Vikas' Story: How boxing, family and patient engagement groups have kept me hopeful

My name is Vikas Chinnan, and I was diagnosed with Parkinson’s disease at the age of 45. Before diagnosis, the first symptom I experienced was extreme rigidity in my lower right leg.

I had a viral infection on my spinal cord at the age of 12, so it was thought it could be related; however, I then began experiencing ‘tremors’ which was a telltale sign of Parkinson’s.

Upon receiving the diagnosis, my emotions were mixed. Understandably, I was in shock given my age, I fell into the “young onset category” (under 50), which represents only 5% of diagnosed patients but I was equally thankful that I now had a diagnosis and could move forward.

Since then, my life has changed significantly; I had to retire from my job early as I struggled with low energy levels and to commit to a typical working week. My family, friends and caregivers have really been my rock, providing me with support whenever I need it.

During my spare time, I have found great benefit from attending the Rock Steady Boxing program. As a patient, fighting is an everyday part of life, so there is something to be said for putting gloves on and feeling like a fighter.

Inspiration from famous Parkinson’s patients such as Michael J Fox and Muhammed Ali, has also encouraged my participation in advocacy and outreach to the Parkinson's community, including joining the Patient Engagement Council for Parkinson’s Disease (PECPR). The PECPR unites Parkinson’s patients and supporting organizations worldwide and includes representation from the Parkinson’s Foundation and Parkinson’s UK.

Being involved with PECPR is a great opportunity to share my experiences with a company that is doing groundbreaking research in Parkinson's and for other people who are given the opportunity, I would strongly encourage you to participate in this type of research.

I also believe that building more awareness and shared experiences of Parkinson’s from diverse communities is crucial, ensuring the medical needs of all patient groups are well represented.

I hope to bring the fresh perspective of a young-onset patient, as well as someone who is newly diagnosed. I think those perspectives will be unique in the group and hopefully contribute to more disease-modifying therapies in years to come.