Every day 25 Canadians are diagnosed with Parkinson’s Disease. In 2015, Dr. Harold (Harry) Robertson was one of them, but his path to diagnosis is unlike many others.
Dr. Robertson’s journey to diagnosis started in 2009. Having studied the effects of dopamine on brain disorders such as Parkinson’s and schizophrenia for years, he took an interest in 2009 in preclinical markers for Parkinson’s. In particular, he was looking for those that might lead to an early Parkinson’s diagnosis as the key to start treatment before the onset of symptoms. Additionally, he was interested in the loss of smell as a predictor of Parkinson’s.
In his research, he found that changes to the olfactory bulb could occur five to 10 years before the onset of motor and other symptoms. Investigation into the role of the olfactory tract continues to be a focus in the field of preclinical markers and it forms one of the most significant areas of opportunity for early diagnosis, along with the gut (see our February article on research by Dr. Silke Appel-Cresswell).
During the study, Harry reflected that he, himself didn’t have a good sense of smell. Like so many, he did not think much of this until other Parkinson’s symptoms began to show. Six years later in 2015, he developed a mild tremor in his left hand. Then, one day he had some difficulty climbing the stairs at a friend’s cottage. Armed with all he knew; Harry saw a neurologist and was diagnosed with Parkinson’s.
“It crept up on me,” Harry said. “The symptoms were very mild in the beginning. They were hardly noticeable.” Having been around Parkinson’s for years, he understood the diagnosis well. And he was determined to stay positive.
The reality is that a diagnosis of Parkinson’s creeps up on a lot of people. If a researcher studying early signs of Parkinson’s took years to receive a diagnosis, you can imagine there are many more who aren’t diagnosed until more prevalent symptoms begin to show. Clinicians and researchers like Dr. Robertson are working hard to discover biomarkers and other clues to help diagnose the disease before physical symptoms begin to show.
“It certainly didn’t please me when I was diagnosed but it didn’t scare me either,” he said. “Parkinson’s has made life considerably more difficult for both myself and my wife Liz, but we stay positive”. The couple continue to live life to the fullest, including Harry’s regular involvement in a local Parkinson’s boxing program (on hold during COVID-19 restrictions) and ongoing research as Professor Emeritus collaborating with colleagues at Dalhousie University, the University of Prince Edward Island, and the Karolinska Institute, Stockholm Sweden.
While Harry’s diagnosis story is unique, his perspective on taking life one day at a time and doing what he can to keep his mind and body active. Harry takes on Parkinson’s with the support of Parkinson Canada – with hope for a cure and the same spirit people with Parkinson’s exhibit daily in a drive for answers. While research like Dr. Robertson’s has not yet led to a smell-based diagnostic test, it points to the great promise for improvement that can spark early intervention. The work of investigating pre-clinical markers is incredibly important. The Parkinson Canada Research Program and other leading research investors regularly fund projects exploring the potential of these early indicators of Parkinson’s (please read more about biomarker projects your donations support in this year’s funding cycle).
The topic of diagnosis is important for Canadians living with Parkinson’s. The sooner a person can access a neurologist to confirm a diagnosis and the more accurate the diagnostic tools we have available, the better.- Improvements in these areas would mean that people living with Parkinson’s can effectively begin treatment and ideally retain capabilities for living as fully as possible. In a best-case scenario, researchers will be able to test drugs designed to modify the progression of disease and down the line possibly even to stop or at least reverse the brain deterioration caused by the loss of dopamine leading to Parkinson’s. Short of finding a cure, clarity of diagnosis helps answer many questions. It helps to prepare someone for treatment. it starts their path to building resilience. Parkinson Canada recognizes this priority and is emphasizing the importance of timely and accurate diagnosis for Canadians.
Editor’s Note:
We’ve highlighted this story for a reason. If a researcher trained in the early warning signs of Parkinson’s struggled to receive a diagnosis, and even to explore one, you can imagine that many Canadians face the same issues. We need to educate Canada and our clinicians on what Parkinson’s looks like so that they can support early diagnosis and intervention.
You can read more of Harry’s story on CBC.
Congratulations are in order. Harry was recently honoured with The Harold A. Robertson Award in Parkinson’s Disease Research through the Dalhousie Medial Research Foundation in recognition of his leadership and achievements in the Parkinson’s research space.
Further reflections are in order in this space. I (Jon Collins) have been with Parkinson Canada since 2008 in a variety of roles, and in that time, I’ve met so many members of the Parkinson Community who I am truly proud to work for. Harry was one of the first. I remember being very new to the organization and at 24 years old new to pretty much everything. Within 3 months of my start date Dr. Robertson graciously agreed to let that young man be his chauffeur through Atlantic Canada as part of a roving education series. I’ve reflected on his kindness, perspective and support during that week-long trip often over the years. While my colleagues and I sincerely hope (and work towards) the day when no one need hear the words “You have Parkinson’s” I count Harry’s story as one I am proud to tell, and him as a member of the Parkinson’s community I am proud to work with.
What an incredible story. Reading it, made me think of my husband’s early sign of a tremor to his left hand ‘pinkie’. I detected it, while he was relaxing in his chair, after work, one evening. Upon quizzing him, I didn’t accept his response, which was…It is just a nerve that my hand is resting on! I, immediately, researched this tremor &, to my dismay, found a link to Parkinson’s Disease. I told him! Then, I scheduled an appointment for our G.P., to assess. He agreed, with me. Another appointment to a Neurologist, at the Jewish General Hospital, in Montreal, confirmed my suspicion! That was about twenty-two years ago. Like Dr. Harold, we lived our lives, to the fullest. About five years ago, things took a turn for the worse…balance and falls, became our primary concern. I have been married to him, almost, fifty three years and, witnessed, first hand, his incredible, brave journey. All the way from, Stage One to Stage Five, which is where he is at, right now. It is devastating! He is, now, confined to a bed, in our home, unable to do anything besides breathe, chew and swallow, slowly. His body is emaciated. He was a, strong, six-foot Steel Worker whereas, now, he is, totally dependant, on me, for ALL his needs.
God Bless Dr. Harold Robertson for his dedication to the Parkinson’s community, which, by way of this news-letter, we are proud to become a part of.