Tony Wade sits on the edge of his leather recliner, his head and shoulders bent towards the dog at his feet.
Sydney, an international champion spaniel, is old and doesn’t often listen to his master, Wade says, struggling to get his own body to obey.
It’s been eight years since he was diagnosed with Parkinson’s disease.
“Dinner parties become a problem because quite often you get a swallowing problem with Parkinson’s and if you choke on peoples’ cooking, it’s not terribly good,” he says.
The 64-year-old United Kingdom import will admit to getting “a bit black,” when his medication doesn’t control his symptoms, but Wade rarely forgets to punctuate each of his comments with a joke. This holds true even as he outlines the various ways in which Parkinson’s increases the risk of social isolation.
“The other thing I noticed – if I fall asleep, don’t worry – it is (just) fatigue,” he says.
Uncertainty around when medications will work and when they’ll wear off, the inability to drive and hindered communication through loss of facial expressions can add up to loneliness for those with the disease. That’s where the Victoria Epilepsy and Parkinson’s Centre comes in.
Since moving to Victoria in 2006, the ex-strategic planner for the United Nations has transitioned from his role as a volunteer on the Parkinson’s centre’s board of directors to a client.
The centre received a $10,650-grant last month from the American Home Instead Senior Care franchise, which allowed the hire of a part-time outreach worker to keep connected with some of its 650 clients with Parkinson’s.
“People tend to get more and more isolated as the condition progresses,” says Catriona Johnson, executive director of the centre. “Then, when we do hear from them, it is often when they’re in absolute crisis and they don’t have enough supports in place.”
With help from his wife, outings in a taxi and regular exercise classes, Wade isn’t a part of the most at-risk demographic. Still, he relies on the centre to offer what he calls “a holistic approach” to treatment. Through support groups and information available on site, newly diagnosed clients are able to connect with a network of medical resources and social contacts.
The centre relies on a patchwork of grants throughout the year to run individual programs, with The United Way of Greater Victoria as its biggest funder.
Wade makes clear that his positive attitude, despite lost time gardening or woodworking, and his periodic falls – he fell in his office and cracked two ribs recently – is something he shares with a surprising number of clients.
“It’s said not to be a life-threatening disease, because it, itself, will not kill you, but it does in a way, because something you have to do doesn’t work any more,” Wade says, later adding: “If you don’t have somewhere like VEPC to go to, you don’t actually know where to start.”
To learn more about the Victoria Epilepsy and Parkinson’s Centre, located at the Garth Homer Centre, 813 Darwin Ave., visit www.vepc.bc.ca or call 250-475-6677.
• Parkinson’s is caused by the breaking down of the nerve cells in the brain responsible for making the chemical dopamine, which communicates with the areas of the brain associated with movement. With a decrease in dopamine comes a decreased ability to control movement.
• There is no known cause or cure for the disease, but medications are available to control the symptoms, which include tremors, stiff muscles, slow movement and problems with balance or walking.
• It’s more common in men than women.
• Symptoms of Parkinson’s usually appear in people between 50 and 60 years of age.
• Five to 10 per cent of cases are early-onset (diagnosed between the age of 30 and 40).
• 1,200 people in Greater Victoria have Parkinson’s.
• 40 per cent of people with Parkinson’s are clinically depressed.
• 6.3 million people have the disease worldwide.