volume 5 w issue 3 winter 2014
Live it! is a publication of the Iowa Parkinson Disease Information and Referral Center
!
Season’s Greetings
from the Iowa Chapter of the APDA
A Resource for Iowans with Parkinson’s Disease and those who care for them
! s g n i t e e r G s Season’ of the APDA. r te p a h C a w Io e from th and yours u o y g in h is w ’s re He ay season a wonderful holid d happiness! n a y jo , e v lo h it w filled
table of contents
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Upcoming Events, Exercise Groups Connect with the Chapter ArtAbility Feature Story: Paying it Forward Donations/Subscription Information
contact us/connect with us Iowa Parkinson Disease Information and Referral Center UnityPoint Health – Des Moines 1200 Pleasant Street E-524 , Des Moines, Iowa 50309 (877) 872-6386 | www.apdaiowa.org Scan the QR code at left to go directly to apdaiowa.org
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ONLINE
Live it! is also available online! Visit www.apdaiowa.com for an electronic copy. Also, follow us on Facebook (www.facebook.com/IowaIandR) and Twitter @IowaParkinson (twitter.com/IowaParkinson)
We hope you enjoy this special holiday issue of Live it! Please contact us with any questions and watch for the upcoming spring issue.
8 Live it! Staff
Medical Director: Lynn Struck, M.D. Managing Editor: Crissanka Christadoss Editors: Linda Jordening and Vicki Ingham Contributing Writer: Julie M. Curry Art Director: Patrick Vaassen
Live it! Editorial Board
Lynn Struck, M.D., Medical Director Crissanka Christadoss, Coordinator, Iowa Parkinson Disease Information & Referral Vicki Ingham Linda Jordening Patrick Vaassen
Request for Submissions:
The staff would like to invite words and photographs from you. Share with us photographs of you, your artwork, your words – anything that shows how you Live it! Please see submission guidelines below.
Disclaimer:
All material related to Parkinson’s disease contained in this magazine 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 editorial staff, the Information and Referral Center, the medical director of the Center, The Iowa Chapter of APDA or the APDA.
Reader Submissions
Live it! magazine is intended to be a voice for the Parkinson’s disease community, and we are pleased to consider article, art and photo submissions for future issues from our readers. Please send your submission requests to Iowa Parkinson’s Disease Information and Referral at UnityPoint Health – Des Moines, 1200 Pleasant St. E-524, Des Moines, Iowa 50309, with Live it! on the attention line, or email them to informreferral@apdaiowa.org. Please note: The decision to include reader submissions is at the discretion of the editorial staff. The editorial staff reserves the right to edit or otherwise alter any material submitted. If you would like submission material returned to you, please include a stamped, self-addressed envelope.
upcoming event
Course Information:
Presented by:
Sponsored by: Iowa Chapter of the APDA
David Zid, BS, ACE, APG Director Movement Disorders/Musculoskeletal Wellness, OhioHealth Delay the Disease
Date: February 27-28, 2015 Friday, 12:30-5:00 p.m. Saturday, 8:30 a.m.-4:00 p.m. Location: YMCA Healthy Living Center 12493 University Ave., Clive, IA 50325 Cost: $250 – (before 2/1/15) $300 – (after 2/1/15) $200 – Y Employee (before 2/1/15) $250 – Y Employee(after 2/1/15) Deadline: February 13, 2015 Continuing Education Credit: 10 Continuing Education credits are planned for approval
Leslie Wolf, PT, DPT, NCS Board Certified Neurologic PT, OhioHealth Outpatient Neurologic Rehabilitation Jackie Russell, RN, BSN, CNOR Program Development Coordinator OhioHealth Delay the Disease
For more information and questions: Visit www.apdaiowa.org for a registration form that includes additional course details. LaDona Molander, Healthy Living Coach (515) 953-8474 Email: ladona.molander@dmymca.org Trina Radske-Suchan, PT, CSCS (515) 645-3342 Email: trina.radskesuchan@dmymca.org
This is a Parkinson’s Disease exercise seminar for healthcare professionals and fitness trainers which will provide evidencedbased concepts for planning and implementing a Parkinson’sspecific community exercise class using the Delay the Disease Parkinson’s Fitness Program
Registration Details: 1. Go to www.apdaiowa.org, see “Upcoming Events” in the right side bar and click on the “Delay the Disease Certification and Training” event. 2. Download and fill out the registration form. 3. Please make checks payable to YMCA and send along with registration form to YMCA Healthy Living Center, 12493 University Ave., Clive, IA 50325. 4. If paying with credit card, please call (515) 226-9622 to complete your registration by phone.
David Zid, BS, ACE, APG Director Movement Disorders / Musculoskeletal Wellness OhioHealth Delay the Disease
Exercise groups Leslie Wolf, PT, DPT, NCS Board Certified Neurologic PT OhioHealth Outpatient Neurologic Rehabilitation
Delay the Disease Classes Jackie Russell, RN, BSN, CNOR Video
Algona - Algona Family YMCA, $12 for a 6 week session, Program Development Coordinator
OhioHealth the Disease Contact Jeni CarDelay at jeni@algonaymca.org or (515) 295-7701
Atlantic - Heritage House, free. Contact Jon Jordan at
(712) 243-1850 or JJordan@wesleylife.org for information.
Carroll - Every Thursday at 11 a.m. at St. Anthony’s Hospital in Carroll. Contact Melanie Hundling at (712) 794-5000 or Melissa Schultes at (712) 794-5815. Cedar Rapids - Stonebridge Church, Mondays and Fridays at 10:30 a.m., free, call (319) 431-5332.
Clive - YMCA Healthy Living Center, payment required, call (515) 226-9622 for more information.
Des Moines - Wesley Acres, free, every Wednesday at
Muscatine - Muscatine Community YMCA, contact Anthony Krumbholz at (319)981-3321.
South Sioux City, Nebraska - Norm Waitt Sr. YMCA in South Sioux City, payment required, contact Jacque Perez, Wellness Programs Coordinator, at jperez@nwsymca.org or (402) 404-8439. Spencer - Mondays and Thursdays, Contact the Spencer YMCA for more information at (712) 262-3782. Waterloo - Covenant Wellness Center. Registration is required. Contact Timi Brown, Med-Fit Facilitator, Wheaton Franciscan Healthcare- Iowa, at (319) 272-1755 for more information. West Burlington - Great River Medical Center, Hawkeye
1 p.m., pre-registration is required, call (515) 271-6500 for more information.
Room, 12:30 p.m. every Thursday, instructor Matt Kelle. Call the Great River Medical Center High Performance Center at (319) 768-4112 for more information.
Iowa City - 28 South Linn Street, payment required, for more information or questions please contact instructor Kris Cameron (319) 361-7673 or email renuyourlife@yahoo.com.
Williamsburg - The class meets on Wednesdays from 9am10am for 6 weeks and is FREE. Contact instructor Kris Cameron (319) 361-7673 or email renuyourlife@yahoo.com. Live it!
Winter 2014
3
connect with the chapter
embers: m rd a o B r u o f o We asked some f your favorite o e n o s a w t a h “W ay gifts Christmas/holid r gave?” o d e iv e c re u o y t tha
When our grandchildren were younger we arranged with the local fire department to come for a visit on Thanksgiving weekend. We helped wash/clean a fire truck, saw workings of the truck, and experienced the clothes/equipment that firemen wear. We all were able to climb in and on the truck for a five mile ride. Afterwards we served the firemen a chili lunch in thanks and gratitude for what they do for the community. The next week we delivered a scrapbook to them of our pictures and a thank you letter. – Bill Bruxvoort, Board Director
The best Christmas present I received was last year when a client of mine made a prayer shawl for me in memory of my dad, who had Parkinson’s and passed away on October 18, 2013. – Becky Holmes, Board Director
One of my favorite Christmas memories is when we would fill Christmas stockings for our boys and watch them open them on Christmas morning. We now put up Christmas stockings for our grandchildren. – Ervin Fopma, Board Director
4
Iowa Chapter of the APDA Co-Presidents: John Krumbholz and Jeff Molander Directors: William Bruxvoort, Kris Cameron, Ervin Fopma, Jan Friedel, Denise Harlan, Becky Holmes, Kristin Lowry, Bob Miller, Victoria Miller, Dave McNeil, Rich Mills, LaDona Molander, Marisa Tank and Jennifer Voorhees Past Presidents: Sabrina Moe and Gina Chaves Treasurer: Gayle Fopma
Concert tickets are my favorite gift to give and get! – Marisa Tank, Board Director
My favorite Christmas gift I received was when I was 8 years old. I so wanted the Operation board game. I was pretty good at scoping out the wrapped gifts and trying to figure out what each one was. That year I was fooled because I didn’t think I was going to get Operation. It was pretty high tech back then with batteries and the little clamps (tweezers) that you couldn’t touch to the sides of the body part you were removing or it would buzz at you. My mom still has a picture of me holding the unwrapped Operation game over my head with the biggest smile and surprised look on my face. I thought that would be my ticket to becoming a doctor. – Kris Cameron, Board Director and Secretary
I would have a lot of favorite Christmas memories, but one that comes to mind is how much I would enjoy receiving a new paint-by-number picture. I would use any spare time during Christmas vacation to finish up the picture. Each year they would get more difficult with smaller sections and more colors. This year I was really excited to find a paint-by-number set for our 7 year-old grandson. – Gayle Fopma, Board Director and Treasurer
Knowing how much I loved the Little House on the Prairie books (and have often re-read them), my dad searched for early antique editions. He found them, in great condition, and gave them to me as a complete set. – Kristin Lowry, Board Director
Since LaDona and I are now empty nesters the best gift we could imagine is having all three of our kids home for Christmas. Reed will be home from the Navy in Pensacola, Fla., Ryan home from college in Iowa City, and Krislyn home from teaching in Colorado. Joy to the world indeed! – Jeff Molander, Board Co-President
The best Christmas gift I ever received was getting engaged to my wife. It was 39 years ago and we had just gone through a series of family Christmas parties and people had lots of questions. Even though we had just started dating that fall, it was apparent to the family members around us that this was something special. Even though we had planned nothing of the sort, we sat down that Christmas and decided that the family might be on to something. We were married on Nov. 26th, 1976 and celebrated our 38th wedding anniversary this past November. The family must have been right! – John Krumbholz, Board Co-President
My favorite present I have given is a calendar for my family with pictures from the past and present on each month. This is also my favorite gift to receive and my daughter has been doing this the past two years at Christmas time. I am hoping for another one this year! – LaDona Molander, Board Director
Victoria: My best Christmas present a few years ago was waking up to see a bright blue sky and thick white frost on the trees. It was an unforgettable day! Bob: The best Christmas memories we made were taking our now grown-up kids on a Christmas vacation trip to Las Vegas. – Bob and Victoria Miller, Board Directors
art Victoria Miller Swan, IA
ArtAbility I’ve continued a lifelong love of acting and singing this fall when I played the Mother Superior in Knoxville Community Theater’s production of the Nunsense musical comedy, Nuncrackers. Having Parkinson’s for nearly 13 years doesn’t stop me from participating in community theater or other creative outlets. Memorizing lines and staying creatively active while keeping a positive attitude makes life entertaining.
Victoria on stage as Mother Superior and a sugar plum fairy.
Live it!
Winter 2014
5
feature story
Paying it
Forward
Thank you, Iowa Chapter of the American Parkinson Disease Association (APDA). Thank you for being there when my recently passed mother needed you. About 10 years ago she received the Parkinson’s diagnosis, and that was the start of her journey to learn more, adjust sails and develop the uncomfortable, By Julie M. Curry, pictured yet much-needed habit of above with her mother, Cathy asking for help. That journey paid off in the quality of her life during that last decade. Let me tell you a bit about my mother.
Mom and I gleaned so much information from the Live it! magazines, chapter news, and state and local conferences. She knew how much that information made a difference in her life. When she decided to do advance planning for her funeral, she asked her children to name the Iowa Chapter of the APDA as one of the memorials. Mom was quite pleased to think about how this simple request would help her give back, or as a favorite movie said it: “Pay It Forward.” Thanks to the generosity of friends and family who wanted to express their grief in a way that would help others, the Iowa Chapter of the APDA received a sizeable donation.
In 1971 Cathleen L. Curry found herself a widow at the age of 43 with nine children ranging from ages 2 to 18. When Mom was diagnosed with Parkinson’s in her mid-70s, long after the children were gone and producing lots of grandchildren, she was experienced in life’s contrary hits. As with widowhood, she had a choice on how she would approach it. As her parish priest said at her funeral, “Cathy made the decision to be better, not bitter.” And that is where the Iowa Chapter of APDA comes into the picture.
I would like to share how easy it was to “Pay It Forward” and encourage you to consider how you might do the same. Listing the Iowa Chapter of the APDA as a suggested memorial is one way, either the Iowa Chapter or the national APDA headquarters. You can also consider designating a financial gift amount in your will. This is how my family chose to use the funds:
Mom was a lifelong avid reader, seeking and sharing information that helped her and others accept the hard knocks of life. She joined the Parkinson’s disease support group in Sioux City and attended meetings when she could. As the disease progressed she invited me, her main health care advocate, to learn more about Parkinson’s with her. Having the same information led to many conversations. News about the latest research gave us hope, whether the benefit would fall to Mom or to future generations. I especially liked talking about which ideas she was interested in so I could support her in implementing them. Mom impressed a lot of us with her fundamental ability to accept that she needed to change her lifestyle. She set the pace with one change at a time over those 10 years, and this joint journey strengthened our relationship. A cycle of grieving the losses and challenges, identifying helpful changes, and implementing those changes became a way of life. On reflection, information from the APDA and Mom’s persistence created a life that was both interesting and full of time with loved ones, despite the disease progression. 6
• Annual Iowa Conference DVDs: Our family chose to see that members of her local support group got free copies of last year’s State Conference DVD. Why? Because Mom and her fellow support group members couldn’t travel to them due to the distance. The conference DVDs are a great learning tool. • To the support group: These memorial contributions will enable the Sioux City support group to carry out its educational goals in the next year, something Mom valued a lot. • Research: This is a great way to be a part of the solution and to give hope to persons with Parkinson’s and their families.
donors/acknowledgements October – November 2014
Donations:
APDA also makes it easy to contribute in other ways – you can also donate online at www.apdaiowa.org: • Help the Iowa Chapter ‘Ease the Burden’: Consider asking family to give you a donation rather than a more typical holiday/birthday gift to help the Iowa Chapter of the APDA serve the state of Iowa.
• Become a Member: Encourage family members to join and widen your support team. • Corporate Sponsorships: For companies and businesses this is an opportunity to contribute in a significant way. • PD Walkers at the Des Moines Marathon: Encourage family and friends who like to run/walk to join like-minded volunteers in raising funds. In closing, I would like to thank the Sioux City Parkinson’s Support Group and the Iowa Chapter of the APDA board of directors and staff. Collectively, you gave a home to Mom and me, a village in which to seek and find help as life took an unexpected curve. May you seek and find what you need to create a rich, loving and fulfilling life in the new year.
Complete this form, detach and mail with a check to: Iowa Chapter of the APDA PO Box 507 Waukee, IA 50263
o Mr. o Mrs. o Ms.
In Memory of Patricia Golden Donor Name: Genesis Medical Staff
In Memory:
In Memory of Suzanne Peters Donor Name: Kendall Roberts
In Memory of Jack Hartle Donor Name: Robert J. Barnes Richard and Joyce Delk Stephen and Jil Hetzel Phil and Norma Hildebrand Mark and Sherri Jensen Joanne King Novalee Klein Sue Kolbe Gary and Marlys Kunze John and Mary Miller Lois J. Nelson Leonard and Bernice Shanley Elizabeth Wickman David and Sara Wiener Mildred Wilson Family
In Memory of Earl Rogers Donor Name: Carol L. Flack Paul and Andrea Holst Brenda Kirkpatrick Sylvester and Marcella Marking
In Memory of Cathleen Curry Donor Name: Steven and Leslie Curry
• Iowa Chapter Store online: Purchase helpful resources for yourself or loved ones.
Membership Application/Renewel or visit www.apdaiowa.org
Amanda Royce Hale Neil Kuehnl and Joan McCloskey Julia Shen
In Memory of Lawrence Rissman Donor Name: Bruce and Ellen Nelson, Haley and Ben Nelson
Corporate:
Donations/Sponsorships Bronze level - $1000 Nikkel & Associates, Inc.
Giving Campaigns
Wells Fargo Community Support Campaign Nationwide
Please send your donations to:
• •
Iowa Chapter of the American Parkinson Disease Association, Inc. PO Box 507, Waukee, IA 50263 | www.apdaiowa.org American Parkinson Disease Association, Inc. - National Office, 135 Parkinson Avenue, Staten Island, NY 10305, (800) 223-2732 | www.apdaparkinson.org
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American Parkinson Disease Association Iowa Parkinson Disease Information and Referral Center UnityPoint Health – Des Moines 1200 Pleasant Street, E524 Des Moines, IA 50309
Thank you
for reading Live it! Magazine, and for your support of the Parkinson’s disease community.