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]