By Valerie Graham
Before any more time elapses, I wanted to report the highlights, from my perspective, of the 2nd World Parkinson Congress ("WPC" or "2nd WPC"), which Kate Kelsall and I had the good fortune to attend last fall in Glasgow, Scotland. Given the breadth and depth of the conference, it would be difficult to capture such a grand event in just a few words. Nevertheless, I would like to share with those of you who made this extraordinary opportunity a reality for us, some of the more memorable moments for me from the conference.
The following is a brief recounting of some of the highlights of the week from my perspective
-- the profoundly stirring refrains of bagpipes played by the Royal Burgh of Renfrew Pipe Band which heralded the closing of the Opening Ceremonies at the 2nd WPC;
-- being seated at an elite dinner for partners of the WPC as a guest of the Parkinson Association of the Rockies at the same table with the surviving spouse of the founder of the Parkinson Association in India, who was swathed in an elegant silk sari;
-- listening to the cogent remarks of Dave Iverson at his presentation entitled "Genetics and Me: Patient Perspective" and experiencing an "ah-hah" moment when he suggested that the reason he chose not to have genetic testing was not due to his own personal reluctance to have his genome revealed, but rather due to the impact which such knowledge might potentially have on his family. It occurred to him that should he proceed with testing and some of his family members not wish to know the results, the burden such knowledge would impose on him would be too great to bear. For a discussion of this point, please see Kate's blog at http://katekelsall.typepad.com/my_weblog/2010/10/the-three-iverson-men-share-something-in-common.html.
Mr. Iverson has been a producer, writer and correspondent for public broadcasting for 30 years. Most recently, he was the writer, correspondent and co-producer/director of the February 2009 PBS Frontline documentary "My Father, My Brother and Me," which explored his family’s battle with Parkinson’s Disease. Iverson is based in San Francisco, where he also hosts radio and television programs for public broadcasting, including the Friday edition of Forum on KQED public radio. To view Iverson's PBS documentary, see http://www.pbs.org/wgbh/pages/frontline/parkinsons/view/;
- and while we are an artistic bent, for a general overview of photos taken at the 2nd WPC, please see http://www.flickr.com/search/?q=World+Parkinson+Congress . For my personal photos of Kate and my extracurricular adventures in Scotland, including our lovely final day in Scotland touring the countryside with Joyce and Jim Dalziel, Kate and her husband Tom’s friends and co-workers during the time they lived in Calgary, Alberta, Canada, some 30 years ago, see http://gallery.me.com/dgraham999/100233 ;
-- Mr. William O'Connor of the Glasgow College of Holistic Medicine, who gave me a heavenly massage one afternoon during the conference in the Rest and Regeneration Room while discussing politics with me; and
-- having the opportunity to meet and participate in a workshop conducted by Denver native and zany actress, Lucy Roucis, who also had DBS for Parkinson's. Ms. Roucis, who is a member of the world renown theatrical group PHAMALY (Physically Handicapped and Musical Artists League, Inc.), recently had a cameo role in the Hollywood film "Love and Other Drugs," starring Anne Hathaway and Jake Gyllenhaal.
In addition, during the 2nd WPC, participants were encouraged to view and sign the WPC Global Pledge. If you would like to add your "John Hancock" to this pivotal statement, please click on the following link: http://www.parkinsonspledge.org/.
The 2nd WPC concluded with great fanfare touting the 3rd WPC, which is to be held in Montreal, Quebec, Canada, on October 1 - 4, 2013. To view the press release regarding the next WPC, see http://www.worldpdcongress.org/about/WPC2013_release.cfm.
To view the complete final program from the 2nd WPC, please see http://www.worldpdcongress.org/program/WPC2010FinalProgram2.pdf.
And, last, but certainly not least, appended to this report is the Abstract which Kate and I presented at the 2nd WPC entitled "Role of Patient Support in Shaping Expectations and Decision-Making with Deep Brain Stimulation Surgery," followed by PDF's final press release regarding our attendance at the 2nd WPC.
We will be eternally grateful to you all for allowing us the rare privilege to participate in this seminal conference! Thank you from the bottom of our hearts!
Warmest personal regards,
Co-Founder and Co-Facilitator of the Bionic Brigade, a DBS support group;
DBS Patient and Family Liaison, Volunteer, University of Colorado Hospital;
President, DBS Voices of the Rockies, a Colorado nonprofit corporation;
Congressional Coordinator, 6th Congressional District of Colorado for the Parkinson Action Network;
Clinical Research Liaison for the Parkinson Disease Foundation
For Immediate Release
Contact: Melissa Barry
Phone: (212) 923-4700
Local Parkinson’s Advocates Travel to Scotland for World Parkinson Congress
While both women are well-known advocates in the Parkinson’s community, up until just a few weeks before the WPC, they were not sure they would be able to attend. Due to a series of fortunate events, they were able not only to attend the congress, but also presented a poster about their advocacy efforts and worked with 15 of their fellow advocates from the Parkinson’s Disease Foundation (PDF) to bring news from the WPC back to the US Parkinson’s community.
Ms. Graham, a retired attorney from Centennial and Ms. Kelsall, a retired public accountant from Northglenn, whose education and training includes an MSW and CPA, have both been living with Parkinson’s for well over ten years. Their work focuses on the needs of people, like themselves, who have undergone deep brain stimulation (DBS), a surgical procedure used to treat the disease. Last year, the two attended PDF’s Clinical Research Learning Institute (CRLI), a program that trains people with Parkinson’s to become advocates within the clinical research process. They say that this experience allowed them to continue their work, with a new focus on educating others about clinical trials, and finding ways to include their own voices in the research process – which they did at the WPC.
At the WPC, as scientists presented the latest in Parkinson’s research, Ms. Graham, Ms. Kelsall, and other people with Parkinson’s presented information on the efforts they undertook to further the cause in their communities. The pair’s poster, entitled “Role of Patient Support in Shaping Expectations and Decision Making for DBS Surgery,” focused on the impact that their volunteer work with the DBS support group and the DBS medical team at the University of Colorado Hospital has had on patients considering the surgical procedure, as well as on patients' families. Furthermore, as a means of expanding the volunteer services that they provide to the DBS and PD communities, Ms. Graham and Ms. Kelsall formed a nonprofit corporation, which was accorded federal tax-exempt status shortly before their departure to Scotland.
While Ms. Graham and Ms. Kelsall were initially awarded partial travel scholarships to help cover the cost of attending the WPC, these scholarships did not include airfare. Thanks to a last minute donation from a couple of individuals, as well as from United Airlines, two round trip tickets were provided for the pair, enabling them to arrive in Scotland prior to the commencement of the WPC.
Ms. Graham says that their story is “proof positive that miracles do indeed occur! Needless to say, we owe a profound debt of gratitude to those around us, without whose guidance and support we would never have even considered attending the 2nd WPC, much less submitting an abstract for presentation at the conference.”
PDF Executive Director Robin Elliott says, “PDF is very proud of the work that Kate and Valerie presented at the 2nd World Parkinson Congress in Glasgow, Scotland – a poster that was seen by nearly 3,000 people. They are wonderful examples of the purpose behind PDF’s Clinical Research Learning Institute: to ensure that people with Parkinson’s are empowered to play a role in all aspects of the Parkinson’s community’s work.”
For more information about people from the Parkinson’s community who participated in the WPC, please visit www.pdf.org/en/world_parkinson_reporters .
At the heart of PDF's work is the participation of people with Parkinson's. Whether it is through its People with Parkinson's Advisory Council, which advises PDF on all aspects of its work, or the Clinical Research Learning Institute, which trains people with PD to play a part in the clinical research process - the perspective of people living with Parkinson's ensures that PDF's work is on target and meets the needs of the community.