Gordon Buchanan was 69 years old when he noticed a cramp in his baby finger. Then, his handwriting got smaller. One day, as Buchanan headed off to work at a lumber mill in northern Alberta that he owned, his wife noticed something new. “I was giving him a hug as he was going out the door and I noticed a tremor in his back,” says Diane Kyle-Buchanan. “I asked him, ‘What’s that?’ and he said that he had had it for a while.”
The tremors and cramps turned out to be symptoms of Parkinson’s disease, a progressively degenerative neurological condition.
Now, Diane and Gordon are helping to create a centre for the many Albertans living with the condition – according to Parkinson Alberta, last year there were more than 8,000 cases in the province. The Buchanan Centre, scheduled to open by next year, will help patients with disease management. “The biggest thing you get is the fear. People who get the disease think, ‘Now what?’ We are able to take the fear away because we can help them manage the disease and make decisions sooner,” says Diane, who is on the board of Parkinson Alberta.
The Buchanans realized the need for a centre right from the beginning of their experience with Parkinson’s disease – the couple travelled to Phoenix, Ariz., to the Mayo Clinic, to see a neurologist after they learned there was a one year wait to see one in Edmonton. The College of Physicians and Surgeons of Alberta lists 122 neurologists in the province, as of 2013.
“For this population, it’s just too much work for them,” says Diane. “The thing I really want to work on is to take some of the pressure off of the neurologists so that, when their patients are diagnosed, they can send them here.”
The centre will offer 19 programs, and services such as counselling and speech therapy. It currently costs $48 million a year to provide services to people living with Parkinson’s disease, according to Parkinson Alberta.
The Buchanan Centre will also look at the effects of community-based assistance on patients with Parkinson’s disease, to see if there is a benefit to keeping them in their homes longer. The results will be monitored and shared with other cities who are interested in setting up similar centres – Parkinson Alberta has already received calls from the United States and the United Kingdom about the centre’s research plans. ” [Researchers] aren’t any closer to a cure. They’re trying to manage the disease,” says Diane. “Until they know what causes Parkinson’s disease, they can’t cure it. It’s a real tough road to hoe.”
The Buchanans are coordinating the building of the centre, as well as committing their foundation to a sizeable endowment fund to cover building and operating costs. Ideally, Parkinson Alberta hopes to raise more than half of the funds needed through individual and corporate donations.
” [In April] , we sent in a request to the provincial government to come on board with capital funding,” says John Petryshen, CEO of Parkinson Alberta. “I’m not sure what to expect right now, with the change in leadership. We had a meeting with the deputy minister and now we’re just waiting. We’re in a holding pattern right now.
“One of my initiatives is to make sure that we get the support from the provincial government, because I think it shows the value that this project brings to not just the city but the province.”
Parkinson Alberta requested $2 million from the provincial government but will keep construction going regardless of whether or not it receives any funding, says Petryshen. The organization broke ground in 2014, and expects the centre to open by early 2015, says Brandi La Bonte, community relations coordinator for Parkinson Alberta. “We have great companies coming on board to help out but we are still looking for more.”
The organization held a fundraising gala in October 2013 that brought in almost $800,000, and another foundation has committed a multi-year grant, says Petryshen.
As for the Buchanans, every day is a struggle to deal with the effects of Parkinson’s disease. Gordon, now 85, is retired, in a wheelchair, and can’t speak very well. For people with Parkinson’s disease, “Their world gets very small,” says Diane. “It’s hard to interact with other people. It’s hard to eat. In the final stages [of the disease] , it becomes very difficult to swallow because those muscles start atrophying.”
While the centre’s programs won’t make patients’ symptoms disappear, they may make them easier to deal with, says Diane. “It’s not a medical facility; it’s a ‘living better’ facility.”