and insensitivity.

"On Sight," the opening track on Mr. West's new album Yeezus, includes the lyrics:

“The monster about to come alive again/
 Soon as I pull up and park the Benz/ 
 We get this b*** shaking like Parkinson’s”

Many of us appreciate the lighter side of having a chronic and degenerative movement disorder, though as many interpret such statements as harsh and insensitive. While it appears Mr. West is familiar with one of the more recognizable symptoms of Parkinson's disease, there are several other, less obvious challenges people with Parkinson's face.

For more than 55 years, the Parkinson's Disease Foundation (PDF) has been helping people understand and cope with Parkinson's disease. In a unique and bold move, the foundation formed the People with Parkinson's Advisory Council (PPAC) to ensure the effectiveness of their actions.

As Chair and on behalf of PPAC, I would be delighted to help Mr. West better understand the truths and myths of "Parkinson's" and how it indiscriminately impacts the lives of roughly 1,000,000 Americans and their families. Notable people such as Michael J. Fox, Muhammad Ali and Ben Petrick, my peers and millions of others are testament to the enduring spirit of people with Parkinson's.

Mr. West, please take a moment and visit www.pdf.org to learn more and, by all means, feel free to contact me or my colleagues with any questions.

Respectfully,

Tom Palizzi
Chair, People with Parkinson's Advisory Council

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.

"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.

Understanding the Progression of Parkinson's

Can you predict the progression of Parkinson's? ... or change its course?

Last Tuesday, during PDF's PD ExpertBriefing, "Understanding the Progression of Parkinson's," presenter Dr. Ron Pfeiffer had a few suggestions:

• Dr. Pfeiffer provided facts about PD progression - about the percentage of people with PD who develop certain symptoms or leave their jobs after a certain number of years - but also emphasized that these are general facts.  Each person's journey with Parkinson's is very different.
• He noted that there are no treatments proven to reverse PD, but he also emphasized there are actions people can take, such as exercising and joining support groups, that may improve life with PD. (In fact, there is extensive research into exercise right now.)

He also stressed that the picture of Parkinson's he painted during his presentation ... is how the progression Parkinson's looks now.  It's not necessarily the picture of PD in five, 10 or 15 years.  So how can we change it as quickly as possible?  Here's are some suggestions from PDF:

1. Advocate for PD Research: There may not be a cure for Parkinson’s, but you can be a part of the solution.  Join more than 150 PDF Research Advocates who are speeding the development of new treatments through the Parkinson’s Advocates in Research program.  In the Midwest?  We'll announce dates for our in-person three-day training in your region later this month and invite you to apply.  Don't have the time to commit to being a PDF Research Advocate or don't see a training nearby you right now? Take our four-part online course (available in mid-July) to advance your knowledge, and work with our Research Advocates in speeding new treatments. 
2. Inform Others About Parkinson’s: Parkinson's disease is not well understood.  Spread the word in your community and bring the latest educational information to families touched by Parkinson’s.  Browse PDF’s Awareness Toolkit to find tips for raising awareness that work for you, whether writing a letter to the editor or setting up a display in your library.
3. Fundraise for Research: PDF just announced $5.3 million in funding for Parkinson's research. We were only able to do so because of your support.   Support a PD organization, or join PDF Champions, the inspiring individuals who are raising funds for PDF’s programs, to improve the lives and futures of people touched by Parkinson’s.  Whether you run a lemonade stand that raises $20 or a golf tournaments that raises $50,000, you help to move the cause forward.

These are our ideas. What do you do individually to take charge of your Parkinson's?  What ideas do you have for the community to make progress now?