Story by Kimberley McNeil
A dedicated team of specialists offers families facing Parkinson’s disease more time as a family and less time as patient and caregiver.
ACT. Together, these three letters mean “to take action,” but also symbolize something much bigger. ACT stands for the Advanced Care Team for Parkinson’s Disease (ACT-PD), an innovative pilot project set to revolutionize Parkinson’s care, research, and advocacy in Calgary and Southern Alberta.
Parkinson’s disease is complex. It affects heart rate, appetite, movement, balance, and mental health. It can put huge strain on relationships, both from the perspective of the person with the disease and their loved ones. A single healthcare professional — no matter how skilled, trained, or empathetic — can’t address every concern related to Parkinson’s. A wraparound team approach is needed. That is exactly what ACT-PD provides.
The ACT-PD team specializes in neurological diseases and conditions (including Parkinson’s, multiple system atrophy, progressive supranuclear palsy, Lewy body dementia, and corticobasal syndrome). A neurologist, a palliative care nurse, a psychologist, a spiritual advisor, a community liaison, and a research assistant work together with a patient’s other healthcare providers to manage a person’s physical, social, mental, and spiritual wellbeing. The result is all-encompassing care for patients and their caregivers.
The Advanced Care Team for Parkinson’s Disease project lead Dr. Veronica Bruno says the goal of the pilot is to prove that a care model of collaborative, compassionate, and quality care works to relieve patient and caregiving suffering, while also reducing ineffective and costly interactions with the healthcare system.
“We expect that over the next two years, the pilot will demonstrate the urgent and growing challenges for Parkinson’s patients in the late stages of the disease and reveal gaps in their access to care,” says Bruno. “Healthcare leaders and policymakers will then be able to use this important information to make changes to the system.”
Marjan Patterson and her mother, Marijke Patterson-Robinson, were fortunate to learn about ACT-PD when Patterson-Robinson moved to a Calgary continuing care acility last year. After sending an inquiry about enrolling, Patterson and her mother met for three hours with the entire ACT-PD team. They then joined the pilot, which would ultimately positively transform their mother-daughter relationship.
“My mom relaxed when she was with Dr. Bruno and the team because she felt she was finally being heard as a person, even through her dementia,” Patterson affirms. “It brought her peace. What it did for me was show me that I wasn’t the reason for her anxiousness and unease. Those things were due to her condition. Being part of ACT taught me how to love my mom through the disease.”
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