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Sharing Stories: Quilted Journeys
By Sharon Standish
“Amazing” is a good word to describe my experience as part of the Parkinson’s Quilt Project. For this project, the Parkinson’s Disease Foundation (PDF) invited all people all over the world to create personal quilt panels — each of which provides an open window into that quilter’s journey living with or affected by Parkinson’s disease (PD). I am thankful to be united with other quilters to try to promote awareness and to support the drive for a cure.
As for my own journey, they all start somewhere, so let’s go to the beginning. I am 46 and was diagnosed with PD three years ago. Looking back I now realize, as I’m sure most of our readers do, that I had symptoms for a couple of years before I was diagnosed.
My first symptoms were pain and rigidity on my left side. My left shoulder was very painful, my left hand would not open all the way, I could not straighten my arm and my left leg would not cooperate. My family thought I had a stroke. I had a CT scan, but it showed nothing, which was frustrating. Then I went to physical therapy to build up strength. I was finally sent to a neurologist. He did not give me a diagnosis, but gave me a prescription for levodopa/carbidopa.
It was a miracle drug! I felt back to normal and I could not wait to thank the doctor. At my next appointment, I gave the doctor a hug and showed him how well the medication was working. Then he asked me to please sit down. His smile turned into a look of concern as he broke the news about my diagnosis of Parkinson’s.
It is hard to believe that it has only been three years since that day. Since then, I have experienced adverse side effects to most of my Parkinson’s medications and have been diagnosed with dystonia, sleep apnea and melanoma.
I have had many difficult moments on this journey with PD, but I have never been alone. To recognize the support and friendships I have had along the way, I made my first panel for the Parkinson’s Quilt in honor of Booth Gardner Parkinson’s Care Center, where I am thankful to be a patient. The panel’s crazy pattern, filled with twists and turns, represents my journey with PD. The words surrounding it reflect how my doctor and staff have helped me — with compassion, teamwork, support, education and hope — to navigate through the process and to enjoy the best quality of life possible.
I believe that on most journeys, the good moments outweigh the difficult ones. So, my second panel gives thanks for the positive effects of living with PD — to God for his mercy and inspiration; to my family for always being with me; to my friends for standing by me; and to the new bold attitude PD has given me. While my friends and family help me to weather the storms and look for the sunshine each day, my new attitude has made me much more willing to take a chance, to try something new. I find that I am being much more creative — sewing quilt panels, drawing, and writing stories (my first children’s book, Ganly Delivers Parcel and Post, was just published).
While this panel presented a difficult task, creating it, for me reflected the process of living with PD: it was at times challenging but also fun; tearful but also laughable; frustrating but also gratifying when the job was finished.
I am thankful for the opportunity to be creative and to PDF for empowering all of us, to show the world what those who live with PD can do to help one day to make a cure possible.
Sharon Standish resides in Marysville, Washington.
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To see more panels or to learn about renting sections of the quilt (beginning January 2011), visit the Parkinson's Quilt Project page.