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My nightmare began in the spring of 1999, with the shaking of my left pinky finger. I use to laugh it off, attributing it to our new local Starbucks. I'd say to my friends, "Hey look guys, me and Michael J. Fox." To which my girlfriends would reply, "Well at least you keep good company."
Soon, though, I would learn that Young Onset Parkinson Disease is no joke! As a young Mother of two, I was becoming more and more aware that something was definitely wrong. My left arm would no longer swing when I walked and I began to drag my left foot. The doctor thought maybe I had a stroke during a migraine headache attack? But, after my MRI's and CT scans turned up nothing, about a year later, I was diagnosed with YOPD. I was 36 years young.
The disease has brought with it a lot of pain, both emotionally and physically. Having been originally told there was no pain associated with PD; I wondered who came up with that one. The stiffness in my body and the pain in my feet from cramping and curling were extremely painful. The toe curling began to happen every morning and every time I slightly miss timed my meds. I found out later, I was experiencing "on/off" fluctuations.
Like so many others PD sufferers, about five years into the disease, I lost my marriage of 23 years. By the age of 45, I was divorced from my high school sweet heart! After all, he didn't sign up for this! Now, I even had to share custody of my two children too. I had been a stay-at-home Mom and cherished my job as a Wife and Mother.
I was put on anti-depressants, the doctor's were not sure if the depression was a symptom of my disease or my crumbling world. Who could blame my husband, after all, I began pulling all nighters; rearranging furniture, painting wall murals on ceilings and chatting online with other Parkinson patients into the wee hours of the morning. I also ran up credit card debt and became very compulsive, a symptom, I later learned that was a side effect of one of my prescribed medications. I felt like I had to do my living now because tomorrow, well, I might not even be able to get out of bed much less walk to the bathroom.
Right around the time of my divorce, a girlfriend and neighbor thought I might want to join her and learn how to surf. Soon surfing became a passion of mine and part of my therapy. Getting out in the sunshine and visiting with my fellow surfers in the lineup kept my spirits high. And since balance is a big issue with PD and surfing, going to the beach became part of my regular physical therapy routine. Somehow, the movement of the ocean allowed me to forget for a time that I had PD. It was my safe haven, I could surf and if by chance I fell, it was only water. Life with PD though, was becoming more and more difficult, so my Neurologist referred me to a Neurosurgeon.
Dr. Binder performed Deep Brain Stimulation surgery on me 3 years ago. DBS has helped me tremendously with the painful toe curling and has given me more "on" time. Now, with the advent of Stand UP Paddle boards and my good friend John Harding, I will be enjoying the ocean and its therapeutic effects a lot longer. John Harding is the shaper of South County Stand Up Paddle Boards, they are extra wide and extra thick SUP Boards. John's boards give me more stability than regular SUP boards and they surf like no other! I no longer have to worry about jumping up to catch a wave while trying to keep my balance. I am already up. As the wave moves and builds below me, I begin to push the ocean water behind me with my ultra light carbon fiber paddle. I feel the familiar surge of water and downward slope of the wave as I start cruising down the line on my South County SUP board, forgetting once again, just for a moment that I even have Parkinson Disease.
Then I remember what PD has given me...A sense of time and appreciation for the simple things, like the rush of riding a long, slowly curling, left wave, perfect for goofy footed me. So what began as a nightmare back in 1999, let us hope, will turn into a dream in 2011. For it is my dream that we will someday find a cure for those suffering from Parkinson Disease. Thank you Michael J.Fox for bringing awareness to this disease and making it easier to tell my friends and family.Posted by renee Drust on April 08, 2011