UHN Patient Advisory Board Chair
Hugh Johnston is the Chair of the Patient Advisory Board (PAB) at the University Health Network, alongside Dr. Soania Mathur, Chair of the PAB Research Committee, and Gordon Myers, Chair of the PAB Communications Committee.
Hugh is a retired professional and a patient at the Edmond J. Safra Program in Parkinson’s Disease and the Morton and Gloria Shulman Movement Disorders Clinic at UHN. When not engaged in his Parkinson’s volunteer work, Hugh can be found sailing on his J27 sailboat.
In September 2021, he very graciously shared his personal perspective on several topics.
Can you tell us a bit about your journey with Parkinson’s and how it has affected your life?
Well, it pretty much turned things on their head. I am a researcher and observer by nature; and a talkative one at that. I dove in and researched as much as I could get my hands on to determine what type of PD I have and what my prognosis might be. As a long-term planner, I had to know more.
The research and the relationships I’ve been able to develop among a large group of patients, advocates, and family members have helped calm my anxiety over the disease. Frankly, the relationships have enhanced my quality of life immensely.
You have clearly developed the attitude not to be defined by the disease and use the available resources to stay well. Please talk about that.
Well, like everyone, I don’t use all the resources at my disposal; there are too many interesting things to learn and do. It’s not as much about not being defined by the disease as it is a life stance overall. When I remember, I choose to be happy and to help others. Funny how the two seem to go together if I don’t forget that it’s not “all about me”.
The concept of a Patient Advisory Board is important and timely. How did it get developed and what are the overarching goals of the PAB?
The idea started with the faculty; they wanted a way to get access to high-quality advice from patients and family members. They used a nominating process to identify who would make a good member of the Patient Advisory Board.
Together we came up with the PAB’s mission and everything we do fits within these few words:
To advise on innovations in clinical care, education, research, and business activities with the intent of improving patient experience, communication, and the quality of research conducted within the Movement Disorders Program at the University Health Network based in Toronto.
We are actively looking to recruit Ambassadors who are patients and family members from the Toronto Western Hospital Movement Disorders Clinic to work at the committee level.
Let’s discuss the role of the caregiver. The impact of the disease on the family can be significant.
One of my sayings is “Parkinson’s Patient, it’s not all about you.” I prefer to refer to “family” as opposed to the caregiver as the impact can be wide and dramatic. Family members will deal with their own mental health challenges, possible loss of income, and often a shrinking social network that can come with being a primary care partner of a patient with a disabling disease.
Porridge for Parkinson’s is very committed to raising money to support the work done by Dr. Lang’s group at UHN. This year we have developed a different approach to deliver our program, rather than holding an in-person event. Do you have any messages for our group?
I am a big fan of Porridge for Parkinson’s. I love how you raise significant money and am delighted that you are focusing on deploying what you raise to research at one of the world’s leading Movement Disorders programs located right here in Canada.
Tell us more about the Toronto Western Hospital Movement Disorders Clinic.
The Toronto Western Hospital Movement Disorders Clinic is humble about its standing in the world. The research and clinical faculty are recognized as some of the best in the world. When you hang around a bunch of activists and leading scientists in the field you find this out.
Research at the clinic has a strong focus on integrated therapies that will work to make the lives of Parkinson’s patients and their families better now, and they are getting results that matter! This is why I have chosen to focus my efforts on helping Dr. Lang’s team achieve their objectives.
When not engaged in his Parkinson’s volunteer work, Hugh can be found sailing on his J27 sailboat.