An interview with Gary Boyle from Parkinson’s Europe on July 19, 2023 by George Ackerman, Ph.D, J.D.
Gary Boyle was born in Dublin, Ireland in May 1965.
Married to Joan; 2 children (Daire, 28 and Bronwyn, 23).
BSc Management (European Law); worked 20+ years in HR; semi-conductor industry.
Diagnosed with ‘Young Onset’ PD at 44 in 2009; by 2015 forced to step down from job.
Shocked by the lack of resources, Gary has become a passionate Patient Advocate
Gary places huge emphasis on the importance of regular Exercise in slowing down PD.
He believes that a multi-disciplinary team approach to tackle PD is essential.
Gary is also Vice President of Parkinson’s Europe (formerly EPDA)
Keeping fit is now a way of life for Gary, with his motto: ‘I’m not cured but I am better’
Please tell me a little about your background.
When I was diagnosed in September 2009, my life turned upside down. I was shattered; my confidence evaporated. I went into total denial and for a period of 5 years I just took my meds. I tried to ignore what I was going through. Of course, as Parkinson’s is a deteriorating condition, eventually I had to act. I was becoming ‘old’ before my time, and I did not want my family to see me slipping away. I was very fortunate to be able to leave work through my employer’s Health Insurance plan. I found myself with a lot of free time and I decided to increase my exercise routine. Within months I was starting to feel the benefits and I wanted everyone to know.
Parkinson’s Europe is the only European Parkinson’s umbrella organization. We have been championing and working with the global Parkinson’s community for nearly 30 years.
As the leading voice for Parkinson’s in Europe, we provide trusted information; advance and share good practices; raise awareness and improve understanding of the condition; and facilitate research collaboration.
Can you tell me more about your advocacy?
I steadily increased my exercise routine, and it was really making a difference. I was really shocked to learn that not everyone living with PD in Ireland was taking regular exercise; indeed, many people were unaware of the benefits of exercise when living with PD. I think this is the first thing that people should be told, and encouraged to do, when a diagnosis of Parkinson’s is delivered. There is much we can do for ourselves on this Parkinson’s journey, that will lessen the burden and increase our well-being with even the simplest exercise. If we combine exercise (in all its formats) with a full multi-disciplinary team approach in treating PD, I really believe we will see more and more People Living Well with Parkinson’s.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I get very frustrated at the slow pace of change and the fact that the best drug we have for treating PD is nearly 60 years on the market. I don’t know if we are any nearer a cure for PD than we were when I was first diagnosed. I feel compelled to make noise about these facts. It also concerns me that Parkinson’s is the fastest growing neuro-degenerative condition on the Planet.
What type of goals do individuals with Parkinson’s awareness have when working with you?
I think we all have the one goal: improve the lives of People Living with Parkinson’s!
What effect can your advocacy have on an individual with Parkinson’s awareness?
If advocacy can shine a light on the difficulties People Living with Parkinson’s Disease experience, then it’s something I’ll continue to do for as long as I’m able.
What would you like to see as a future goal for your advocacy?
Right now, there is only one goal – improve the lives of People Living with Parkinson’s Disease.
What events do you participate in?
I’ve been very fortunate to have been invited into Colleges/Universities to speak of my experiences as a Patient and a Person Living with PD. I’ve also spoken at several conferences over the past few years. I’m a Board Member of Parkinson’s Europe, a charity that helps bring together many national PD charities across Europe.
How does this also assist the caregivers?
I hope that what I’m doing, or at least trying to do, will be of benefit to Caregivers. If we can improve the Lives of People Living with Parkinson’s, then we will also be improving the life of every Caregiver.
How can someone get in touch? What is your website?
My email address is: firstname.lastname@example.org
On Twitter: @Gfboyle1
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
As with most things in life, some days are better than other days. And the same is true with Parkinson’s Disease! You are not alone in this – reach out, there’s always someone to hear you and to help you. Together we can keep PD at bay, until eventually it goes away.
More on Parkinson’s Europe
That people with Parkinson’s and their families have access to the highest standards of treatment, support and care they need to live a full and comfortable life.
We work and campaign with people with Parkinson’s, their caregivers, families and supporters across Europe to ensure their voices are heard and listened to. We do this by advocating, raising awareness and working with other global Parkinson’s organizations to provide current information, share good practices, and highlight research that will benefit the whole Parkinson’s community.
Our strategic goals
To provide people with Parkinson’s, their families, and caregivers the right information at the right time to help manage their treatment, care, and wellbeing.
To help advance good practices in treatment, care, and wellbeing by acting as a hub for the exchange of information between local, national, European and global organizations operating in the field of Parkinson’s.
To facilitate better understanding of Parkinson’s among healthcare professionals and political decision makers – and to highlight gaps/discrepancies that exist in treatment and care.
To support and facilitate collaboration between people with Parkinson’s and those stakeholders involved in clinical research.
For more information see https://www.parkinsonseurope.org/