April is Parkinson’s Awareness Month. This year, Parkinson Society British Columbia (PSBC) wants to raise awareness that Parkinson’s disease (PD) affects the whole family.
When someone in a family has Parkinson’s, family members must learn how to live with the disease, too.
Whether it’s a wife helping her husband to manage his medications, an adult daughter arranging long-term care for her aging mother who has Parkinson’s, or a child who must learn to accept his father’s awkward movements, Parkinson’s disease is a family affair.
Jeanine and Meagan know what it’s like to live with Parkinson’s disease. At 45, their father was diagnosed with PD. Jeanine was in Grade 4; Meagan was in Grade 2.
Although life has been a challenge for this Delta family, both young women have found ways to adapt to their family situation.
“When I got upset, I would start researching Parkinson’s,” says Jeanine. “When I learned my dad was not going to die from it, I realized life wasn’t over. It was just going to be different.”
Today, Jeanine, a first-year university student, is considering neurology as a profession. Meagan, 16, is an honour roll student who keeps busy with horseback riding, playing soccer, walking dogs and teaching piano.
“I try not to think about the disease too much,” says Meagan. “It’s a part of our life and there’s nothing we can do about it.”
To involve their father with their school work, both daughters depend on their dad to proofread their essays.
“He enjoys knowing what we’re learning,” says Meagan. “But he’s a tough marker!”
Parkinson’s disease is a chronic degenerative neurological disease caused by a loss of dopamine in the brain. It affects more than 11,000 British Columbians.
Although a person with Parkinson’s is often recognized for his or her lack of motor control, non-motor symptoms include depression, loss of sense of smell, sleep disturbances and cognitive changes.
The average age of onset is 60, but it can affect people as young as 30 or 40, like Jeanine and Meagan’s father.
The Parkinson Society British Columbia helps individuals and families who are affected by Parkinson’s disease.
“Every year we receive hundreds of enquiries from people across the province,” says Diane Robinson, PSBC’s CEO. “We are here to help them learn to live with the disease. We connect them to support groups, host education events, and often refer them to other resources.”
The Parkinson Society British Columbia was established in 1969, PSBC is a not-for-profit registered charity that exists to address the personal and social consequences of Parkinson’s disease through education, outreach, scientific research, advocacy and public awareness.