Hello. I'm Steve.
I founded Shaky Nation in 2022 to guarantee that no one in the future would ever have to experience what I had gone through to integrate Parkinson's Disease into my life. Shaky Nation intends to help lead an emerging portion of the Parkinson's Disease community attempting to change the face and landscape of Parkinson's Disease. A face that is inclusive of ALL OF US with PD, sitting squarely in the middle of our collective knowledge, research, treatment and advocacy. Raising our collective voice to increase equal access until we are heard. Please join us.
The Beast and Me
In 2000, something currently branded as Parkinson's Disease (the artist formerly known as Shaky Palsy), began to quietly attack virtually every corner of my life. In 2009, sitting in a neurologist's office in San Jose, Costa Rica, my wife and I were informed that I had PD, an incurable and progressive neurological disorder and, according to his statistics, I would be dead in ten years. There was at least some good news from the doctor as he handed me a "free sample" of and a prescription for Sinemet, the "gold standard" for PD for the last 52 years. The doctor wished me well and instructed me to make a follow up appointment in six months. It was a long, silent and tense drive back to our home upon the mountain where we had gleefully planned to spend the rest of our lives in an idyllic wonderland we had created after our successful early retirement.
The following eight years brought a slow yet steady decline in my motor and non-motor skills along with a quickly growing addiction to levodopa (Sinemet, Rytary, et al). Stripped of my skills, esteem, self-worth, dignity, focus and identity, I spiraled into a deep, all consuming depression I could not find a way out of. My wife, family, friends, career and spirit were disappearing into dense, all consuming fog. Unsuccessfully, I searched for any person or group whom I could identify with that could offer me any hope. I came to the conclusion that no one could ever understand what I was going through. My strongest desire was to be alone and sleep. I wasn't like any of the people I saw depicted. I wasn't old, wrinkled, rich or hobbling around on a cane. I was very different. One notable exception was the fledgling Michael J. Fox Foundation. They at least helped me understand what was going on in my brain and body and even seemed somewhat like me. MJF also offered hope that at least someone was out there looking for a cure beyond a fifty year old medicine that helped my symptoms but did nothing to slow or cure the beast.
The inevitable collision between my diminishing hope and undeniable progression occurred one afternoon as I sat alone in a tropical jungle at the painter's end of my rope. My choice was simple yet terrifying; attempt the seemingly impossible task of building a new life with this soul snatching monkey on my back or give up and stop living. As many before me, something spoke to me that afternoon and delivered a clear, concise message that rang pure and resonated truth. Once the door is opened, the light flows in.
Get off your ass. Learn to live well with this beast. Regain your wife, family, friends and purpose. Then, go help others along their path. A powerful voice with a poignant message. With the guidance of so many beautiful people who seemed to appear serendipitously, yet perfectly timed, I fought my way back to the wonderful life I lead today. The beast is certainly with me 24/7, but I'm driving today, not the beast. The beast and I, we will die together. I work for a cure for future generations. It will be too late for me.
Now it was my time to give back. I was determined to do as much as I could to guarantee no one else ever had to go through the PD experience I had. A strong and passionate voice was rapidly growing within me. I discovered skills and relevant experience that seemed to be credible and beneficial to others with PD and their families. My message began to resonate with others who began to seek coaching and mentoring from me. Searching for alliances to amplify my singular voice and to reach a larger audience, I was once again naive and disappointed with my inability to find a meaningful alliance with any of the major players in the PD community. They were fully engrossed with 180 degree changes attempting to salvage their very survival in the midst of a global pandemic. Simultaneously, I learned that Parkinson's Disease is indeed a business. In the US, about $10 billion of revenue was taken in for drugs alone in 2021.
Then one night in early 2021, the notion of Shaky Nation was born. After a year of scaling a tremendous and challenging learning curve accompanied by seemingly insurmountable roadblocks, here we are. Shaky Nation was launched in early 2022. We will see where it goes. Here to create a new community of PwP, their families and caregivers that includes all of us in an effort to create a vibrant community, help others and advocate a powerful agenda.
You are not alone. Shaky Nation was created to create and support a community for people and families with Parkinson's, share educational resources, provide easy access to vetted research, provide coaching and mentoring, and advocate for those suffering in an effort to restore hope, increase quality of life, and garner support to raise awareness. Every day, we find a way to laugh in the face of Parkinson's Disease and put it in its place - the history books.
Join us at Shaky Nation. We need one another. It's tough out there. Keep on rockin' in the free world.