Parkinson's disease (PD) has an uncanny ability to catch you off guard, striking when you least expect it. I was 39 years old and living an active life when my first symptoms emerged. My wife actually noticed before I did, when she pointed out that my right arm appeared stiff during a walk.
Soon after, while I was playing golf, I had a moment where my mind and body seemed to exist in two separate worlds, leading to several out-of-control shots. I also noticed that my symptoms were concentrated on my right side, affecting my fine motor skills and leading to a change in my gait.
My symptoms progressed and reached a breaking point when a stumble over my right foot sent me tumbling down the stairs at home. It was a wake-up call and a realization that I needed to find out what was causing these problems.
The following year and a half became a flurry of doctor’s appointments and diagnostic tests in search of answers. After seeking second opinions, the verdict finally arrived in 2007: Parkinson's disease. Accepting this harsh reality was a struggle, followed by the onset of anxiety, fatigue and an apprehension towards even the simplest of tasks. These limitations became my new companions, guiding my decisions.
In pursuit of a better life, I explored different treatment options — acupuncture, hyperbaric oxygen therapy, massage, muscle activation techniques, peptide therapy, IV nutrition therapy and more. Although I was making progress, I needed to go further.
A pivotal turning point was when I engaged with a movement disorder specialist (MDS). This collaboration reshaped my perception of how to manage Parkinson’s. Together, we created a holistic approach to tackle my symptoms head-on, establishing a plan that revolved around exercise, diet and stress management. We connected in a profound way that changed my outlook and helped me learn new techniques for dealing with PD.
I also began looking into resources from the Parkinson’s Foundation to help navigate the disease. I found the Living with Parkinson's section on their website to be a great resource for information. One of my initial challenges after being diagnosed was finding support, so I started incorporating their emotional and mental health tips into my everyday life.
Fueled by positivity and visualization, I envisioned a life free of mobility hindrances, propelling me towards greater activity and diminished fear. This journey of embracing Parkinson's became a lesson in understanding my body and its signals.
However, in February 2020, a setback led me to the emergency room. My Parkinson’s medications had become ineffective, and I felt like my body was betraying me. Three months of at-home care steered me towards a groundbreaking decision — deep brain stimulation (DBS) surgery. After meticulous research and consultations with my neurologists, I underwent the DBS procedure in November 2020. This surgery marked a new chapter in my life, bringing improvements to my mental, physical and spiritual well-being.
Utilizing the lifestyle strategies from my MDS and feeling rejuvenated after DBS surgery, I began exploring creative outlets. Inspired by my love for writing, I established Be Still Publishing, a platform where I share my poetry, lyrics and music. In 2023 I released my first audiobook, "Embracing Parkinson's: A Journey of Acceptance and Healing," featuring one-on-one conversations between me and my MDS, Joe Green, offering insights into the world of a person living with PD and strategies for managing the condition.
In my journey to understand and deal with Parkinson’s, I discovered one of the best ways to manage this disease is through the help of healthcare professionals. I was surprised to learn that only 9% of people with PD receive care from a movement disorders specialist. This hit close to home, as I worked very closely with my MDS for years and it made a huge difference in the way I viewed and managed my Parkinson’s.
I am grateful for the support of my neurologist and MDS, as well as my friends and family. Despite the challenges I face, I refuse to let Parkinson’s sideline my spirit.
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