Parkinson’s research comes under threat
University says conflict sparked funding decision as patients fear program cuts
Ten years ago, retired teacher Don Woodley was reluctant to eat at restaurants for fear of spilling things. His hands would shake and it was hard to hold utensils or a cup. When it came to writing, for him to scrawl anything legible, the 77-year-old would need to use his left hand to steady his right. Even walking was sometimes a struggle.
His Parkinson’s disease was taking a toll and he was anxious to find a solution, so he turned to Dr. Quincy Almeida and the Movement Disorders Research and Rehabilitation Centre at Wilfrid Laurier University. Within months, Woodley was confident enough to eat out, his handwriting was no longer shaky and he was running on a treadmill with assistance.
His diagnosis changed from Parkinson’s disease to a cousin ailment — essential tremor.
But that progress is being threatened by the university, say Woodley and Parkinson’s sufferers who claim the school has redistributed some funding for their treatment, and access Parkinson’s researchers have to some laboratories and equipment.
They say they do not know why the university unexpectedly gave some of the Parkinson’s resources to other centre scientists studying soccer ball dribbling and dance, rather than neurodegenerative movement disorders. The decision, they claim, jeopardized Parkinson’s treatment and gave staff no time to account for interruptions to research.
Dr. Max Blouw, the university’s president, said resources and space had been reallocated by the school. But he said the reason for the move was a “deep and quite sustained” conflict between researchers fighting over space.
As a result, the university decided to redistribute space and equipment, and commit to providing more of both so every researcher has an equal share.
“The Parkinson’s sufferers are still under the impression that there is going to be some kind of dramatic demotion of the capacity of Dr. Almeida to work with them and quite frankly, I don’t see that,” said Blouw. “I’ve tried to reassure them of that, but they continue to be quite fearful of those kinds of consequences.”
That fear has manifested itself in a petition signed by more than 500 Parkinson’s sufferers and concerned Canadians, who claim Woodley and other centre-frequenters have few, if
“I am really, really concerned for the majority of people who were improving.” DON WOODLEY RESEARCH CENTRE PATIENT
any, alternatives for equally effective treatment because of the space redistributions.
“I don’t want to lose what I have gained,” Woodley said. “I am really, really concerned for the majority of people who were improving. Without this centre, I don’t know what they are going to do because it is basically their lives.”
Barb Glazer, a former medical laboratory worker attending the centre for Parkinson’s treatment, feels the same.
“I do not know where I would be without the support, encouragement, exercise programs, education and the valuable friendships I have made,” said Glazer, in her note. “I am asking that we work collaboratively for the common good of Parkinson’s patients.”
She said she was in shock when she first discovered the program was in jeopardy when a student working at the centre revealed the university was cutting off access to camera equipment. The cameras, costing $80,000 each, aid in movement diagnoses and treatment by evaluating tremors and helping to collect data.
It came as a shock for Glazer, who like Woodley and dozens of others, wrote complaint letters to Blouw and politicians at all levels of government.
Patients say they have driven from as far as British Columbia and through blizzards to access rehabilitation programs run by Almeida, a recipient of the Queen Elizabeth II Diamond Jubilee Medal, Rick Hansen Difference Maker award and a handful of international honours.
Those who once relied on walkers to get around wrote that Almeida and his team are the reason they can now walk without any assistance required. Another said Almeida and the centre have helped him cope with debilitating tremors, making a two-week hike with a 60-lb. backpack through the rocky Baffin Islands possible.
Glazer says she was falling in her garden and constantly having balance problems after discovering that she had Parkinson’s. She didn’t know how to cope.
“It’s hard to swallow when you get the first diagnosis. I kept it a secret from people,” she said. “But when I started the program, there was something magical about it.”
She gets choked up talking about the power of the centre, which she treks to aboard two buses a few times every week, and is distraught at the thought of having to find another program with the same effects.
“These people are still alive even after 10 years of Parkinson’s and just the thought of not being able to access the programs, even for 50 per cent of the time, is literally shattering,” Almeida said.
“It’s very difficult for me to explain why world-class research is going to need to stop because of whatever process the university went through to get through this point. I would have thought they would do anything to protect this.”