Parkinson Disease (PD) is a progressive and long-term disorder with no known cure. It is the fastest-growing neurological disease in the world, with approximately 15,000 people in BC living with PD – a number that is projected to double by 2040.
Almost all of those in the Parkinson’s community are seniors, and half of all those in the community are affected by social isolation, depression, and apathy. Because PD is progressive in nature, it is vital that people with PD are provided with support, education and guidance regarding disease and symptom management, with both physical therapy and medications available between appointments. However, on Vancouver Island, resources and prescribers are limited, which further exacerbates the challenges people with PD experience.
Parkinson Wellness Projects (PWP), located in Victoria, is working to change the quality of life for people living with PD. The non-profit organization is the only one off its kind on Vancouver Island. To date, it has helped more than 600 participants throughout their journey with PD and continues to innovate by creating new programs to address patient and caregiver needs and challenges.
“To help ensure that the needs of individuals affected by Parkinson Disease are properly and thoroughly addressed, it is essential to collaborate with individuals from different disciplines and backgrounds,” says PWP team member Amy Tran. “It is through the formation of these partnerships that has allowed for the creation of resources and supports that are meaningful, effective, and empowering.”
PD negatively impacts the nervous system, causing people living with PD to experience numerous motor and non-motor symptoms. These symptoms can significantly affect one’s quality of life and impact their ability to carry out essential daily activities. PD can also greatly impact family, friends, and especially caregivers, who often share in the burden of the condition.
PWP strives to reduce barriers to wellness by providing specific, evidence-based exercise programs for people with PD that focus on functional movement, balance, strength, endurance and cognition. These programs help PWP’s participants maintain or improve their ability to perform daily tasks and remain independent and active. PWP’s exercise classes also provide opportunities for participants to meet others at similar stages of their Parkinson’s journey, offer advice, and support one another.
PWP also seeks to address challenges accessing treatment for people living with PD.
To manage both physical and mental well-being, people living with PD often rely on several medications and require ongoing contact with the health care system. However, there are wait times of up to 12 months to receive treatment and therapy adjustments, and people with PD can face little to no direction or support through their disease.
One such identified challenge from the community was the lack of available resources on medications used in PD. PWP collaborated with local pharmacists, neurologists, and the BRAIN Team at UBC’s Faculty of Pharmaceutical Sciences in the creation of an online shared informed decision-making tool on medications, a video series on medications, and medication support groups for patients with PD and their caregivers.
In addition, PWP provides a safe space and offers one-on-one assessments, support groups, specialized counselling and education programs. Their accessible and complementary services help participants navigate their emotional and mental challenges as they progress through the disease.
“At PWP we constantly strive to find new ways to help our community members navigate Parkinson’s as they age and their physical and medical needs change,” says team member Delilah Smyth. “Now, thanks to our collaboration with the BRAIN Team at UBC and the development of the Medical Support Groups, our community members will be able to discuss possible changes in their medication needs with peers and professionals in real time. This is very exciting for our whole community!”