Parkinson’s Disease is the fastest growing neurological condition, with over 18,000 people in Ireland grappling with its impact. It isn’t just a diagnosis; it’s a life-altering journey that touches every aspect of one’s life. Yet, amidst its challenges, there’s hope. Today, on World Parkinson’s Day, we spotlight Gary Boyle, Vice President of Parkinson’s Europe and one of our own patient advocates – a remarkable individual facing this deteriorating neurological condition head-on.
As kids, we dream of careers, not becoming patients. Yet, for many, becoming a patient is inevitable. And for Gary, his journey as a patient began in 2009, when he was diagnosed with Parkinson’s Disease, at the age of 44. The blunt reassurance, “It won’t kill you,” did little to ease his turmoil, and for five years, he struggled as he saw his life slipping away. But now, reflecting on that period, Gary acknowledges the transformative journey he has been on, finding solace and empowerment in advocating for others. To anyone facing the shock of a Parkinson’s diagnosis, he says;
“It’s a terrible blow, unfair, and life-altering. But remember, it’s not the end. Take your time to process; it’s a monumental change but you’re not alone. There are daily advancements that bring hope. Don’t be afraid.”
Exercise as Medicine
Gary lives by the mantra, “exercise is medicine.” For people living with Parkinson’s, like him, staying active is crucial. From chair yoga to resistance training or running, any form of exercise works wonders. Movement is key in facing the challenges of the disease.
Building on this philosophy and inspired by Italian neurologist Prof Daniele Volpe’s pioneering research, Irish set dancing has emerged as an unexpected therapeutic outlet for Parkinson’s patients. Volpe’s observation of a man dancing effortlessly after struggling to walk sparked an exploration into the rhythmic patterns of Irish jigs, which seem to override neurological impediments. For Gary, who attends classes twice a week and facilitated an online version during COVID, Irish set dancing has become more than just a hobby—it’s a lifeline.
Keeping Your Voice Strong
Gary’s journey with Parkinson’s Disease has been marked by many pivotal moments. Despite a rapid decline after diagnosis, relief came when work stress eased. Recognising the toll of stress on symptoms, he embraced speech and language therapy, a step he hadn’t considered before. Over time Parkinson’s Disease can weaken a person’s voice, making it more difficult to speak up. With his wife’s support, and through LSVT Loud therapy, he discovered the important role his voice plays in self-advocacy and amplifying the voices of others in the Parkinson’s community.
Advocacy Amidst Adversity
Gary’s journey is punctuated by many pivotal moments that underscore the crucial need for increased awareness and support for people with Parkinson’s. Whether speaking at conferences, engaging on social platforms like X, or participating in patient panels like ours, Gary is consistently challenging the status quo. His advocacy extends to tackling inaccessible medication packaging.
“I was shocked to find doctors prescribing medication that they couldn’t even open themselves. The phrase “Trust me, I’m a doctor” doesn’t inspire confidence anymore!”
During a milestone moment at a professional conference in 2016, Gary orchestrated a demonstration. He challenged professionals without Parkinson’s to open blister packs containing essential medication. Despite their superior fine motor skills, they too struggled, exposing a significant oversight in packaging design. This was a major step towards more user-friendly solutions.
Championing Change
Gary is deeply committed to spreading the message that living well with Parkinson’s is achievable. His journey initially lacked support and outlook, but after finding the right consultant, his experience transformed. He envisions a future where multidisciplinary care becomes the gold standard for all Parkinson’s patients.
“I quietly hold onto hope that the advancements in treating Parkinson’s symptoms will significantly improve outcomes for patients – these treatments could nearly be the cure we’ve been waiting for!”
Activism is key to addressing the rise of Parkinson’s disease, drawing inspiration from successful campaigns against conditions like HIV and breast cancer. By raising awareness, securing funds, advocating for policy changes, and forwarding our mission to transform the patient journey through groundbreaking research, tangible differences can and will be made in the fight against Parkinson’s.
On this World Parkinson’s Day, let us heed Gary’s call to action, standing in solidarity with Parkinson’s patients worldwide as we strive for a future of hope, empowerment, and ultimately, a cure.
