Larry Linton was diagnosed with Parkinson’s in 2012. Like many, he explains the process to receiving that diagnosis as a long one. With uncertainty about symptoms, confusion at points of referral, and a long waiting period for appointments all leading to the final 30-minute matter of fact appointment at which he learned he had Parkinson’s.
After receiving the news, Larry reflects on what he feels like a big first mistake. He remembers hearing the words chronic, incurable, and progressive at his appointment and little else. So, he went on a research journey. “The worst thing that I did, when I got home… after meeting with the neurologist was to google Young Onset Parkinson’s. I was traumatized at what I read to such a point that I didn’t know what my life was going to entail and whether I’d be able to live with the disease. I saw images and was introduced to a new vocabulary within 24 hours that I had no idea what it all meant,” he said of that day.
From there, he withdrew. The first two years of Larry’s diagnosis threw him into a downward spiral. He felt withdrawn from his family and made excuses for his twitching and dragging his right leg. “It was easier to deny what I had rather than try and live with it. So, I lived in this dual sort of world because there as the real world where I certainly knew that I had Parkinson’s, but then a different world where I was lying to myself and to my family and friends about what I was living with.”
That experience ultimately motivated Larry’s desire to form a Parkinson Advisory Council (PAC). To ensure that people with Parkinson’s know where to turn when they receive a diagnosis and for support throughout the course of managing the disease. Encouraging people to take charge of their Parkinson’s is a big part of the No Matter What message. It starts with developing programming that are relevant to Canadians with Parkinson’s at all stages of their diagnosis.
The PAC has been developed to help ensure the voice of Canadians with Parkinson’s are present in all programming decisions and to help formalize the design of a Parkinson-centred organization.
PAC will serve as an advisory council to the CEO and organization to:
- Incorporate the perspective of people impacted by Parkinson’s
- Provide insight and expertise into key program and strategy decisions of the organization
- Champion the vision, mission, and initiatives of Parkinson Canada.
- Be the driver of Parkinson engagement across Parkinson Canada.
After the initial phase of denial, Larry found acceptance with his diagnosis. And with acceptance, literally, he got off the couch and got back onto the treadmill. He also connected with others in the Parkinson Community, finding what he calls “his tribe” through a Parkinson Canada event. He’s taken advantage of educational materials, support group programming, and has found it to be an important part of his journey… even if he came to it all a little late.
Now, Larry will play an active role in co-creating programs that are Parkinson-centred in their design and he is excited about the prospects.
“I think it’s great because it puts the person with Parkinson’s and the caregiver at the table with Parkinson Canada. And I think that’s important. In the past, as a person with Parkinson’s, we’ve all been the beneficiaries of the services and the programs that have been offered, but we’ve been passive recipients of those services. Now, with the establishment of the PAC, it puts us at the table to co-create policy and be at the table for decision making that will allow us to be an integral part of those programs and services.”
The work of the PAC is just getting started. Larry and his peers have formed a selection committee that is just finalizing review of more than 50 applications. Once the committee is established, you’ll hear about their membership and their projects in this space often. Today, we welcome Larry Linton as Chair of the Parkinson Advisory Council.