A UHN patient whose diagnosis of Parkinson's disease turned her life upside down just as she was entering retirement has channel led her experiences into a new book she hopes will serve as a guide for others.
Eleanor Johnston, a retired schoolteacher, grandmother of six and author of several books, believes her latest novel,
Shaking Parkinson's, could be a valuable resource for other people diagnosed with the neurodegenerative condition that affects more than 100,000 Canadians.
"One of the things I've noticed about Parkinson's is that it tends to be connected to a trauma, whether that's physical or psychological," says Johnston, 67.
Fortunately for Johnston she's got an ace in the hole in terms of support: her husband Wayne Fraser, who's dutifully acted as caregiver and cheerleader in the years since her diagnosis and, more recently, writing coach as Johnston revisited some difficult emotions and memories in the course of writing the book.
Cold shoulder
Johnston's Parkinson's journey began about a decade ago when several personal and professional milestones intersected.
"Everything happened at once," says Johnston. "I had recently retired, become a grandmother and started writing books. That's when I found out about the Parkinson's."
Johnston says she was both shocked and angry to discover that a nagging case of frozen shoulder – a sensation of stiffness and pain in the shoulder joints – was actually something far more serious.
"My first thought was, 'Well, what does this mean?' And then my second thought was, 'What about Wayne? How is this going to affect us as married people?'"
It turns out she didn't need to worry about Fraser, who is also a writer and a part-time Anglican priest. Her husband of 45 years – the couple met while they were both students at the University of Toronto's Victoria College – was up for the challenge of doing whatever was necessary to assist his beloved wife.
An introduction to Toronto Western
While a local physician in her hometown of St. Catharines, Ont., made the initial diagnosis, Eleanor was eventually referred to the Edmond J. Safra Program in Parkinson's Disease and the Morton and Gloria Shulman Movement Disorders Clinic at Toronto Western Hospital for an appointment with neurologist and Parkinson's specialist Dr. Antonio Strafella.
"We hit it off immediately," says Eleanor. "He has a gentle style. He would very quietly listen to my concerns. I remember he said this is the best kind of Parkinson's to have – the one with slow progression."
Dr. Strafella, who is also a Senior Scientist at the Krembil Research Institute and the Canada Research Chair in Movement Disorders and Neuroimaging, provided a lot of advice and direction, especially early on.
"I always suggest to patients who have this disease that they try to be as active as possible. Intellectual pursuits and social activities can provide important feedback for the brain," says Dr. Strafella.
"We know now that patients who engage in these activities have a better response to the disease than those who do not."
Johnston and Fraser took the advice to heart and continue to make a special effort to be active every day. When not walking or biking, they can often be found dancing or exercising at a local fitness centre.
Giving back through research
Toronto Western is home to one of the largest research programs dedicated to learning about the mechanisms that underpin Parkinson's disease and searching for new ways to treat and care for patients.
It's for this reason that Dr. Strafella invited Johnston to participate in a series of research studies.
"She's a very active patient," says Dr. Strafella. "She was very keen to take part in the research, but she also wanted to understand what it was about. What is the purpose? The methods? The goals? What is the impact on quality of life?
"Every patient is a little bit different, but Eleanor is highly motivated, and not only is she active socially and physically, but intellectually as well. She ended up participating in a number of projects."
Putting pen to paper
It was during one of her visits to Toronto Western that Dr. Strafella learned that Johnston is a prolific writer and author and suggested she consider channelling her experiences into a book about Parkinson's.
"We both thought that was a great idea," says Wayne. "Write about what you know, right?"
What followed was a two-year odyssey Johnston can only describe as "exhausting" as she revisited many of her initial feelings about accepting the disease into her life, but which eventually resulted in publication of
Shaking Parkinson's.
The book is not a biography, but instead a literary fiction in which the main character is forced to face an uncertain future and many of the challenges and difficulties associated with living with the neurological condition that has no cure.
The book's protagonist, Joyce, is in denial of her diagnosis and tries to hide it from her friends and family, or in the words of Johnston "shake it off."
"She just wants to go on being a classical musician. She plays first violin in a local community orchestra," says Johnston.
"She's worried about the effect of the diagnosis on her family and her life," adds Fraser.
Looking ahead
Johnston says her intent in writing the book was to prevent other people with Parkinson's from becoming overwhelmed and to re-assure them there is life after diagnosis.
"We'd really like this to get out to a wider audience," adds Fraser, "because I think it could be really helpful for people with Parkinson's, but also family members and caregivers, like myself."
Dr. Strafella, who penned the foreword for
Shaking Parkinson's, says he found the experience of reading the book very personally rewarding, particularly because it highlights the fact that recent scientific discoveries offer hope that new treatments could be on the horizon.
"It's very entertaining. I think it's the type of thing that can be very helpful for Parkinson's patients who are dealing with this condition. That's a positive for a number of reasons."
