I am one of the thousands of faces of Early Onset Parkinson's Disease. I started this blog in 2014 before I turned 50 years old. I was formally diagnosed with PD in December 2013 after struggling since the early 2000's with an unknown intruder that had been slowly disrupting my life.
I created a dream adult life. Was happily married, became a successful business owner, had both summer and winter homes, enjoyed luxury travel and all the benefits that go with "living the dream." I had no idea what lay ahead of me so in hindsight did not fully appreciate each blissful day that was free of tremor, the amazing balance that allowed me to navigate the narrowest of passages and dance around freely without a care, the benefits of a photographic memory with instant recall, and the ability to multitask at a superhuman level and rationalize at the speed of light. That was before PD.
After PD: The symptoms were subtle and drawn out. We spent close to $100,000 out of pocket (not including bills paid by insurance) before a DAT scan made the discovery. We spent years chasing medical specialists from every discipline (including many of the supposedly "best-of-the-best" practitioners), a variety of holistic healers, naturopaths and alternative medicine gurus, psychologists, psychiatrists and hypnotists, endured six (6) Emergency Room visits with two admissions, fifteen brain MRIs (with and without contrast), EMGs and EKGs (along with dozens of other three-letter tests), prescribed every pill, vitamin, mineral & herb known to science, was placed on an agonizing gauntlet of specialty diets (from gluten free to dairy free to all protein to no protein - you name it) - all of it a waste of time. PD ignored it all and kept its steady march of immobilizing the left side of my body.
I was told it was all in my head; that I was imagining this was happening to me. One PCP actually wrote in my chart that I was a "psychiatric patient" and refused to see me again until I was cleared by the local psychiatrist. Another so-called "expert" associate professor of the movement disorder department of a major PD research university advised me that there was "no way" I had PD. In her opinion I was suffering from an extreme anxiety disorder and needed only to take up meditation and yoga. She refused to do any tests on me so that she "did not waste my money". After enduring years of this kind of treatment I believe I became convinced that I was losing my mind and toward the end only wanted to be sent away until someone could SAVE ME!!
Someone did save me. A brilliant movement disorder neurologist in South Florida who became in that moment my personal angel. Read about him and my five year odyssey to get to that diagnosis along with highs and lows in the years that have followed right here.
If you are reading this and you are PD free, I implore you to be extra grateful every night before you sleep that you do not suffer like us and pray for those that do.
Feel free to connect with me, especially if you have Early Onset Parkinsons. My goal with this blog is to create a space where we are open and honest, find and give encouragement, and share comments, tips, and tricks to help us not only survive, but thrive through our individual journeys. Remember to give generously to the Michael J. Fox Foundation for Parkinson's Research whenever you have an opportunity. The cure is coming and it will be within our lifetime. Thank you in advance for being a part of my journey.
Lisa Vullo ❤️❤️❤️
(formerly Lisa Borkowski)
You can also follow me at "Help Take Back My Life in 2016" (aka Lisa's Super Hero PD Support Team) on Facebook