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Sailing enthusiast Peter Juryn joined a pilot study that put him in charge of managing his Parkinson’s disease. An expert nurse helped him set his own care priorities and referred him to health-care professionals who specialize in his care needs.
Sailing is a life-long love affair for Peter Juryn that began when was nine years old. He now sails out of the Nepean Sailing Club, where he also helps out with the boats and hangs out with his friends.
Unfortunately, the medication he takes for Parkinson’s disease was keeping him awake for hours during the night, making it harder to do the things he loves.
During an appointment, Dr. Tiago Mestre and nurse Diane Côté asked if he would like to take part in a study looking at a new way of delivering Parkinson’s care.
“I said ‘Sure, I’ll help. What can I do?’” said Juryn. “I’d like to help the system work better. If it can help me as well, then that’s great too.”
Juryn was paired with Côté, a specialized Parkinson’s nurse, who helped him identify his three care priorities: sleep, speech and exercise.
“I’m more in the driver’s seat,” said Juryn, who has lived with Parkinson’s disease since 2001. “I’m kind of building more of a team around me, based on these priorities.”
Juryn is currently treated with deep brain stimulation for his Parkinson’s, which reduced his medication and improved his sleep. But simple tips like moving his desk and computer out of his bedroom also made a difference.
“I built a sleep sanctuary of sorts, free from all blue screens,” said Juryn.
Côté also lined up a referral to a sleep clinic and to a speech therapist, all without Juryn having to see a neurologist. Thanks to a care network created by the researchers, she was able to direct him to professionals with knowledge of Parkinson’s disease. Peter has joined a specialized speech therapy program for people with Parkinson’s, and his voice and swallowing have already improved. He also joined a gym where he exercises three to four times a week.
“There’s a lot of demand for Parkinson’s neurologists, and patients often wait months between appointments,” said Côté. “By referring patients to specialized caregivers in the community, we can improve their quality of life with little cost to the system.”
Dr. Mestre received a $197,000 New Investigator Award to test this new model of care, called the Integrated Parkinson’s Care Network, which was developed in collaboration with Dr. David Grimes. The pilot study at The Ottawa Hospital has recruited almost all the 100 patients it needs after only four months. If it is successful, the model may be introduced to other sites across Ontario and Canada.
“I’m excited about this project because it has the potential to make a real difference for our patients, and the results are immediate,” said Dr. Mestre, a Parkinson’s neurologist at The Ottawa Hospital and an assistant professor at the University of Ottawa Brain and Mind Research Institute. “We believe that this patient-centred model can improve quality of life for the 100,000 Canadians living with Parkinson’s disease.”
Juryn has been very satisfied with the care he’s received.
“All the staff are really helpful, and they obviously care,” said Juryn.
“I am very proud of Peter for his accomplishments and the things he is doing to improve his quality of life since entering the study,” said Côté.
This research is also supported by generous donations to The Ottawa Hospital and the University of Ottawa Brain and Mind Research Institute.
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