My journey with Parkinson’s began in 2012 at the age of 31 with a small tremor in a finger. My symptoms slowly progressed to my left hand and foot and I spent the next 2 years seeking a diagnosis before a movement disorder specialist identified my symptoms as Parkinson’s. I didn’t know anything about the disease at the time of my diagnosis so I started learning as much as I could.
I’m grateful to have had bilateral Deep Brain Stimulation (DBS) surgery in 2018 to help manage my tremors, ongoing medication management, Botox injections to manage my focal dystonia, and physical therapy to keep moving. Today, while no longer able to work I can focus my energy and time on all aspects of my health and wellness. As a single parent to a precocious 3-year-old, daily living is a challenge but with support from my family and online community I am at a place in my life where I am happy and content.
At the time of my diagnosis I was in the best physical and mental health of my life, unfortunately Parkinson’s changed all of that. I didn’t take the time in my life to slow down and process my diagnosis and I paid a tremendous price for it. My experience is a cautionary tale but also one of redemption and grace.
My advice to someone newly diagnosed is to focus as much energy and effort on your mental health as your physical health. Find a mental health therapist, identify healthy coping mechanisms, join a support community whether it’s online or in person and process your diagnosis. I’m really grateful to the YOPD Facebook group community for being such a great resource for information and a place to ask questions and to share my experiences. It’s here that I met other LGBTQ people living with Parkinson’s and my friend Jason. As a gay man, living with Parkinson’s you can feel even more isolated, but having a gay friend going through the same experience, I no longer feel alone.
The biggest lesson I have learned is we are not alone. Life with Parkinson’s is possible. Our identities are layered with different facets of who we are as people. Today, I’m happy to share that I’m an out and proud gay man living with Parkinson’s disease.