John and Carol Phillips, a couple married for over 54 years, are currently facing a major challenge as Carol battles Parkinson’s disease. The costs associated with this complex disease are expected to reach $4.4 billion in Canada by 2034, putting a significant financial strain on many patients and caregivers like the Phillips. Carol was diagnosed at the age of 59 and is currently 77, in the late stages of the disease. This has not only affected her physical abilities but has also impacted their financial stability, with John having to deplete their savings and sell their family home to cover expenses not covered by the Ontario health system.
John describes the progression of Carol’s disease as heartbreaking, both financially and emotionally. He recalls Carol’s previous career as a school principal and curriculum writer, highlighting her sharp mind before the disease took its toll. Her health deteriorated rapidly five years ago during a visit from their daughter when she experienced severe hallucinations and other symptoms. Carol’s condition has since worsened, leading to severe dementia, hallucinations, and a loss of motor skills, making her almost entirely dependent on a caregiver and requiring long-term care in a facility, which comes with high monthly costs.
The financial burden of Parkinson’s disease is a widespread issue in Canada, with the economic toll projected to reach $4.4 billion. Individuals living with Parkinson’s already spend approximately $1.4 billion annually, with long-term care costs averaging over $43,000 per year. Karen Lee, CEO of Parkinson Canada, stresses that the financial strain is just one aspect of the challenges faced by individuals and caregivers, emphasizing the need for more support and affordable treatments to help people with Parkinson’s live well.
Parkinson’s disease currently has no known cure, and patients rely on services and medication to manage symptoms. The average yearly expenses for people with Parkinson’s include costs for nurses, support workers, home modifications, and medications, which can add up significantly. Many caregivers are family members who have to leave their jobs to care for their loved ones, further increasing financial strain. John has experienced the shortcomings of the health system firsthand, noting the quality of staff and the challenges faced by caregivers in providing adequate care for patients with Parkinson’s.
The Phillips’ story mirrors the struggles experienced by many Canadian families dealing with the costs of chronic illnesses like Parkinson’s. Parkinson Canada stresses the importance of policymakers understanding the financial impact of the disease on individuals, families, and the healthcare system to implement affordable treatments and supportive policies. The goal is to make these accessible to the Parkinson’s community, addressing the high costs and challenges that patients and caregivers face on a daily basis.
