TORONTO /CNW/ – Whether you are newly diagnosed with Parkinson’s or the care partner to someone in their third decade of living with this life-changing disease, timely information, care and treatments makes the difference between living well and experiencing hardship. This April, during Parkinson Awareness Month, Parkinson Canada wants Canadians to know that they can now access tools and resources to help manage their life with Parkinson’s. In particular, the focus is on tools and tips to facilitate communication with members of their care team in various healthcare settings.
In an Ipsos study reported last year, one in four caregivers is working in a full-time job while caring for a partner with Parkinson’s. Three in four are female and one in four is over 75 years old. Additionally, 2 out of 10 respondents waited more than one year for a diagnosis; 3 in 5 came to Parkinson Canada or one of its support groups, for additional information.
For Penny and Vernon Eccles of Cornwall, Ontario, a resource like Managing My Parkinson’s Disease in a Healthcare Setting gives them the confidence to know they are well prepared for life events. Penny has read the booklet cover to cover, picking up tips along the way. Her husband Vernon will be facing three hours of surgery in the coming weeks.
“We’ve used several of the checklists provided by Parkinson Canada to prepare for movement disorder specialist visits and other medical appointments. I feel better prepared to advocate for Vernon,” says Penny, adding that she spends about the equivalent of a full day each week planning for and attending appointments with Vernon.
Penny has been coordinating the exchange of health information with Vernon’s team of health professionals that includes a surgeon, as well as his cardiologist, anesthesiologist, family doctor, pharmacist, physiotherapist, chiropodist, acupuncturist, occupational therapist, speech-language pathologist, dentist, eye doctor, nurse specialist, and movement disorder specialist. She has been there as a care partner every step of the way since Vernon’s diagnosis almost seven years ago.
“It’s important that people get diagnosed as early as possible. Early intervention can make a big difference. If there is a delay in starting effective treatment, a person may need to stop work or other activities important to their quality of life,” says Heather Rigby, a movement disorders specialist at the Queen Elizabeth II Health Sciences Centre in Halifax. “That is unfortunate. There are many people with Parkinson’s disease in my practice that I wish I had seen earlier,” she says.
Rigby notes that resources are often limited, and it can be very challenging to connect patients with the range of specialists that could be part of a person’s care team. She believes patients would find the information contained in the new Parkinson Canada booklet very helpful.
Throughout 2019, Parkinson Canada will launch the ACT on Time™ campaign, with practical tools and information for those diagnosed, their care partners, and the health professionals they will interact with, for planned and unplanned treatments in a variety of health settings including hospitals and long-term care homes. Contact [email protected] or call 1-800-565-3000 to find out more and to request materials.
About Parkinson Canada
Parkinson Canada is the definitive voice of Canadians living with Parkinson’s disease, since 1965. From diagnosis to discovery, Parkinson Canada provides education and services to support people with Parkinson’s, their families, and healthcare teams; online, by telephone and in person. Parkinson Canada advocates with federal, provincial and territorial governments on issues that matter to the Parkinson’s community in Canada.
The Parkinson Canada Research Program funds discovery research to improve our understanding of Parkinson’s disease, related disorders, and the impact these disorders have on society. Investigators and clinicians focus on better treatments and one day, to find a cure. Since 1981, Parkinson Canada has invested close to $29 million in 552 research projects across Canada. Parkinson Canada is an Imagine Canada accredited organization. Visit online at www.parkinson.ca.
SOURCE Parkinson Canada