This is how this intro used to begin: 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 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!!
Upon returning to South Florida, a visit to a progressive movement disorder neurologist in South Florida sent me for a DATSCAN and the diagnosis of Early Onset Parkinsons. 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.
Updated July 2018: You'll also read about the years after my diagnosis. The triumphs and turbulent times dealing with my disease; always staying as positive and motivational as I trekked through a life under constant change. You'll read that I went back to work, the months I was caregiver for my dad during his terminal illness, the months I struggled with the decision to divorce my husband after 23 years and how I regained my footing.
My life has been in a constant state of flux. You'll learn about my struggles and my accomplishments and my never-ending pledge to NEVER GIVE UP, NEVER GIVE IN. Parkinsons is not going to take me down. With that positive resolve, I have since re-married, help to help raise two children (I've never been a mom before and have found I'm really good at it), and stumbled upon an incredible employer who has the heart of a lion to take on a Stage 4 Early Onset PD patient, returning me to wonderful career with benefits that will cushion me if I fall. I live in beautiful, noisy, happy home with my own family now. I am finally at balance in a good place and in peace. All of this happened in the last seven months. I almost feel the Universe was waiting for me to get there and has now rewarded me.
June 20, 2018 - a fateful day that dropped a bombshell bringing my diagnosis into question. "You are telling me I DON'T have Parkinson's Disease? How can that be?" I said.
If you are just now joining my journey I encourage you to read through my blog. I've been through hell and back again, multiple times, and it may be as a result of all the chaos and trauma witnessed over the last 54 years. All coming into a soft landing as I begin to calm my life down, find balance, and start to reveal a true diagnosis. One that is treatable and curable. (I can't believe I just wrote that).
If your story sounds like mine, I encourage you to ask your medical professionals for more information on FND. Read my blog for more information. As I wean off of the high doses of PD meds and begin treatment for my new diagnosis, I will report my experiences here. This is one crazy ride I'm on. My life was definitely never meant to be small. My only hope and prayer is to pay my experiences forward and help someone else before they have to suffer as I did. This could all be about mental health and what your brain will do when it decides to take over because you can't or won't. I've never seen life clearer before today. I have a feeling that balance will lead me to the happy ending I always dreamed of. Its going to take hard work to gain back my physical and mental strength. But it is one fight worth starting. The first doctors were closer to the truth. It may just be all in my head. I can't wait to find out how this story ends!!!!
Lisa Vullo ❤️❤️❤️
(formerly Lisa Borkowski)