Read InformantWinter2008.pub text version

FOR INDIVIDUALS IMPACTED BY PARKINSON'S

THE INFORMANT

WINTER 2008

26.2 MILES LATER

Information & Referral Center Iowa Health-Des Moines 1200 Pleasant Street, E-524 Des Moines, Iowa 50309 515.241.6379 Toll Free 877.872.6386 Fax 515.241.6393 www.apdaiowa.org Lynn K. Struck, MD Medical Director Sam Erwin Coordinator/Editor [email protected]

On October 19, 2008, after walking almost 8 hours, I crossed the finish line of the IMT Des Moines Marathon. I was not the fastest, but my husband assures me I was not the last one to cross the line. By finishing this event, I join the other individuals diagnosed with Parkinson's disease; LaDona from Urbandale and Rick from Clive, who also successfully completed their events with the other PDWalkers. I could write that it was easy and painless, but it was not. Training began in June and throughout that time I learned; that your hands and feet will become numb if you are dehydrated and that the small of your back will cramp if you are leaning too far forward. And that blisters will become a part of my training. I need to thank so many people who quickly sent out cards of praise and concern of my sanity when they heard that I was planning on walking a marathon. Because of these many people, I knew I could not consider stopping on that day. There were many times when I felt very alone when walking, but looking up, I would see a PDWalker t-shirt. Or someone in the event or on the sidelines would say an encouraging word, reminding me that I was not alone.

Because of my involvement with this event I have acquired some wonderful new friends. I have to thank my friends, LaDona and fellow PDwalkers, who stayed behind to see me through my last steps. Also Ervin and Gayle Fopma for also attending and photographing my steps through the finish line. But most importantly, how can I overlook my husband, Rick, and his support? Throughout my training I would leave home stating I was going for a walk and calling him 4 or 5 hours later asking for a ride home. He never complained, and even today he questions my sanity. But hey, he loves me. Also to my son, David, who rushed over to the house to help Rick get me out of the car when I arrived home. Thanks folks for everything! -Sam Erwin

All material related to Parkinson's disease contained in this newsletter is solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient's physician. Specific articles reflect the opinion of the writer, and are not necessarily the opinion of the editor, the Information and Referral Center, the medical director of the Center or the APDA.

The printing and distribution of this newsletter is funded by the Iowa Chapter of APDA

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FDA APPROVAL OF REQUIP XL

Food & Drug Administration approval was based on the results from the EASE-PD (Efficacy and Safety Evaluation in Parkinson's disease) adjunct study. This was a multicenter, double-blind, placebocontrolled study in patients with Parkinson's disease not adequately controlled with levedopa. There were 393 patients in the study. In the study, 202 patients received Requip XL and 191 patients received placebo once daily for twenty-four weeks in addition to the levedopa. The main objective of the study was to look at the change from a patient's base line to week 24 for the amount of time spent "off". Patients had to keep diaries. The study showed that requip XL reduced "off" time by 2.1 hours per day. Placebor patients only reduced "off" time by 0.4 hours.

Lynn K. Struck, MD Medical Director ReQuip XL: The First and Only Oral onceDaily Dopamine Agonist for the Treatment of Parkinson's Disease.

Quick Glance

Drugs Used to Treat PD Five classes of drugs are used to treat the motor symptoms of PD: Dopaminergic Agents Levodopa Dopamine agonists Apomorphine (Apokyn®) Bromocriptine (Parlodel®) Pramipexole (Mirapex®) Ropinirole (Requip®) COMT Inhibitors Entacapone (Comtan®) Tolcapone (Tasmar®) MAO-B Inhibitors Rasagiline as Azilect® Selegiline as Eldepryl® and ZelaparTM (an orally disintegrating selegiline tablet) Anticholinergics Trihexyphenidyl (Artane®) Benstropine Ethopropazine Amantadine (Symmetrel®)

An extended-release ropinirole tablet Requip XL® has been developed for the treatment of Parkinson's disease. The dosage range is between 2 mg and 24 mg Requip Xl was generally well tolerated in a day. The rationale for developing the the study. The withdrawal rate due to extended-release tablet was to improve on adverse reactions was low and similar several properties of the immediatebetween the groups (6% Requip XL versus release form of ropinirole. It allows once5% placebo). The most common daily dosing. There is a simpler Requip XL was adverse reactions were dyskinesias dose titration regimen. Also, generally well (13% versus 3%), nausea (11% Requip XL provides continuous tolerated in the versus 4%), Dizziness (8% versus delivery over 24 hours. This 3%), hallucinations (7% versus 3%), provides smoother blood levels study. somnolence (7% versus 4%), without the peaks and troughs abdominal pain/discomfort (6% versus that multiple daily doses typically deliver. 3%), and orthostatic hypotension 95% Many Parkinson's medications have to be versus 1%). taken multiple times during the day, and it If you feel that this medication could be an is difficult for people to remember to take option for you, contact your neurologist to their medications at the specific time. If discuss this. their medications are not taken correctly, patients may experience what is commonly referred to as "off time". This is when the medication wears off, and the Parkinson' symptoms return. Research has shown that Requip XL, when added to levodopa, reduced the amount of "off" time experienced by atients with Parkinson's disease by 2.1 hours per day on an average.

The printing and distribution of this newsletter is funded by the Iowa Chapter of APDA

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WHAT IS A CLINICAL TRAIL?

(The following information is reprinted from www. PDTrials.org) A clinical trail (also called medical research or a clinical study) is a study intended to help answer specific questions about a treatment by studying its effects in people. Clinical trials are designed and conducted by scientist and medical experts who invite people to participate in testing the new therapy (treatment). The purpose of a clinical trial is usually to test the safety and efficacy (the extent to which a specific intervention, procedure, or regimen produces a beneficial result under ideal conditions) of new treatments. Clinical trials may also be conducted to learn other things about medical treatments or procedures such as how the treatment interacts with other drugs. Clinical trials are essential and necessary components of the scientific research process. It is only through clinical trials that new medications and treatments become available! Clinical trials that test new treatments or therapies in the U.S. are regulated by the Food and Drug Administration (http://www.fda.gov). Clinical trials are conducted and carefully monitored in a series of

Phase I: This phase begins after researchers have completed pre-clinical laboratory and animal studies. A therapy is tested in trials of approximately 20 to 80 otherwise healthy individuals for safety, to establish how the medication is metabolized and to determine the safety of different dosage levels. Phase II: These studies are designed to further define the safety of the therapies being tested, and to provide preliminary measure of effectiveness. Researchers will study the effects of the medication on a larger number of study participants--usually 100 to 300. They continue to monitor participants closely to ensure that the drug is safe and well tolerated in humans. Phase III: This step is designed to measure whether the treatment actually benefits people with Parkinson's disease, and whether its benefits exceed its risks. Phase III tends to run over longer periods of time and with still larger populations (sometimes as many as 1,000 to 3,000 participants). Many of these trials divide participants into two groups; a control group, in which the individual is given the comparison treatment, and an experimental group, which receives the treatment being tested. Each group is equally important. Most of these trials are so-called double-

blind trials in which neither the participants nor the researchers know who is receiving the "test" treatment and who is receiving the comparison treatment. This is to ensure objectivity. The comparison treatment could be a different dose of the "test" treatment, a treatment that is already available and that is considered standard therapy for the disease, or placebo. A placebo is an inert substance that looks like the drug being tested, but has no medical activity. Some studies are openlabel, where the participants know what is being tested and what treatment and dose they are receiving. For all trials, the study team consists of medical professionals who monitor the study participants for safety, tolerability and the efficacy of the treatment. Phase IV: If the previous studies are successful, they lead to applications for approval from the FDA. Once approved for a specific medical condition, these treatments can be made available to the open market. Some treatments may be further tested in the general population in Phase IV Trials-possibly to see how they might help people with other conditions. Phase IV trials also test the effect of different dose levels and give researchers a better picture of any long-term effects.

Visit www.PDtrials.org website where you can:

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Search by zip code to locate studies in your area Read personal stories from people who have participated in clinical trials Learn how people without Parkinson's and family members can participate in clinical trials.

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Download and order clinical research informational materials Sign up and receive the monthly PDtrials email bulletin for updates on new clinical studies and related news

For additional information on PDtrials, email them at [email protected], call 800.457.6676, or visit www.PDtrials.org

PDtrials is led by the Parkinson's Disease Foundation in collaboration with the American Parkinson Disease Association, The Michael J. Fox Foundation for Parkinson's Research, the National Parkinson Foundation, the Parkinson's Action Network, The Parkinson Alliance and WE MOVE. The project is advised by the National Institute of Neurological and Stroke, the Parkinson's Institute and Clinical Center, the Parkinson Pipeline Project and the Parkinson Study Group.

The printing and distribution of this newsletter is funded by the Iowa Chapter of APDA

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THANK YOU TO OUR 2008 DONORS

The contributions of our donors make this newsletter and the other services provided by the chapter and the Information and Referral Center possible. Your generosity is genuinely appreciated, and it helps to "Ease the burden and find a cure."

Buddie & Mary Adkins American Ag Ins Co AON Foundation Kathryn Arts Richard Ball BALL Construction Donald Barie Robert & Kathryn Barks Teresa & Klaus Bartschat James & Marisa Beal Tim & Linda Bigley David & Shirley Bliven Frances Boesel Trust Gerald & Mattie Bogaards Jerry & Mary Booth Cynthia Bowen Kent & Sandy Bragdon Jim Brannen LH & AM Brinker Brooklyn Bear Creek Community Fund Judi & James Brown David & Lora Brown Brock Brown Dean & Deb Brown Jean Burr Margaret Buttler John & Mary Byers Darrel & Jeanne Campbell John & Trayla Carter Casey's General Stores Ruth Cater Thomas & Lois Cole Ron & Rosemary Coleman Doug & Barb Collins Cathy Cook Corporate Contracts LLC Country Clinic Denise Cox Robert & Diane Cronin Florence Crow Gary & Lisa Culp Dairy Queen 4 Donald & Lois Dau Don Dauterive Charles & Robin Davis EJ & Katherine DeBruyn Wade & Kathy Dewald John & Jill Dillenburg Aubrey & Dorothy Everly Mike Earp Earthworks Inc Enterprise Rent-A-Car Richard Ertz Sam Erwin Steve & Lavonne Farner FBL Financial Group Inc Deb Ferjak FISERVE Foundation Richard Fleming Joann Flynn Monica & William Follman Ervin & Gayle Fopma Dale & Kathleen Fouch Scott Freeman Janine & David Frettim Carol & Richard Fry Dale & Laura Fusselman Ruth & Ralph Gaede David & Kristine Gale Donna Gatton Scott & Lori Geadelmann Heather Gierstorf Kristin & Tom Goracke John & Yvonne Govern James Gremmels Dorothy Halverson Nancy & Doug Hamilton Jeffrey & Susan Hand Sharon Hansen Jeff & Stacey Hansen Krystal Hanson Matt & Amy Harbert Gary Harms Josephine & Robert Harris Kenneth & Lauren Harrison Jack & Jo Hartle Yvonne Hartung Deb Heaberlin Patricia Healy Keith & Susan Hinds Nancy & Curtis Hoegh Keith & Pamela Hoffman Lou Hollingsworth Holmes Murphy & Assoc Inc Bob & Barbara Holsapple Homesteaders Life Co John Hood Thomas & Patricia Horton Pamela Hudson Hummel's Marcia & James Hurley Ron & Leigh Hurst Mary Hutchinson Iowa Realty Iowa Farm Bureau Federation ITA Group Wendell & Joan Jackson Joel Jacobsen Deanna January B. Jaschen Jasper County Support Group JCL Mgmt Corp Jill's Enterprises Inc Lillie John Johnson's Phillips 66 Mary Jones Kevin & Lindsay Kain Janice Kain Donald & Janice Kain David & Michelle Kane Jerry Kemperman P.J. & A.J. Kinrade Sue & Jack Kirk Doug & Sheila Kirk Jane Kirk Ed Kleinstauber Kathy Klinge Ehlers Ed & Marcelle Knapp Harold & Mary Kock Gloria Koon Paul & Gloria Koon Keith & Christina Kroner John & Mary Krumbholz Neil Kuehnl Ross & Betty Kunze Ladies Unlimited Leo & Sherry Lambi Ronald Landphair Allyson & Ronnie Landphair Ruth Lavrenz Garold & Beverly Leazer Lois Leeson James & Karen Lefleur Robert & Judith Lehman Konstantinos & Lolani Lekkas David & Kathy Lien D.S. Lint Gina Lively Helen Lorenzen Dorothy & Dale Lund Erik & Penny Luthens William & Debra Lynch Jacquelyn & Richard Manatt Mark Martin Julie & Greg Martin Al & Suzanne Mataloni Joan Mattingly Marilyn McCarthy Robert & Marion McCrory Christopher & Kristin McCullough Jim & Donna McGrean Jana Mentzer Metro Salvage Pool Inc Greg & Kristin Meyer Robert & Victoria Miller Janice Mineart Janice Mobley LaDona & Jeff Molander R. Dell Molander Monsanto Fund Bob & Barbara Moore Keith & Sandra Moore Roger & Dora Moore Joe & Judith Morgan Rosella Morgan John Mottet John & Sherry Mottet Arnie & Peg Myers Myers Tractor Repair Nadine Nagle Nelsen Appraisal Assoc Ron & Jane Nelson Dennis & Becky Neubauer Denny Neubauer William & Ruth Newton Nora Nurre Jon & Tammie Ollendick Ron & Joyce Opfer Tonya & Leo Orth Overland Solutions Inc Thomas Parks Paul David Restoration Performance Check Inc Walter & Betty Petersen Gwen Peterson Douglas & Janet Pine Pioneer Hi-Bred Gary Poetting Richard Postma John & Eloise Prater Jeff & Jill Preston Dennis & Heidi Puckett Quality Planning Corp

The printing and distribution of this newsletter is funded by the Iowa Chapter of APDA

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THANK YOU TO OUR 2008 DONORS (CONTINUED)

Scott & Kathy Rachuy Charles & Patsy Railsback Kathy Rambo Betty Rankin Brett & Shan Ray RC Insurance LLC Randy & Stephanie Reed Maurie & Mary Reimers Michelle & Richard Rhoades Karla Richards Ayrica Richardson Lawrence & Paula Rissman Dian & Michael Ritter Denis & Mendy Ritzman Nicholas Rogers Joseph & Gladys Rusek S&R Strategies Inc LouAnn Sandburg Nancy & Kent Schornack Dan & Julie Schuck Aaron Schwartz David Sebastian Raymond & Marjorie Seegers ServiceMaster West Gary Shafer Peggy & Kenneth Shearer William & Jackline Shelley Scott & Linda Shuck Stephen & Claudia Siegel Roger & Delores Sievers Roger & Delores Sievers Dorrie Sievers Rhonda Sievers William Sjulin Clyde Smalley Corliss & Barbara Smalley Tiffany Smith James & June Smith David & Mari Lu Smith Southridge 11 Seniors Dennis & Faith Spark John & Jane Speck Lauralee Staley L.A. & Shirlee Steinbach Darryl Stensland Bonnie & Dick Still Byron Stone Storey Kenworthy Sarah & Ben Stouffer Mike & Lynn Struck Syverson Strege & Co Mike & Holly Taylor Holly Taylor Teva Neuroscience The Art Store David & Theresa Thompson Toyota of Des Moines Trenton Missouri Support Group Marlys Unruh Mark Vander Linden Clifford & Barbara Vogen Kevin & Lynette Wagner Theresa Wallace Shirley Wangler Jean Warren Michael Warren Kim Weber Scott & Diane Weiser Wellmark Sidney & Johanna Westra Anthony Whitaker BE White B.E. White Kay Whitehead Randall & Karen Wickey Pat Wilson Deb Wityk Julie Wooden RF & JM Wright R.F. & J.M. Wright Michael Wright Wendy Wyatt

SPECIAL TRIBUTES

Memory of Frank Belkey Alberta Belkey Memory of Lester Chambers Patrice Webber Memory of Thomas Costello Tom & Beth Costello Memory of Glen Drew Stanley & Betty Bishop Don & Diane Carter Leslie & Nancy Cullers Dwight & Debbie Drew Esther Drew Robert & Mary Edwards Farmers/Merchants Svgs. Marilyn Osborne David & Donna Friedman Martha Hurlbut Lois Lee David & Alice Meling Dale & Valinda Meyer Jean & Janice Meyer R&D Meyer Roger & Eileen Moore James Sebetka Judy Meling FB & GF Peters Jeanne Waite Memory of Walter Hartschen Joyce Hartschen Peggy Bone Gerald & Lois Spitznagel Kim & Kevin Stephens Cinda & Robert Cox Charles & Jean Hensley Phyllis Clark Diane Harschen Weitz Company Memory of Myrta Kaufmann R.F. Drake Dale & Virginia Drinkall Philip & Mary Jo Fitzgerald James Hahn Iris Hetzler Wilbur & Marion Hetzler Robert & Marcia Leech Earl Phillips William & Marcia Reesink SE & RM Ridge Marlin Schauland Memory of Betty Leach Vernon Leach Memory of Dave Markle Louise Conry Dolores Markle Clint Richards Memory of Richard McDonald Thomas & Cheri Gronoski Florence Luloff Dave & Jean McDonald Bobby & Jeanette Pace Memory of Lyle Middleton Stephen & Dawn Roberts Memory of Donald Muhm Joann Muhm Memory of Harry Nagle DART Orval Ostrem Memory of Malcom Ott Til Ott Memory of Maryls Ross DD & AL Baker Frances Graham Roy Groote Roy & Esther Kuhn Dores Ross Donald Stahl Roy Stahl Memory of Rosie Sasseen Keith Sasseen Memory of Roger Sumners George Mechem Memory of Ella Terlouw Robert Terlouw Memory of Joseph Torpey Tom Torpey Memory of Jim Toussaint Donald & Virginia Dass Honor of Jerry Booth Mary Booth Honor of Rita Ann Clark Beverly Wildman Honor of Ronald Coleman Mrs. Raymond Oltmann Honor of Joseph Kacena Guaranty Bank Honor of Julie Kollman Michael & Deb Sears Honor of Ron Landphair Ron & Martha Landphair Honor of Dennis Neubauer Maxine Busche Honor of Nancy Ritter Shirley Axmear Honor of Mark Sloan Mark & Darlene Sloan Honor of Fred Timms Grace Timms

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SUPPORT GROUPS

Ames Sue Wolfe Sue Trevillyan 515.239.2600 Atlantic Bethaney Rogers 712.243.1850 Burlington Ruth Newton 217.453.2481 Sherry Engberg 319.752.3359 Carroll Melissa Schultes 712.794.5539 Cedar Rapids Jackie Ryan 319.369.8139 Charles City Carol Quade 641.228.5053 Clarinda Marilyn Bousch 712.534.2545 Creston Myra Schindler 641.344.9065 Clinton Don & Rita Schneider 563.243.5585 Decorah 563.568.5040 Davenport Nancy VanHook 563.332.4098 Joe McCarthy 309.762.9231 Des Moines Patrice Webber 515.241.3445 Valerie Stickel 515.358-0002 Des Moines Wesley Acres Sam Erwin 515.241.6379 Dike Bill Hinkle 319.989.2110 Dubuque Jane Osterhaus 563.582.7313 Fairfield Chris Keyser 319. 696.2001 Fontanelle Lavon Lutz 641.745.4044 Holstein Karla Hansen 712.368.2285 Indianola Heather Bahr 515.962.4741 Iowa City Judi Gust 319.351.5248 Jefferson Annette Ganoe 515.386.2114 Leon Jim LeFleur 641.446.7456 Marshalltown Joyce Hughes 641.752.0349 Mason City Ginger Hood 641.424.6216 Joann Hammerstedt 641.423.3634 Newton Eloise Pater 641.791.1018 Pella Esther Deprenger 641.628.3138 Sioux Center Mandi Roskam 712.722.8325 Sioux City Marilee Lynn 712.389.2954 712.258.4944 Spencer Joe Carroll 712.262.1185 Washington 319.653.5473 Waterloo Nancy Hart 319.235.3590 Waukon 563.568.5040 Trenton, MO Gloria Koon 660.485.6558 DBS Deb Wityk 515.833.2575 Young Onset Groups Cedar Rapids Dave Jones 319.396.7852 West Des Moines Denny Neubauer 515.265.4889

SUPPORT GROUP­ YOUNG INSPIRED PARKINSON'S SUPPORTERS, WEST DES MOINES

The printing and distribution of this newsletter is funded by the Iowa Chapter of APDA

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SUPPORT GROUPS Newton Iowa. The history of Jasper County Parkinson's Disease Support Group. It all

began with friends visiting at a Kiwanis guest luncheon in Newton, Iowa in the mid 1900's. Harold and Florence Crow and John and Bonnie McConeghey discovered that both Florence and John had recently been diagnosed with Parkinson's disease. They found very little information on the subject and questioned available research. Newton Library had only one book about Parkinson's disease. Florence told John that she would be willing to help develop a support group. After another evening together a plan of action was formed. They would need to develop a list of people with the disease, secure a location to meet with a program for the first meeting. John developed a brochure, distributed it to pharmacies in the county, and asked that one be included with each prescription. Physicians were asked to give the brochures to appropriate people. An article was published in the Newton Daily News and announcements were aired on the radio. Twenty people attended the first meeting at the Newton Library classroom. Decisions were made; meet monthly January--October, John was chair, Florence program facilitator and Jean Bridenstine as secretary. The group officially became the jasper County Parkinson's Disease Support Group. John attended workshops in Des Moines, Milwaukee, and Minneapolis to get ideas. Speakers include psychologists, physical therapists, speech therapist, physicians and nutritionist. In 2007 John and Florence stepped down from their assigned roles but still attend and Eloise Prater, retired RN, has accepted the role of facilitator of the group. The group still continues to meet monthly adding a holiday luncheon in early December.

Save the Date:

FRONTLINE to Air Parkinson's Special February 3, 2009 "My Father, My Brother and Me," television and radio producer Dave Iverson's film on Parkinson's disease (featuring an interview with Michael J. Fox), will air on FRONTLINE on February 3, 2009. (Check local listings for air time on your local PBS station.) Iverson has been a television and radio producer for over 30 years. Two years ago, he took on a very personal project, a film about Parkinson's disease. Iverson first learned about Parkinson's in the fall of 1971. That was when he got a letter from his mom telling him that his father had been diagnosed with the disease. Twenty years later, Iverson's brother was diagnosed with Parkinson's. And in the summer of 2002, Iverson himself began experiencing familiar symptoms; it would be two years before his diagnosis became official, but he knew what the likely outcome would be. For Iverson, Parkinson's is a personal story, but the disease is much more than a family saga. It's the second most common neurological disorder there is, and it raises intriguing questions for science and our aging society. His film, My Father, My Brother and Me, explores all of these angles. The program will be broadcast on FRONTLINE February 3, 2009, and available to watch online beginning January 29. But in the meantime, excerpts from the film are already available to view online, and the producers are sharing stories and answering questions on their blog. You are invited to join the conversation. http://www.pbs.org/wgbh/pages/frontline/ parkinsons/

YIPS

Here in Iowa we have a group, Young Inspired Parkinson's Supporters (YIPS) who recognize that young is a state of mind. Some of these folks have traveled to New York City to participate in the Unity Walk. Others have traveled to Washington DC to participate in the PAN Forum. Their ages range from 5083 years, but they step forward to volunteer in many of the events. The group coordinated and financially supports the Art @ the Capitol event. For additional information contact facilitator, Denny Neubauer, [email protected] or 515.265.4889.515.

DaPOY

What is DaPOY? DaPOY is a group of individuals with the diagnosis of Parkinson's disease with children at home. There is a pilot program offering an online support group opportunity beginning the end of January for six months and a family day event scheduled for the fall is being planned for the entire family. For additional information contact Sam Erwin, [email protected] , 15.241.63779 or Toll Free 1.877.872.6386.

This is being offered due to the support of a grant through TEVA.

The printing and distribution of this newsletter is funded by the Iowa Chapter of APDA

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EASE THE BURDEN WALK­ SEPTEMBER 2008

with and in various stages of PD. Some walked fast, some walked slow, and some did not walk at all, but came for the companionship and friendship of friends and family members. This event was truly an example of the teamwork and community spirit. Not to mention, it was a whole lot of fun enjoying the camaraderie of friends and colleagues along with the satisfaction of knowing we are making a difference. We are looking forward to Walking To Ease The Burden again next year! Mark your calendars for Saturday, September 19, 2009!

live music provided by Mike Ketcham. The In 2006, Sogeti's Community Involvement walk began at 9am. Despite the rainy Committee began discussions with weather and conflict with the Iowa/Iowa individuals from Iowa Health Systems in State football game, we had 80+ registered regard to sponsoring a yearly walk to raise walkers and raised $3,650! money to support on going research for the American Parkinson Disease Association, What is Sogeti's personal tie to people living with Mary Jones' father was the disease? Mary Jones' father Parksinson's Disease, (PD) was diagnosed with PD a number diagnosed with PD a their caregivers and of years ago. Although his number of years ago. Parkinson education. symptoms are controlled for the most part by medication, the disease has After much planning and preparation, on certainly impacted his life and the lives of Saturday, September 13, 2008, we walked the family members in many ways. "To Ease The Burden" for the American Parkinsons Disease Association. Over 80% of our registered walkers on Registration began at 8am along with great September 13th were individuals diagnosed

Thank you

Our 2008 walk would not have been possible without the following Contributors/Sponsors: Sogeti USA LLC, Dr. Lynn Struck, Sam Erwin, APDA Board Members, YIPS, Creston Support Group, Kyle Lawler, Anderson Erickson, Homesteaders Life Insurance Company, Mike Ketcham, Keith Kroner (Medtronics Inc.), Nate Carter (Teva Neuroscience), Rick Pope (photography), Wade DeWald and Carla Ray.

FAMILY WALKING FOR PEG,

What's shakin'?

All I can say about my family is how great they are. Obviously there are a lot of us (and that was only about half really!) and whenever someone needs anything, all it takes is a phone call. The love and support they give me dealing with Parkinson's is great. Parkinson's actually affects our family twice...both me and with my sister-in-law's mother. So when someone learns about new treatments or hears any new information, phones start ringing and the word gets spread very quickly. Family members are quick to help me with family dinners, house cleaning or even errands when I don't feel up to it. And extended family members are always telling me they are thinking and praying for me when I see them. I am very blessed to have such a support system and wonderful family. ­Peg from Johnson What's shakin'? A family-centered team to participate in the Ease the Burden Walk.

The printing and distribution of this newsletter is funded by the Iowa Chapter of APDA

FOR INDIVIDUALS IMPACTED BY PARKINSON'S DISEASE

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CARE PARTNER'S--PARKINSON'S DISEASE FORCES GOOD CHANGE

What!?! How can the unsought, challenging life changes forced on us by PD be a good thing? For me, Carolyn Allen Zeiger, this has at least two answers: 1. As a theologian friend said recently, "Sometimes our service to humanity is chosen, and sometimes we are drafted." I was definitely drafted into my service to humanity via PD!. The first type of service I offer is to one person, my husband. Even when it is only one person, still it is service to humanity to take on the responsibility for supporting a person through a progressive, degenerative disorder `til death do us part. The second is to my brother, to whom, for the first time, I am no longer one of the several "little sisters," rather, almost a big sister to whom he turns for information and support. PD has also pulled me into a larger form of service in the work I am doing individually, and together with my husband, in serving the community of those with PD plus their families and friends who support them. 2. Another good change is that Paul and I are bringing together our diverse trainings, skills and career into an activity-and service-that we do together. Given that ,due to PD and financial constraints, we must basically stay home and be together most of the time. This is a wonderful new way of life. It gives us something we can do together that is good for others, and therefore meaningful to both of us, and also fun. 3. OK, more than two answers. Our PD related work has also turned into yet another career for us both that is bringing us needed incomes as Paul's medical expenses increase and the income from our investments decreases! 4. Doing this work together also is making it possible for Paul to continue doing work he loves that he could no longer do on his

own, so it is even a form of therapy for him. 5. What's more, Paul has cared for me through some serious medical problems over the years, and it feels good to do the same for him. 6. Wow! I am now up to number 6. This one is about as fundamental as you can get. Sogyal Rinpoche, a Tibetan Buddhist teacher, has said that how well we die is closely tied to how well we learn to navigate change during our lives. This makes such sense to me. The two most fundamental changes in life are birth and death: the transition into life and then out of life. The latter is the one change that we can prepare our selves for, throughout our lives, not just at the last gasp. At the point in our lives when we are most likely to become rigid and devoted to maintaining "things as they are," Paul and I have been called upon to make some drastic changes in our lives, and our sense of who we are and are not. Thinking of this as training for making the Big Change in years to come, (or at any moment) has inspired me to embrace these changes as opportunities to grow, to enhance my ability to relax into change, see the opportunities for transformation and even delight. To get some "oh, boy!" out of it instead of "oh, no!" To see myself as getting desired training instead of being on a grim forced march. Of course I don't feel this way every day, let alone every minute. It is more like a reminder when I am feeling overwhelmed or put upon. Choose it! Embrace it! Go with it! I sat with my mother as she died, holding her hands and looking into her eyes, and that is exactly how she went out--like an athlete who had prepared for the final event. Moving forward instead of resisting what ultimately can not be resisted. Carolyn Allen Zeiger, Ph.D. has over

40 years experience in the fields of clinical, organizational and health psychology, including Vice President of The Athena Group, a consulting and training firm in Denver, CO, and Clinical Director of Comprehensive Psychological Services Group, a private multi-disciplinary mental health clinic that she founded in Boulder, CO. Carolyn's husband Paul has Parkinson's disease, as does her brother. She facilitates a Parkinson's caregivers' support group in Denver, and assists her husband Paul in teaching yoga to Parkinson's disease patients. She is a licensed psychologist in the state of Colorado, and a certified practitioner of Jin Shin Jyutsu®.

Resources for Caregivers

Books

Caring for Mother; a Daughter's Long Goodbye. Virginia Stem Owens Flying High Without Wings; Living With Parkinson's Disease. A Caregiver's Story. Selma Holme How Did I Become My Parent's Parent? Harriet Sarnoff Schiff Self-Care for Caregivers, a Twelve Step Approach. Pat Samples, Diane Larsen & Marvin Larsen I'll Take Care of You, a Practical Guide for Family Caregivers. Joseph Ilardo, Ph.d., LCSW & Carole R. Rothman, Ph.D. Caring for the Parkinson Patient, a Practical Guide. Edited by j. Thomas Hutton, M.D., Ph,D. & Raye Lynne Dippel, Ph.D. Caregiving, Hospice-proven Techniques for Healing Body and Soul. Douglas C. Smith The Comfort of Home for Parkinson Disease: a Guide for Caregivers. Maria M.

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UPCOMING EVENTS

Annual PD Conference June 19, 2009 Lutheran Church of Hope 925 Jordan Creek Parkway West Des Moines Topics will include;

The Parkinson's Action Network (PAN) hosts the 15th Annual Research & Public Policy Forum Sunday, March 15 through Tuesday, March 17, 2009 in Washington D.C. The 2009 Forum provides two days of training in advocacy and the latest scientific advances in Parkinson' disease research, leading up to a final day of meetings with members of Congress on Capitol Hill. Forum attendees learn about PAN's 2009 legislative agenda, issues important to the Parkinson's community and see the power of advocacy.

The Forum also provides a unique opportunity to interact with others in the Parkinson's community and discover skills to take home to convey PAN's message in a more effective way. This annual gathering of advocates and leaders in the Parkinson's community gives those new to advocacy the chance to learn from those who are active in grassroots efforts. For additional information on this event and scholarships to attend or on Pan, please visit www.parkinsonaction.org or call 800.850.4726.

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Genetics and PD Deep Brain Stimulation Round Table Non-Motor Symptoms of PD Work environment and PD Caregiving

Art @ the Capitol

April 21, 2009 State Capitol An opportunity for artists with the diagnosis of Parkinson's disease to show and sell their art to the public. An invitation will be also sent to our representatives in session at the time to stop by and visit. Any medium is accepted in the past this included quilting, photography, carving, pencil drawing, flower arrangement, pastel and woodworking. Not an artist? Come and support these artists in their work. Or arrange a time to also speak with your representative. For additional information or to receive an application contact Lois Cole. Email: [email protected] Phone: 515.288.1250

And by request the following are returning;

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Tai Chi Hypnotherapy Spirituality

Committee members are; Mary Booth, Rebecca Broerman, Cindy Bowen, Sam Erwin, David Ganfield, Bill & Corrine Hinkle, Shari Jillson, LaDona Molander, Deb Wityk, and Janice Uitenbroek. For additional information contact Sam Erwin [email protected] or 515.241.6379.

"Art

can be ...a discovery of oneself, instinctively there is a fear of placing something on the page or canvas with the possibility

of being misunderstood. But when introduced to the freedom of color and striving to fill the page with that color, brings an understanding that the limits we face at times are ours given to ourselves. This is a constant reminder that when a morning greets me in a stubborn struggle to rise up I need to color my day, achieving only limits that I choose to embrace and when fatigued...choose another color, another limit." -Sam Erwin, 2008

The printing and distribution of this newsletter is funded by the Iowa Chapter of APDA

FOR INDIVIDUALS IMPACTED BY PARKINSON'S DISEASE

Page 11

IOWA CHAPTER

The Quiet Spirit

By Elizabeth Santos, Pottstown, Pennsylvania

Iowa Chapter of APDA PO Box 507 Waukee, IA 50263 Co-Presidents Jeff Molander Sabrina Moe Treasurer Tim Bigley PAN Representative Karla Hansen Directors: Jerry Booth Cynthia Bowen Lori Geadelmann John Krumbholz Kyle Lawler, Kristin Meyer Shirley Winters Deb Wityk Deb Yount-Woods

Who is this quiet spirit who has come into my world Creeping slowly towards me as his mysterious traits unfurl Discourteously introducing without asking to come in With no consideration for the person who's within He walks in silent footsteps both steadfast and precise And slyly interrupts the daily rhythm of my life He deliberately alters my step, my gait, my hand And manifests himself in ways that I can't understand But the ruinous disease failed to realize from the start That he may control my movements, but he can't control my heart And that, my friends, is why I have come to realize That his destructive nature will not be my demise In fact, I think I'll thank him for the favors he has shown He forced me to consider certain failures of my own He made me realize my life was full of useless stress And revealed to me the treasures with which I'm truly blessed He opened up my eyes so that I could look inside

Matching Gifts Many companies and corporations will match your tax-deductible gift and double or triple the amount contributed to continue the APDA mission "To ease the burden and find the cure". Gifts can be in memory of a loved one or friend or to celebrate a special occasion. A card is sent to the designated person telling them of your generosity and thoughtfulness.

The window of my soul and see convictions that I hide My heart feels strangely more content in very special ways It seems I savor every moment of every single day I've discovered things about myself which never came to light Expressing thoughts for me had been constant losing fight So timid and misunderstood, I always felt apart And now I feel the urgency to open up my heart Rarely a letter did I write, seldom a note I sent So difficult it was for me to say just what I meant But suddenly poetry came flowing from my pen And thus this verse to tell the world how truly blessed I am.

The printing and distribution of this newsletter is funded by the Iowa Chapter of APDA

Parkinson Disease Information & Referral Center 1200 Pleasant Street, E-524 Des Moines, Iowa 50309

It is estimated that 1.5 million people are diagnosed with Parkinson's disease in this country. I know one of them.

The printing and distribution of this newsletter is funded by the Iowa Chapter of APDA

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