Canadian Open Parkinson Network: Eleanor’s Story

Fifteen years ago, Dr. Eleanor Johnston noticed a sight tremor in her right hand and thought nothing of it. When she asked, her chiropractor said she could not give a diagnosis and suggested that she speak with her GP. Her family doctor politely told her that it seemed likely it was Parkinson’s. 

Her husband Wayne accompanied her to the first of many appointments with Dr.  Antonio P. Strafella, MD, PhD, FRCPC, FCAHS, a neurologist with expertise in movement disorders at the University Health Network in Toronto and also a member of the Parkinson Canada Board of Directors.

“When I revealed my diagnosis was several years ago, a former teaching colleague reacted with surprise,” Eleanor said.

Knowing that Wayne and Eleanor had PhDs in English and written novels together, Dr. Strafella challenged them to tell a story of one woman’s experience of living with Parkinson’s. That is how the novel Shaking Parkinson’s was written and made available on Amazon. A retired nurse, who read the novel twice, remarked that “every caregiver and nursing student should read this novel.”

“I felt fearful but determined not to let PD make a major change in my life,” Eleanor said. “Dr. Strafella once called me a ‘genius of denial,’ so I wrote about how one woman, her husband and their children handled the shock of a Parkinson’s diagnosis.”

From Dr. Strafella, Wayne and Eleanor first heard of the Canadian Open Parkinson Network (COPN) and Eleanor is now registered as a patient to be included in the database shared by Parkinson’s researchers across Canada.

“I feel committed to the importance of opening the files to give wider access to Parkinson’s. It has patients who live longer than the patients of most diseases.”

– Dr. Eleanor Johnston

“It is interesting how some people totally avoid talking about Parkinson’s. We would like to help others through detailed and clear information,” Eleanor and Wayne said. They have done joint readings from the novel to Parkinson’s support groups. The engagement during the Q&A sessions taught Eleanor and Wayne to be more forthcoming about the challenges of Parkinson’s. They noticed people seem willing to share their experiences and frustrations.

Eleanor’s medications grew complicated. LEVOCARB was one medication that remained effective. Mirapex, another medication she had been on for years, stopped working and she was taken off it.  This caused serious withdrawal and she thought she was dying.

By March 2020 she lost 10 pounds and bedridden, watched a lot of CNN and Schitt’s Creek. She was getting worse, however, after a telemedicine session with Dr. Strafella, a mild dose of Mirapex was reintroduced, and she soon was her active self again. Eleanor and Wayne walk and bike every day in good weather and enjoy four hours each week at the Brock University senior fitness centre.

Wayne does a lot of online research on Parkinson’s and usually has the answers at his fingertips when Eleanor needs them. People seem to appreciate learning about Parkinson’s from a work of fact-based fiction rather than a textbook full of dry statistics.

“This is a very kind and useful process,” Eleanor said. “I trust that I will be able to offer COPN more than just a monkey or guinea pig since I, like Wayne, have training and experience interviewing patients in the home as well as the hospital milieu. We look forward to positive interactions with members of COPN as we all move toward a cure for Parkinson’s.

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Editor’s note:

Dr. Eleanor Johnston and Rev. Dr. Wayne Fraser retired fifteen years ago from teaching and administrative work in Niagara private schools. She was a chorister and lay leader in the Anglican churches where Wayne preached exciting new ideas of progressive theology. They have moved on to work together on numerous justice issues and share the joys of loving each other, their children and grandchildren, reading and writing, dancing, birdwatching, gardening, and enjoying music and Niagara foods and wines with their friends and relatives.

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