|Advocates for Parkinson Committee|
Co-chair: Alice Templin, BSc
Alice Templin (Canada) was diagnosed with Parkinson's disease about 10 years ago when she was 50 years old at the time. Alice was just transitioning into a new career, teaching English as a Second Language, so she had to take stock again. Having worked as a physiotherapist for many years, mostly in the area of neuro rehab, she was familiar with PD on a professional level. The journey of living with Parkinson's now became a personal one - for her husband, her son and herself.
Although Alice have been fortunate in that the progression has been slow, the decision to keep her professional life mostly at the volunteer level has been a good one for her. Alice regularly volunteers, and occasionally supplies, in an ESL classroom where the multicultural and multi-linguistic environment is stimulating, challenging, and rewarding.
While Alice feels that Parkinson's does not define who she is, it has definitely provided the context for many of her activities. She has been a Support Group member (called the Young and Active group) for many years now. Also, over the past several years, she has been an active volunteer at Parkinson Society Ottawa, as a member of both the Program Committee and the Planning Committee for PSO's annual Perspectives on Parkinson's Symposium. In addition, Alice has been the lead volunteer in managing the Resource Centre/Library in the PSO office. She has enjoyed perusing research briefs, articles and biographies for the Symposium and reading book synopses for the library, all of which help to keep me aware of what is happening in the world of Parkinson's and keep her hopeful for the future.
A personal highlight for Alice was to walk the 800-kilometer (500-mile) Camino de Santiago with a friend. It was both gratifying and humbling to be able to meet the physical challenge of walking for 40 days along this ancient pilgrimage route in Northern Spain and to raise over $13,000.00 for PSO.
Over the past 10 years so many doors have opened, providing opportunities and challenges encouraging her to do things she never thought she could. So much can be done when we do it in partnership and hope.
Jean Burns (USA) is a former web developer and software trainer. She was diagnosed with Parkinson’s disease in 2003 and soon after became an active Parkinson’s advocate. She has received both the Alan Bonander Humanitarian Award and the Milly Kondracke Award for her service to the Parkinson’s community. Jean speaks to college students and community groups about the importance of participating in clinical trials.
She is human participant #3 in the NIH AAV2-GDNF Gene Therapy clinical trial. Jean is the co-founder of pdplan4life.com (with Sheryl Jedlinski) with Jean as web developer and graphic designer. Jean has recently spoken at an NIH Bioethics Grand Round about the lack of a "Safety Net" in case human volunteers of brain surgery clinical trials are injured during surgery and require long term care. She is working to make this lack of care known to the broader medical community.
Jin Kyoung Choae (South Korea) believed she could control her entire life for 47 years. She married and now has two grown sons. She sometimes asks herself, "Did I forget to thank God because everything seemed easy in life?” She was diagnosed in 2007 with PD and was in a panic and was NOT ready to accept it. But there was no place to hide away from it and without medication she felt she was only a pitiful woman dragging a left leg. She sometimes smiles at the irony now that she wants to grasp her life more than ever since her diagnosis with Parkinson's.She sees that at the other end a door was open for her when surfing the Internet she found a web page, which attracted her interest. It was about the Parkinson’s Disease Foundation’s Quilt Project which was going to be displayed at the WPC 2010. This inspired her to get involved and she felt that at once she had her own purpose in the PD community. The more stitches she put into her quilt piece, the closer she got to her Parkinson's. She stepped into the WPC world with her quilt square and video entry (took 2nd place). At the WPC, she met many PWP friends, caregivers, medical teams, and patient-centered organizations and she now has a greater confidence in herself.
She is now focusing all her thoughts on the Global Parkinson’s Pledge which functions as a great awareness-raising tool of PD in Korea. Jin was a WPC 2013 Ambassador.
Pat Davies (USA) has organized large international conferences for over 35 years. In 1991 she was recruited from her home country, the UK, for a position with the World Bank and the International Monetary Fund in Washington DC, where for 16 years she managed the joint Bank/Fund Annual and Spring Meetings.
Pat retired in 2007, and in 2009 she was diagnosed with Parkinson’s Disease. In 2010 she attended the World Parkinson Congress in Glasgow and was inspired to offer her services to assist. She is now a member of the WPC Steering Committee, and Advocates for Parkinson Committee, and is also Secretary of the Board of the World Parkinson Coalition.
Pat believes that staying as busy as possible is, for her, the best way of dealing with Parkinson’s Disease, and, among other things, she is very involved in working with homeless people in Washington DC. She is currently President of the Board of Georgetown Ministry Center, a day center for the homeless which is open 365 days a year and provides shower and laundry facilities, computers and medical and psychiatric help, as well as food and other kinds of support. She also helps to organize a winter shelter for the homeless, as well as a year-round Saturday night supper program.
Pat is a PDF Parkinson’s Research Advocate, and a member of a Parkinson’s support group. She enjoys working with the newly diagnosed, as well as people with Parkinson’s who live alone.
Sonia Gutierrez (Switzerland) is from Costa Rica and currently living in Switzerland with her husband, Enrique. They have three children, Caroline, Sofia, and Enrique. Sonia is a biologist and used to work in biotechnology and also cultivated edible mushrooms. As a nature lover she enjoys being outdoors. Sonia felt very honored and happy to contribute to the next WPC to be held in Portland. The previous WPC in Montreal was an excellent and positive experience in every sense. When she learned about WPC, she decided to participate and also to get involved. Her daughter Sofía produced a video “Planting Hope” in which, as an analogy, I planted some tulips –one of her favourite flowers- which after some months of tender and loving care, bloomed to the joy of family and friends. But, overall, the production of the video allowed Sonia to spend precious moments with her daughter and also to learn about how her daughter is copying with her Parkinson's.
The WPC in Montreal was a great opportunity to learn about the latest scientific advances in Parkinson's. However, for Sonia, the most important part was to feel the human dimension of this Congress. WPC was a marvelous opportunity to live and feel so much solidarity, human love, positivism, heroism and the possibility to learn so much from really great human beings. The WPC changed her vision of how to see and live her life. Sonia belongs to a group called Jeunes Parkinsonniens de La Cote, based in the Region of Lake Leman, Switzerland. On April 11, 2012 they organized a conference on Living with Parkinson´s and how to apply the new recommendations of EPDA in Switzerland, among other things.
It all started with a tremor in Sonia's left hand and a weakness in the pinky finger. She felt exhausted and did not improve, despite having visited several doctors. She went to Costa Rica to see the family doctor. After he saw the tremor he referred her to a neurologist. The neurologist, a close family friend, after conducting several tests, prescribed Levodopa for fifteen days to see the reaction. The change Sonia felt was incredible, she felt well again, with energy, the tremor was gone. When she returned her neurologist told her it was Parkinson´s. He was surprised by my reaction as Sonia accepted the diagnosis "tranquila" (at ease). Sonia told her neurologist that knowing what was her problem was allowed her to be able to handle it. Since she started with the medicines and therapy she feels much better, it has been a very big change. To Sonia's family and friends it was more difficult to receive the news, perhaps because they did not understand that her "neighbor Parki" and her were going to get along well.
Sonia explains "that is not the end of the world. That life is continuous and we have to live it well. Creativity allows us to solve the challenges we encounter everyday. We develop a big sensitivity to everything around us. The relationships with our loved ones, friends and other people, develop a special meaning. We have more love to share, we see the beauty of the world with different eyes. A beauty that goes beyond the ordinary, the beauty of the human beings that we know and new ones that we meet and have the opportunity to learn from them, to admire them. They are great fighters, with hearts full of love, hope and joy. Parkinson makes us special; it is a challenge that gives us the opportunity to give the best of ourselves.I have the best medicine in the world: the love of God, my dear family and friends. I am thankful for them because with their constant love and support life continues being great!! Let's enjoy it!!"
Tim Hague Sr. (Canada) Winner of The Amazing Race Canada & Parkinson's Activist. Tim overcame the odds when he went from a diagnosis of Parkinson’s disease to—just three years later—becoming the inaugural winner of CTV’s The Amazing Race Canada. Tim’s message of strength and courage leaves audiences motivated to meet life’s challenges and do more than they ever thought they could.
Tim and his son, Tim Hague Jr., put their now-trademark perseverance to work while participating as a duo on The Amazing Race Canada. When the pair finally came out on top in the last competition of the race, they had never before won any stages and in fact had nearly been eliminated from the show twice. Despite the odds, “The Tims” as viewers affectionately dubbed them, kept their focus on overcoming one obstacle at a time to take the championship, a message of hope that Tim draws on in his talks.
As a Registered Nurse and Professional Speaker, Tim is active in the promotion of healthy, balanced lifestyles, and deeply involved in the promotion of Parkinson’s issues and building awareness around Young Onset Parkinson’s Disease working closely with groups such as the Parkinson Society and the Reh-Fit Centre.
Anders Leines (Norway) has been a cameraman/editor/producer in television for 22 years, most of them at Norwegian Broadcasting Corporation (NRK), working with news, documentaries and short stories. He photographed ”A Journey in the History of Water” (Grand Prix at the 17th Environmental Film Festival and the best-selling Norwegian documentary series to date). For the last eight years he has worked with ”Puls”, a popular weekly health and lifestyle program with a strong focus on stories about ordinary people´s challenges. Since diagnosis he now is a video journalist at the show. He loves his job and hopes to find one way or another to change the course of his PD. Anders was medical electronics engineer at Siemens before he moved on to study TV production at Hofstra University, New York. He now lives in Oslo with his wife Annika and their children Isabel (16) and Leo (13).
Since diagnosis he has made several films about PD (www.livshygiene.no), one of which aired 2014 on NRK and reached an audience of 700 000 people. His latest project is «This is Parkinsons/Dette er parkinson» a photo exhibition portraying young onset PD with the purpose of changing the image of the disease. (www.facebook.com/thisisparkinsons)
Timo Montonen (Finland) was born 1957 in Helsinki, the capital of Finland, and there he has lived almost all his life. He has been married twice; he has two daughters and two granddaughters. So, he’s used to live with females and also work with them in educational field. He is working as a planning officer at the University of Helsinki in a writing program. Timo is also an author of eight books. His latest book, published by the Finnish Parkinson Association (FPA) 2014, is titled (in English) “I have Parkinson’s and I’m proud of it”. There is a certain idea in that provocative title, or, should one say, several ideas…
Timo was diagnosed 2005 at the age of 48. Since 2007 he has done voluntary work in the Parkinson community of Finland, locally, nationally and in internet, and also represented FPA at a workshop and annual meeting of European Parkinson’s Disease Association (EPDA) in London 2011 and at the 3rd World Parkinson Congress (WPC) in Montreal 2013.
The way of this Parkinson’s activist has, as we see, gone from FPA via EPDA to WPC! What’s next? As a writer Timo has already imagined intergalactic Parkinson activity. Is there Parkinson’s disease in other parts of the universe? We don’t know; so it’s better to concentrate on those challenges we have to face in our everyday life. Timo is especially interested in the wellbeing of people with Parkinson’s at working age and the empowering force of writing blog, diary, poems, short stories and novels, not to forget other arts as dancing, singing, acting and painting.
Timo is not only hyper active and multi-talented (in his own mind), he is also a man of sitcom and improvisation. So, be ready. You never know what plans he has got for you. Be in Portland, Oregon (USA) at WPC 2016 and see in your own eyes and hear with your own ears, not to mention the friendly touch of creative hand.
Read this article spotlighting Timo's life as a Parkie in Finnish magazine Seura (Printed in Finnish)
Linda Morgan (USA) was diagnosed with Parkinson’s disease more than eight years ago in 2005. Within 35 days of diagnosis she had researched and found the first clinical trial in which she was to participate. Since then she has participated over 25 trials varying from a blood draw and exam to a week long inpatient trial at NIH. “By participating I feel that I have helped the Parkinson’s community in my own small way. In addition, it has given me a sense of empowerment, a sense of ‘control’ over this uncontrollable, progressive, and debilitating disease,” states Linda. She is a graduate of the Parkinson’s disease Foundation’s inaugural Learning Institute of 2008, now PAIR.
As an advocate for the participation in clinical trials she has spoken on the subject at regional and national as well as local Parkinson’s disease venues. On the same subject, Linda has been quoted in Time Magazine as well as the Wall Street Journal. She has served on the Parkinson’s Association of the Carolinas Board of Directors, on the program committee of the World Parkinson Congress held in Montreal and is actively involved in several non-profit organizations. Currently, she is on the Program Committee of the Parkinson’s Disease Southern Summit 2014 to be held in November of 2014 in Upstate SC; a member of the Persons with Parkinson’s Advisory Committee (PPAC) for the Parkinson’s Disease Foundation; on the Scientific Review committee of PSG (Parkinson’s Study Group); trained as an FDA Patient Representative; active with PCORI including the role of Reviewer; and serving on the Patient Advocacy Group of WPC 2016. Linda is now speaking out about the patient involvement in the entire Clinical Trial Process not only as a ‘subject’.
Linda Morgan is a registered pharmacist currently working as a Remote Pharmacist covering 4 hospitals in Western NC. She graduated with a BS in Pharmacy from UNC-Chapel Hill and later earned an MBA from Western Carolina University.
Karin Spilberg (Australia) was diagnosed with Parkinson’s 14 years ago. Since diagnosis she has immersed herself in the national and international Parkinson’s community to learn more about the condition and better understand the needs of the Parkinson’s community. Along her journey, she has made significant contributions to the Parkinson’s community. She is a regular blogger, sharing her knowledge and experience online; she founded Young @ Park, a support group for people living with early onset Parkinson’s; raised thousands of dollars through fundraising activities to support services and research; acted as a media ambassador for Parkinson’s raising awareness through numerous media interviews and appearances; attended national and international conferences and is an active advocate for the Parkinson’s community; and is the 2013 winner of the Sir Zelman Cowen Award. Karyn attended the 1st World Parkinson Congress in Washington, DC. She is very excited to attend and be involved in the WPC 2016.
Margaret Turner & Don Turner (Canada): Don and Marg were jointly asked to join the Advocacy for Parkinsons Committee for the 2016 Congress. They do most things together; so it seemed natural since they are both in the fight against Parkinsons just as they have been since that day when Marg was diagnosed with Idiopathic Parkinsons a little over 20 years ago when she was 58 years old. Don is her very loving and kind husband and partner.
Don and Marg both took early retirement on the same day in November, 1991: Don from a position in the Accounting department of Canadian Pacific Railway, and Marg as Branch Administrator for a subsidiary of Canada Life Assurance. They hoped to travel and spend more time with their growing family which now numbers three children, nine grandchildren and three great grandchildren, who all give total support in their battle against Parkinsons.
Although Marg had symptoms several years prior to diagnosis, she was completely clueless about Parkinsons right up until that four-word statement: “You have Parkinson’s Disease”. This diagnosis certainly sent Don and Marg on a search for everything we could find in print which, in a time before the tremendous popularity and ownership of personal computers, was not much at all. However they did visit the Parkinson office for Toronto and found the staff there very helpful. With every intention of remaining active, Marg and Don have volunteered in a great variety of opportunities to spread the word about Parkinsons.
They facilitated a Support Group in our area for over ten years; have helped to promote the annual Parkinsons Awareness month in April, mainly by assisting in sales of tulips; supported the “Pitch in for Parkinsons” annual fund raiser run by a remarkable couple for over 20 years; joined the Parkinson choir “Voices of Hope” at inception; given Parkinson talks to community groups and in retirement homes; and before the system was automated, helped by stuffing and sealing Parkinson mailings. Marg and Don have met many fine people along the way whom they may never have become acquainted with if not for PD. Don and Marg Turner were each the recipient of the Queen Elizabeth Diamond Jubilee award in recognition of their contribution to volunteerism.
However It has not been a life dominated by Parkinsons, they still managed to volunteer at our local elementary school for nearly 15 years, and at a local Conservation area for 20+ years.
Don has arranged three walks in and around Toronto with the longest to date being a 130 km walk from Oshawa, east of Toronto, to Hamilton to the west. These walks were undertaken primarily to raise awareness of the upcoming Parkinson Superwalk to take place in September of each year following the conclusion of our three walks.
So it seemed natural for Don to plan another walk to promote World Parkinson Congress in 2016 in Portland, Oregon. But 4,361 km from Toronto to Portland, Oregon by the 19th of September in 2016 – even a virtual walk - well, we’ll see!
Don and Marg have always been outdoors people with a special love of hiking and canoeing. They don’t manage to do as much as we would like but still keep our hand in.
Marilyn Veomett (USA) was shocked by her diagnosis of Parkinson’s in 1997 at the age of 50. She was totally unprepared for the news and angry with the doctors who pronounced it. She was frightened, unbelieving, and confused. She was fit and led an active life. She saw herself as a master multi-tasker with energy to challenge the Energizer bunny. She couldn’t possibly have this disease that she believed occurred only in the feeble elderly.
She set out to learn everything she could about Parkinson's and its management through medication, exercise, diet, and attitude, yet continued to live at her usual frantic pace for almost 10 more years.
At 60, she retired and began her journey of acceptance. In time, she learned that Parkinsons, despite being an uninvited and obnoxious daily companion, is also a great teacher. These are some of the lessons she is learning from Parkinson's:
- Life is unpredictable; the present is all we can count on, so live it well.
- Be aware of all the good things in your life and be grateful for each and every one.- Appreciate your camaraderie with all those who live with any type of loss or limitation (isn’t that everyone?).- Living well with Parkinson's is hard, but possible and worth the effort.
- Cultivate humility, simplify your life as much as possible, enlist the help of caring and skilled professionals and nurture relationships with family and friends.
Marilyn has been married to George since 1970. They have 4 children, and 5 grandchildren. She is a lifelong learner and teacher, and has advanced degrees in psychology and developmental biology.
Marilyn had a great time at the 3rd WPC in Montreal and looks forward to welcoming the Parkinson community to the 4th WPC in Portland, OR where she and her husband have lived since 2007.
George Veomett (USA) was born and raised in Rochester NY, receiving a Bachelor’s degree in biology from the University of Rochester (1966), he received his Ph.D from the University of Colorado (1972), doing both graduate and post-graduate work in the Dept of Molecular, Cellular and Developmental Biology. Most of George's professional life was spent at the University of Nebraska-Lincoln in the School of Biological Sciences. He taught primarily developmental and cellular biology and conducted research on cellular growth factors. He served in several different administrative capacities, from Vice Director of the School of Biological Sciences to being President of the Nebraska Academy of Sciences. George has also been the fellow traveler of Marilyn in her and their life with Parkinson’s Disease for more than 15 years. Through the years they have attended numerous conferences, workshops, and special presentations, they have been a part of and have led support groups, and we have been the scientific liaisons for a local PD funding group. George and Marilyn especially enjoyed and appreciated the 3rd WPC and are honored to work for the 4th.