"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.

A Fond Farewell to an Extraordinary Friend, Paula Wittekind

Paula Wittekind

In the loss of Paula Wittekind, who passed away on November 8, the Parkinson’s community bids farewell to a lovely friend, a fine mind, and a courageous and indefatigable presence. To the end, she fought quietly but effectively against her own infirmities and against the indifference of institutions that she felt could always do more to wage serious war against Parkinson’s. But in all of these ventures – whether it was the legendary Parkinson’s Pipeline Group, which she co-founded, the Parkinson’s Action Network, or my own organization, the Parkinson’s Disease Foundation – Paula served as an effective research advocate, always finding a way to deflect attention from herself and her own needs, to others and the work they were doing to advance the interests of her community.

I last spoke to Paula by telephone a few weeks before she died, finding a rare downtime moment between the visits of pilgrims from various parts of her life who were visiting her home in Cocoa, FL – people like Perry Cohen, Peggy Willocks and other heroes of our community. In a just few minutes, she swept away the sadness and trepidation that I brought to the call and replaced them with feelings of love, respect, a laugh or two, and above all inspiration about how I could be working in her wake a little bit harder, a little bit better … and a lot more meaningfully. What a gift she made to me personally during this single conversation, and how much I value it.

Thank you, Paula, from all of us. May your wonderful and far-flung family treasure their memories of you. And may they know how many lives you touched, how deeply … and with what profound effect.

Remembering Arlen Specter

When I learned of the death of former Senator Arlen Specter two weeks ago, I thought immediately of two people in the Parkinson’s community who I knew would strike just the right chord to pull me out of a mood of regret for the loss of a true champion of medical research in America.

I got it right.

One was of these was Jim Cordy  – a veteran of the 1990’s “Washington Wars” to get Parkinson’s disease recognized – and funded -- as a national priority.  He was a close colleague of Joan Samuelson (read on), the founder of the Parkinson’s Action Network.  And he was best known (in addition to the frogs he raised, and that his wife Deborah tolerated, in their suburban Pittsburgh home) for the hour-glass that he carried everywhere, setting it on the desk or podium before him to symbolize what the passage of time means for someone who lives with Parkinson’s disease.   In Parkinson’s, he would say, every moment counts; every hour drains energy from a productive life; every year is another finger of reproach wagged at those of us who use other, more prosaic, measures of time, like annual budgets or fundraising plans.    

During our telephone conversation, Jim reminded me of the hour glass, and said he remembered how Arlen, then Senator Specter (R, PA) , ranking member of the Subcommittee on Health and Human Services, went to floor of the Senate during the debate on the federal support for research involving embryonic stem cells, referring repeatedly to “Jim Cordy’s hour glass, reminding us that time, for someone with Parkinson’s, is not neutral!”

My other witness was Joan Samuelson, the gifted and charismatic California lawyer who was diagnosed with Parkinson’s disease in her forties; went to Washington during the administration of the first President Bush to fight for federal support of research involving the cells of discarded fetuses; then, in the mid-1990s, founded the Parkinson’s Action Network which now, under the leadership of the Amy Rick, serves as the PD community’s nerve center and power source on public policy issues.

Joan remembers Senator Specter’s unremitting commitment to medical research, the Republican counterpart to the equally indefatigable Tom Harkin (R, IA), his partner on the HHS subcommittee.  Together, they spearheaded the memorable drive to double the NIH budget between 1998 and 2003 – a spectacular achievement  that transformed the capacity of the United States to lead the world’s medical research and pave the way to new cures.  (She also reminded me, with admiration, of Senator Specter’s final legislative battle, in which he almost single-handedly persuaded Congress to add $10 billion to the NIH research budget as part of the stimulus program that President Obama put forward as a means to shake the country out of the 2009 financial crisis.)

As for me, I best remember Arlen Specter – dubbed by his fellow-Pennsylvanian Jim Cordy as the leader of “Arlen’s Army,” a play on the nickname (“Arnie’s Army”) of that other famous Pennsylvanian, the golfer Arnold Palmer – at the memorable Congressional hearing in the Fall of 1999, when the Senator and his friend Tom Harkin presided over a public hearing of the subcommittee on the subject of Parkinson’s disease research.  The hearing featured Dr. Gerald Fischbach, the head of the National Institute of Neurological Disorders and Stroke; Jim Cordy (armed with his hour-glass, of course!); Joan Samuelson; and the star, recently “out” with his PD diagnosis, a winsome, charming, young Canadian-born actor of the name Michael J. Fox.

PDF helped pull this event together and I was never more proud than when I saw this titanic cast playing out the Parkinson’s case before a national audience.  It wouldn’t have happened without Arlen Specter, and the PD community has never been the same since.

Goodbye, Arlen.  You did us proud.

The Good, the Bad and the Ugly: Science Reporting in Parkinson’s

Will eating berries lessen your risk of Parkinson’s? What about coffee? What’s the real story on coconut oil? Is deep brain stimulation a miracle surgery?

All of us, whether or not we live Parkinson’s, are faced each day with a barrage of headlines about what might help or harm our health.

After such headlines appear, PDF often receives an influx of inquiries asking:

• Does this new drug/therapy/compound help Parkinson’s?
• Is this new drug a cure? 
• When will this new breakthrough be available?

The Good News
Scientists all over the world are conducting research into Parkinson’s. They are publishing their work in scientific journals and discussing it at meetings, and the media is reporting on it. This means that people touched by Parkinson’s disease have the chance to access the latest information about the disease online. According to this weekend's edition of the New York Times, which references studies by the Pew Research Center, people who aren’t connected to the Internet may actually be missing out on valuable health-related information!

The Bad and the Ugly
Not all sources report responsibly to you. Whether a source uses a sensationalistic headline, or leaves out important facts, they don’t always tell the real story.  For example, a story might report on deep brain stimulation as a helpful treatment, without communicating that the surgery does not stop disease progression. Another might report that smoking is associated with a lesser risk of developing Parkinson's, without telling you that picking up the habit isn't a good idea because more research is needed to understand why.

What Does It Mean?
So if you’re reading these headlines at home, how do you discern between fact and fiction? 

At PDF, part of our job is making sure you have quality information.  One initiative we developed last year was to include a "What Does it Mean?" component to the 50 or so scientific studies we cover each year. At the end of each report we ask “What Does it Mean?” and with the help of medical reviewers, science writers and research staff, we give you our best answer.

Sometimes we tell you that a drug could be available in the next five years. Other times, we let you know that a study was unsuccessful but is valuable for our understanding of Parkinson’s overall. Either way, we try to tell you the truth about how the science might impact your life with PD.

Other Strategies

Here are a few other strategies for assessing health information you find online:

• Ask Your Doctor: If you are seeing a Parkinson’s specialist, they should be very aware of the latest research and be able to explain how it applies to you.
• Evaluate Your Source: Where are you finding your information? Pay attention to who is publishing the information and when they published it. A few years ago, PDF published this article in our newsletter, with tips for evaluating whether a certain website is trustworthy. The Internet has changed, but these tips still apply.
• Call our HelpLine: PDF’s HelpLine is available at (800) 457-6676 or email at info@pdf.org from Monday to Friday, 9:00 AM to 5:00 PM to answer your specific questions about PD or specific news items you read.
• Watch Our PD ExpertBriefings: PDF’s online seminars, including this year’s live series and more than 30 recorded seminars, are led by some of the most trusted experts in the field. Need information on exercise? Find it here. Want to know about experimental medications? We have that too.

What About You?

What's your impression of Parkinson's science in the media? Do you find reporting responsible? Are you confused by the headlines or do you find them clear?

What can PDF to bring you the best information about Parkinson’s disease and the latest scientific findings?

P.S. Click here to see PDF's latest science headlines and scroll down in each one to see our answer to "what does it mean?"

Letter from the Executive Director: Fall 2012

Dear Friends:

In the introductory notes that I write for each quarterly newsletter of the Parkinson's Disease Foundation, I try to identify common themes that thread through our various articles. And now we are posting these themes on the PDF blog, so you can let us know your thoughts.

In the Fall 2012 issue of News & Review (found on the PDF website here) the theme is rather clear … and reflects a central commitment that PDF makes to the people we serve.  

The theme is “improving the lives and futures of people touched by Parkinson’s.”

Such a broad theme of course plays out in many different ways.

It is evident in our lead article on the subject of how people with Parkinson’s can ease one of life’s most stressful experiences: the hospital stay. Private foundations in countries around the world — including those in the United Kingdom, Australia, Canada and the United States — have made this issue a high priority of their advocacy programs.

The same theme is evident in a thoughtful piece, authored by Ms. Kapust and Dr. O'Connor, on the issue of when a person with Parkinson’s can continue to drive safely and when he or she should consider leaving the driving to others. Doctors and people with PD alike tell us that for many families, this can be one of the toughest challenges, and meeting it is one of the most important things we can do in the cause of improving lives.

In a very different way, the people we call PDF Research Advocates — women and men who receive training through PDF’s Parkinson’s Advocates in Research (PAIR) program — also improve lives, their own as well as the lives of others, by serving as lay ambassadors for research, the highway to new treatments. And now you can join them by taking our online course.

We would be remiss if we did not mention that the improving lives theme is inherent also in National Family Caregivers Month, coming up in November, to which we pay tribute in our events section. Care partners of people with Parkinson’s work hard each and every day to improve the lives of their loved ones. It is our responsibility to improve theirs by offering support services.
Perhaps the most personal of these vignettes of improving lives and futures is the story of Page Morton Black, PDF’s long-time Chairman who recently retired from the Board after more than 35 years of outstanding service. We reprint a selection of the tribute that was sent to her recently by our Board. In all that she has done to support our work — the people she inspired, the Board she helped build and the millions of dollars she raised — Page did indeed improve lives — the lives of us all.

Best wishes for a healthy, happy and productive fall season.

Robin Anthony Elliott
Executive Director

PDF Champion Does Makeup

Join us in welcoming our newest PDF Champion, Stacey Catapano! Stacey will be hosting a Grand Opening and Cocktail Party at her makeup studio, Brooklyn Makeup Studio in Brooklyn, NY on Thursday, September 20, to benefit the Parkinson's Disease Foundation.

The event is sponsored by BELLA Magazine and Sovereign Mercedes Benz and will feature complimentary makeovers; a free gift with any purchase and a one year subscription to BELLA Magazine; over $1,000 in raffle prizes; guest vendors with beautiful fall accessories; food; cocktails; and more! A portion of all sales and 100 percent of all raffle sales will benefit PDF! 

If you live in or around Brooklyn, NY please stop by the event to get dolled up and support Stacey and Parkinson's research! Come dressed in white and receive a fabulous bag of goodies!

Here are all the details:   

Where: 

Brooklyn Makeup Studio

447 Avenue P

Brooklyn, NY 11223

When:

Thursday, September 20

12:00 PM to 9:00 PM

Contact:

Makeup applications must be booked in advance by calling (718) 333-3482.

Thank you for making a difference in the lives of people with Parkinson's, Stacey!

Remember: The Cure Begins With YOU!

Guest Blog: Stroke Story Has Implications for Parkinson’s Treatment

Therapy is most effective when it addresses an individual’s passion 

By Ken Aidekman

Paul West is a professor of English and comparative literature and a prodigious writer of both fiction and non-fiction books. His entire life revolves around words. But, in 2003 he suffered a massive stroke that left him with global aphasia, a condition that rendered him unable to understand words or produce them. His wife, Diane Ackerson, also an author and poet, tells the story of West’s bumpy road to recovery in her book One Hundred Names for Love.

Upon his emergence from critical care, West was faced with the arduous task of regaining his communication skills. Initially, he made reasonable progress, but after a few months of both physical and speech therapy he reached a plateau. Ackerson saw her husband become increasingly frustrated with his failure to achieve more advanced goals. Although his speech therapist asked questions in simple English, try as he might, West could not find the appropriate words to answer her. When he did finally respond, his language frequently included complex metaphors and abstruse literary references. Such answers were lost on the therapist, but Ackerson realized she could parse out her husband’s meanings, albeit with considerable effort.

At this point Ackerson personally took over West’s rehabilitation and re-directed it toward his strengths. She incorporated his extensive knowledge of literature and obscure vocabulary. If he could not call up the exact answer, he was encouraged to get his meaning across utilizing complex word association and phrases from deep in his literary memory. The couple played word games like Dingbats and Mad Libs. They used “immersion therapy” to swamp West with language. When they were too tired to talk, they sang together and exercised together. And when it was all too much they collapsed and fell asleep. Upon waking they would repeat the process all over again.

It took several years, but West’s rehabilitation was a resounding success. He even wrote and published his own book about his experience titled, A Stroke of Genius. The lesson here is that finding the most effective therapeutic approach involves playing to an individual’s strengths. Success or failure in rehabilitating a person with neurological damage may just hinge on appealing to that individual’s unique “passion.”

West did not have Parkinson’s, but the story of his rehabilitation still has implications for those who do. There are therapies that address nearly every symptom of PD. Speech therapy helps with poor vocalization and impaired swallowing. Dance therapy helps with balance and focused movement. Tai Chi promotes body awareness and balance. Vigorous cycling, whether stationary or while riding a bicycle, helps with range of motion and may actually provide some relief from symptoms in general. Exercise and stretching helps keep muscles and joints flexible and strong.

Parkinson’s therapy is a rapidly developing field. Sometimes it seems there are as many different therapies as there are medications. How do you go about finding out which therapy works best for you? Is there a therapeutic mode that fits in with your individual “passion”? Who do you talk to about putting together your own therapeutic action plan?

Your experience provides an important guide for those who are new to the game and less knowledgeable.

What can you share about PD therapies with others that will help them cope?


Ken Aidekman is an investment advisor in Chatham, NJ. Among his activities in the Parkinson's community, he led the Parkinson’s Action Network’s (PAN) efforts in New Jersey to pass the Morris K. Udall Law for Parkinson’s Research and Education. At PAN’s first advocacy forum in 1994 he met Margot Zobel who was in the process of founding the Parkinson’s Unity Walk. Mr. Aidekman helped put together the Walk and became the organization’s first Chair.

[Note from PDF: We thank our friend Ken Aidekman for this thought-provoking blog. We welcome comments below on his post. For additional information on therapies for Parkinson's disease, visit www.pdf.org or contact the PDF HelpLine at (800) 457-6676 or info@pdf.org]

PAIRing up for Research: The Importance of Saying Thank You

Last week, we were excited to see a great example of pairing up (the slogan for our Parkinson's Advocates in Research, or "PAIR" program) at Vanderbilt University Medical Center (VUMC). In an article entitled, "Events honor early patients of novel Parkinson's study," VUMC reports on their study of deep brain stimulation surgery as a treatment for early stage Parkinson's. DBS is approved by the FDA as a treatment for mid stage Parkinson's, but not for those with earlier stage PD.

We were impressed to see how VUMC thanked their volunteers, all people with Parkinson's, who made the study possible. As the article notes, their 35 volunteers did an extraordinary thing by agreeing to either undergo surgery early on in their Parkinson's or to receive standard medicines. Each person also dedicated five separate weeks of their time over the course of two years.

As with all clinical studies, we only learned new lessons about PD because of those volunteers.

Will You "PAIR Up" for Parkinson's Research? 
This story rang true with PDF because VUMC's event reflects values similar to those that drive our PAIR program.  At PDF, we believe that people with PD must be primary partners in research­ as participants, but also in other capacities,­ in order for us to speed new treatments.

The importance of saying thank you is particularly key, because of findings such as those from a 2007 CISCRP survey which say that:

• 79 percent percent of clinical study volunteers report that they never hear from the sponsor or research staff after a trial has concluded, and; 
• 83 percent of volunteers say they are never told the results of their trial

Through PAIR, we are committed to changing this statistic and to ensuring that someone says thank you.  We are doing this in part through our signature PAIR Up for PD Research forums each April that - similar to VUMC -­ publicly thank people with Parkinson's disease who have volunteered for research studies.

    Courtesy of PDF Research Advocate Carolyn Weaver, made for her fellow Research Advocates.

Most of these forums are led by one of PDF's 180 Research Advocates (all of whom have completed one of our in-person PAIR Learning Institutes) in collaboration with local researchers.

PDF Research Advocate Bob Hankin at an April 2012 PAIR Up for PD Research Forum in New York, NY.

The thank you at the forum is usually a simple public recognition along with a small token from PDF (see first and last photos).  But it's an important step in ensuring people with PD are at the front and center of research.

We applaud VUMC's efforts to communicate with their volunteers and say thank you.  

What do you think about their efforts? Will you PAIR Up?

Visit our website to learn more about getting involved with PAIR, through our upcoming training for people with Parkinson's and care partners in Oak Brook, IL or our new online course.

PDF Champions Friday!

PDF wishes best of luck to PDF Champion Heidi Johnson and Evergreen Golf Club in Elkhorn, WI, on their Pars Fore Parkinson's golf tournament on Thursday, August 16.  They have set a fundraising goal of $4,000 with 100 percent of proceeds benefiting PDF! 

Pars Fore Parkinson's has been set up in honor of one of Evergreen Golf Club's rangers, who lives with Parkinson's disease. 

Spots are still available! If you live in the Eklhorn, WI area and are interested in playing a round of golf to support Parkinson's research, please contact Heidi at johnsh43@uwosh.edu or (262) 949-3110.

Here are all the Pars Fore Parkinson's details:

Date:

Thursday, August 16

Time: 

12:00 PM - Check In

1:00 PM - Shotgun Start

Location:  

Evergreen Golf Club

N6246 US Highway 12

Elkhorn, WI 53121

(262) 723-5722

*The tournament is $75 per golfer and includes 18 holes of golf, cart, steak cookout dinner and hole & raffle prizes. 

Remember: The Cure Begins With YOU!

Celebrate CARNAVAL with PDF!

The date is set for CARNAVAL!

On Wednesday, November 14, PDF is hosting Carnaval at Slate in New York City. This Brazilian inspired fundraising event will feature DJ Brenda Black, Samba dancing, games of chance, a raffle, buffet dinner and premium open bar. Proceeds from the event will benefit Parkinson's research. 

PDF will also pay tribute to Peter Dorn, longtime member of PDF's Board of Directors, co-owner of the Copacabana Club and one of the creators of Carnaval, which has raised nearly $500,000 for Parkinson's research. PDF will honor Peter for his generosity and commitment to PDF's mission. 

Are you interested in becoming more involved with PDF? How about joining the Carnaval committee? This is a great opportunity to use your creative mind and make a difference! To learn more about becoming a committee member or about Carnaval in general please contact (800) 457-6676 or info@pdf.org. Tickets will be available for purchase in September. 



Remember: The Cure Begins With YOU!

Vascular parkinsonism

From James Beck, Ph.D., Director of Research Programs

Recently, former President George H.W. Bush revealed in an interview with PARADE Magazine that he has vascular parkinsonism.

While not meeting the criteria for true Parkinson’s disease (PD), vascular parkinsonism mimics many features of PD.  As its name implies, vascular parkinsonism is often due to problems with the vessels in the brain regions that control movement and small strokes are the primary cause.  Although small strokes will cumulatively worsen the symptoms of vascular parkinsonism, it is otherwise not considered a progressive neurodegenerative disease like PD.

People with vascular parkinsonism often experience a “lower body parkinsonism” and have trouble with walking and maintaining balance – much like people with classic Parkinson's.  President Bush reports that he experiences such symptoms.  Generally, people with vascular PD are less likely to have the tremor of Parkinson’s disease.

Because the cause of vascular parkinsonism is fundamentally different from true PD, people do not always respond well to the current Parkinson’s disease medications.

Like all people who struggle with a neurological disease, President Bush has many obstacles to overcome.  Because his disease can mimic true PD, his story emphasizes the importance of getting an accurate diagnosis from a movement disorders specialist in order to best manage one’s disease.  PDF maintains a nationwide list of movement disorder specialists and encourages you to call (800) 457-6676 or email us at info@pdf.org to find one in your area.

PDF Champion Jennifer Neathery

A special thank you to PDF Champion Jennifer Neathery for making a difference in the fight against Parkinson's disease. Hear her story now! 

To become a PDF Champion like Jennifer click here to register or call (800) 457-6676.

If you are a runner looking for your next big race, join the PDF Champions marathon team at the Marine Corps Marathon on Sunday, October 28th. One entry remains! For more information please email us at info@pdf.org.

Remember: The Cure Begins With YOU!

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?

New York City Rhythm and Blues Concert: PDF Champions

This past Friday, June 29, I had the pleasure of attending a PDF Champions Summer Show hosted by the State Employees Federated Appeal in Queens, NY.

The event featured live music, dancing and a 50/50 raffle. Entertainment was provided by The New York City Rhythm and Blues Ensemble.

Dr. Christopher Hess, Columbia University Fellow, spoke to the audience about Parkinson's disease and addressed their questions and concerns.  Dr. Hess was the recipient of the Ronald and Isobel Konecky Fellowship for Parkinson’s Research at Columbia University Medical Center. PDF awards this Fellowship to exceptional fellows who after completion of their two-year program are offered the opportunity to continue to an additional third year of research.  PDF also provided collateral and education resources to the guests.

While the State Employees Federated Appeal's fundraising efforts are still underway, they hope to raise $2,500 for Parkinson's research. Thank you!

Please take a look at some photos from the event:

If you are interested in hosting your own concert or other type of PDF Champions fundraising event please contact us at (800) 457-6676 or click here to register online.

Remember: The Cure Begins With YOU!

Tuesday's Tip: PDF Champions

Is there a special occasion coming up in your life? Perhaps a wedding, anniversary or birthday?

If so, make the celebration special by using it as an opportunity to fight Parkinson's. Many PDF Champions have used life's favorite moments to fundraise for the foundation. In lieu of favors consider making a donation on behalf of your guests to PDF or encourage your guests to do the same by forgoing gifts and making a donation to PDF instead. 

There is no better way to honor someone with Parkinson's disease than by donating to Parkinson's research and The Fitzmorris-Riles Family of Abita Spring, LA did just that!

Tawyna Foust Fitzmorris contacted PDF at the beginning of the year to inquire about making a donation to PDF in lieu of wedding favors for her daughter Karlin Louise Fitzmorris and soon to be son-in-law Joseph Barnes Riles' March wedding. Tawyna's father and Karlin's grandfather, Robert Lee Foust, passed away from complications from Parkinson's disease three years ago. As a close family they wanted to honor Robert on Karlin's special day. PDF donations cards were placed at each table setting and a photo montage of Robert was displayed at the reception.

Thank you and congratulations to The Fitzmorris-Riles Family for becoming PDF Champions and making a difference in the fight against Parkinson's disease. 

If you are interested in becoming a PDF Champion like The Fitzmorris-Riles Family, please visit our website or give us a call at (800) 457-6676.  PDF can provide you with donation cards to display at your wedding or party. Please click here to see an sample.

Remember: The Cure Begins With YOU!

Protecting the People Who Test New Parkinson’s Treatments

We all want better treatments for Parkinson’s.  Tuesday’s announcement that one of PDF’s Research Centers - Rush University Medical Center, in Chicago, IL - received full accreditation from The Association for the Accreditation of Human Research Protection Programs, Inc. (AAHRPP) is another step in the right direction.

Fewer than 200 institutions around the country are fully or partially accredited by AAHRPP.

Before any new treatment, for PD or another condition, is approved it must first be tested in people – in clinical research studies – to ensure it is safe and effective.  The AAHRPP accreditation means that Rush is following the highest standards when it comes to protecting those people. 

As we discuss at length at trainings for PDF’s Parkinson’s Advocates in Research program, testing an experimental treatment always involves some risk – the reason a treatment is not yet available to everyone is that we don’t yet fully understand how it works. But we need to minimize those risks as much as we can and protect the rights of participants. 

AAHRP’s work is part of that progress. It tests research centers on a number of criteria to make sure the institutions are up to par.  To do its part, PDF has been involved in several initiatives, including collaboratively working on a Research Participants Bill of Rights, several pieces of which are featured in our educational booklet here.

If you would like to learn more about research studies and how you can ensure people with Parkinson’s are involved, learn more about our PAIR program or join our ongoing online course,which runs every Thursday in June (the recordings will be posted in July).

PDF Champions Friday!

Next Friday, June 29 the New York State Education Department, Queens ACCES-VR will be hosting a S.E.F.A Summer Show to benefit PDF! 

The PDF Champions concert will feature live music, dancing and a 50/50 raffle. Entertainment will be provided by featured artist Mustang Sammy with music by The New York City Rhythm and Blues Ensemble. Representatives from PDF will be making a pre-event presentation focused on Parkinson's disease, symptoms, detection, medical treatment and counseling. A PDF information table will be set up in case guests have any questions or need any educational collateral.

Here are all the concert details:

Date: Friday, June 29

Presentation Time: 12:10 PM
Concert Time: 12:30 - 3:00 PM
Location: NYC Department 3rd Floor Cafeteria
1 Lefrak City Plaza 59-17 Junction Boulevard
Corona, NY 11368

A special thank you to the New York State Education Department, Queen ACCES-VR for becoming a PDF Champion and raising funds to support Parkinson's research! If you live in the Corona area please be sure to attend this fantastic concert and support PDF.

Become a PDF Champion today and join a group of grassroots fundraisers around the US who are working in their communities to improve the lives and futures of people with Parkinson's. If you are interested in hosting your own concert or other type of PDF Champions fundraising event please contact us at (800) 923-4778 or click here to register online.

Remember: The Cure Begins With YOU!

Shop For A Cause: PDF Champions!

Do you shop at Macy's? If so, this is the perfect opportunity to shop 'til you drop and support PDF at the same time! 

Purchase a $5.00 savings pass through Macy's Shop for a Cause program and 100 percent of your donation will support Parkinson's research. Your savings pass can be used at any Macy's on Saturday, August 25.

You'll save 25 percent all day on regular, sale and clearance items, including home – even save on most brands usually excluded! Save 10 percent on electrics/electronics, watches, furniture, mattresses, and rugs/floor coverings. Exclusions apply. Saving pass holders are also eligible to register to win a $500 Macy's gift card.

Be sure to spread the word to your family, friends and co-workers! Click here to purchase today.

Remember The Cure Begins With YOU!

The Importance of Brain Banks for Neurological Research

Would you consider donating your brain for science?

A few years ago, Diana Barnwell wrote an article, entitled, My Last Gift.  She chronicled her decision to donate her brain … and the complicated issues that arose when making her decision. 

Studying actual human brains – donated by individuals upon their death, as a contribution to science – is a vital way to understanding neurological diseases such as Parkinson’s.  After all, the brain is the only mysterious organ that we can’t study during a person’s lifetime.

This is why it was so devastating to scientists around the world, particularly those at the Harvard-affiliated McLean Hospital, when the institutions’ brain bank suffered a freezer dysfunction last week.  The institution lost 150 brains that had been donated for research.

They say this constitutes one-third of the world’s largest collection of autism brain samples.  The brain bank also housed brains designated for Parkinson’s research.

How does brain donation work?  It varies at institutions around the country – from their requirements for donating to whom they consider eligible.  For instance, some institutions require a donor to be seen several times a year at their center, while others require just one visit.  Most times, much like any kind of organ donation, the decision to donate needs to be made well ahead of time.

For a listing of Parkinson’s brain banks in the US, browse PDF’s website, which includes our own PDF-funded brain bank at Columbia University Medical Center.

Back in 2010, Diana said her decision to donate was, “a magnificent legacy!”  Do you agree?

Friday's Tip: PDF Champions

Obtaining in-kind donation(s) for your PDF Champions event can make all the difference! In-kind donations can help increase the amount you are able to donate to Parkinson's research by keeping your expenses down.

In-kind donations are those donations that are done in goods and services rather than monetarily.

Start by brainstorming.  The easiest way is to make a list of all your PDF Champions event expenses. Take a look and see what items you could potentially have donated. Here are some examples: food, beverages, rental fees, printing, basic supplies, etc.

Identify one sponsor that you can approach.  Inside your PDF Champions Welcome Packet you will find a sample donation letter that you can use as a guide for approaching any business to donation to the Parkinson's cause. Don't be afraid to approach any type of business, whether you have a personal connect with them or not. Companies are very willing to help out in their communities, especially when they know the proceeds will be coming to a great charity like Parkinson's Disease Foundation.

Offer to promote their business in exchange for their service. Add their logo to the invitations, t-shirts or event signage. Invite them to have a presence at the event by setting up an information table. The possibilities are endless. Be sure to ask them what would be the most beneficial for their company.

Remember: The Cure Begins With YOU!

Easing Dyskinesia: PDF-funded Research from 2007 Leads to Testing of Experimental Drug

Earlier this week, PsychoGenics Inc., announced that an experimental drug for Parkinson’s, eltoprazine, seemed to reduce dyskinesia in people with Parkinson’s in early studies.  Dyskinesias are the twisting and writhing movements that occur as PD progresses – a common side effect of the medication levodopa (Sinemet®).   

Back in 2007, it was PDF-funded researcher Manolo Carta Ph.D., along with Anders Björklund, M.D., who performed the pre-clinical research that led to the identification of this drug.  At the time, while many researchers were looking at dopamine neurons as the culprit behind dyskinesias (through their interaction with levodopa), Dr. Carta’s proposal suggested something different – serotonin neurons.  His proposal led to a one-year research fellowship funded by PDF.

After completing his year of research with PDF funding during which he laid the foundation for this approach, he and his colleagues were able to investigate an experimental compounds that might help with dyskinesias.  With the support of other funders, they have now been able to study the effects of eltoprazine in people in this early stage trial – to see whether it is a viable drug treatment.

The study results announced earlier this week indicate positive news about eltoprazine’s potential to ease dyskinesia and possibly some non-motor symptoms of PD.

However, the drug will have to undergo rigorous testing – in additional people with Parkinson’s in phase II and phase III clinical trials – before we know if it’s safe and effective.  While we don’t yet know the fate of this drug, the results help us learn more about dyskinesias so we can find a solution in the future.

PDF believes it’s important to fund ideas like this so that scientists can have both the freedom to explore novel ideas for Parkinson’s and the time they need to gather data that can prove the promise of their ideas.  In Dr. Carta’s work, this proved to be the case. 

We believe this philosophy – funding creativity early on – will help researchers prove their case to other funders that can help them to further develop their ideas ... ultimately into new treatments and a cure for Parkinson’s. 

What are your thoughts? Do you or a loved one need a drug for dyskinesia?

Please share your thoughts below, and as always, call our HelpLine at (800) 457-6676 with any questions you or a loved one may have about Parkinson's.

Happy Birthday to the Original PDF Champion

Parkinson's Disease Foundation (PDF) would like to recognize the birthday of our founder and the original PDF Champion, Mr. William Black!

In 1957, Mr. Black’s, controller and close friend was diagnosed with Parkinson’s disease. Appalled to learn that no truly effective therapy was available, nor was any basic research being conducted on the disease, Mr. Black set up PDF to establish a research program aimed at finding effective drug treatment. He made two major gifts: one to Columbia University to help build the research laboratory with a floor dedicated to Parkinson’s research; the other to endow PDF.

Help PDF fulfill Mr. Black's dream of finding a cure for Parkinson's by becoming a PDF Champion today!

Turn your passion and talents into fundraising for Parkinson's disease research. Here are a few ways that you can fundraise:

• Hold a car wash
• Run a marathon
• Coordinate a concert
• Create and sell your art
• Host a wine tasting
• Arrange a bake sale
• Complete a triathlon
• Fundraise online
• Organize a silent auction
• Forgo holiday gifts and give to PDF

To sign up to become a PDF Champion please click here!

Remember: The Cure Beings With YOU!

What's On Your Wishlist? Seeking Your Feedback for our Educational Programs

What is the one topic you wish PDF's educational programs would cover about Parkinson's disease?

... medications?

... nutrition?

.... exercise?

We hope you tell us by taking our very short (promise - it's just four questions) survey.

You may already know that PDF regularly hosts online seminars, or PD ExpertBriefings, along with a host of other educational programs.  Available live (both online and by phone) and recorded (both online and as DVDs), they are some of our most popular programs.

But we want to make sure we're covering the topics that are relevant to your life with Parkinson's.  So we're asking you to rank several topics and then tell us about any others we left out.  Please, if you have just a few minutes today, make your voice heard.


You tell us what you need our programs to cover. --> We'll do our best to deliver.

Take Survey Now

(PS: To get a sense of past and future topics, browse our past online seminars and sign up for those upcoming online seminars.)

Wednesday Picture Day: PDF Champions

A special thank you goes out to PDF Champion Mallory Hiltz on her successful 5K Walk/Run for Parkinson's held on Saturday, April 21, at Brady's Run Park in Beaver, PA!  

As part of PDF Champions Campus Challenge program, Mallory and a few of her classmates from Community College of Beaver County worked tirelessly on the walk to raise money and awareness for Parkinson's disease!

Mallory and her classmates raised over $1,100 to support Parkinson's research! Check out these great photos from the walk. 

Remember: The Cure Begins With YOU!