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August 2014 Volume 28, Issue 3 Newsletter of the American Parkinson Disease Association Greater St. Louis Chapter LNK Serving Missouri and Southern Illinois IN THIS ISSUE Be An Advocate! Bend the Curve— y definition, an advocate is a “supporter, promoter, campaigner, Bbacker,” and that is exactly what we need when you consider that Change the Future ......................... 2 there are 11,238 PD cases among Medicare beneficiaries in Missouri and 23,050 PD cases in Illinois (Willis et al). Of those numbers, 53.5% Beating Caregiver Guilt .................. 4 of PD patients do not see a neurologist in Missouri and 47.4% of PD patients do not see a neurologist in Illinois. This newsletter is distributed Focus on Fashion Debbie Guyer, MA to 6,000 people in the bi-state region and another 2,500 across the and Philanthropy ............................ 5 country outside of our service area. That means we have a lot of work to do to make connections with everyone touched by Parkinson disease, much more than our End of Life Issues with PD ............. 6 staff of two can manage. One of our newest members, Terri, came check-out lane at the grocery store or with And Parkinson’s Makes Three ....... 7 into my office one Friday morning before friends at a party. With the ever-increasing Tai Chi with a request. She wondered if I number of individuals being diagnosed Golf Tournament .........................8-9 might give her information about PD and with Parkinson disease, don’t assume they the APDA to share with her primary care have found the APDA. They may not be as Tributes and Donations ...........10-11 physician and her neurologist in private resourceful as you! Support Group Calendars........13-14 practice at a nearby community hospital. Just the other day, a couple stopped in “Do you think it would offend them?” to see the Center and schedule a PD101 Exercise Class Calendar .............. 15 I actually think the APDA and our session. He was diagnosed in 2011 at a wonderful Parkinson Resource Center large Movement Disorder Center here in Conference for Care Partners and in Chesterfield are best-kept secrets in St. Louis, but had never been told about Adult Children .............................. 16 spite of our efforts to raise awareness, and APDA until they switched to another I welcome patients and family members Movement Disorder Specialist recently. to advocate on our behalf. A welcome He gave them the LiNK newsletter and told packet containing a handbook, exercise them to call us. The patient’s wife called, booklet, program and service descriptions, and a welcome packet was mailed out that LiNK newsletters, wallet medication card, same day. They followed up by stopping literature order form, The Parkinson Journey in to see our exercise class and schedule DVD, and a note to the physician were an individual PD101 for newly diagnosed given for Terri to deliver during her next individuals and their family members. office visit. Terri came back to report that These sessions are available to all patients her physician readily sends people to the and families who have been recently Alzheimer’s office, the American Heart diagnosed at many APDA Information & American Parkinson Disease Association Association, the Cancer Society, and MS Referral Centers across the country. APDA Greater Society, but had no idea we existed. He was We hope you will join the many advocates delighted to receive the information for the already working as volunteers for the St. Louis Chapter many Parkinson patients he treats. 1415 Elbridge Payne Road, Suite 150 APDA, spreading the word and making Chesterfield, Missouri 63017 John came in to pick up information for his certain that no one feels alone and Ophthalmologist with whom he engaged unconnected. Please visit our website, 314-362-3299 www.stlapda.org in conversation when he reported changes www.stlapda.org, where you can read in his medical condition since his last visit. about recent news, peruse the archived And when I went in for my annual visit, newsletters from 2007 for information and OUR MISSION the discussion with this same physician find a link to another wonderful website. Our mission is to enhance the quality of life for about Parkinson’s and vision problems There is so much to learn and so much to people with Parkinson disease, their families, and continued. I can think of no better way to do for yourselves and for others, and we caregivers in our communities throughout spread the word than when you visit with appreciate your continued support and your Missouri and southern Illinois, and to provide your physicians. Spread the word with advocacy. funding for ongoing Parkinson disease research. the person standing next to you in the APDA GREaTER ST. LoUIS CHapTER Deborah Dalin Guyer, MA, Bend the Curve—Change the Future Executive Director Michelle Burack, MD. PhD [email protected] Assistant Professor, Department of Neurology, University of Rochester Medical Center Michelle Brooks, MSW, Program Greetings from Rochester, NY! I moved from St. Louis to Rochester after my Coordinator/Fundraising Associate movement disorders fellowship with Dr. Perlmutter ended in 2007. I was delighted [email protected] to hear from Debbie Guyer, who asked me to contribute as a guest author to the APDA CommUNITY RESoURcE CENTER St. Louis APDA LiNK newsletter. This is an exciting time to be a researcher and physician working with people with Parkinson disease, and we are learning new 1415 Elbridge Payne . Suite 150 things every day that can improve quality of life and move us closer to a cure. I Chesterfield, MO 63017 Hours: 7:30 am–4:00 pm M–F Michelle Burack want to share what we are learning in a way that is understandable and relevant Phone: 314-362-3299 to YOU, since you are the reason we work so hard to beat this disease. Fax: 314-747-1601 ur local support group chapter’s Everyone’s PD progresses differently; APDA INFo & REFERRal CENTER Oannual symposium was held in April, some progress more slowly, others more Campus Box 8111 . 660 S. Euclid and I had the opportunity to hear John rapidly. There are many different tools that St. Louis, MO 63110 Baumann, a motivational speaker who “just researchers use to measure progression www.stlapda.org happens to have Parkinson disease.” His for clinical trials, and different tools show action-oriented, positive perspective, and different rates of change per year. It doesn’t BoaRd oF DIREcToRS quirky sense of humor were the highlight of necessarily progress in smooth linear Bob Goldsticker . Vice President the day. A video of one of his presentations fashion. So this graph is a rough sketch I Rebecca B. Farris . Secretary can be found on the internet at http:// created simply to illustrate the following Brian Hantsbarger . Treasurer theinspiringesquire.com. point: The transformation John MEmbERS aT LaRgE described—the improve- David Butler Joe Marchbein ment in well-being that Patsy Dalton Melinda Mierek came about once he David Dankmyer Anne Ross-Weldy changed his lifestyle—is Rob Goren Robert Sanderson Ted Hume Matt Schumacher something that I have Jack Strosnider observed in my clini- cal practice many times, DIREcToR EmERITUS but has been hard to “prescribe” effectively Susan B. Levin for everyone. For some MEdIcal DIREcToR people, just knowing that it is possible to change Joel S. Perlmutter, MD the future is enough to energize and moti- NaTIoNal AFFIlIaTIoN No matter which curve you find yourself on vate action. For others, it’s not so easy. No today, you can bend that curve and change APDA • 135 Parkinson Ave. matter how it’s phrased—“Commit,” “Just the future. Staten Island, NY 10305 Do It,” “Mind Over Matter,” “Whatever it 800-223-2732 Takes”—it can feel like trying to pull your- The fundamental principle is “use it or self up by your bootstraps. lose it”—physical activity and social EdIToR engagement are key to keeping brain cells Fortunately, the rules of gravity do not apply alive, and can even stimulate brain cells Deborah D. Guyer here! Daily choices and mental attitude can to form new connections. Inactivity leads have a significant long-term impact on the CoNTRIbUTINg EdIToRS to faster decline not only in the brain, but evolution of the disease. YOU DO have also erodes mobility, flexibility, and strength Michelle Brooks Bob Sanderson the power to change what happens. No through changes in the muscles and joints. Betty Hayward Erin Schreiber matter what milestone you may have heard about that seems like an inevitable part Some common barriers that can make it of your future, it is possible to push those feel like a struggle against the boot straps: Disclaimer: The information and reference material contained herein concerning research being done in the milestones farther into the future through 1. Apathy and depression are common field of Parkinson disease and answers to readers’ questions are solely for the information of the reader. It the choices you make today. Researchers symptoms of PD. should not be used for treatment purposes, rather for are hunting and searching for medication discussion with the patient’s own physician. that can change the course of the disease, We know that PD can affect the mood but you already have access to powerful circuits in the brain—“it’s not just a interventions that can bend the curve. movement disorder.” Sometimes the mood 2 LiNK August 2014 Volume 28, Issue 3 changes are easily recognized as depression, with loss of medication. However, too much PD medication in the reward motivation and interest accompanied by feelings of hopelessness, circuits can lead to altered decision making and risky behavior worthlessness, or sadness.

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