parkinson’s disease in canada: stats, impact and resources

the disease is lifelong and progressive, meaning symptoms slowly worsen over time at a different rate for each person. symptoms will also vary, so living with parkinson’s over a lifetime is unique to the individual. canadian actor michael j. fox has shared his own journey with the public and has been an outspoken advocate for research and support . fox was diagnosed with parkinson’s in 1991 at age 29, and his poignant story is documented in the 2023 film still: a michael j. fox movie. other notable figures who have brought awareness to parkinson’s include legendary boxer muhammad ali and former u.s. president george w. bush.

as for the why, getting parkinson’s could simply come down to bad luck. researchers have identified specific genetic changes that can cause the disease, so you are at higher risk if someone in your family is affected by parkinson’s disease. however, according to johns hopkins medicine , experts now say the disease results from a combination of genetic and environmental factors, like exposure to toxins or pesticides in the air we breathe and the food we consume.

researchers in the u.k. have also discovered that hearing loss and epilepsy are early features of parkinson’s , calling for the need for primary care practitioners to be aware of these factors and understand how early the symptoms of parkinson’s can appear so that patients can get a timely diagnosis and doctors can act early to help manage the condition.

parkinson’s disease stats in canada

while parkinson’s is on the rise worldwide, canada has the highest rates of new cases per year – which is concerning for the medical community and the public. “parkinson’s is what we call a neurodegenerative disorder in that brain cells are damaged and are dying before you’d normally lose them with age. age is the most important risk factor for parkinson’s disease and a series of other neurodegenerative disorders,” says dr. anthony lang, a neurologist and senior scientist at the university health network’s krembil brain institute in toronto , the lily safra chair in movement disorders and a professor at the university of toronto. he is a world-renowned expert in parkinson’s, the second most common neurodegenerative disorder next to alzheimer’s.

the public health agency of canada reports statistics on parkinson’s with data from the canadian chronic disease surveillance system, the most recent covering 2000 to 2016, and released as the 2018 edition. parkinson canada , the national charity that funds research and provides education and support services, confirms the prevalence rates are growing:

• more than 100,000 people in canada are living with parkinson’s, with an estimated 30 people diagnosed every day. that number is expected to reach 50 new diagnoses per day within ten years.
• more than 11,000 canadians are diagnosed with parkinson’s each year.
• canada has one of the highest prevalence rates of parkinson’s in the world.
• canada has one of the highest rates of new cases of parkinson’s per year.
• about one in every 184 canadians over 40 lives with parkinson’s.

impact of parkinson’s disease on canadian society

while there’s no cure, the goal of parkinson’s treatment is to minimize symptoms so people can carry on with daily life and work. and it’s the non-motor parkinson’s symptoms that are reported as having the most negative impact on quality of life, including changes in cognition and memory, fatigue, sleep disturbances, anxiety and depression, says parkinson canada .

• nearly 75 per cent of survey respondents pay a portion of exercise class expenses out of pocket
• about 44 per cent pay a portion of physiotherapy costs out of pocket
• almost 35 per cent pay a portion of medication expenses out of pocket.

a collaborative report by public health agencies in canada, mapping connections: an understanding of neurological conditions in canada , looked at a number of care issues, including the impact of neurological conditions on families, especially when family members become caregivers. the report noted that care partner distress doubles when caring for someone living with a neurological condition. the distress, however, is even greater if the condition is accompanied by cognitive impairment, as is often the case with parkinson’s.

resources and support for parkinson’s disease in canada

• parkinson canada
• parkinson’s foundation

getting informed and connecting with peers for support can be life-changing for people with parkinson’s and their families. parkinson canada has chapters and support groups across canada to offer a safe environment, both in-person and virtual, to talk about experiences and help improve a person’s ability to cope with the challenges of having parkinson’s disease.

dancing with parkinson’s canada offers free online and in-person classes to bring the benefits of movement and social connection to people living with parkinson’s and seniors, taught by specially trained instructors. a program review in partnership with the evaluation centre for complex health interventions at the university of toronto showed that the organization’s free virtual daily dance classes are both physically and emotionally beneficial, boosting energy levels and mobility, brain health and cognition, and confidence while reducing feelings of depression.

parkinson’s foundation, based in the u.s., has a global care network to connect people to centres of excellence which have a specialized team of neurologists, movement disorder specialists, physical and occupational therapists, mental health professionals and others who work with current medications, therapies and research. each centre has to meet rigorous criteria for care, professional training, clinical research, community education and outreach. in canada, the following are designated centres of excellence:

• mcgill parkinson program
• university of calgary
• university of alberta
• pacific parkinson’s research centre, university of british columbia
• toronto western hospital movement disorders clinic at the university health network’s krembil brain institute

the future of parkinson’s disease in canada

in a recent article in lancet neurology , his team outlines a biologically-based model for classifying parkinson’s called synneurge, or s-n-g, to emphasize the interactions between three biological factors that contribute to the disease: pathologic alpha-synuclein, or α-synuclein, in the brain (s), evidence of neurodegeneration (n), and gene variants that cause or predispose a person to the disease (g). the model reflects the biological complexity and the many different ways the disease affects patients. the aim is to help researchers identify subgroups of patients with specific biological markers and distinct disease processes and develop therapies that can modify or stop the disease progression.