August, 2015 Edition

AUGUST 2015 Volume 29, Issue 3

Newsletter of the American Parkinson Disease Association Greater St. Louis Chapter Serving Missouri and Southern Illinois

IN THIS ISSUE

The Helplessness Antidote 1 The Helplessness Antidote Managing Constipation Peter Dunlap-Shohl in Parkinson Disease 2 Mindfulness Works in Peter Dunlap-Shohl has worked as cartoonist for the Anchorage Daily News for over 25 Parkinson’s Patients 3 years. He was diagnosed with Parkinson disease in 2002 and maintains a blog about Excessive Daytime Sleepiness living with Parkinson’s that features original cartoons and illustrations. in Parkinson Disease 4 here was no reason I deserved a visit Yoga, Tai-Chi and dance can play in aiding Sing Your Way to a Better Voice! 5 from an angel. I didn’t believe in them the crucial ability to balance, keeping us, Putting for Success 6-7 Tat the time, nor do I now. Nevertheless, PD patients, out of hospitals with broken Tributes and Donations 8-9 as I walked from my doctor’s office in a bones. There was nothing about the value Drug Expense Relief 10 haze of questions, fears, and old-fashioned of boxing, or weight-training, or the big- Optimism Events 10 misery, it was waiting for me. Waiting movement strategy that now constantly because a simple sentence had just laid make news in the Parkinson’s community. The Worst Advice for waste to my plans, my dreams, Family Caregivers 11 I had nothing to go on beyond my 43-year old life, “I think you Sewing the Seeds of Optimism 12 the urgent proclamation of have Parkinson Disease.” Support Group Calendars 13-14 my mystic visitor and the Exercise Class Calendar 15 How could I have Parkinson’s? conviction that, with my body Save the Dates 16 How long could I simulate under assault by this mysterious “normal”? When would I have and destructive disease, I had to give up my job? What would to do all I could to protect the this mean for my family? When underlying strength and ability should I tell my friends? The to move that I still possessed. So questions were silenced by a it was a matter of faith for me voice that rang with clarity to get out of bed each morning, and conviction. “You have climb on my elliptical trainer to exercise!” the angel’s voice and go as fast and hard as I could intoned, “or you will descend in for a half-hour, five times a week. American Parkinson Disease Association no time in an ever-steepening But it wasn’t long before it was APDA Greater spiral to complete incapacity.” clear to me that I was seeing St. Louis Chapter The angel left me, in effect, mitigation of my symptoms. My 1415 Elbridge Payne Road, Suite 150 with a little stone tablet bearing the 11th tremor visibly subsided after a good exercise Chesterfield, Missouri 63017 Commandment: “Move it or lose it.” It was session, and my speech improved. While 314.362.3299 | www.stlapda.org a moment I think of as “The Visitation of out riding my bike, I would catch myself not the Spandex Angel.” only singing, but actually hitting the notes I was aiming for. And nothing dissipates the Check out our Facebook page Where the angel got its information, I don’t fog that rolls thick around my head in the at www.facebook.com/ know. This was over a decade ago, and mornings more effectively than exercise. APDAGreaterStLouisChapter though I burned up the Web in a search These effects and the research that shows OUR MISSION for something, anything, that could give they are no mere fluke should be familiar me a straw to grasp, there was little there. Our mission is to enhance the quality of gospel to anyone coping with PD. life for people with Parkinson disease, Dr. Jay Alberts had yet to publish his signal their families, and caregivers in our discovery concerning tandem bicycling and But here are two additional reasons to communities throughout Missouri and the substantial symptomatic relief it can move your body. The first, beyond the southern Illinois, and to provide funding bring. There was no mention of the role benefits cited above is, it just feels good. for ongoing Parkinson research. continued on next page APDA GREATER ST. LOUIS CHAPTER The Helplessness Antidote continued from front page Deborah Dalin Guyer, MA Executive Director Should the day come, at last, when Parkinson progressive, incurable, and disabling, and [email protected] disease forces you into a wheelchair, you will we were helpless to do anything to change it. Sarah Schmerber, OTD at least have made the most of your ability Helpless. Exercise can liberate us from this Program Coordinator/Development to move while you could and probably made deadly feeling, freeing our spirits as we free [email protected] that window in time when movement was our bodies. ■ Michelle Almengor, BA possible larger than it would have otherwise This article appeared in the NWPF publication on April 24, Program Coordinator/Administration been. Second, until these recent discoveries 2015, and is reprinted with permission of NWPF. Peter is a blogger in this wonderful weekly publication. [email protected] about exercise, all we could do was manage our decline. We were told our disease was APDA COMMUNITY RESOURCE CENTER 1415 Elbridge Payne ■ Suite 150 Chesterfield, MO 63017 Managing Constipation in Parkinson Disease Hours: 7:30 a.m.– 4:00 p.m. M–F Kathrynne Holden, MS, RD, is a Registered Dietitian specializing in PD. She has authored many books about Phone: 314.362.3299 PD, including Eat Well, Stay Well With Parkinson’s Disease and Nutrition Matters. www.stlapda.org onstipation is among the most common sweeteners rather than foods made with sugar BOARD OF DIRECTORS OFFICERS non-motor symptoms of Parkinson and high-fructose corn syrup. David Dankmyer ■ President Cdisease. It can occur years before High-fiber foods Next, look for foods that are Matt Schumacher ■ 1st Vice President diagnosis in some people. This happens when naturally high in fiber. Most vegetables and David Butler ■ 2nd Vice President PD affects the autonomic nervous system that ■ fruits contain a variety of fibers and pectins, Melinda Mierek Secretary guides the movement of the muscles of our ■ all of which are important to our health. Brian Hantsbarger Treasurer gastrointestinal tract, including the colon. ■ Raspberries, pears, and apples are among the Rebecca B. Farris Member-at-Large The movement, called peristalsis, becomes highest-fiber fruits, while artichokes, green DIRECTORS slowed so that the stool moves more slowly peas, broccoli, leafy greens, such as turnip through the colon. Kevin Fairlie greens and spinach, and sweet potatoes are Rob Goren Ted Hume The task of the colon is to receive watery high-fiber vegetables. Soluble fibers help Joe Marchbein indigestible residue from the small intestine control blood glucose; insoluble fibers keep Anne Ross-Weldy and then, as the residue moves along, to the stool soft and bulky. Both may act as a remove some of the water. Gradually, as it substrate (“food”) for friendly bacteria in the DIRECTOR EMERITUS travels through the colon, the residue becomes colon. Susan B. Levin a soft, bulky stool that is easily passed. But Whole grains contain complex carbohydrates when we don’t consume enough liquids or MEDICAL DIRECTOR as well as fiber, and can be a valuable addition fiber, the residue is not as watery. The colon Joel S. Perlmutter, MD to the menu. Whole rye and whole wheat continues removing water, but the stool moves bread, oatmeal porridge, brown rice, and NATIONAL AFFILIATION slowly. Too much water is removed, leaving a barley (preferably unhulled barley which is ■ hard, dry stool that is difficult to pass. This is APDA 135 Parkinson Ave. one of the highest-fiber grains) are excellent what we know as constipation. Staten Island, NY 10305 everyday foods. 800.223.2732 Prolonged constipation can, in some people, Legumes (dried beans, peas, and lentils), affect medications. PD medications may fail EDITOR seeds, and nuts are also extremely high in fiber to take effect. Then, when a bowel movement Deborah D. Guyer as well as important sources of minerals, such does occur, the medications can “kick in” as magnesium, and vitamins, such as folate. CONTRIBUTING EDITORS within minutes. But until then, the person Legumes should be included in meals at least Michelle Almengor may experience prolonged “off time.” three or four times a week. Split pea soup, Betty Hayward

Sarah Schmerber How can constipation be prevented? When hummus, Cuban black beans, bean salads, peristalsis is slowed, it becomes more casseroles, and refried beans are just a tiny important than ever to pay careful attention fraction of the multiple ways to use and eat to daily meals. Highly-processed foods, beans. If you have a pressure cooker, you can made with refined flour and sugar, have been cook them yourself and control the salt and stripped not only of their natural minerals flavoring, but canned beans are inexpensive Disclaimer: The information and reference material contained herein concerning research and vitamins, but of their fiber also. Avoid and perfectly good as well. Chia seeds, being done in the field of Parkinson disease and answers to readers’ questions are solely for the these highly processed foods. Instead, choose flaxseeds, sesame seeds, coconut, almonds, information of the reader. It should not be used whole-grain breads, crackers, and breakfast and sunflower seeds are all rich in both fiber for treatment purposes, rather for discussion with the patient’s own physician. cereals. Use honey, maple syrup or stevia for and healthful fats. continued on page 12

2 LiNK AUGUST 2015 VOLUME 29, ISSUE 3 Mindfulness Works in Parkinson’s Patients John Zapanta, PT, DPT, conducts research, and McKay Murdock, SPT, is a physical therapist intern at the Colorado Physical Therapy Specialists. ast research has already shown that exercise can significantly reduce symptoms of PD and help a person move and feel better. However, the World Health Organization defines health as “a state of dynamic harmony between the body, mind and spirit Pof a person.” So is there more that we can do besides just exercise to counteract the effects of PD? Researchers respond with a resounding “yes!” Enter mindfulness. Those who practice mindfulness have been shown to have enhanced immune systems, relief from chronic illnesses, decreased anxiety, better focus, increased satisfaction with exercise and even structural brain change, a process called neuroplasticity. So what exactly is mindfulness? The Remarkable Discoveries and Recoveries recording CDs of himself singing, and exercise of mindfulness can include from the Frontiers of Neuroplasticity. learning French. breathing, self-talk, visualization or more Dr. Doidge recounts the story of how A longtime practitioner of mindfulness advanced methods such as tai chi and qi his friend with Parkinson’s was able to for 10 years, Rob Piper, a Fort Collins, gong. By practicing mindfulness along normalize his walking pattern. He did Colorado, resident, was diagnosed with with a physical fitness program, one may this by slowing down his walking, using PD in 2014. He describes mindfulness in engage the whole body and mind to extreme “meditative” concentration to his life to be “living in the present moment improve neuroplasticity. break apart each step, and practicing for and not dwelling in the past or future.” a full year. He found that by bringing Research on the benefits of mindfulness Mindfulness has helped him acknowledge the movement into conscious attention, for neurologic diseases such as PD has his thoughts and emotions by being more he was able to take advantage of different exploded. present and responding to them rather brain areas that were not affected by PD. than reacting to them. Sometimes he Long-term mindfulness practitioners This same friend eliminated his tremors feels anxious regarding the future of his increase the working capacity of the brain, by being more aware of his movement. For PD, but he is able to use mindfulness connections within the brain and brain example, he held his glass of water more training to calm his anxieties and have matter compared to non-practitioners. firmly, fixed his handwriting by switching more control of his mind and body. He This suggests mindfulness may keep from cursive writing to printing capitals, describes how breathing is a “natural brains young and healthy. An eight-week and discovered that by holding his fork at tranquilizer” that makes him feel more mindfulness training program makes 45 degrees toward himself that his tremor focused during the day, improves his sleep measurable changes in the brain structures disappeared. Other brain stimulation at night, and makes him more consciously associated with learning and memory, activities he used included crosswords, aware of his physical movements. sense of self, empathy and stress. Only four Sudoku, bridge, chess, poker, dominoes, days of mindfulness training can enhance He describes being more conscious of all the ability to sustain focused attention. It of his senses during exercise. He sees more also shows significant improvements in clearly, feels the hiking poles in his hands mood, visuo-spatial processing, working and the rocks underneath his shoes, smells memory, and cognition. the fresh air, and hears nature around him. Rob considers mindfulness to be an Dr. Norman Doidge, MD, a leading integral and positive experience for both expert in neuroscience and medicine, his physical and nonphysical symptoms of has made some fascinating discoveries on Parkinson’s and recommends it to those the power of the mind, as described in who are interested in practicing it. ■ his book, The Brain’s Way of Healing:

APDA–GREATER ST. LOUIS CHAPTER AUGUST 2015 LiNK 3 Excessive Daytime Sleepiness in Parkinson Disease Baijayanta Maiti, MD, PhD, Clinical Fellow, Movement Disorders Section, Department of Neurology, Washington University in St. Louis Although the key motor symptoms of shaking, stiffness, paucity of movements and balance problems have traditionally received more attention and are quintessential features for the clinical diagnosis of Parkinson disease (PD), a mélange of non-motor symptoms including fatigue, anxiety, excessive daytime sleepiness (EDS), depression, pain, constipation, and bladder problems can often be more troublesome to the patient and at times can even precede the onset of motor symptoms.

DS is one of the more common non- • Restless leg syndrome (RLS, where about 46% of enrolled subjects had sub- motor symptoms and greatly impacts there is an irresistible urge to move the jective sleepiness, only 13% fulfilled the Ethe quality of life of PD patients, often legs due to an underlying unpleasant criteria for objective sleepiness based on by imposing another set of restrictions sensation, occurs usually during rest at the MSLT. Interestingly, PD patients with on their activities. The prevalence of night, and resolves with movement) sleepiness had higher BMI and were more EDS in PD patients has been reported frequently overweight than those without The association of EDS with depression to be anywhere between 15-75%. EDS EDS. Pain and sleep apnea syndrome also is somewhat less clear. The discordance in has gained wide attention ever since the proved to be key contributory factors of the published literature regarding the po- initial report in 1999 of sleep attacks in EDS in this study. tential contributory role of each of these eight PD patients, all of whom suddenly factors could be attributed to the varying If you develop excessive daytime som- fell asleep while driving. Incidentally, they characteristics of the investigated pop- nolence, you should discuss it with your were all taking dopamine agonists, a doctor. While there is insufficient ev- class of antiparkinsonian medication. idence for pharmacologic treatment of Although a few studies have suggested EDS, stimulants like modafinil and a stronger association of EDS with caffeine have shown some benefit in these agonists than levodopa (another small trials and could well be an option widely used antiparkinsonian in carefully selected cases. However, medication), other groups have found there are other measures that could it is the total amount of dopamine potentially improve EDS. Eliminat- supplementation and not the specific ing drugs with sedative side effects, category of drug that matters. whenever feasible, or optimizing the Concurrent use of medications medication regimen often makes a with sedative side effects could also significant difference. Pain can often worsen EDS, but EDS is not merely be a sensory manifestation of PD it- a treatment side effect. Few studies ulation in terms of disease severity and self or could be secondary to off-period suggested that it could be a manifestation duration, accompanying cognitive impair- dystonia, both of which could respond of PD itself and could worsen with disease ment, or due to inferences drawn from an to levodopa dose adjustments. If there is progression; however, other studies have inadequate number of study subjects and a definitive temporal relationship of EDS failed to prove this association. Several varying scales used to assess EDS in these with antiparkinsonian medication, minor studies have also implicated multiple studies. dose adjustments or switching the drug sleep problems to be contributing to EDS. EDS is usually assessed in the clinic by a class could be effective. Appropriately These include: brief, standardized, widely used self-ques- evaluating for and addressing comorbid • Sleep fragmentation (multiple tionnaire called the Epworth Sleepiness sleep problems like sleep apnea, treating nocturnal awakenings either due to Scale (ESS), which is a subjective measure RBD with clonazepam, an extra dose of wearing off of levodopa resulting in of the propensity to fall asleep in certain levodopa at bedtime to prevent nocturnal stiffness or even emergence of shaking, daily life situations. A score greater than wearing off, or even simple measures like or nocturia i.e., waking up multiple 10 is usually considered pathological. avoiding extra fluid intake after dinner to times in the middle of the night to go A more objective way to measure EDS prevent nocturia could ultimately improve to the bathroom) is using MSLT (Multiple Sleep Latency quality of sleep and potentially ameliorate Test), which is a measure of one’s ability EDS. Lastly, the merits of regular exer- • Sleep apnea (multiple transient to fall asleep during daytime in standard- cise cannot be overemphasized. It helps episodes of involuntary cessation of ized test conditions. A recently conducted breathing during sleep) regularize the sleep wake cycle, prevent in- large scale study by a French group used somnia, manage body weight, and could both subjective and objective measures to • REM sleep behavior disorder (RBD, thus have a significant positive effect on marked by dream enactment) evaluate the role of potential contributory EDS in addition to its proven long-term factors. This group found only a weak cor- global health benefits. ■ relation between these measures. While

4 LiNK AUGUST 2015 VOLUME 29, ISSUE 3 Sing Your Way to a Better Voice! Linda McNair, MT-BC, is Music Director of Tremble Clefs of Greater St. Louis and a Music Therapist at Bethesda Meadow in Ellisville.

bout 90% of people with Parkinson’s will experience music therapist. changes in their voices or their ability to make speech According to Dr. Colum MacKinnon, PhD., Assistant Professor Asounds during the course of the disease. These changes in Neurology at the University of Minnesota, “Data shows us may make a person’s speech less precise and more difficult to that listening to music increases dopamine.” Michael S. Okun, understand. Most commonly, the voice becomes quieter. Other M.D., University of Florida Health and Professor of Neurology, symptoms include a narrowing of the vocal range resulting in seems to agree with this statement, adding that “there is monotone speech, difficulty sustaining breath while speaking, mounting evidence to support the idea that singing can benefit and/or a breathy or hoarse quality. The symptoms can lead to Parkinson disease patients, and Dr. Stegemoller’s study shows difficulty in communicating with family and friends as well as that benefits extend beyond just the voice, which is interesting frustration on the part of the individual living with Parkinson’s. and may have practical implications for the field.” In spite of all the changes occurring, one can affect a change and positively make a difference. There are a number of therapeutic Any work towards strengthening the voice is vital to interventions that research has shown can maintain and even maintaining the ability to communicate and keeping the improve one’s voice. voice healthy. With the current research showing evidence of significant improvements One of the therapeutic in four distinct areas interventions receiving (voice volume, breathing, increased attention is swallowing, and quality singing. In an exciting new of life), why not consider research study conducted joining a vocal group at Iowa State University, such as the Tremble Dr. Elizabeth Stegemoller, Clefs? Tremble Clefs of Ph.D, MT-BC, examined Greater St. Louis meets the effects of structured each Saturday in Ladue singing on individuals from 1:30-3:00 p.m., with Parkinson’s. Prior and rehearsals follow to beginning her study, much the same format Dr. Stegemoller screened as was outlined by Dr. her participants to Stegemoller. determine voice quality and swallowing ability. Tremble Clefs of Greater Additionally, each St. Louis is in the process participant completed of conducting its own a quality of life survey. research. Under the Over the course of eight guidance of Erin Foster, weeks, individual groups OTD, MSCI, OTR/L, met at four different study sights across Iowa. Several of the Assistant Professor of Occupational Therapy, Neurology and groups met twice weekly while others met only once a week. Psychiatry at Washington University School of Medicine, Sarah Each of the groups followed the same format for their rehearsals Risso is currently conducting research with our Tremble Clefs and was led by a music therapist. group. Hoping to lend even more support to group singing, Sarah, MSOT/S, is directing the research as she completes work The sessions began with a “hello song,” after which the participants on her master’s degree in Occupational Therapy. proceeded through a series of vocal exercises that focused on improving the muscles used in singing as well as swallowing. Dr. Stegemoller suggests the best way to incorporate music into Once the warm-ups and exercises were completed, the groups your life is to listen to music, but not just any music – listen sang a selection of familiar songs. A closing song completed to your favorite preferred songs. “Sing in the car, sing in the each session. At the conclusion of the eight-week study, Dr. shower. It doesn’t matter. Take time out of your day to sing Stegemoller again assessed the participants for voice quality, whatever you want. It will help your mood and will work the swallowing, and quality of life. The results demonstrated a muscles that affect swallowing and speech.” The Tremble Clefs significant improvement in the areas of vocal volume, the ability group is always open to new members. If you or someone you to breathe in and out more efficiently, swallowing, and overall know would like to consider joining the group, please call the positive changes in quality of life. Her research gives strong APDA office 314-362-3299 for more information. Come, be support for the use of group singing when led by a certified part of the fun and sing your way to a better voice! ■

APDA–GREATER ST. LOUIS CHAPTER AUGUST 2015 LiNK 5 Putting for Success – Another Perfect Round! his year’s 17th Annual and Bob Warren, George “Butch” APDA Golf Classic in Welsch, Bob and Lynda Wiens. Tmemory of Jack Buck, AUCTION ITEMS were held on May 18, 2015, donated by Tom Ackerman, was our most successful Asymmetric Solutions, Autohaus fundraiser ever, raising just BMW, Golf Discount of St. over $138,000 for patient Louis, Gary Hoemann, Kyle services and Parkinson research. Lucks, Mister Guy Clothiers, The event, with the generous assistance of Honorary Chair John Dan McLaughlin, John Mozeliak Mozeliak and Auctioneer & Emcee Tom Ackerman, also served and the St. Louis Cardinals. to increase the awareness of Parkinson’s in our local community. It was another great day for golfing at Algonquin Golf Club in Caps off to these special Glendale! VENDORS who helped make the event a success: Autohaus Our success was attributed to our loyal sponsors: CELEBRITY BMW for the hole-in-one car; level sponsor: Moneta Group; MAJOR level sponsors: Selequity, Sterling Bank, Teva Pharmaceuticals and Wells Fargo; Tom Ackerman GOLF CART sponsors: Carol House Furniture and KPMG; CONTEST sponsors: Benton Homebuilders Community Partnership, BJC HealthCare, Enterprise Bank & Trust, Express Scripts and Riverside Furniture; LUNCH sponsors: Scottrade and Dave & Suzie Spence; COCKTAIL RECEPTION sponsors: Budget Billboards, Inc./ For Pete’s Sake, Delta Dental, Steve & Lynn Hurster, Merrill Lynch Wealth Management and the St. Louis Cardinals; BEVERAGE/ SNACK sponsors: John & Jean Basilico, Centric Group, Gershman Commercial Real Estate, SE Farris Law Gil Hoskins, Bob Warren, John Mozeliak, firm; DRIVING RANGE Bill Warren, Bobby Warren sponsor: DTZ; and HOLE Bob Gibson autographing sponsors: Ameren, Argent Capital Kyle Lucks’ painting Crown Trophy for the crystal Management, Don Carlson, Cooperative Home Care, Larry golf awards (in loving memory and Sonya Davis, The Delmar Gardens Family, Express Scripts, of Max April, Shale M. Rifkin, Fastsigns of Bridgeton, Keith & Cindi Guller, Henges Interiors, and Ben April); Fastsigns of Horner Shifrin, Husch Blackwell, Kodner Gallery, Missouri Bridgeton (Barry Roufa) for Cures Education Foundation, Petro-Mart/Western Oil, Inc., the wonderful signage and pin Reitz & Jens, Inc., Shillington Box Company, Serta Mattress flags; Zach Dalin and Bryan Company. Our EXCLUSIVE RADIO PARTNER KMOX Schraier for their professional allowed us to market and promote the golf tournament, which photography services; Pretzel also helped raise awareness of the APDA and Parkinson disease. Boy’s and the St. Louis Cardinals for hot pretzels and beverages on CHARITABLE CONTRIBUTIONS arrived in generous the course; and Tom Ackerman, proportions from Jeff Fox, Larry and Gail Glenn, Suzanne Dan McLaughlin & John Hurster Wood, Tom and Amy Mackowiak, George and Nancy Mozeliak for media/marketing Marble, Morgan Stanley, PJG and Associates, Marty Satz, Al and leading up to the sold-out event. Alice Schott, Bob and Jennifer Schuller, Jack Strosnider, Marilyn Doug Schroeder

6 LiNK AUGUST 2015 VOLUME 29, ISSUE 3 Doug Schroeder, a Boeing Bob Warren, Bill Warren, Grant Washburn, Jim Whitledge, Jeff engineer diagnosed with early Wist and Marty Zygmund. onset Parkinson’s, spoke to We can’t forget to thank our 136 golfers who had a great day on the crowd about optimism the greens, bidding on many wonderful auction items, enjoying and PD. Dr. Perlmutter, the Question-and-Answer session with John Mozeliak and Tom the Medical Director of the Ackerman, and feasting on the dinner served by wait staff at Greater St. Louis APDA, Head Algonquin. Auctioneer-extraordinaire Tom Ackerman secured of the Movement Disorders bids for our one-of-a-kind live auction items including a unique, Section and a distinguished signed painting of St. Louis Cardinals Hall of Famer Bob Gibson Movement Disorder Specialist at by Kyle D. Lucks; the opportunity to throw out the first pitch, dine Washington University, shared in the Cardinal Club, visit the field and watch a St. Louis Cardinals with our golfers and dinner game with three friends in a field box; a party suite for 30 people guests the hopefulness he feels at a Cardinals game; a visit to the GM’s private box with dinner as a scientist working to find John Mozeliak and drinks, plus four infield box seats; an in-studio visit to Sports causes and a cure for this disease. Open Line and dinner at Mike Shannon’s Steaks and Seafood; He also expressed four tickets, on-the-field batting practice access and a visit to his gratitude for the broadcast booth; an opportunity to hit the links in style with gift cards to Mister Guy Clothiers and Golf Discount, plus a foursome at Algonquin Golf Club; Navy SEAL training for a day; and a BMW Kyle Lucks Carbon Racer Bike. It does indeed “take a village” – special recognition to our hard-working VOLUNTEERS under the direction of Golf Committee Mike Johnson, Steve Ackerman, Ryan Martin Co-Chairs, Steve Deines, Bud Raskestraw, John the generosity and Matt & Annemarie Mozeliak, Joel Perlmutter, Mwiza Ushe support provided Schumacher, and committee members Matt LaMartina, Mark as a result of this Lawson, Alan Lemley, Barry Roufa, Dave Sadler, and Grant fundraising event. As a result of Doug’s inspiring story and Dr. Washburn; as well as John Basilico, Kay and Rebecca Bruchhauser, Perlmutter’s speech, almost $26,000 was collected during the Ann Cook, Andy Dalin, Elaine Dreher, Karl Guyer, Barb Koch, FUND-A-NEED portion of the evening from the charitable Benjy and Joyce Levin, Craig Miller, Nancy Schillinger, Marilyn individuals/couples present: Todd Anstine, Matt Bayer, Warren and Sherre Wiedemann. A big thank you to our tireless Kena Blanton, Dave Butler, Rich Chrismer, Jerry Clerc, Ed volunteers from Scottrade who spent the day with us as part of Dickinson, Laura Dobsch-Mayer, Anne Droese, Chris Edwards, their community day of service: Andrew Barco, Matt Black, Jim Gidcumb, Ed Goedeker, Patrick Hoene, John Hogan, Gil Mary Ferry, KC Grun, Scott Deters, Andrea Hussey, Sarah Hoskins, Kevin Kozminske, Matt LaMartina, Alex Lee, Alan Krantz, Krishna Rao, Matt Spector and Mary Lou Sullivan. Lemley, Mark McPeek, Jason Morris, Scott Mosby, Dean Please consider volunteering to join our golf committee, or if Mueller, Bob O’Connell, Brian Potter, Tim Potter, Bill Reller, you wish to receive an invitation for next year’s golf tournament Barry Roufa, Dave Sadler, Marty Satz, Rich Schindehette, Kurt to be held on Monday, May 16, 2016, at Algonquin Golf Club, Schoen, Kathy Schroeder, Matt Schumacher, Rich Schumacher, let us know by phone: 314-362-3299 or e-mail: malmengor@ Ross Schumaker, Rich Smith, Sandy Steppig, Karen Vangyia, apdaparkinson.org. ■

APDA–GREATER ST. LOUIS CHAPTER AUGUST 2015 LiNK 7 TRIBUTES & DONATIONS 04/01/15-06/30/2015 Tributes are a thoughtful way of expressing sympathy, giving thanks, celebrating special occasions such as birthdays, anniversaries, holidays; or honoring the memory of a loved one or friend while expressing your commitment to the Greater St. Louis Chapter of the American Parkinson Disease Association. An acknowledgement including your name (but not the amount) will be sent to the person honored or to a relative in case of memorial, and the donor will receive a prompt thank you card/letter which can be used when filing your tax return. HONORING Elaine Varnadore on her Nancy Johann Shirley Rull Janet Dobbs birthday, in memory of her Stacey Largen Peter & Cindy Sevin Donald & Celeste Dwyer Stephanie Alport on a speedy parents Dorothy Mueller Martin & Grace Schneider Bob & Gail Einspanier recovery Sharon K. Holt Ted, Jane & John Nadler Robert & Linda Speas Gerald Erker & MP Gallagher Pam & Jerry Brown Beverly Lee Dale & Norma Plank Greg & Cindy Watters Billie Farrell John Basilico on his birthday Janie Walter on her birthday St. Peters Exercise Class Glen & Esther Watts Beverly Friedman and with appreciation Kay Bruchhauser Ann Schulte Andy Westhoff Jim & Eileen Fritsch Debbie & Karl Guyer Bob, Bev & Dennis Short Brett & Laurie Whitnel Lou & Carol Garr Anita & Ray Zavack on their Emmett & Sharon Swyres Bennett & Evanell Williams Russ & Ann George Mr. & Mrs. Harvey Brown on 50th anniversary their 65th anniversary Carolyn & Timothy Urban Barbara Correll The Gipsons Cheri & Steve Lasky Debra Gordon Rita Eiseman Loretta & John Urban Patti Fries-Koch & Dolores Fries IN MEMORY OF Janet & David Watkins Karen & Jim Halla Mr. & Mrs. Robert Brown on Francis Craig Bill & Linda Hambrick Ada Billings their special anniversary Joseph Ancona Robert & Lynda Wiens Mary Rose & George Heil Mr. & Mrs. Jay Bender Pam & Jerry Brown Tammy Crooks Thomas & Barbara Hilton Jim & Marsha Guyer William Cribbin Brian & Carrie Winslow John Humphrey, III Mr. Lee Chazen Don & Christy Kimmel Jack and Peggy Cribbin Adrian & Gaye Ann Hutton Pam Sherman Brown Edna Bahr Liz & Bill Meeks David Deem Harry & Laura Ingram Mr. & Mrs. Art Adams Robert & Deborah Richter James Crates Janet Dobbs Susan Jaggie W. W. Allen Kathleen Toal Lisa Knoll Frank Deranja Janice Kilgen Christopher Bossman Bernard & Marjorie Vanmourik Dick & Sue George Bill & Mary Kramper Datu Health Robert & Lynda Wiens Maria Cendekawitsch Rochelle Weiss & Steve Lobe Joan & Mike Deelo Joanne Corcoran Betty Kraner Dominic Birrittier Marilyn & Arnold Goldman on Mary Ann Druhe Janet Deranja Dennis & Susan Kruep Brad Burch their 40th anniversary John & Deborah Einspanier Fatima Kucic Alex Kusnierkiewicz Mr. & Mrs. Thomas Canavan Steve & Marilyn Dardick Peter & Judith Gerontes Ana Pluchinski Brian & Brooke Lunt Mr. & Mrs. Frank Gallagher David & Sabina Garfinkel Dan & Bev Goodwin Vinka Rukcic Jessica & Scott Mangus Mr. & Mrs. Glenn Grieshaber Herbert & Nancy Seidel Lillian Griffey Juliana Stefulik Elizabeth Mast Jannette & Donald Helfrich James Edward Boatright Angelika Ziglioli Susan McCoole Ralph P. Goldsticker, Jr., on Harold Hindman Kirsten Bergkoetter Ralph Eaves Kelly McKittrick receiving the French Legion of Laura Meyer Honor Medal John & Clara Hudson Joshua A. Boatright Clyde & Carol Hayes Mary-Alice Kissel Christ Community Church, Alaska Kinch & Thelma Joyce Jones Garry & Genevieve Moeller Larry & Andi Goldsticker Anne & Brian Murray Debbie Guyer Mary Knickmeyer Emily & Michael Dreher James & Sharon Patrick Richard Koch L.C./Feder Truck Service Jeanne Shaw Joseph & Peg Niemann Jean Grifford for her work in Dolores Palmer Bob & Sandee Nelson Janice A. Noack Bill Erdman the Parkinson community in Michael & Christine Poldan Paul & June Pilch Burton & Carolyn Noll Christy Hayes Ste. Genevieve Alice Provaznik Mike Smithson James & Connie O’Connell Jack Strosnider, Sr. Angela Raffin Denise Thill Phil Erzinger Kerry & Joseph Pantelis Jim Heddinghaus Leoba Schallom Jim & Kay Tipton Jeanetta Brinkman-St. John’s Mr. & Mrs. Jeffrey Pawlik Katie & Matt Pelikan Mr. & Mrs. Arthur Ray Heath Thomas & Alison Talbot Barry Boehm Cancer Relayers Marilyn Watson Deborah & Curtiss Crosser Jim & Georgia Peterson Carole Kalish on her special Don R. Carlson Dan & Nancy Whithaus & Family Mike & Chris Pitzer birthday John Henry Bouck Stanley Fagin Jon Phillips Carol & Bruce Rosen Joan Berg Tricia & Todd Hackett Sharna Kohner Ruth Powell Ralph & Norma Haag Mary McShane Reckamp Mark Kodner on his birthday James Brackett, Jr. Rev. Ronald Feuerhahn Justin Jones Deborah Reimer Penny Kodner Jill Ferrone Bob & Melissa Mullgardt Laurel & Bob Jones Robert & Lynda Wiens Brooke & Jim Rintoul Jim & Joan O’Driscoll on their Kathy Harlan Nathan & Kate Jones Mr. & Mrs. Ryan Rothkopf 50th anniversary Thomas & Carol Rose Guy Frumson Sima & Phil Needleman Dave Schwent Dale & Norma Plank Melissa Rulapaugh Sally Reinholdt Julie & Ty Roth John & Sigrid Sheehan Joe Shirvinski Charles Shore Mark & Marsha Schankman Robert Geile Chad & Beth Silker William Stets Cassville School District R-IV Bill & Marge Stuesse Sue & Jim Adams Jim & Janet Singer Kent & Diane Tallyn Andrea Wandling Sid Silverman on his 85th Tom & Paula Andrew Steve & Amie Smith Dolly Tomich birthday Clarence “Zack” Carter Jim & Kathleen Baalmann Mike & Kim Sullivan Debbie & Tab Cohen Richard Bergmeier Dale & Norma Plank Angela & Brian Bachelier Carol W. Szweda Jane & Bob Adelmann Henry & Ann Bauer Nicole Timlin & KECC Family Our 49th anniversary Shirley Cohen Earl & Catherine Adkison Tracy & Cathy Beckette J. Kent Underwood Bill & Susan Stafford Joanie & Mark Goldstein Joyce Birke Russell & Mary Bellerson Gary & Donna Vandiver William Cornman Jack Strosnider on his 90th Shirley Birke Diane & Joe Bottani Lea Virtel birthday Gerald & Phyllis Carter Michael & Beverly Compton Andrea & David Braun Clarence & Mary Nina Wagner Mary Ann Hanneken Harold & Sharon Demien Thomas Franzen Debbie Brooker Mary & Raymond Watts Barbara Lindhorst Diane & Don Donlon Ronald & Elaine Graiff Helmut Brugman Peter & Teresa Wetzel Becki Hartke Amy Clements Terri & Bill Taylor on their Theodore & Donnis Eberley Carl & Rose Will Leland & Janis Johns Rivalie Cohn anniversary Janet Gaines Ray & Mary Winkeler Marty Kalaher Renie & Bill Compton Roz Gad Roberta Gittemeier Loretta & Charles Wittenberg Susan & Gary Gruper Edward & Pamela LaBelle Jim & Diane Daly Mary & Terry Wittenberg Robin & Linda Meade Richard & Carolyn Dames Danna Hardt Tony Gerner William & Lisa Montgomery Katherine Deisanti Larry & Robin Hinnah Patricia Anghilante Dan & Becky Hoskins Robert Ostendorf Lauren DeVous 8 LiNK AUGUST 2015 VOLUME 29, ISSUE 3 Helen Goldsticker Iris Levitt Tom & Bev Nance Raymond Siebert Rich Distler Andi & Larry Goldsticker Debbie & Karl Guyer The Niemeyers Fred Jones Ronald Dunham Brandi Oller & Pilar Gallardo- Ismael Herrera Glenn Linke John Skurat Col. Walter & Marjorie Evans Oller Anthony & Kathleen Bommarito Mike & Bernice Resnick Frank & Marilyn Schoeck Norman V. Giovannini Jerry Volak Gary Jones Marigrace Hoffman Vance Lischer David & Karen Warren Paul L. Slepski George Kantis Gloria Hurley The Lapp Family Ted & Audrey Sanders Edith Kapfensteiner Rae Ann Powers Joan & Thomas Thompson Robert Hofmann Nick J. Ludwig Mr. & Mrs. Walter A. Kempter Michael & Nancy Klein Sandra & Jerry Barklage Diane Ludwig Pam & Ed Ponder Charles Standley David Lansdown Diane & Dick Stonecipher Hadassah & Sanford Lebman Richard & Lisa Beckmann Elizabeth Mack Catherine M. Staten James & Mary Jane Lister Alan & Connie Button Donald Symank Beverly & Jerry Silverman Al Rakers William & Rozanne Mannen Defiance & Wright City Quarries Bob & Pat Dillman Tom A. Manglis Lyn & Bill Heaton Naomichi & Yohko Masaki Jerry Lee & Billie Jean Diekamp Frank and Vanda Dillman Anthony & Susan Cassimatis Glenn & Carol McDevitt Herb & Lisa Homeyer Mary Ann Rielly Morris & Joyce Huelskoetter Richard Saffley Russell & Robin Illy Brigida Manzo Thomas J Rielly William & Jan Lauber Lucille Kasper Tom Gebken Kathleen Safford Thomas Rosenburg Charles “Bud” Teeter Glen & Kari Keeven Greg & Francesca Grass Charles & Leona Sarkisian Neal & Lynn Grannemann Allstates WorldCargo Family Joanne Keeven Gene & Cindy Morgenthaler David Wiese Elfrieda Roth-Roffy Ron & Lisa Ameln Candace & Randy Politte Amy & Joe Wolff K.L. & Mary Young Arlene Rothermich Paul Roth-Roffy Don Hagemeier & Clara Veal Richard & Margaret Zimmerman John Mayes Tim & Barb Schwane Charles Ruscha Kenneth Mueller Elizabeth Bail GENERAL GIFTS David Probstfield Gwynne Seigel Joan Hollander John & Colleen Hoercher Leslie Wilson $100 – $499 Rita Eiseman Judy Kraske Goldie Satz Hattie Thal Bill & Nancy Anderson Mr. & Mrs. Eugene Munier Bill & Terri Taylor Robert Babione Marvin Holtzman Renee & Gary Harrison Fran & Sid Axelbaum Brian Randall Leo Schade Ed & Rita Balk Michael Tomko Roz Gad Kent Schroeder Kathleen Stones Herb & Marge Bilinsky Dave & Lisa Tiedemann Stuart & Kathi Rosenberg Bill Billings Richard Karney Sharon Wein George Trakas, Jr. Jean Cody Carol Faintich Ed McPherson Jackie Schmidt Ed & Robin Biermann Col. & Mrs. Robert Coulter Marsha & Steve Funk CMW Equipment Larry Schmidt Tim & Jeannie Hallemann David & Patsy Dalton Minnie Kaplan Robert Miller Paul Schmittling Greg & Kerri Klein EMD Millipore Sandra Turk & Family Barbara Miller Mary Corvey Kathy Mester Bill & Erika Gerth Robert Klefisch Evelyn Mitchell Mike & Gail Glover David & Kathleen Sandknop Mr. & Mrs. Michael J. Honigfort Richard Klefisch Betty Tate Kari Hercules Bruce & Caryn Sandweiss Ladue Chapel Women’s Association Allen Kolons Ramon Morganstern Susan & John Jasiewicz Gordon E. Wall Christel Maassen Sharna Kohner Herb & Nancy Seidel Sandy & Chris Knee Marilyn Wall Michael & Pam Reitmeyer John & Susan Rothenheber Stan, Sally & Marci Zimmerman Ruth Warhoover Joseph Koreen Ray Schmittling & Families Cynthia E. Smalley Kathi, Stuart, Jamie, Laura & Fred Oertli, Jr. Judith Shoemaker Charles & Mary DeLong Marilyn F. Wall Corey Rosenberg Guarantee Electrical Charles & Debra Thacker Vernon Wein Gene & Patricia Wittman John L. Krieger Kris Westhoff Sandra Aye Dr. Sam Pagano GENERAL GIFTS The Krieger Family Stan & Angie Klearman Selma Schumitsky Donald & Patricia Berendt Carol Betlejewski $500 – $999 Sharon Lambing Roberta Hayman Don Pallo George & Janice Brennan James Holsinger Larry & Kay Beckett Roberta Hayman Elizabeth Schweizer Mr. & Mrs. Ernesto Cabrera Marjorie A. Prunty Rita Boero Jeffrey & Judy Pass Gail & Larry Glenn Russell & Bonnie Farrah Mary Stein James “Red” Boyle Cheryl Perl Joyce A. Foster Tom & Mary Buhrkuhl Jannette Schweppe Angelo Panourgias Jackie & Dennis Hinderliter GENERAL GIFTS Bonnie Cochrane Jerome & Cynthia Schonhoff Jim & Marjorie Leuthauser $1,000 – $4,999 Darlene Cole Louis & Catherine Anastasios Ely Shrauner Raymond & Joann Orr Thomas H. Benton, Jr. Concordia Lutheran Church Renée Becker Bill & Roberta Abraham Peggy Piekarski Rotonda Foundation Carol Dierker Ron & Elaine Been Katharine Abraham Dale & Norma Plank Rich & Cheryl Schumacher Fraternal Order of Eagles Aux Stephan & Melissa Bruce Sarah Abraham Dan & Lori Schmidt Southern Illinois Support Group #3781 Jenell Brucker George & Abir Bazlamit Jim & Kathy Schweigert Ann Gratza & Ervin J. Vlasak Ken & Terri Goodwin GENERAL GIFTS Claude Bernard Patrick Scott Bill & Beverly Johnson Kenneth & Sharon Goodwin Elizabeth & William Caspari Kermit Shelley & Immacolata $5,000 – $9,999 Karen Kilcullen & Dan Scheu Gus & Pat Hawkins James & Carlee Caspari Bergman-Shelley Lucy Bauman Jo-Di Lambing Rich & Phyllis Hawkins Matthew Caspari W.B & Norma Shelley Marilyn Decker Roger & Suzanne Louderman The Irwin Family Deb & Jeff Clinebell Dave & Jean Stegmann George Von Hoffmann Foundation Jay & Gina Maben Brian & Dede Kelley Betty & Jim Dowd Bob & Rhonda Stuckey Gene & Jackie Martin Terry & Kathy Livaditis GENERAL GIFTS Matthew & Amy Dowd Dorothy Wennemann James & Barbara Massie Jason Martin Pete & Sandy Martin Michael & Jessica Friedlander Tom & Ruth Wiley $10,000 AND OVER Wanda & Herman Merkel Pat Gibbons Guarantee Electrical Missouri State Auxiliary Dr. Richard Schainker Norma Ziegenhorn South Side Small Group Mr. Edward Greenberg Missouri State Auxiliary Officers Gary & Carol Hamilton Don Ziegenhorn THRIVENT CHOICE Norma Jean Parker Jane & Sandy Thal DOLLARS Stergios & Vedra Tsoulis Annaliesa & Wayne Hanebrink Theodore Zinselmeier Russ & Emmy Rapp Rilla Fisher-Pugh & Dennis Pugh Bob & Virginia Yale Margaret & Martin Israel Jack Strosnider, Sr. Helen M. Ruwwe & Family Wilhelm Neuefeind Kevin Hunter Dema Schatz Jim Peterson Ruby E. Quarterman GENERAL GIFTS Carolyn Long Hester Tayloe Jean Peterson John & Fay Scandrett UP TO $99 David Long Billie & Jack Tyler Franklin Pinkston Barbara Shrauner Albert Barnett Louise Mrstik Doug & Diane Vaughn Gail Gargac James Shrauner Dr. & Mrs. J.E. Creed Roger Peters Patricia Webb Denise & Andrew Jackson Jay & Cynthia Shrauner Dick & Nancy Chin Flora Sanders Penelope Shrauner APDA–GREATER ST. LOUIS CHAPTER AUGUST 2015 LiNK 9 Drug Expense Relief Kathy McVoy, Caregiver hew! Into the coverage gap I went. How much for So, finally I spoke with Debbie Guyer, Executive Director of the entacapone (generic for comtan)? Did you say, $888, Greater St. Louis Chapter. She suggested contacting Stacey Wand the next time $768? REALLY! Down the wicked Barton, a Social Worker with the Movement Disorder Center. medicine slide we went into the coverage gap. My husband, Ken, Stacey was the caring, competent companion who walked me and I have had to contend with the mammoth costs of his PD through the website Medicare.gov. You can go to the site and drugs for a couple of years. Ken, who has had Parkinson’s for 9 list all the drugs you need and compare which drug plan is most years now, takes entacapone 7 times a day. He takes other drugs cost effective. I had visited the site before, but I didn’t trust my as well, but this one is the greediest emptier of pockets of them all. assessment. I grew up dialing a phone and talking with people. How do you ask a computer, “Are you sure?” So, if you are like me Since we fall into a middle class coverage gap, it has been difficult and would like a guide through the process, ask a family member to find assistance in reducing the cost of medications. We knocked or friend, someone who is comfortable with the tech territory. on several doors to figure out how to lessen the expense. If you do not have insurance or your income is less than $30,000, you can Just when you thought you could relax with this fairly simple qualify for help with the Prescription Partnership Association, solution, “heads up!” Stacey reminded me to check my drug plan www.pparx.org. I called the manufacturer of the drug, Novartis, each year. Plans change year to year and may not always cover the but they don’t offer assistance. A very helpful fellow caregiver same drugs or cover them at the same cost. sent me to check out the Canadian mail order pharmacy route, So, I say, “Yay for a community of caring companions!” There which can be a good choice for some as they do offer reduced are rocks along the path, and there are helpers to manage the costs. Unfortunately, they wouldn’t make a big difference for us stumbling. Thank you! ■ because of the large amount of the drug Ken takes. You can go to affordabledrugs.com to learn more about this program.

A Slam Dunk! The Cassville R-IV School District high school girls’ basketball team raised funds and awareness about Parkinson disease on February 9, 2015, at the annual home game against Monett High School. This year they raised $500 in honor of Coach Chris Shore’s father, Charles, who battles Parkinson disease every day. This represents the second contribution made as a result of this game; the first, which raised $448, occurred in 2013. We hope the community continues this tradition when Monett visits Cassville every other year. Got Pizza? While raising awareness about Parkinson disease every Thursday during this past April, members of the Greater St. Louis APDA could dine in or carry out from all St. Louis locations of California Pizza Kitchen (CPK). CPK contributed a percentage back as a fundraiser for the Greater St. Louis APDA which resulted in receipt of $548.55 for our cause! Thank you for your support again this year. Bike-Swim-Run Triathlon The Chawla family raised $1,300 this past April and May by participating in a bike/swim/run triathlon among their family and friends to honor the memory of loved one, Mr. Tilak Chawla. They exceeded their goal by getting multi-generations of the family members involved in this worthy cause. What a lovely tribute to a gentleman who holds such special meaning for so many. One-of-a Kind Bob Gibson Hall of Famer Painting Prints Available This unique painting of St. Louis Cardinals Hall of Famer Bob Gibson was painted by local artist Kyle D. Lucks and auctioned at the Jack Buck Memorial Golf Classic held in May, 2015. Kyle has offered to sell prints of the painting and donate all of the proceeds to the APDA Greater St. Louis Chapter. To purchase your print, visit Kyle’s website at http://www.kylelucks.com/product/bob-gibson/.

10 LiNK AUGUST 2015 VOLUME 29, ISSUE 3 The Worst Advice for Family Caregivers: Parent Your Aging Parents Howard Gleckman, author of the book, Caring for Our Aging Parents.

n the always-complex, often-painful cognitively able and our choice does not to college, are resentful, embarrassed, and world of family caregiving, there is no harm others. maybe even angry. Iworse advice than this: When your A wise man once said it like this: “When Needless to say, this is not a great parents need help, you must reverse roles I was 22, I did some things my parents environment in which to make decisions. and become their parents. thought were remarkably stupid. But I was What’s the alternative? As much as Here is the reality: If you are the adult an adult and they were my choices. Now, possible, share decision-making. As the child of an aging parent, you will always my parents may be doing some things that adult child, never start any sentence be their child, and they will always be your I think are remarkably stupid. But they with the words: “Mom, you’ve got to.…” parent. They may need your help with the have the same right to make mistakes as Instead, try, “What do you think we most intimate personal care. But you will I did.” should do?” Help them choose. But work never become their parent. Put yourself in the position of an aging together as much as you can. I saw this all the time when I was parent. As you become physically frail and Of course, if a parent or other relative is researching my book, Caring for Our cognitively limited, you lose control of your emotionally or cognitively incapable of Parents. I had the opportunity to spend as life. All those day-to-day decisions that making decisions, you may have to step in. long as two years with people who needed healthy people take for granted—when But that is much less common than many assistance and their family caregivers. I saw to go to the movies, when to eat, when to suppose. heartwarming successes and sad failures. walk across the room and even when to go Often the difference was the ability of to the bathroom—are increasingly shared To his credit, Milloy finally got it, despite adult children to understand their roles. with others. It can be embarrassing and starting out with that awful “reverse roles” demeaning. advice. Courtland Milloy, in his column for the Washington Postt offered this guidance: And it is why a big part of frail old age Like the proverbial bad penny, this “Some elder-care experts say that when is about maintaining independence and parenting your parents business keeps aging parents stop acting in their best respect. coming back. Years ago, when I was writing interest, the grown children must reverse for Business Week, an editor suggested a Now comes your child. He may be 50 roles and simply make them do the right consumer caregiving column. It would be years old, but he is still your child. And thing.” As he learned, this advice is so called, you guessed it…“Parenting Your he is saying: “Mom, you’ve got to go to wrong on so many levels. Parents.” I told her I’d love to write the the doctor,” “You’ve got to stop driving,” column but the name had to go. That was To start, what is the “right thing”? Who “You’ve got to move to assisted living.” He the last I heard about the idea. ■ are you to decide what is right? As a matter may have just parachuted into town for a of law and, I believe, ethics and morality, few days. He seems rushed and impatient. This article originally appeared in Forbes Magazine on September 4, 2013 each of us gets to decide the “right And you, who on some level still view your thing” for our own life, as long as we are son as the 18-year-old who left home to go

APDA–GREATER ST. LOUIS CHAPTER AUGUST 2015 LiNK 11 SEWING THE SEEDS OF OPTIMISM 20th Annual APDA Fashion Show, Luncheon and Auction

e’re excited to bring you another delightful afternoon of fashion, delicious food and gifts from a silent auction filled with tastes of our town restaurant gift cards/ Wcertificates and one-of-a-kind items. Proceeds from this event will be used to support APDA’s dual mission – to ease the burden and find the cure by expanding patient programs and services to improve quality of life for individuals and family members and funding promising Parkinson research, which seeks to further identify causes and ultimately find a cure for Parkinson disease. Invite your family, friends and neighbors! We are thrilled to have Kelly Jackson, Anchor KSDK-TV and KTRS-Radio, and creator of Aarff.com and Jennifer Blome, Director of Humane Education, APD Missouri, and former Anchor of KSDK-TV morning newscast, Today in St. Louis, as our Masters of Ceremonies and to present fall fashions from some of St. Louis’s finest boutiques including Mister Guy Clothiers (Men’s and Women’s fashions), Distinctions (formalwear), Vie, and Paperdolls. Doors open for the silent auction and wine reception at 11:00 a.m., the luncheon will begin at 11:45 a.m., and the fashion show starts at 1:00 p.m. on October 12, 2015, at the Sheraton Westport Chalet. The cost will be $70 per guest. How can you help? Please consider becoming a sponsor. As a sponsor, you or your business will receive prominent placement in our program and on signage at the event, plus special seating at the fashion show. In addition, your name will be featured in the November LiNK newsletter distributed to over 9,500 homes and businesses across Missouri and Illinois. Sponsorships begin at $500 with many levels to appeal to any supporter. For more information about the fashion show and sponsorships, visit our website at www.stlapda.org or call the APDA office at 314-362-3299. If you haven’t received an invitation in the past and would like to receive one this year, please send an email to [email protected] or give us a call. We’ll gladly include you on our guest list! We hope you, your family and friends will join us to make this year’s event another “fashionable” success!

Managing Constipation in Parkinson Disease continued from page 2

Fiber must have fluids Next, consider the need of fluid. The fiber kinds of kefir, visit the following websites: particles you eat require water in order to swell up and keep the http://www.culturesforhealth.com/how-to-activate-dehydrated- stool soft. Aim for at least six, 8 ounce servings of fluids each day, milk-kefir-grains-video about half of which, ideally, would be plain water. Coffee and tea count, but the caffeine also causes some water loss. When taking http://www.wikihowcom/Make-Kefir medications, take them with an 8 ounce glass of water, rather http://www.waterkefir.org than just the sip needed to swallow a pill. Other sources of water include soups, juices, smoothies, and a bowl of chopped mixed A recent study showed that people with PD have an imbalance of fruit (fruits and vegetables are naturally high in water content). microorganisms in the gut. These friendly organisms can also be depleted by use of antibiotics or a diet deficient in the prebiotic Probiotics for gut health Last, but just as important, consider substances they rely on for food. Prebiotics are certain types of the use of probiotics to maintain colon health. Although you fiber-fructo-oligosaccharides and inulins - which are not digested can purchase gelcaps containing various probiotics, a much less by humans but pass into the colon and are used as food by these expensive way is to eat fermented foods frequently- sauerkraut friendly organisms. Eating a variety of high-fiber foods will ensure and kimchee are examples of fermented foods. Alternatively, that your colon receives prebiotics for the probiotics to consume. ■ make your own kefir. Kefir grains are small particles containing a wide variety of both bacteria and yeasts. When placed in milk, For more information on this and many topics, visit www. coconut milk, or sweetened water, the kefir grains consume the nutritionucanlivewith.com. sugars, producing a fluid rich in microorganisms that are needed This article appeared in the NWPF publication on May 8, 2015, and is reprinted with by the colon. For information and directions on making different permission of NWPF and the author.

12 LiNK AUGUST 2015 VOLUME 29, ISSUE 3 Sponsored by the American Parkinson Disease Association, Greater St. Louis Chapter Missouri Support Group Calendar Our support groups meet once a month or as noted. Support group day and time may change periodically. For current updates on support groups and exercise classes, check our website, www.stlapda.org, or call the APDA Information & Referral Center or the facilitator. Information that has changed since the last LiNK appears in bold.

CITY COUNTY MEETING SITE DAY OF MEETING TIME LEADER(S) PHONE Meramec Bluffs Care Center Ballwin St. Louis 4th Tuesday 2:00 PM Gayle Truesdell 636.923.2364 40 Meramec Trails Dr., Activities Rm.

Cape Cape Girardeau Public Library Cape Girardeau 3rd Monday 6:00 PM Desma Reno, RN, MSN 573.651.2939 Girardeau 711 N Clark Street, Oscar Hirsch Room

APDA Community Resource Center Chesterfield St. Louis 1st Tuesday 10:30 AM Mary Buck 636.532.6504 1415 Elbridge Payne, Suite 150

For Caregivers Only Chesterfield St. Louis APDA Community Resource Center 2nd Monday 10:30 AM Dee Jay Hubbard, PhD 314.362.3299 1415 Elbridge Payne, Suite 150

Lenoir Community Center 573.356.6036 Columbia Boone 1st Thursday 4:00 PM Patsy & David Dalton 1 Hourigan Drive 573.434.4569

Pre/Post-DBS Group Missouri Baptist Medical Center Creve Coeur St. Louis 3rd Tuesday 6:30 PM Joe Vernon 314.614.0182 3015 N. Ballas, Main Parking Garage 4th fl. CLI Rm. 419

Young Onset Living and Working with PD Missouri Baptist Medical Center Creve Coeur St. Louis 3rd Tuesday 6:30 PM Doug Schroeder 314.306.4516 3015 N. Ballas, Main Parking Garage 4th fl., CLI Rm. 419

Festus/ Disability Resource Association Penny Roth 636.931.7696 Jefferson 3rd Tuesday 1:00 PM Crystal City 130 Brandon Wallace Way Sara Dee x129

Garden Villas North Florissant St. Louis 4th Thursday 11:00 AM Nancy Robb 314.869.5296 4505 Parker Rd.

Capital Regional Medical Center Jennifer Urich, PT 573.632.5440 Jefferson City Cole 3rd Wednesday 3:00 PM SW Campus, Cafeteria David Urich 573.796.2395

Byers United Methodist Church Joplin Jasper Every Monday 3:00 PM Nancy Dunaway 417.623.5560 1730 S. Byers, Gymnasium

VA Medical Center Jesus Torres 816.861.4700 Kansas City Jackson 4801 Linwood Blvd. 3rd Tuesday 11:00 AM Nikki C. Caraveo, RN, x56765 Hall of Heroes Room BSN, CNRN

Kirkwood United Methodist Church Kirkwood St. Louis 4th Tuesday 7:15 PM Terri Hosto, MSW, LCSW 314.286.2418 201 W. Adams, Room 201

The Gatesworth Ladue St. Louis 2nd Wednesday 1:00 PM Maureen Neusel, BSW 314.372.2369 1 McKnight Place

Lake Ozark Christian Church 573.356.6036 Lake Ozark Camden 3rd Thursday Noon Patsy & David Dalton 1560 Bagnell Dam Blvd. 573.434.4569

Poplar Bluff Regional Medical Center Charles Hibler 573.785.6222 Poplar Bluff Butler 3100 Oak Grove Rd. 2nd Monday 6:00 PM register with Beryl 855.444.7276 Ground Floor Education Room 3 or Dana 573.776.9355

Phelps County Regional Medical Center, Rolla Phelps 4th Thursday 2:30 PM Sarah Robinson 573.201.7300 Pulaski Room, 1000 W. 10th St.

Garden Villas South South St. Louis St. Louis 2nd Wednesday 10:00 AM Jack Strosnider 314.846.5919 13457 Tesson Ferry Rd.

Mercy Hospital Springfield Greene 2nd Thursday 2:00 PM Valerie Givens, RN 417.820.3157 1235 E. Cherokee APDA–GREATER ST. LOUIS CHAPTER continued on next page AUGUST 2015 LiNK 13 continued from previous page Missouri Support Group Calendar

CITY COUNTY MEETING SITE DAY OF MEETING TIME LEADER(S) PHONE Spencer Road Library Sherrie Rieves St. Peters St. Charles 1st Tuesday 1:00 PM 636.926.3722 427 Spencer Rd., Room 259 Ann Ritter, RN Ste. Ste. Genevieve County Mem. Hospital Ste. Genevieve 2nd Wednesday 10:00 AM Jean Griffard, RN 573.543.2162 Genevieve Education Conf. Room, Hwy. 61 & 32

Royal Inn Novy & Mary Ellen Foland 660.357.2283 Trenton Grundy 1st Thursday 10:00 AM 1410 E. 9th Street Gloria Koon 660.485.6558

Washington Public Library Washington Franklin 2nd Monday 6:30 PM Carol Weber 314.713.4820 410 Lafayette Avenue Bethesda Institute Webster Groves St. Louis Last Friday 10:30 AM Laurel Willis, BSW 314.373.7036 8175 Big Bend Blvd., Suite 210 Laclede Groves Webster Groves St. Louis 3rd Wednesday 3:00 PM Dina Spies 314.446.2594 723 S. Laclede Station Rd. Illinois Support Group Calendar Our support groups meet once a month or as noted. Support group day and time may change periodically. For current updates on support groups and exercise classes, check our website, www.stlapda.org, or call the APDA Information & Referral Center or the facilitator. Information that has changed since the last LiNK appears in bold.

CITY COUNTY MEETING SITE DAY OF MEETING TIME LEADER(S) PHONE Senior Services Plus 618.465.3298 Alton Madison 2nd Tuesday 9:30 AM Kim Campbell 2603 N. Rodgers Ave. x146 Southwestern Illinois College (PSOP) 618.234.4410 Belleville St. Clair 2nd Monday 1:30 PM Jodi Gardner 201 N. Church St., Rm 106 x7031 Southern IL Healthcare Headquarters Carbondale Jackson 1st Wednesday 1:00 PM Bill Hamilton, M.D. 618.549.7507 University Mall Dennis Krupp 618.545.6597 Heritage Woods of Centralia Centralia Washington 2nd Wednesday 2:00 PM Betty Evans 618.533.0224 2049 E. McCord St. Helena Quaid 618.493.6064 Savoy United Methodist Church Charles Rohn 217.549.6167 Champaign Champaign Every Monday 10:00 AM 3002 W. Old Church Road Chuck Arbuckle 217.586.3100 Westminster Presbyterian Church Decatur Macon 3rd Thursday 1:30 PM John Kileen 217.620.8702 1360 West Main Street The Senior Community Center Nancy Goodson 618.670.7707 Glen Carbon Madison 3rd Wednesday 10:30 AM 157 N. Main St. Rich Rogier 618.288.3297 Bond County Sr. Center Greenville Bond 4th Monday 10:30 AM Anna Oestreich 618.664.1465 1001 E. Harris Ave. Bond County Sr. Center Greenville Bond Baumberger Comm. Rm. 4th Friday 1:00 PM Anna Oestreich 618.664.1465 CAREGIVERS ONLY Passavant Area Hospital 1st Wednesday Jacksonville Morgan 6:00 PM Karen Ladd 217.377.4973 1600 W. Walnut–Meeting Room 2 March-December First General Baptist Church Roy and Kay Mattoon Coles Last Tuesday 1:30 PM 217.268.4428 708 S. 9th St. Johnson Heritage Woods – Fox Meadows McLeansboro Hamilton 1st Wednesday 1:00 PM Paula K. Mason 618.643.3868 605 S. Marshall Ave., Dining Room 3rd Sunday St. John’s Rehab. @ Fit Club South Springfield Sangamon Odd numbered 2:00 PM Kelly Neumann, PT 217.483.4300 3631 S. 6th. Street #C months: 1,3,5,7,9,11 14 LiNK AUGUST 2015 VOLUME 29, ISSUE 3 Exercise Classes The APDA now offers 17 exercise classes that meet weekly. Exercise is essential to managing Parkinson symptoms and slowing the progression of the disease. Our patient services funding comes from donations and is limited, so we encourage those who wish to attend multiple classes to make a $5 per week donation. This minimal donation helps us defray the cost of the classes which run around $10 per person to cover the instructors’ salaries, room rentals, and equipment. This donation request is on an honor system, and we don’t turn anyone away from attending as many classes as they choose. To make a donation for exercise classes, use the blue envelope in your newsletter and note that it is for exercise class. Many people choose to pay quarterly to reduce the number of checks they write each month. Any amount you can contribute is used exclusively for our patient services to keep these programs free or at little cost to our patients. Our exercise classes meet once a week or otherwise as noted. Information that has changed since the last LiNK appears in bold. Attend one class per week at no charge, or for $20/month attend as many classes as you want. No RSVPs are required. Check our website, www.stlapda.org, or call to find out any changes since publication.

CITY COUNTY MEETING SITE DAY OF MEETING TIME LEADER(S) PHONE The Center of Clayton Wednesday & Clayton St. Louis 2:00 PM Mike Scheller, PTA 314.289.4202 50 Gay Ave., Mind/Body Room Friday St. Luke’s Deslodge Outpatient Center Chesterfield St. Louis 121 St. Luke’s Center Drive Monday 10:00 AM Sarah Farnell, OT 314.205.6934 Conference Rooms 1 & 2 Friendship Village 15201 Olive Blvd. 636.733.0180 Chesterfield St. Louis Tuesday 1:30 PM Jessica Andrews Friendship Hall-Door #5 x7719 Parkinson Resource Center Chesterfield St. Louis Monday 1:30 PM Becky Miller, DPT 314-362-3299 1415 Elbridge Payne, Ste. 150 Tai Chi Wednesday 10:00 AM Chesterfield St. Louis APDA Community Resource Center Craig Miller 314.362.3299 or Friday 11:30 AM 1415 Elbridge Payne, Suite 150 Yoga Pradip Ghosh, PT, Chesterfield St. Louis Maryville University, Walker Hall Wednesday 6:30 PM 314.362.3299 PhD Reservations Required Aquatic Exercise Summer Session 1:00 PM 636.896.0999 Creve Coeur St. Louis Rainbow Village Brenda Neumann July 6-Sept. 11 Tuesdays x21 1240 Dautel Lane Garden Villas North Bobby Florissant St. Louis Tuesday 10:00 AM 314.355.6100 4505 Parker Rd. Lautenschleger, PTA United Methodist Church Joplin Jasper Monday 2:15 PM Nancy Dunaway 417.623.5560 1730 Byers Ave. RehabCare Kirkwood St. Louis 439 S. Kirkwood Rd., Ste.200 Thursday 1:00 PM Brandon Takacs 618.971.5477 Park in rear Tremble Clefs Singing Salem United Methodist Ladue St. Louis Saturday 1:30 PM Linda McNair 314.362.3299 1200 S. Lindbergh Blvd. Lower Level Choir Room South St. Louis Garden Villas South St. Louis Monday 11:30 AM Mike Scheller, PTA 314.289.4202 County 13457 Tesson Ferry Rd. Barnes-Jewish St. Peters Hospital St. Peters St. Charles Tuesday 11:00 AM Holly Evans, COTA 636.916.9650 Healthwise Center, 6 Jungermann Circle

Aquatic Exercise Summer Session 1:45 PM 636.896.0999 St. Peters St. Charles St. Charles YMCA Brenda Neumann July 6 – Sept. 11 Thursdays x21 3900 Shady Springs Ln.

Lake Ozark Christian Church Lake Ozark Camden Monday 4:00 PM Alice Hammel, RN 573.964.6534 1560 Bagnell Dam Blvd.

Bond County Sr. Center Greenville, IL Bond Wednesday 10:30 AM Anna Oestreich 618.664.1465 1001 E. Harris Ave.

APDA–GREATER ST. LOUIS CHAPTER AUGUST 2015 LiNK 15 American Parkinson Disease Association Non-Profit Org. 1415 Elbridge Payne U.S. Postage Suite 150 PAID Chesterfield, MO 63017 Permit #1032 American Parkinson Disease Association Address Service Requested Help us manage our expenses by letting us know when you move, if you want to be removed from the mailing list, or if you’d rather receive an electronic version. Just call 314.362.3299 or email [email protected] to let us know! Thank you in advance for helping us spend our resources wisely!

Remember to use your eScrip card every time you check out at Schnucks grocery stores and earn dollars for APDA Greater St. Louis Chapter!

Check out our Facebook page at www.facebook.com/ APDAGreaterStLouisChapter

AUGUSTAUGUST 15,1 2015

HullHull ooff a Race – participate in the 10th annual race to raise funds for Parkinson research, held in Hull, Illinois. More informationinforma can be found on their website, www.hullofarace.com. Both 5k and 10k race courses are certified. ThThee race is the kickoff for the Hull picnic – featuring a fried chicken dinner that same night. SAVE OCTOBER 12, 2015 20th Annual Sewing the Seeds of Optimism auction, luncheon, and fashion show held at the Sheraton Westport Chalet. Tickets are THE DATE sold on a first come, first serve basis. More information is available on our website, www.stlapda.org/services/fashion-show. OCTOBERO 31, 2015

PartnersPartne in Parkinsons (PIP) invites you and your family to attendattend thisth event in Collinsville, IL. To learn more or to sign up, visit: https://wwhttps://www.partnersinparkinsons.org/apda/saintlouis. Partners ini PParkinson’sarkinson’ss helps patients and caregivers gain knowledge and support fforor navigating a Parkinson’sP diagnosis and the PD progression in order to optimize care at everyeve stage of the disease. Whether you’re new to Parkinson’s or have been livingliving with the disease for years, attend this free full day of interactive panel discussions and breakout sessions - lelearnarn aboutabout livingliving withw Parkinson disease, building the right care team (including when and how to seek specialist care), ask your owownwn ququestions,estions, aandndn connect with Parkinson resources in your own community. Browse a resource fair to connect with leaders ffromrom youryour locallocal medicalmed and Parkinson’s community (local clinicians and movement disorder specialists, allied care providers spspecializingecializing iinn PDPD,D, research sites conducting local studies, and support and advocacy organizations). Partners in Parkinson’s hahass bbebeenenn developeddeve elloped by The Michael J. Fox Foundation for Parkinson’s Research and AbbVie. NOVEMBERNOVEMBER 15, 2015

ParkinsonPaP rkinsos n EdEducationalduccattio Program (PEP) featuring Dr. Joel Perlmutter, Debunking Myths About PD, will be held at Congregation SShaarehaare Emeth,Emeth, 116451164 Ladue Rd. in Creve Coeur starting at 2:00 p.m.