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By Sandy Cohen
I was diagnosed with Young-onset Parkinson's disease when I was 31 years old. However, I was symptomatic for two years before my official diagnosis. It was after my husband and I decided to try to get pregnant that I noticed a slight tremor in my right hand. I went through many physicians such as my primary care doctor, a pain management specialist, an arthritis specialist, and then finally a neurologist. Due to my pregnancy, I was limited in what type of tests and scans I could take to rule out other major medical conditions. My symptoms became a little more prominent during my normal pregnancy and birth of my son in April 2002. I was given the option to try Requip® to see if it would relieve my symptoms, but I chose not to because I had strong feelings about breast-feeding him for as long as I could.
So almost 10 months later, my neurologist referred me to a movement disorder specialist to confirm her predicted diagnosis. She was hesitant because in her words, “I did not fit the standard profile” of a Parkinson's patient. After my husband and I met with a movement disorder specialist at the University of Maryland, the diagnosis was “easy.” I had Parkinson's isease. We left that initial appointment with tears and wonderment of this “curve ball” that was thrown into our lives. My symptoms were very mild and at the time of diagnosis, I was able to manage the tremors and slight rigidity on my right side without medication. We (my physician, spouse and I) decided that we should try to “hold-off ” on starting a lifetime medication regimen because we wanted to expand our family.
At the time of diagnosis in 2003, I was a special education technology specialist for Fairfax County Public Schools system. After my son was born in 2002, I had returned to work on a part-time basis until March of 2004 at which time I increased my time to full-time status. At that time, my symptoms were still mild enough to hold off on taking medication.
I became pregnant with our daughter in March 2005. During the pregnancy, my Parkinson’s symptoms became exacerbated and I went on short-term and maternity leave at seven months pregnant. Our daughter was born healthy in December 2005. I again felt a strong desire to breast-feed her for at least six months. Those were the hardest months because my symptoms moved from just unilateral to bilateral. They began to affect my daily life. I started my regime of medication in July 2006 and returned to work half-time, while on partial disability.
My initial response to medication was amazing – symptoms such as tremors disappeared and my body moved “freely” again. I also started an exercise program that focused on building strength in my arms and legs. However, the anxiety of being a mother of a two children, a preschooler and toddler, took its toll of my body. So, my care taker team of my husband, my parents, my supervisor and physician felt it was necessary for me to go on full-time disability so that I could manage my health without the stressors of work and be a “healthier” and stronger mom for my young children. So began my life as a stay-at-home mom.
Even as a young child, I have always been creative and enjoyed the “arts.” I enjoyed drawing and sketching home layouts, played several musical instruments even through college, and loved photography. My father shared his knowledge and hobby of film photography during my childhood. When I met my husband and father-in-law, my passion for photography was again ignited. In this age of digital photography and “image stabilization,” I began taking photographs of nature, especially flowers. Why nature? I found an inner beauty in each individual flower, which gave me the strength to live my life to its fullest and to be a strong advocate of not denying my health condition and allowing myself to enjoy each day knowing that my condition will not “win the battle” at this time in my life. However, even though my optimism is strong, there are some “bad” days and that's when I find therapeutic comfort in photographing nature and the undoubtable love from my family to get through those tough times.
My motto has always been “life throws each one of us unexpected curve balls, and we have to swing with all of our might” to live each day to its fullest knowing that there will be a cure for Parkinson's hopefully in the next decade. I classify myself as a lucky person because my “young” and otherwise healthy body and strong mind and outlook on life will allow me to take advantage of any potential cure or medical advances that can stop or slow the progression of Parkinson's disease.
Personal Story of Sandra Cohen, currently living in Alexandria, VA, with a wonderful and caring husband and two amazing kids.
I am dedicating this story to my children who have walked beside me with their own cameras (including a Barbie cell phone toy that has a camera feature) and enjoy the beauty that surrounds them each day. I love both of you, Jared and Ilana–my blooming photographers.