Everyday Heroes Raise Funds and Offer Hope and Support for Canadians Through Parkinson Canada SuperWalk
TORONTO, ON, August 12, 2015 - On September 12th and 13th, more than 14,000 everyday heroes in more than 100 communities across the country will display their superpowers in the 25th annual Parkinson Canada SuperWalk. Each year, the event raises awareness and money to provide valuable education, resources and supportive services for people living with Parkinson's disease and their families. Proceeds are also invested in vital research, such as the work of Kim Jameson, a PhD candidate at the University of British Columbia.
Jameson is tackling one of the toughest aspects of living with a chronic brain disease. She will interview people with Parkinson's and their families, as well as a variety of multi-disciplinary health professionals about end-of-life care planning. She will develop a guide for health care professionals about engaging patients and caregivers about their values, wishes and beliefs surrounding medical interventions, pain management, and artificial nutrition and hydration, as well as other end-of-life care issues. Her work is being funded by Parkinson Society Canada's National Research Program and the Canadian Institutes of Health Research.
"I want to find out what the barriers are that keep doctors from raising end-of-life care planning with their patients," explains Jameson. "Having these conversations in advance can really help families and patients relieve the stress and uncertainty they may have. And, the onus should not be on the person with Parkinson's and their family members to begin these discussions."
Dr. Philip Hébert agrees. Hébert, 63, is a person living with Parkinson's and a now retired family physician who has taught professional ethics for more than 25 years. He was diagnosed when he was 44, has recently undergone successful deep brain stimulation (DBS) surgery and believes that while end-of-life decisions ultimately rest with the patient, physicians have an obligation to inform their patients of options, help them determine their wishes and then adhere to them.
"Together, the physician and the patient need to make very specific decisions. For instance, the person with Parkinson's may not want to have any medical interventions to help them breathe, but does that mean they wouldn't want help temporarily to combat pneumonia? These are the kinds of decisions that need to be communicated in advance," he says.
The timing of such conversations can also be difficult to determine. Hébert thinks they should begin when a physician thinks a patient could die within a year. "Often, this is after a serious fall, or the early signs of dementia could warrant conversations about care desires, directly with the patient and involve the caregivers or family members, so they too are aware of the patient's wishes."
Jameson also points out that the timing of end-of-life care discussions can be particularly difficult when dealing with people living with Parkinson's because of the wide variability in the progression of the disease from one person to the next. "And of course, everyone needs to negotiate the balance between hope and possible future scenarios and to act upon the wishes of the patient first." After 20 years of living with Parkinson's, Dr. Hébert is passionate about his work and his life. He has served on Parkinson Society Canada's Board of Directors for the last five years and plans to participate in Parkinson Canada SuperWalk again on September 13. Join Dr. Hébert and the thousands of other everyday heroes across Canada who volunteer and participate in Parkinson Canada SuperWalk. Together, we hope to raise $3 million to continue to support Canadians living with Parkinson's and their families and continue the quest for a cure.
To donate, or to find a walk and register, visit us online at www.parkinsonsuperwalk.ca. Follow Parkinson Canada SuperWalk on Facebook or on Twitter @SuperWalk. For more about Parkinson's disease and to find resources in your community, visit www.parkinson.ca or call 1-800-565-3000.
About Parkinson Canada SuperWalk
Since 1990, more than $31 million has been raised so far by Parkinson Canada SuperWalk and invested in communities across Canada to provide evidence-based education resources, advocacy and support services. Parkinson Canada SuperWalk proceeds also support Parkinson Society Canada’s National Research Program. Since 1981, more than $24 million has been invested in over 450 projects to identify causes, improve treatments and to one day find a cure.
About Parkinson’s disease
Parkinson’s is a degenerative neurological disease for which there is no cure. More than 100,000 Canadians and over six million people worldwide have Parkinson’s. By 2031, the Parkinson’s population in Canada is expected to double. Since 1965, Parkinson Society Canada, along with a network of partners, chapters and support groups, has provided support, education, advocacy and funding for research.
For more information, please contact:
Kelly Mills, Parkinson Society Canada
1-800-565-3000 ext. 3469, 416-227-9700, ext. 3469; kelly.mills@parkinson.ca
