PARKINSONZ ACEs

Adapt, Conquer, Empower Others

Meet Nikolas

Nikolas Koukoulakis, a photojournalist turned sports scientist from Athens, Greece was diagnosed 2009 at the age of 39 with PD, after having symptoms for 10 years. He is the proud father and grandfather of a daughter and granddaughter who live in Sweden. Through his work as a photographer and advocate for exercise in managing Parkinson’s, Nikolas has shown how determination can transform challenges into opportunities for growth and empowerment.

A Photographer’s Eye on the World

Nikolas’s love for photography began early in life. Capturing the world through his lens became a way to document not just images but stories that mattered. His career as a photojournalist took him to the frontlines of global events. At just 22, he photographed the civil war in Sierra Leone, bearing witness to the turmoil and humanity of the moment. In 2007, he was arrested in Zimbabwe under Robert Mugabe’s regime, accused of espionage for taking pictures.

His work wasn’t limited to conflict zones. Nikolas captured the aftermath of natural disasters, such as the 2009 earthquake in Jakarta, Indonesia, where he experienced firsthand the fragility and resilience of human life. Even as his Parkinson’s symptoms began to emerge, he pursued his passion with unrelenting determination.

After his diagnosis, he channeled his creativity into a new form of expression. His first photo exhibition featured images from East Africa, celebrating the stories of the people he met during his travels. Photography, for Nikolas, was not just a career but a way to engage with the world —a passion he carried forward even as his path shifted.

Finding Strength in Parkinson’s Diagnosis

When Nikolas was diagnosed with Parkinson’s disease in 2009, it came after a decade of unexplained symptoms that followed chemotherapy and CNS radiation for Stage 4 Non- Hodgkin’s Lymphoma. His doctor’s prognosis was grim—six months to live. But for Nikolas, this wasn’t the end. It was a turning point.

He turned to his lifelong passion for physical fitness, enrolling in university to study sports science. Despite the challenges of tremors and mobility issues, he completed his degree, fueled by a desire to understand how exercise could combat the effects of Parkinson’s. This period marked a shift in his life’s purpose, from documenting the world to empowering others through movement.

Building a Legacy of Strength

During the COVID-19 lockdown, Nikolas faced one of his most challenging periods. Gyms were closed, and his symptoms worsened—freezing of gait, balance issues, and frequent falls. In response, he built a home gym, using weight training to regain his strength. The results were extraordinary: his UPDRS score dropped from 29 to 13 within eight months.

Nikolas realized that weight training wasn’t just beneficial for him—it was essential for anyone with Parkinson’s. He began coaching others, including his sister, who was diagnosed with the disease in 2022. Under his guidance, she achieved remarkable progress, lifting 100 kilograms and managing her symptoms without medication.

Taking his mission further, Nikolas founded the world’s first Parkinson’s powerlifting team, proving that individuals with Parkinson’s could compete and excel in strength sports. For him, weight training isn’t just exercise—it’s a lifeline, a way to build the muscle system necessary to counteract the energy demands of Parkinson’s.

An Advocate for Action

Nikolas’s advocacy extends beyond the gym. His book, Parkinson Faces Project, is a poignant collection of unedited black-and-white portraits of athletes with Parkinson’s, showcasing their determination and humanity. Through his writing, training, and personal story, he emphasizes the importance of taking proactive steps to manage the disease.

For Nikolas, Parkinson’s has been both a challenge and a teacher. “I don’t hate Parkinson’s,” he says. “It helped me achieve goals I might not have pursued otherwise.” His journey is a testament to the power of resilience, creativity, and community in navigating life’s most difficult moments.

Parkinson’s Face Project can be purchased through Amazon link.