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.