How Much Does Parkinson’s Disease Cost? New IHS Report Indicates Burden on US Families

This week, a report conducted by IHS-Global was published in the journal Movement Disorders, providing the most comprehensive, economic analysis to date of the direct and indirect costs of Parkinson’s disease to individuals and society in the United States.  (In full disclosure, it was underwritten by the Pharmaceutical Research and Manufacturers of America).

While certain premises within the report – most notably, the estimate of the overall prevalence of Parkinson’s in the United States, which is probably on the low side  – may be uncertain, most of the numbers are well thought through and carefully applied to the known data.

Implications for Research Funding
The Parkinson’s community – through a statement prepared by Amy Comstock Rick, CEO of the Washington-based Parkinson’s Action Network, and co-signed by the other leading Parkinson’s organizations, including the Parkinson’s Disease Foundation– has correctly noted that the main policy implication of the study is that we as a society should be prepared to invest more money on the “front end” of the process – that is, in research aimed at understanding, easing and ultimately eliminating Parkinson’s disease – to save the medical, maintenance and lost-earnings costs of the on the “back end.”

It is striking to reflect, as Amy’s statement makes clear, that the estimated total of research funds invested directly on Parkinson’s-disease related research is a mere one percent of the annual economic “burden” of the disease, as estimated by IHS.  It needs to be more.

A Key Issue: Nursing Home Care
The report also raises the issue of high cost of health care for people with Parkinson’s.  Since much of this is for areas that are not covered by most Medicare and most private insurance plans, the burden of these costs falls primarily on individuals with Parkinson’s and their families.  One of the most striking statistics in the IHS report is the burden of nursing home care, estimated by the authors as a whopping $4.6 billion dollars a year – almost three times the cost of hospital care for the same population. (It is worth noting that if study indeed underestimates how many people live with Parkinson’s in the US, these costs are in fact higher.) Nursing home care, like many other areas of care needed by people who live with a chronic disease like Parkinson’s, is generally poorly covered, and the literature abounds with stories of families who find themselves forced to go on Medicaid to take get support for a family member who is afflicted.  Simply put, a humane society needs to do a better job in providing for the needs of people afflicted by chronic disease.

We congratulate the authors on their contribution and hope it will enliven the national conversation about public support of research and care for Parkinson’s and other chronic diseases.

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.

What Makes Us Distinctive? The PDF Way: A Letter from the Executive Director, Winter 2013

What makes PDF distinctive? 

As you may remember from September's post, I am now answering such questions in my introductory letter for the Parkinson's Disease Foundation's quarterly newsletters, and posting them on the PDF blog, so we can begin a conversation with you.

In PDF's recently published Winter 2013 issue, I discussed what makes us distinctive, what we call The PDF Way. How does it play out in our programs?

The PDF Way 

In our research portfolio, The PDF Way means supporting the creative ideas brought to us by scientific teams and individuals — peer-reviewed and time-tested. We provide long-term support to research teams at major universities; we award short-term research grants to individual investigators; and we help to solve specific research challenges through the staging of meetings among experts. (For a profile of one such scientist, see this issue's "Spotlight on Research".)

In our educational initiatives, The PDF Way makes creative use of technology to bring authoritative, relevant information to our target audiences. This includes running PD ExpertBriefings, a series of educational webinars for people with Parkinson's and their families, now in its fourth year; and providing online professional education for nurses, physical therapists and other "first responders" to the needs of people with Parkinson's. (For a list of upcoming PD ExpertBriefings, see page 7 or browse our website here.)

In our advocacy programs, The PDF Way means harnessing the energies of individuals and families with Parkinson's. The most striking example of this is the signature program we call Parkinson's Advocates in Research (PAIR), in which we deploy lay advocates to play leadership roles in research. (For examples of how these advocates work, see photographs on page 10, also featured here.)

In all of these activities, we make certain pledges to our community.

• To our donors, we promise accountability and efficiency. (For the fifth consecutive year, we boast both the four-star (highest) rating of Charity Navigator, the respected charity watchdog group, and the premier seal of approval of the Better Business Bureau.)
• To people with Parkinson's, we promise a place at the very center of our operations — whether through our People with Parkinson's Advisory Council (PPAC), through PAIR (see above), or in the way we consult the community in the design and execution of each and every program and service.
• And to our colleague organizations, we pledge collaboration — both to provide better service to people who are affected by PD, and to minimize duplication of effort.

Your Part in The PDF Way

An important part of The PDF Way is you. So in 2013, we invite you to be a part of it - whether by providing feedback on the PDF blog, joining a PD ExpertBriefing, or becoming part of Parkinson's Advocates in Research.

How would you like to be involved? What should PDF keep in mind in building our programs in 2013?

Together, we can expedite PDF's mission to improve the lives and futures of people touched by Parkinson's.

Dr. Bill Weiner: Eminent Scientist, Independent Voice and True Friend

Last month, the Parkinson's community lost a dear member, one who dedicated his career to the treatment of the disease. William J. "Bill" Weiner, M.D.,  known to many at the University of Maryland where he served as Chairman of Neurology and the Director of the Maryland Parkinson's Disease and Movement Disorders Center, passed away on December 29, 2012.

Involved in treatment trials for Parkinson's disease since levodopa in the 1960s, Bill was truly one of a kind in his profession – a fine scientist and a dedicated clinician who was committed to thinking for himself and to expressing his views fearlessly just as they were, arrived at not through crowd-sourced conventional wisdom but through his own learned, astringent, original, independent analysis.  You always knew where you were with Bill, and that he would give it to you straight, with kindness and yet with humor, and from principle rather than from special interest – his own or any other.

We all are grieving with Bill's family, including his wife Lisa Shulman, a fellow Parkinson's scientist/clinician, and treasuring the memories of the philosopher and teacher we all knew.

Please feel welcome to share any of your memories below.

See 2006 Interview with Dr. Weiner in PDF News & Review

Photo credit: American Academy of Neurology.

"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.

Join the fight on Giving Tuesday!

As we all give thanks at this time of year, we remind ourselves for what, and for whom, we are thankful.  PDF is grateful now and always for our many supporters, volunteers, advocates and PDF Champions who are making a difference in the fight against Parkinson’s.  We could not do our work without these individuals who raise awareness and funds in their communities.

PDF's programs seek to empower the community to be proactive in making a difference in the cause.  One way we do this is by providing loved ones, family and friends with tools to raise awareness in their communities and raise funds through our grassroots fundraising program, PDF Champions.

Join us on this #GivingTuesday, by becoming a PDF Champion.  #GivingTuesday is a nationwide campaign to get individuals to give back to charity during the holiday season, and PDF is happy to be involved!

Our PDF Champions have made a difference in the fight against Parkinson's by raising hundreds of thousands of dollars for research.  People with Parkinson’s disease and their children have run marathons and triathlons and biked across Ohio and Alaska.  Grandchildren have set up lemonade stands and pancake breakfasts.  Husbands and wives have organized educational events.  No matter the size or scope of these events, they all highlight what #GivingTuesday is all about: giving back and making a difference in the lives of others.

Here is one of our PDF Champions in action! 11-year old Lauren Blum of Winchester, VA held a Zumbathon and raised over $1,000 for Parkinson's research.

How can you meet the example of Lauren and other inspiring PDF Champions?  How can you join them in raising the bar of grassroots community involvement?  You can donate your time.  Volunteer at an event or create one.  Re-tweet something you find inspiring.  Post information about PDF on your Facebook page.  Make this year’s holiday party a benefit for Parkinson's research –  become a PDF Champion!

As our PDF Champions have shown us, one person, one act of giving, can make a difference.

For more information about how you can participate in #GivingTuesday by fundraising for PDF, follow us @PDFChampions and @PDFParkinson, like our Facebook page, email us at info@pdf.org or call (800) 457-6676.

Happy Holidays!

The Cure Begins With You

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.