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.

Wednesday Picture Day: PDF Champions

A special thank you goes out to Linda Morgan for raising awareness of Parkinson's disease this April! Linda is a member of PDF's People With Parkinson's Advisory Council (PPAC) and a dedicated PDF Research Advocate. On Monday, April 23, Linda hosted a screening of the film Just Around the Corner at her local movie theater in Asheville, NC, followed by a question and answer session with a panel of people with Parkinson's.

The documentary by Flat Broke Productions follows the story of Bob Benjamin, a music industry veteran and founder of the Light of Day Foundation, who was diagnosed with Parkinson’s disease at age 38. The film documents the challenges of living with Parkinson’s disease and how Mr. Benjamin responded to the diagnosis. He chose to fight back, and as his weapon, he chose something near and dear to him, rock n’ roll.

Light of Day Foundation has been a big supporter of PDF over the years; generously providing PDF with funding for Parkinson's research. At PDF's 2010 Gala Bob Benjamin and the Light of Day Foundation were awarded the Page and William Black Humanitarian award.

As a PDF Champion, you too can host a movie night to benefit Parkinson's research.  Ask your local theater to donation one of their theaters at an off time or you can even host the event at your home. Collect admissions, sell popcorn, candy and drinks with proceeds benefiting PDF!

Remember the Cure Begins With YOU!

Wednesday Picture Day: PDF Champions

PDF Champion Making a Difference

Dr. Maria L. De Leon of Nacogdoches, TX has been extremely busy fundraising for PDF and building awareness in her community. Maria is a member of PDF's People With Parkinson's Advisory Council (PPAC) and is a dedicated PDF Champion!

On February 12, Maria's local Defeat Parkinson's group teamed up with the San Jacinto Junior Girls Scout Troop #9129 to pay tribute to the men and women in their community who are living with Parkinson's as well as their caregivers. The troop planted red tulips at Oak Manor Nursing Home in preparation for Parkinson's Awareness Month in April! 

On March 23, Maria and her local Defeat Parkinson's group hosted their 3rd Annual Parkinson's Disease Conference. The event helped to educate East Texas about Parkinson's disease, offer support, build awareness and fundraising for a cure! The event raised over $2,500 for PDF!

Thank you for your dedication to the fight against Parkinson's disease, Maria!

Remember: The Cure Begins With YOU!

WPC Opening Ceremonies III

Rhona Johnson, one of PDF's WPC reporters and member of our People with Parkinson's Advisory Council, would like to follow-up on previous posts discussing last night's WPC Opening Ceremonies. Rhona and others communicated that they were particularly moved at the ceremonies by the words of Bryn Williams, founder of WobblyWilliams.com.

Here's Rhona's report:

"At the Opening Ceremonies last night, Bryn Williams, Founder of WobbyWilliams.com spoke eloquently of how PD impacts people living with the disease, their families, friends and carers. He issued an urgent challenge to them all the work for a cure, saying,

'Neurologists cannot do it alone. We cannot do it alone. People with Parkinson's are part of the solution.'

He urged us to work tirelessly and energetically to advocate and educate to find a cure."

What Do You Think?
If you have questions or comments for Rhona about her post, please click "Comment" or "Post a Comment" below.

Bringing the WPC to You

In just five days, members of the Parkinson’s community will gather for the 2nd World Parkinson Congress in Glasgow, Scotland. Can’t make it to Scotland? PDF will bring the WPC to you.

We’ll be reporting straight from Glasgow, providing scientific updates, interviews with attendees, photos of the Parkinson’s Quilt display and more.

What do you want to know from the meeting? Give us some ideas of the topics you'd like covered.

We'll do our best to report back to you next week, with help from our on-the-ground reporters, members of our People With Parkinson’s Advisory Council and Clinical Research Learning Institute.

Please share your thoughts below.

• To comment or view comments: Click "Comments" or "Post a Comment" below.

Tribute to a Founding PPACer

Yesterday, PDF printed a news item about our dear friend, colleague and PPAC member Joanna T. Steichen, M.S.W.

At PDF, we are mourning the loss of this passionate member of the Parkinson’s community. In doing so, we of course find ourselves reminiscing…about her many accomplishments, the many PDF projects in which she had a hand and her friendship.

For those of you who did not know Ms. Steichen, we urge you to take a look at this biography compiled on our website, which is quite inspiring. For those of you lucky enough to call Ms. Steichen a friend, we reserve this space for our memories and tributes from you, about her time with us.

Please share your thoughts below.

• To comment or view comments: Click "Comments" or "Post a Comment" below.
• To see Ms. Steichen's biography on the PDF website: Click here.